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A Primer on Health-Related Quality of Life in Chronic Pain Medicine
Abstract
Pain is a complex and individual experience that is often difficult for patients to fully describe using a conventional pain intensity scale. Health-related quality of life is an additional metric by which to assess patients' subjective perspective on their chronic pain experience and its adverse effect on their lives. Health-related quality of life encompasses those aspects of health and well-being valued by patients, specifically, their physical, emotional, and cognitive function, and their ability to participate in meaningful activities within their family, workplace, and community.
A methodical search of the medical literature was undertaken to identify the most commonly applied health-related quality of life measurement instruments. These measurement instruments were then assessed within the context of chronic pain medicine clinical practice and research.
This primer provides an overview of the concept of health-related quality of life as a clinical measurement and the specific means by which to measure health-related quality of life across various cultures in adults, as well as in children and adolescents, suffering from chronic pain conditions.
We have the ability and impetus to routinely assess adult and pediatric health-related quality of life in chronic pain medicine. However, further attention needs to be focused on overcoming barriers to the more widespread measurement of health-related quality of life. A valid preference-based, utility measure of health-related quality of life is a requirement for performing a cost-utility (cost-effectiveness) analysis and undertaking formal decision analysis modeling.
... Measuring healthrelated quality of life (HRQoL) is a way to assess subjective experience of the adverse effects of a medical condition on the lives of those affected. HRQoL relates to physical, cognitive, and emotional functions and the ability to participate in meaningful activities within family, workplace, and community (Vetter, 2007). ...
... Several different HRQoL instruments have been developed and they are categorized as being either generic or condition-specific measures (Vetter, 2007). The number of studies addressing HRQoL and chronic orofacial pain is scarce and most of them have used condition-specific HRQoL measures making it difficult to perform comparisons of chronic orofacial pain with other pain conditions. ...
Background:
Health-related quality of life (HRQoL) of orofacial pain patients is lower than that of the general population and impaired in multiple dimensions. The aim of the present study was to investigate HRQoL of orofacial pain patients in comparison with patients suffering from other chronic pain disorders.
Materials and methods:
One hundred and fifty-one tertiary care facial pain patients (mean age, 50 years; standard deviation [SD], 15; 119 females), were compared with 312 other non-cancer chronic pain patients (mean age, 46 years; SD, 13; 204 women), recruited from three multidisciplinary pain clinics in Finland. The groups were compared using the 15D, and pain-related measures such as pain interference, pain acceptance, anxiety, depression, and sleep. Statistical comparisons between groups were done using t test, χ2 test, or analysis of covariance. Multivariate linear regression analysis was used to study whether pain-related aspects influencing HRQoL are similar between the patient groups.
Results:
The 15D score was significantly higher in facial pain patients (0.823; SD, 0.114) indicating better HRQoL in comparison with other chronic pain patients (0.732; SD, 0.107) (p < .001). The 15D profiles of studied populations resembled each other but orofacial pain patients showed significantly higher scores for most individual 15D dimensions. Dimensions regarding discomfort and symptoms and sleep were most affected in both groups. Orofacial pain patients showed less psychosocial disability and better acceptance of their pain. Pain acceptance was a weaker explanatory factor of HRQoL in orofacial pain patients.
Conclusion:
Compared to other non-cancer chronic pain, chronic pain in the orofacial area causes less impairment in HRQoL. Orofacial pain patients showed less psychosocial disability and better pain acceptance.
... Instruments are generally divided into three basic categories: generic, conditionspecific or preference-based (Vetter, 2007 (Vetter, 2007). ...
... Instruments are generally divided into three basic categories: generic, conditionspecific or preference-based (Vetter, 2007 (Vetter, 2007). ...
... Chronic pain is a common and disabling condition, which can significantly affect quality of life (QoL) [1][2][3][4][5]. A variety of definitions may be used to define chronic pain; the International Association for the Study of Pain defines it as pain without apparent biological value that has persisted beyond the normal tissue healing time (usually taken to be 3 months) [6]. ...
... Chronic pain can stem from a variety of underlying conditions, which may be musculoskeletal, neuropathic, ischaemic or cancer related [2,10], and may be seen as a biopsychosocial phenomenon in which pain interacts with psychosocial factors [11]. Chronic pain is also strongly associated with development of comorbidities, including depression and anxiety, impaired sleep and alterations in immune function [5,[12][13][14][15]. ...
In patients managed with opioids for chronic pain, opioid-induced bowel dysfunction-specifically, opioid-induced constipation (OIC)-is a common side effect, which has a significant impact on quality of life (QoL). The most recent developments for management of OIC are opioid antagonists, including naloxone, a competitive antagonist of peripheral opioid receptors that reverses opioid-induced peripheral gastrointestinal (GI) effects. A prolonged-release formulation of naloxone is available in combination with oxycodone (OXN PR). To review the specific role of OXN PR in the management of chronic pain and OIC and its impact on QoL and healthcare costs, a review of available relevant literature was conducted. Healthcare costs can be up to ten times higher for patients with GI events than for those without. Assessment of QoL in patients with OIC is essential, and multiple tools for its evaluation are available. The Bowel Function Index (BFI), a tool that was specifically developed and validated to measure bowel function in patients with OIC, can be an indication of QoL. In patients with moderate-to-severe chronic pain, randomized trials have demonstrated that OXN PR has equal analgesic efficacy and safety, but results in improved bowel function, compared with prolonged-release oxycodone (Oxy PR) alone. In conclusion, randomized studies using the BFI, as well as real-world clinical practice observations, have demonstrated improved QoL for patients taking OXN PR. This combination should allow more patients to benefit from the analgesic efficacy of opioid therapy and should minimize the side effects of constipation that correspond to improvements in QoL and healthcare offsets.
... HRQoL has been described as the impact of health on people's ability to function and the perceived wellbeing in physical, social, and psychological domains of life (Leidy, Revicki, & Geneste, 1999;Naughton & Shumaker, 2003;Nordlund, Ekberg, & Kristenson, 2005;Revicki et al., 2000), particularly the ability to participate in meaningful activities within the family, workplace, and community (Vetter, 2007). HRQoL is an important indicator of how chronic pain influences the individual's daily life and of the effectiveness of pain treatment (Moons, Budts, & De Geest, 2006). ...
... Health-Related Quality of Life. The Short Form 36 Health Survey (SF-36v2) is a 36-item self-rating questionnaire developed to assess some primary aspects of HRQoL, perceived health status in various health conditions, and diseases (Beaton, Hogg-Johnson, & Bombardier, 1997;Vetter, 2007). The instrument comprises 36 multiple choice questions, and responses vary from yes or no answers to a six-point rating scale (ordinal) (Beaton et al., 1997). ...
Aims
To investigate health care utilization in relation to chronic pain.
Methods
In this cross-sectional study postal questionnaires, measuring sociodemographic characteristics, pain, health related quality of life (HRQoL), attitudes to pain and health care utilization past six months, were sent to 4500 individuals aged 20–70 years, randomly drawn from the Icelandic National Registry.
Results
Total response rate was 36.9% ( n = 1589) and was higher among older individuals and women. Nearly one half of respondents (47.5%, n = 754) reported chronic pain (≥3 months) with mean duration of 9.3 years (median = 6.0 years, SD = 10.0) and 57.5% of them had consulted health care service for their pain past six months. Use of pain related health care was significantly related to attitudes towards pain and individuals with pain in chest, upper extremities, hips and lower extremities consulted health care for their pain significantly more often than people with other pain locations. Pain related health care utilization was not significantly related to sociodemographic characteristics. There was a significant difference in both Physical (PCS) and Mental (MCS) component HRQoL scales as well as nature of pain (severity, interference, spread and pattern), between individuals who had consulted health care for their pain and those who had not. However, when these relationships were tested by using logistic regression models, only PCS and pain interference remained significant in this relationship.
Conclusions
Chronic pain related health care utilization is related to several pain characteristics and its influence on daily life, where interference and physical components of HRQoL are most important.
... HRQoL has been described as the impact of health on people's ability to function and the perceived wellbeing in physical, social, and psychological domains of life (Leidy, Revicki, & Geneste, 1999;Naughton & Shumaker, 2003;Nordlund, Ekberg, & Kristenson, 2005;Revicki et al., 2000), particularly the ability to participate in meaningful activities within the family, workplace, and community (Vetter, 2007). HRQoL is an important indicator of how chronic pain influences the individual's daily life and of the effectiveness of pain treatment (Moons, Budts, & De Geest, 2006). ...
... Health-Related Quality of Life. The Short Form 36 Health Survey (SF-36v2) is a 36-item self-rating questionnaire developed to assess some primary aspects of HRQoL, perceived health status in various health conditions, and diseases (Beaton, Hogg-Johnson, & Bombardier, 1997;Vetter, 2007). The instrument comprises 36 multiple choice questions, and responses vary from yes or no answers to a six-point rating scale (ordinal) (Beaton et al., 1997). ...
To establish the scope of the problem of chronic pain in the population, we need to extend the focus on prevalence, the most frequently studied factor. Among other important factors is the complex relationship between the temporal characteristics of pain and their impact on peoples' lives. The purpose of the present study was to describe the characteristics of chronic pain, including pattern, severity, location, spread, and duration, in a population-based sample and to investigate the relationships between pain pattern and impact on the individual's life measured by interference with life and health-related quality of life (HRQoL). In this cross-sectional study, a postal questionnaire measuring pain characteristics, life interference (Brief Pain Inventory), and HRQoL (Short Form 36 Health Survey), was sent to a sample of 4,500 individuals, randomly drawn from the Icelandic National Register. The total response rate was 36.9% and was significantly higher among native Icelanders (40.6%) than individuals of non-Icelandic origin (8.6%).The prevalence of chronic pain (≥3 months) was 47.5% with mean duration of 9.3 years, and 31.9% reported constant pain. Participants with constant pain reported higher life interference scores and less HRQoL than participants with intermittent or periodic pain. Hierarchical stepwise regression analyses showed that pain pattern and severity accounted for 44.4% variance for life interference. The range of the variances for these variables for the five domains of HRQoL was from 7.3% (mental health) to 53.3% (bodily pain). Pain pattern and severity are the most significant predictors of the impact of chronic pain on individual's daily life.
... Studies consistently report reduced quality of life in patients with neuropathic pain [205]. No gold standard exists to study HRQoL [470]. The choice of a HRQoL instrument depends upon its ultimate purpose. ...
... Preference-based tools, EQ-5D, HUI12, HUI13, and SF-6D (derived from SF-36) incorporate patient opinion of the utility value of a particular health state, and are suitable for cost-utility analyses and can be used for comparisons across diseases [470]. Their mutual correlations are low suggesting they measure somewhat different aspects of HRQoL [267,279]. ...
This is a revision of guidelines, originally published in 2004, for the assessment of patients with neuropathic pain. Neuropathic pain is defined as pain arising as a direct consequence of a lesion or disease affecting the somatosensory system either at peripheral or central level.Screening questionnaires are suitable for identifying potential patients with neuropathic pain, but further validation of them is needed for epidemiological purposes. Clinical examination, including accurate sensory examination, is the basis of neuropathic pain diagnosis. For more accurate sensory profiling, quantitative sensory testing is recommended for selected cases in clinic, including the diagnosis of small fiber neuropathies and for research purposes.Measurement of trigeminal reflexes mediated by A-beta fibers can be used to differentiate symptomatic trigeminal neuralgia from classical trigeminal neuralgia. Measurement of laser-evoked potentials is useful for assessing function of the A-delta fiber pathways in patients with neuropathic pain. Functional brain imaging is not currently useful for individual patients in clinical practice, but is an interesting research tool. Skin biopsy to measure the intraepidermal nerve fiber density should be performed in patients with clinical signs of small fiber dysfunction.The intensity of pain and treatment effect (both in clinic and trials) should be assessed with numerical rating scale or visual analog scale. For future neuropathic pain trials, pain relief scales, patient and clinician global impression of change, the proportion of responders (50% and 30% pain relief), validated neuropathic pain quality measures and assessment of sleep, mood, functional capacity and quality of life are recommended.
... The goal of RA treatment is not only based on remission of the disease, but also on minimizing the consequences of the disease in order to increase the functional ability and quality of life of patients (4,5). In this regard, quality of life is used as a subjective unit of measurement of the condition of patients suffering from this disease (6). The Health Assessment Questionnaire (HAQ) is the most commonly used questionnaire to assess the functional ability of patients with RA. ...
... Recent definitions acknowledge that many of the common musculoskeletal pain conditions are increasingly conceived as 'a disease in their own right', debuting either as chronic primary pain or chronic secondary pain when caused by an underlying disease [1]. Chronic pain has negative effects on numerous aspects of life and impacts on physical and emotional functioning as well as quality of life [2][3][4][5]. Typically, aerobic capacity and functional levels are gradually reduced, leading to physical activity and exercise becoming essential treatment components [6]. ...
Background:
Chronic pain negatively influences most aspects of life, including aerobic capacity and physical function. The "eVISualisation of physical activity and pain" (eVIS) intervention was developed to facilitate individualized physical activity for treatment in interdisciplinary pain rehabilitation programs (IPRPs). The objective of this study was to evaluate the content validity and feasibility of the eVIS intervention prior to an effectiveness trial.
Methods:
In order to determine pre-clinical content validity, experts (n = 10) (patients, caregivers, researchers) participated in three assessment rounds using a Likert-scale survey where relevance, simplicity, and safety were rated, whereafter the intervention was revised. Item-content validity index (I-CVI), average, and overall CVI were used to quantify ratings. To determine content validity and feasibility in the clinical context, experts (n = 8) (patients and physiotherapists) assessed eVIS after a 2-3-week test trial, with the feasibility aspects acceptability, demand, implementation, limited efficacy-testing, and practicality in focus. Additional expert interviews (with physiotherapists, physicians) were conducted on two incomplete areas.
Results:
The intervention was iteratively revised and refined throughout the study. After three assessment and revision rounds, the I-CVI ratings for relevance, simplicity, and safety ranged between 0.88 and 1.00 (≥0.78) in most items, giving eVIS "excellent" content validity. In the IPRP context, the intervention emerged as valid and feasible. Additional interviews further contributed to its content validity and clinical feasibility.
Conclusions:
The proposed domains and features of the eVIS intervention are deemed valid in its content and feasible in the IPRP context. The consecutive step-by-step evaluation process enabled careful intervention development with revisions to be made in close collaboration with stakeholders. Findings implicate a robust base ahead of the forthcoming effectiveness trial.
... Chronic musculoskeletal pain (>3 months), including neck/shoulder/back pain or widespread pain, is a major global health and socioeconomic burden. 1 2 Living with chronic pain is often associated with reduced levels of well-being, and the health-related quality of life of this group has been reported to be among the lowest of any medical condition. 3 To date, physical activity (ie, any bodily Strengths and limitations of this study ► A proceeding pilot study will enable improvements of design and feasibility of a subsequent randomised controlled clinical trial. ► The eVISualisation intervention has been developed, evaluated and improved, based on data provided from patients, clinicians and researchers in different fields. ...
Introduction
Living with chronic pain often involves negative consequences. Interdisciplinary Pain Rehabilitation Programmes (IPRP) is considered superior to single-treatment measures in patients with chronic pain. Despite this, effects emerge suboptimal and more than 20% of patients deteriorate in patient-reported physical health outcomes after IPRP. A novel e-Health intervention, eVISualisation (eVIS) of physical activity and pain, was systematically developed to facilitate individualisation of physical activity levels. By adding elements of data collection, visualisation and communication of objectively measured physical activity and patient-reported outcomes (pain intensity, interference of pain, pharmaceutical consumption) to existing treatment modalities in IPRP, the IPRP team acquires prerequisites to adapt advice and physical activity prescriptions and to evaluate set activity goals. The overall aim is twofold. First, the aim is to evaluate the feasibility of the subsequent registry-based randomised controlled clinical trial (R-RCT). Second, the aim is to prospectively evaluate the effectiveness of the eVIS-intervention as a supplement to IPRP on our defined primary (physical health) and secondary outcomes.
Methods and analysis
In the R-RCT, recruitment of 400 patients with chronic pain will be performed at 15 IPRP units. A random allocation to either IPRP + eVIS or to control group that will receive IPRP only will be performed. Data from the initial 30 participants completing the study period (6 months) will be included in a pilot study, where key feasibility outcomes (recruitment, randomisation, implementation, treatment integrity, data collection procedure, preliminary outcome measures) will be evaluated. Outcome variables will be extracted from the web application Pain And TRaining ON-line (PATRON) and from six national registries. Multivariate statistics and repeated measure analyses will be performed. Quality-adjusted life years and incremental cost-effectiveness ratio will be calculated for cost-effectiveness evaluation.
Ethics/dissemination
The Swedish Ethics Review Board granted approval (Dnr 2021/02109). Results will be disseminated through peer-reviewed journals.
Trial registration number
NCT05009459 . Protocol V.1.
... Health-related quality of life (HRQOL) describes the impact of health on people's ability to function and participate in meaningful activities within the family, workplace, and community [6,7]. Measuring HRQOL is an important outcome in studies of patients with chronic pain [6,8,9] and is another way to assess patients' subjective perspectives on their pain experience and its impact on their lives [6]. ...
Multidisciplinary pain-management programs have the potential to decrease pain intensity, improve health-related quality of life (HRQOL), and increase sleep quality. In this longitudinal prospective cohort study, the aim was to investigate the long-term effects of multidisciplinary pain rehabilitation interventions in Iceland. More precisely, we (a) explored and described how individuals with chronic pain evaluated their pain severity, sleep, and HRQOL at pre-treatment and at one-year follow-up and (b) examined what predicted the participants’ one-year follow-up HRQOL. Seventy-nine patients aged 20–68 years, most of whom were women (85%), responded. The participants scored their pain lower at one-year follow-up (p < 0.001). According to their response, most of them had disrupted sleep, mainly because of pain. One year after the treatment, more participants slept through the night (p = 0.004), and their HRQOL increased. Higher pre-treatment mental component summary (MCS) scores and having pursued higher education predicted higher MCS scores at one-year follow-up, and higher pre-treatment physical component summary (PCS) scores predicted higher PCS scores at one-year follow-up. Sleep problems, being a woman, and having children younger than 18 years of age predicted lower MCS scores at one-year follow-up. These findings are suggestive that patients should be examined with respect to their mental status, and it could be beneficial if they received some professional support after completing the intervention.
... Statistical analyses were performed using SPSS, version 22, and a range of tests including frequencies, correlations, t tests, Mann-Whitney U tests, and McNemar's tests. P < 0.05 was considered statistically significant, and effect size values >0.8 were considered large [49,50]. ...
Objective
To measure the impact of the multidisciplinary Turning Pain Into Gain program in people experiencing chronic pain of any etiology.
Methods
A mixed-methods observational study of 252 participants was used to explore the impact of Turning Pain Into Gain on medication use; quality of life and functioning, as measured by the Pain Self-Efficacy Questionnaire; and self-reported hospitalizations between 2015 and 2016.
Results
Responses from 178 participants showed an increased alignment with Australian pain medication guidelines (e.g., a 7.3% reduction in paracetamol duplication was reported with a concurrent 5.1% rise in the administration of sustained-release paracetamol formulations); improved Pain Self-Efficacy Questionnaire scores from 23.1 (out of a possible score of 60) preprogram to 35.3 postprogram; and a reduction in self-reported hospitalizations from 50 cases in the 12 months preprogram to 11 cases in the 12 months postprogram.
Conclusions
Positive medication, Pain Self-Efficacy Questionnaire, and hospitalization changes provide evidence for the broader implementation of similar patient-centered programs to promote more holistic management of diverse types of chronic pain in primary care. Reduced hospitalization reflects potential for this intervention to be cost-effective, which could be investigated further.
... 39 Another review identified the most commonly used generic HRQOL instruments from 2000 to 2006 and the profile-type scales were the Dartmouth COOP Functional Assessment Charts, the NHP, the SF-36, the Sickness Impact Profile, and the WHOQOL-100. 40 All of the instruments identified in the 2 reviews were also identified in the current search, while the current search also identified the abbreviated WHOQOL-100 (WHOQOL-BREF). The remaining instruments identified by the current search either focused on QOL broadly rather than HRQOL, or focused on a specific population such as older adults. ...
Objective: To describe health-related quality of life (HRQOL) conceptual frameworks, critically review 3 commonly used HRQOL scales relevant to adults with chronic conditions in primary care settings, and make recommendations for using HRQOL scales in primary care practice.
Data sources: Information was accessed regarding HRQOL conceptual and theoretical approaches. A comprehensive search strategy identified 3 commonly used scales that met the review criteria and evidence regarding use of the scales in adults with chronic conditions in community settings.
Scale selection: Scales were selected if they were designed for clinical use; were easy to administer; were generic and broad in content areas; and contained some individualized items. Scales were critiqued according to content development, theoretical basis, psychometric properties, scoring, feasibility, the concepts being measured, and the number of items that measured an individualized concept.
Synthesis: Early HRQOL approaches focused on health and functional status while recent approaches incorporate individualized concepts such as the person’s own values and the environment. The abbreviated World Health Organization Quality of Life Scale (WHOQOL-BREF), the 36-Item Short Form Health Survey (SF-36), and the Duke Health Profile were critiqued. All address physical, mental, and social domains, while the WHOQOL-BREF also addresses environment. Psychometric evidence supports use of the SF-36 and WHOQOL-BREF with this population. The SF-36 has the most evidence of responsiveness but has some floor and ceiling effects, while the WHOQOL-BREF does not appear to have floor or ceiling effects but has limited evidence of responsiveness. The WHOQOL-BREF has the highest proportion of individualized items.
Conclusion: Measurement of HRQOL in adults with chronic conditions can support patient management and contribute to primary care service evaluation. Scales that are based on a broad definition of health and that address the individualized nature of HRQOL are appropriate for these purposes, such as the WHOQOL-BREF. Psychometric evidence supports using this scale for adults with chronic conditions; more information about its responsiveness is needed.
... The SF-36 consists of 36 items and 8 domains relating to an individual's physical and mental status (Hart, 1999;Keller, Majkut, Kosinski, & Ware, 1999;Peek et al., 2004;Vetter, 2007). The Physical Composite Scale (PCS) is a summary of physical functioning (PF), role limitation because of physical function (RP), bodily pain (BP), and general health (GH) ratings. ...
To examine the longitudinal association between levels of lower extremity performance (LEP) and health-related quality of life (HRQoL) in older Mexican Americans aged 72 years or older participating in the Hispanic Established Population for the Epidemiological Study of the Elderly (2000-2006).
LEP was measured in 621 non-institutionalized participants with the Short Physical Performance Battery (SPPB). Participants were divided into high (SPPB score 10-12), intermediate (SPPB score 7-9), and low (SPPB score 0-6) groups based on LEP. HRQoL was assessed using the Medical Outcomes Study Short Form (SF-36), which includes a Physical Composite Scale (PCS) and a Mental Composite Scale (MCS).
Participants in the high LEP group had slower rates of decline in the PCS, and those in the intermediate LEP group had slower rates of decline in the MCS score over time.
Increased LEP was associated with slower rates of decline in physical and mental HRQoL in older Mexican Americans.
© The Author(s) 2015.
... Numerous tools have been developed to measure HRQoL that have been applied in various fields [20]. These tools can be classified into function-based and preference-based tools [14], and the measurement based on preference is referred to as "utility" [15]. ...
The global health care in the 21st century is characterized as evidence-based medicine (EBM), patient-centered care, and cost effectiveness. The EBM recommends that the clinical decision should be made with integrating patient's preference with the best evidences and physician's experiences. The Center for Value-Based Medicine suggested the Value-Based Medicine (VBM) as the practice of medicine based upon the patient-perceived value conferred by an intervention. In other words, VBM starts with the best evidence-based data and converts the data to patient value-based form. VBM allows clinicians to deliver higher quality patient care than EBM alone. The final goals of VBM are to improve quality of healthcare and to use healthcare resources efficiently. This paper introduces the concepts and application of VBM and suggests some strategies for activating the VBM research.
... Our results are consistent with other results obtained in various illness states [24][25][26]. Pain can considerably limit physical activity and enhance mental health decreasing [26,27]. BU lesion is painless at the beginning of the disease because of detrimental effect of mycolactone on the nerves [28] but becomes painful with treatment in particular after stripping that denudes the nerve endings and exposes them to the noxious stimuli. ...
Background: The implementation of the antimicrobial therapy greatly improved Buruli Ulcer (BU) care. Nevertheless, the disease still imposes significant burden. In rural endemic areas, many patients are being healed from the disease with disabling sequels. They are living without social assistance in a context of poverty. Various researches have evaluated the therapeutic modalities that are used to control the BU disease, but any study on the quality of life (QOL) of the patients healed from BU has been reported. Methodology/Principal Findings: A total of 105 patients healed from Buruli ulcer and, 105 control subjects without Buruli ulcer history are enrolled in the study after giving well-informed consent. The Medical Outcome Study Short Form (SF-36) is administrated to access their QOL. The study is approved by the Ethical committee of the Faculty of Health Sciences of the University of Abomey-Calavi (UAC). All the patients have a weak QOL than control subjects. The deterioration affects their physical functioning, their physical role, their emotional role and their mental health (p<0.05). However, in spite of their low QOL, subjects aged from 40 years old and over (p = 0.003), and subjects married, divorced or widowed (p = 0.01) work physically better than the other subgroups, even if they are mentally weaker. In a Spearman correlation test, we have observed significant relationships of socio-economic variable with the decrease of SF-36 subscale values. Conclusion/Significance: BU patients are healed in a long-term physically and psychologically marked by the sequels induced by the disease. The results of the present study suggest that interventions and supports are needed to improve the QOL of these patients.
... Health and quality of life of workers have been different ages, genders, among health workers, caregivers, improved in the last decades [1], especially due to the smokers workers and in a great variety of disorders or actions and efforts of both governmental and non-diseases such as physical tiredness and chronic fatigue, governmental organizations and the creation of a sanitary chronic pain, mental disorders, cardiovascular and lung agenda to Brazil [2]. Following the same approach, the diseases [3,[5][6][7][8][9][10][11][12]. quality of life of workers has also been focused b y ...
Lifestyle and quality of life decisively interfere on risk for chronic non-transmissible diseases and the prevalence of affective and self-esteem disorders. The objective of this work was to evaluate health and quality of life aspects among permitted chandlers from CEAGESP in São Paulo, Brazil. All 79 chandlers from Sao Paulo headquarters were evaluated. The quality of life and lifestyle were evaluated by the "WHOQOL-bref" questionnaire. Sedentary behavior, alcoholic drinking and eating habits were evaluated by a 5-category food frequency questionnaire. Among men 85% won 5 minimum salaries (MS) and at least 42% had completed the high school. 61% of men slept less than 8 hours per day. About 9% of men had frequent negative feelings such as sadness, anxiety and depression. About 7% of men were unsatisfied with their body shape and 16% with their sleeping quality. Physical pain was more frequent among women than men (28 vs. 22%), whereas smoking prevalence was higher among women (28% vs. 19%). Women had higher educational level but perceived lower salaries. Among women, 52% slept less than 8 hours and 16% presented negative feelings. 16% of women were discontent with their sleep. In summary, quality of life of those workers should be improved.
... Data about health-related quality of life (HRQL) are increasingly important to evaluate the impact of chronic pain on patients as well as to demonstrate the effectiveness and economic value of therapies (1)(2)(3)(4). Within the physical, mental, and social components of well-being that comprise HRQL, physical activity is believed to play a key role. A higher level of physical activity is consistently associated with improved HRQL. ...
Objectives:
To define the key terms and concepts relating physical activity to chronic pain; to provide a brief overview of the various methods of assessment of physical activity; to review the current literature about physical activity and chronic pain; and to identify needs for future research.
Materials and methods:
A narrative review based on results of a PubMed search (to May 2011) and the references of recent systematic reviews.
Results:
Many methods exist for measuring physical activity. Movement sensors, such as accelerometers, offer objective assessment of physical activity of patients with chronic pain. It is often assumed that patients who feel disabled and report daily life restrictions due to chronic pain also will be less physically active. Studies that have compared the activity of patients with chronic back pain with that of healthy individuals consistently showed that the relationship of physical activity and severity of pain, as well as the change in activity following interventions, was variable and complex.
Conclusions:
It is important to understand the relationship between physical activity and chronic pain. Future studies should objectively assess not only the pattern and complexity of that relationship but also the interaction with the patient's mood and ability to cope with the pain.
... 27 The Pediatric Quality of Life Inventory (PedsQL) has been used to assess children's perceptions of QoL, including the physical, psychological, and social functioning of the child, and it has been the most widely used pediatric QoL measure. 28 Most studies investigate one specific symptom or QoL indicator; few research studies consider the pattern of symptoms such as pain, fatigue, depression, and QoL indicators in children and adolescents with chronic medical conditions. The purpose of this study was to investigate the presence of distinct latent classes of young individuals with chronic medical conditions that differ on their profiles of symptoms and QoL indicators. ...
Children with chronic conditions often experience numerous symptoms, but few research studies examine patterns of symptoms and quality of life (QoL) indicators.
To examine if reliable latent classes of children with chronic medical conditions can be identified based on the clustering of symptoms and QoL indicators.
Structured interviews were conducted with children ages 9-21 living with chronic medical conditions (N = 90). Multiple symptoms (e.g., pain, sleep, fatigue, and depression) and QoL indicators (e.g., life satisfaction and social support) were measured. Physical health and emotional, social, and school functioning were measured using the Pediatric Quality of Life Inventory (PedsQL). Latent class analysis was used to classify each child into a latent class whose members report similar patterns of responses.
A three-class solution had the best model fit. Class 1 (high-symptom group; n = 15, 16.7%) reported the most problems with symptoms and the lowest scores on the QoL indicators. Class 2 (moderate-symptom group; n = 39, 43.3%) reported moderate levels of both symptoms and QoL indicators. Class 3 (low-symptom group; n = 36, 40.0%) reported the lowest levels of symptoms and the highest scores on the QoL indicators.
The three latent classes identified in this study were distributed along the severity continuum. All symptoms and QoL indicators appeared to move in the same direction (e.g., worse symptoms with lower QoL). The PedsQL psychosocial health summary score (combining emotional, social, and school functioning scores) discriminated well between children with different levels of disease burden.
... " Thus, in patients with mild disease activity at baseline, there is less room for improvement in all clinical outcome measures. This has been shown to be a property of outcome measures for many different cutaneous and systemic diseases as well, including Rheumatologic pain scores [62, 63] and Psoriasis (PASI) [64, 65]. Interestingly, recent studies have demonstrated CLASI responsiveness in patients with mild skin disease using the definition of 4 points or 20 % decrease in CLASI activity. ...
Cutaneous Lupus Erythematosus (CLE) and Dermatomyositis (DM) are cutaneous autoimmune diseases that have been among the least systematically studied, due in part to the lack of validated outcome instruments in the past. More recent epidemiologic studies have elucidated the incidence and prevalence of these diseases and their subtypes. In addition, the advent of validated clinical outcome measures, including the Cutaneous Lupus Erythematosus Disease Area and Severity Index (CLASI) and the Cutaneous Dermatomyositis Disease Area and Severity Index (CDASI), has led to an objective means of measuring activity and damage of the disease. These outcome measures have established the framework for evaluating responsiveness and therapeutic efficacy in clinical trials as well as longitudinal studies to study disease course.
... [3] Pain affects patients in multiple dimensions, [4] and previous studies have reported substantial burdens of NP including impaired health-related quality of life (HR-QOL) and increased direct/indirect medical costs. [1,[4][5][6][7][8][9] Quantifying the impact of NP is necessary for effective disease management. In clinical assessments of pain, pain intensity has been identified as a major pain indicator. ...
... The diminishing effect of health on psychosomatic complaints within the biopsychosocial process model seemed to be due to collinearity with physical fitness Subjective health & Psychosomatic complaints, pains with regard to the locomotor system, earache, eyestrain, and sore throat Vetter (2007) [98] Self-reported occurrence of pain and/or illness influenced the general perception of subjective health ...
Objective:
The aim of the present paper was to analyze factors affecting distal and proximal health behavior within a biopsychosocial model for examining their interactions and associations with respect to health.
Methods:
Path analysis was based on the nationwide, cross-sectional German Health Interview and Examination Survey for Children and Adolescents (2003 to 2006). The data was collected from 4,529 participants with an average age of 9.45 years (SD = 4.01). Socio-demographic data, psychosocial factors and health behavior were assessed via questionnaire. Participants also underwent physical fitness tests and a medical examination.
Results:
Over the five levels of the model analyzed with socioeconomic status, immigration background, and rural-urban differences on the first level; physical activity of relatives and peers, intrinsic motivation, and quality of life on the second level; eating patterns, sedentary behavior, and physical activity on the third level; physical fitness and objective health on the fourth level; and health complaints and subjective health on the fifth level; direct, moderation, and mediation effects could be shown.
Conclusions:
Several distal and proximal factors are needed to take account of the multivariate complexity of health: e.g., immigration background affected health behaviors only indirectly and the effect of physical activity on objective health was mediated by physical fitness.
... L a evaluación de la Calidad de Vida Relacionada con la Salud (CVRS) ha adquirido cada vez más importancia en la práctica de la medicina, como indicador de la calidad de los diferentes tratamientos y sus resultados [1][2][3][4][5][6][7][8][9][10][11] . Se considera la CVRS como un constructo, basado en la percepción de la persona, del impacto que tiene la enfermedad o tratamiento en su capacidad para vivir una vida satisfactoria. ...
Background: Health-related quality of life (HRQOL) among patients on chronic hemodialysis (CHD), is associated with mortality, complications and compliance to treatment. Aim: To assess HRQOL in a group of patients on CHD. Patients and methods: A cross-sectional multicenter study was carried out, involving 224 patients from five CHD units (3 prívate and 2 public) in Bio Bio Región, using the Kidney Disease Quality of Life -36 items (KDQOL-36) questionnaire and Karnofsky scale. Scores range from 0 to 100, with higher values representing a better HRQOL. Results: Physical and Mental scales and subscales of symptoms, effect and the burden of kidney disease subscales rendered scores below 50 (the referential valué), in 80%, 61%, 8%, 43% and 80% of evaluations, respectively. The lower scores were observed in patients with diabetes, coronary artery disease, hypoalbuminemia, serum creatinine below 9.4 mg/dL, age >55years and in those with a low economic and educational level (p
... This definition matches very well with the health related quality of life (HRQL) assessment instruments, which basically include the physical, emotional, and social domains [8]. Quality of life analysis began to develop in the 1970s in order to describe and measure the impact of different conditions on people's daily lives, taking into account emotional and social functions as well as physical ones [9]. Many scoring systems, health questionnaires and surveys are available for assessment of the quality of life [10]. ...
Background and study aim:
Quality of life after liver donation must remain a primary outcome measure when we consider the utility of living donor liver transplants. In making clinical decisions on the use of transplantation for chronic liver diseases, consideration should be given to the key factors likely to affect subsequent health related quality of life. It would be beneficial for donors, if factors predicting good quality of life are identified. The aim of this study was to assess the health related quality of life changes experienced by donors following living related liver transplantation using the Short Form 36 (SF-36) questionnaire.
Patients and methods:
Between August 2001 and December 2006, 125 adults received liver grafts from living donors at Dar Al-Fouad Hospital, Cairo, Egypt. The SF-36v2 questionnaire was applied to 30 donors after at least 6 months following donation and maximally 4 years after donation (mean±STD:3.28±1.56 years). Furthermore, 30 healthy volunteers were taken as a control group.
Results:
None of the donors required re-surgery and no deaths were reported. Only 4 (13.3%) donors experienced minor complications, which did not affect their quality of life and had no long term effects. No significant difference was found between donors and control group when means of the Physical and Mental Component Summary were compared. The physical functioning domain was the only domain of health which showed a statistically significant difference between both groups.
Conclusion:
Health related quality of life of donors was not compromised after full recovery. All donors had good recovery and returned to regular activities within 2-4 months post donation.
... The parent proxy-version of the PedsQL™ has demonstrated adequate feasibility, reliability, and validity in parents recruited from general pediatric clinics, subspecialty clinics, and hospitals in which their children were being seen for well-child checks, mild acute illness, or chronic illness care [9] . The PedsQL™ was the most widely applied pediatric health-related quality of life measurement instrument in the MEDLINE database from 1966 to 2006 [31]. The accepted minimal clinically important difference (MCID) is 4.5 points for the PedsQL™ [29,32,33], the value that was applied here. ...
Previous pediatric studies have observed a cross-informant variance in patient self-reported health-related quality of life (HRQoL) versus parent proxy-reported HRQoL. This study assessed in older children and adolescents with a variety of chronic pain conditions: 1) the consistency and agreement between pediatric patients' self-report and their parents' proxy-report of their child's HRQoL; 2) whether this patient-parent agreement is dependent on additional demographic and clinical factors; and 3) the relationship between pediatric patient HRQoL and parental reported HRQoL.
The 99 enrolled patients (mean age 13.2 years, 71% female, 81% Caucasian) and an accompanying parent completed the PedsQLTM 4.0 and 36-Item Short-Form Health Survey Version 2 (SF-36v2) at the time of their initial appointment in a pediatric chronic pain medicine clinic. Patients' and parents' total, physical, and psychosocial HRQoL scores were analyzed via an intra-class correlation coefficient, Spearman's correlation coefficient, Wilcoxon signed rank test, and Bland-Altman plot. A multivariable linear regression model was used to evaluate the association between clinical and demographic variables and the difference in patient and proxy scores for the Total Scale Score on the PedsQL™.
With the exception of the psychosocial health domain, there were no statistically significant differences between pediatric patients' self-report and their parents' proxy-report of their child's HRQoL. However, clinically significant patient-parent variation in pediatric HRQoL was observed. Differences in patient-parent proxy PedsQL™ Total Scale Score Scores were not significantly associated with patient age, gender, race, intensity and duration of patient's pain, household income, parental marital status, and the parent's own HRQoL on the SF-36v2. No significant relationship existed among patients' self-reported HRQoL (PedsQL™), parental proxy-reports of the child's HRQoL, and parents' own self-reported HRQoL on the SF-36v2.
We observed clinically significant variation between pediatric chronic pain patients' self-reports and their parents' proxy-reports of their child's HRQoL. While whenever possible the pediatric chronic pain patient's own perspective should be directly solicited, equal attention and merit should be given to the parent's proxy-report of HRQoL. To do otherwise will obviate the opportunity to use any discordance as the basis for a therapeutic discussion about the contributing dynamic with in parent-child dyad.
Introduction:
Chronic musculoskeletal pain (CMSP) severely affects the individual's quality of life, functioning and ability to work, and comes with significant societal costs for sick leave and productivity loss. After rehabilitation, patients with CMSP often experience lack of support when responsibility for the return-to-work process is taken over by the employer. Therefore, we aim to evaluate the effectiveness of a digital support (Sustainable WorkEr digital support for Persons with chronic Pain and their Employers (SWEPPE)) for promoting a sustainable return-to-work for persons with CMSP and to facilitate the employers' supportive role and responsibilities in the process.
Methods and analysis:
In this registry-based multicentre randomised controlled trial, 360 patients with CMSP will be randomised to either receive the smartphone application SWEPPE (n=180) or to a control group (n=180). The intervention group will use SWEPPE for 1 year and the control group will not receive any intervention for return to work (RTW). Participants will be recruited from approximately 10 specialist and primary care level units connected to the Swedish National Quality Registry for Pain Rehabilitation providing Interdisciplinary Pain Rehabilitation Programmes (IPRP) for CMSP. Eligibility criteria are age 18-65 years and a need for support in RTW or continued support at work for creating a sustainable work situation. Baseline data will be collected when the participants have completed the IPRP. Final assessment will be performed after 12 months. The primary outcome will be a number of days with sickness cash benefit. Secondary outcomes and explanatory variables including important domains affected by CMSP such as health-related quality of life, functioning and work ability will be collected.
Ethics and dissemination:
The Swedish Ethics Review Board approved the study (Dnr 2020-01593, Dnr 2021-01854). The study findings will be disseminated through publication, national and international conferences, and meetings to be available for patients, healthcare providers or stakeholders.
Trial registration number:
NCT05058547.
Assessment provides the foundation for effective treatment, but evidence indicates that pain is not optimally assessed or treated in children. This chapter provides an overview of pediatric pain assessment in children of all ages and developmental abilities who may require opioids. Historic influences and pediatric pain assessment knowledge gaps are reviewed. Key steps in pain assessment, including pain history and the hierarchy of pain assessment strategies are outlined. Reliability, validity, and utility of commonly used pediatric self-report and observational pain assessment tools are described; and other factors to consider when choosing pain assessment tools are discussed. In addition, anticipated approaches for precision pediatric pain assessment, including harnessing the potential for digital health technologies and genomics to guide pediatric opioid treatment, are introduced.
Background and aims
Health-related quality of life (HRQoL) assessments have been widely used in pain medicine as they are able to reflect the subjective and multidimensional nature of chronic pain. Studies have shown a consistent impairment in HRQoL in different chronic pain conditions. However, it is not known whether HRQoL is impaired in chronic orofacial pain (OFP). The generic 15D HRQoL instrument has been shown to fare as well as or better than other generic HRQoL instruments in the study of chronic pain. The aim was to investigate HRQoL in patients with chronic OFP using the generic 15D HRQoL instrument. The validity of the instrument was tested by studying the association of the 15D data with pain interference.
Methods
One hundred fifty-one patients (mean age 50 years, SD 15 years, 119 females) were recruited from three tertiary facial pain clinics. HRQoL data of the participants were contrasted with that of an age- and gender- standardized sample of general population by comparing the mean 15D scores and profiles. The data for the general population came from the National Health 2011 Survey representing Finnish population aged 18 years and older. Pain interference was assessed using Brief Pain Inventory. Based on pain interference distribution the participants were divided into tertiles. Statistical comparison between patient and population HRQoL values were performed using Monte-Carlo-type simulations. Statistical significance for the hypothesis of linearity was evaluated by using generalized linear models.
Results
The mean 15D score of OFP patients (0.824, SD 0.113) was statistically significantly lower than that of the age- and gender-standardized general population (0.929, SD 0.019) ( p < 0.001). The difference between the patients and the general population was also clinically important, i.e. over the minimum clinically important difference in the 15D score. All mean 15D dimension values were significantly lower compared with the general population values ( p < 0.001 for all dimensions). The largest differences were seen in the dimensions of discomfort and symptoms (0.418, SD 0.222 vs. 0.816, SD 0.027), sleeping (0.693, SD 0.258 vs. 0.838, SD 0.029), and vitality (0.702, SD 0.221 vs. 0.884 SD 0.026). There was a statistically significant linear decrease in the 15D dimension values ( p < 0.001) with increasing pain interference. The greatest differences were found on the dimensions of discomfort and symptoms, sleeping and vitality.
Conclusions
HRQoL is significantly impaired in patients with chronic OFP. A decrease in the 15D dimension values with increasing pain interference indicated convergent validity between 15D and pain interference.
Implications
The findings suggest that 15D is an appropriate instrument for use in the assessment of HRQoL in OFP patients. By showing the usefulness of the 15D, the present study may encourage further use of generic HRQoL assessments in the study of chronic OFP, and contribute e.g. to the implementation of HRQoL as one of the core outcome measures in future treatment studies on chronic OFP.
Objective: We studied whether primary care temporomandibular disorder (TMD) patients reporting different levels of pain-related disability differ in terms of comorbid pains, general health conditions and quality of life.
Material and methods: Consecutive TMD pain patients (n = 399) seeking treatment in primary care completed a questionnaire on comorbid pains and their interference and the Finnish version of the RAND-36-item quality of life questionnaire. Medical diagnoses confirmed by doctors were recorded. The patients were classified according to the Graded Chronic Pain Scale (GCPS) of the Research Diagnostic Criteria for TMD (RDC/TMD). The patients were classified: no disability group (0 disability points), low disability group (1–2 disability points) and high disability group (3–6 disability points).
Results: Compared to patients in the no-disability group, patients in the high- and low-disability groups reported more comorbid pain conditions (p < .001), and experienced these as more intense and interfering more with daily life (p < .05). Patients in the high-disability group reported more general health-related medical diagnoses than patients in the no-disability group (p < .05). Furthermore, patients with low or high pain-related disability indicated poorer quality of life in all RAND-36 subscales than those with no disability (p < .05).
Conclusions: The findings suggest that GCPS-related disability scoring can be used as a simple screening instrument to identify TMD patients with different degrees of health burdens.
Objectives:
To analyze the Health related Quality of Life (HRQoL) and physical function in rheumatoid arthritis (RA) patients and compare it with the general population. We also intended to analyze about disease activity influence in HRQoL and functional capacity, as well as determine potential determinants for these outcomes.
Material and methods:
A cross-sectional study was conducted in RA patients from a university hospital of Portugal. We obtained Short Form 36, EuroQoL 5D, health assessment questionnaire, visual analog scale for pain and patient's assessment of disease activity. Comparisons between SF-36 and EQ-5D values with our population reference values were conducted using the Mann-Whitney test. Data were compared in different levels of disease activity, using Kruskal Wallis test and Fisher's exact test. A multiple regression analysis was conducted to identify the potential determinants of outcomes.
Results:
RA sample showed significantly lower values than the portuguese general population on physical summary measure of SF-36 (median=32 vs. 50, p<0.001) and EQ-5D (median=0.620 vs. 0.758 respectively; p<0.001). Lower disease activity levels had better PROs and this was true even when compared patients achieving remission with those in low disease activity. The HAQ (r(2)=67%), VAS-P (r(2)=62%) and VAS-DA (r(2)=58%) were the variables that strongly related to SF-36. Considering HAQ, the strongest relation was found with VAS-P, VAS-DA and age (r(2)=60%, 61% and 33%, respectively). Multiple regression analysis identified HAQ, VAS-P and educational status as determinants of the HRQoL; age, female gender, employment, VAS-P and VAS-DA as determinants of physical function.
Conclusion:
Impairment of HRQoL in RA patients is enormous. We found significant differences between different levels of disease activity, showing higher HRQoL and functional capacity at lower disease activity levels.
Objective:
To compare the impact of chronic pain physiopathology on health-related quality of life (HR-QoL), considering the influence of pain features and psychosocial adjustment (intensity, interference, psychological comorbidities, and sleep quality).
Design:
A cross-sectional study involving 1,025 noncancer patients with predominantly neuropathic, nociceptive, or mixed chronic pain conditions was conducted in 88 pain clinics within Spain. The EuroQol-5 Dimensions instrument (EQ-5D) was used to measure HR-QoL. The Brief Pain Inventory (BPI), Hospital Anxiety and Depression Scale (HADS), and sleep scale developed for the MOS study (MOS-SQ) were used to measure pain features and psychosocial adjustment. Multivariate analyses were used to model HR-QoL measures.
Results:
All patients reported very low HR-QoL. The mean EQ-5D index scores were 0.33, 0.36, and 0.37 in the mixed, neuropathic, and nociceptive pain groups, respectively. The differences did not reach statistical significance (P = 0.057). Patients with nociceptive pain had less pain (least pain intensity score: 4.7 vs. 5.2 in the other groups; P = 0.006), less interference with daily activities (BPI average interference score: 6.3 vs. 6.6 and 6.7 in the neuropathic and mixed pain groups, respectively; P = 0.013), less anxiety (HADS score: 8.5 vs. 9.6 and 9.7 in the same respective groups; P = 0.001), and fewer sleep problems (MOS-SQ sleep problems index: 46.8 vs. 52.2 and 50.2 in the same respective groups; P = 0.005). In the adjusted analyses, HR-QoL measures were explained by pain intensity, anxiety, and sleep quality, but not by physiopathological pain type.
Conclusions:
Pain features, particularly intensity, have a greater impact than pain physiopathology on HR-QoL. Distinct physiopathological mechanisms give rise to different pain features that, in turn, may mediate the HR-QoL of patients with chronic pain. This could be used to improve pain management strategies.
The clinical world starts to pay attention to quality of life (QoL) in the 1970s, when all the demographic, technological, cultural and political changes fatally influenced it. The word health-related quality of life (HRQoL) was created in the 1980s to identify a multidimensional and subjective concept. Even if a lot of studies have been conducted around this concept, there are still some open issues: for example, lots of studies are more focused on quality of the measuring tool than to results application. The first goal of this study is to explore the QoL concept application in clinical settings. The second goal of this study is to introduce a tool aimed at reading and structured evaluation of published and validated surveys, measuring HRQoL and overcoming the methodological limits encountered in literature. The application of a grid to a set of questionnaires, amongst the most utilized at international level, has the aim to enlighten positive aspects and critical areas. The proposed evaluation grid has been developed considering all logical steps usually taken into account when building a questionnaire:
Brainstorming phase: identification of concepts or dimensions the questionnaire aims to measure
Operational phase: questionnaire building, sample targeting and submitting method
Verify phase: reliability and validity control
Results phase: introducing the outcome of precedent phase
The application of the grid to the selected set allowed an accurate and structured evaluation of questionnaires and a critical comparison amongst them.
Health-related quality of life (HRQOL) represents a valid means by which to assess the patient's own subjective yet vital perspective on the adverse impact of his or her pain and its treatment. Routinely assessing HRQOL in adult and pediatric health care can facilitate patient-physician communication, improve patient/parent satisfaction, identify hidden morbidities, and assist in clinical decision-making. Unique instruments exist to measure HRQOL within and across various cultures in adults as well as in children and adolescents. HRQOL is founded primarily on functionalism and reflects the currently recognized importance of assessing and treating not only the biological but also the psychological and social factors contributing to a patient's chronic pain condition. The primary HRQOL domains are physical functioning, psychological functioning, social functioning and role activities, and individuals' overall life satisfaction and perceptions of their health status. HRQOL instruments fall into three basic categories: generic measures, condition-specific measures, and preference-based measures, with each category serving a specific pain-related clinical practice and clinical research purpose. Generic Health-Related Quality of Life measures provide a common metric for comparisons across pain treatments, conditions, or populations, whereas condition-specific Health-Related Quality of Life measures can identify small baseline differences and incremental changes in the unique and often most relevant aspects of a specific pain condition. Condition-specific HRQOL instruments thus serve as complements to rather than substitutes for generic measures. Further attention needs to be focused on measuring HRQOL in the pediatric setting, as well as in the palliative care and postoperative settings.
Pain is associated with many health problems and disturbed functioning and is a common reason for seeking medical care. Chronic pain is expensive, mainly because of the resulting disability and absence from work. Studies throughout the past 2 decades have shown a large variability of prevalence rates of pain. According to 1 comprehensive review, the prevalence of chronic benign pain varies between 2 and 40%, according to the method used in the study and the populations studied. In recent studies, more attention has been paid to the impact of pain on daily living and QOL. There are major differences between men and women in the prevalence and severity of self-reported pain in the population. Quality of life differs by gender and type of pain condition. Patients may benefit from interventions that enhance the use of appropriate pain coping techniques and other strategies to improve QOL. In the presence of chronic pain, the implication is that analgesics, by decreasing pain, may increase QOL. Several recent studies have confirmed this intuitive association. Within the impact of different variables affecting QOL, pain is a known mediator. As well, several variables such as social support, self esteem, coping and personality traits act as a mediator within the relationship between pain and QOL. Some QOL questionnaires do and some others do not include pain domains. The question numbers pertaining pain and the content of questions are different and should be focused in study designs. Also, from different pediatric Generic QOL Measures, Child Health Questionnaire (CHQ) has pain domain and some others do not have pain domain.
Quality of life has become an area of important clinical concern within the context of the Chronic Fatigue Syndrome. The association of deficits in quality of life in this group has been thrown into sharp relief by the more recent conceptualization of this distressing presentation as likely of being of biological, rather than psychiatric, origin. Chronic fatigue syndrome is an enigmatic presentation, the etiology of which remains speculative, this arising to the vacuum of evidence regarding causation being filled by opinion rather than fact, often to the detriment to the patient group as a whole. This chapter will explore the salient issues regarding assessment of quality of life in patients diagnosed with chronic fatigue syndrome.
Central or peripheral neuropathic pain can be caused by a wide range of injuries, infections and diseases such as: spinal cord injury, multiple sclerosis, stroke, herpes zoster, diabetes and cancer. Many of these pain syndromes are difficult to treat, representing a challenge for many neurologists not routinely trained in pain management. Written by an international team of experts in the field, Neuropathic Pain: Causes, Management and Understanding gives readers an in-depth understanding of the multitude of conditions causing neuropathic pain. Epidemiology, clinical diagnosis, pathophysiology, outcome measurement and the best evidence-based management of individual and general neuropathic pain conditions are also described in depth. A unique chapter, written from a patient's viewpoint, gives new insight into how chronic neuropathic pain affects the lives of those patients with the condition. This book is essential reading for all pain specialists, neurologists, psychiatrists and anesthesiologists who wish to better understand their patients' neuropathic pain.
Introduction: Neuropathic pain has significant effects on patients' quality of life. The impact upon health-related quality of life in these patients is greater than the sufferers of chronic conditions such as heart failure, cancer, chronic obstructive pulmonary disease, and motor neuron disease. This indicates a significant health burden for patients suffering with neuropathic pain [1] and for the society supporting them. Definitions: Quality of life and health: Quality of life (QoL) can be defined as contentment and satisfaction with various aspects of one's life [2], or The degree to which a person enjoys the important possibilities of his or her life (Toronto's Quality of Life Research Unit definition) [3]. The World Health Organization (WHO) defines health as a state of complete physical, mental and social wellbeing and not merely the absence of disease or infirmity [4]. QoL is composed of both positive and negative aspects of an individual's life. Every person has a different perception of what is important to them in life and hence defines quality of life differently. It is not to be confused with the individuals' living standard. A high standard of living does not equal a good quality of life. Quality of life is a multidimensional construct that includes biological, psychological and social domains. The overall quality of life depends on various aspects, including employment, housing, veighborhood, cultural, and spiritual values of the person. Health is one of the important domains contributing to QoL.
While acute pain lasts days to weeks, chronic pain lasts for more than 3 (or 6) months without relent. Whereas acute pain is transient and often subserves an important role in recognition of a transient condition, chronic pain's persistence is the cause of financial distress, increased medical system utilization, loss of work and functionality, and domestic dissolution. The treatment of acute pain is relatively straightforward, as determination of the cause of acute pain is usually followed by its direct management. It is for the 15% of acute pain patients whose pain becomes chronic that management becomes complicated and often unresponsive to standard treatments. As the chronic pain patient's condition develops, it becomes biological, psychological, and sociological in nature. While pharmacological and non-pharmacological therapies are attempted, often these are insufficient for reasonable management of the chronic pain condition. In many cases, this is due to the presence of comorbid conditions associated with chronic pain, such as mood disorders, anxiety conditions, and sleep disorders. Chronic pain is often viewed as pain alone. This is problematic, as chronic pain often does not travel alone. Instead, chronic pain can be viewed as a subjective experience impacting upon sleep efficacy, mood, anxiety, cognition, and emotional functioning [1]. To treat only a single aspect of a chronic pain patient's problem, such as with pharmacological intervention and physical therapy for a chronic soft-tissue (muscle) injury, while ignoring a patient's depression, anxiety, loss of self-esteem, and their inability to return to work or former life, may be more harmful than beneficial. Such disregard for the important chronic pain comorbidities will potentiate the problem, making the patient's condition more difficult to treat.
Chronic pain is a highly disabling condition, which can significantly reduce patients' quality of life. Prevalence of moderate and severe chronic pain is high in the general population, and it increases significantly in patients with advanced cancer and older than 65 years. Guidelines for the management of chronic pain recommend opioids for the treatment of moderate-to-severe pain in patients whose pain is not responsive to initial therapies with paracetamol and/or nonsteroidal anti-inflammatory drugs. Despite their analgesic efficacy being well recognized, adverse events can affect daily functioning and patient quality of life. Opioid-induced constipation (OIC) occurs in 40% of opioid-treated patients. Laxatives are the most common drugs used to prevent and treat OIC. Laxatives do not address the underlying mechanisms of OIC; for this reason, they are not really effective in OIC treatment. Naloxone is an opioid receptor antagonist with low systemic bioavailability. When administered orally, naloxone antagonizes the opioid receptors in the gut wall, while its extensive first-pass hepatic metabolism ensures the lack of antagonist influence on the central-mediated analgesic effect of the opioids. A prolonged-release formulation consisting of oxycodone and naloxone in a 2:1 ratio was developed trying to reduce the incidence of OIC maintaining the analgesic effect compared with use of the sole oxycodone. This review includes evidence related to use of oxycodone and naloxone in the long-term management of chronic non-cancer pain and OIC.
The purpose of this study was to conduct validity and reliability testing of a novel quantitative instrument, the Symptom Intrusiveness Rating Scale (SyIRS), developed to assess health-related quality of life (HRQOL) based on individuals' perception of how symptoms associated with a chronic condition affect their quality of life. It was noted in a review of the literature that an instrument focusing on the impact of symptoms of HRQOL that can be used as a subjective assessment tool for all individuals with symptoms related to a chronic condition is currently not available.
Prospective observational study.
The sample was comprised of 50 participants experiencing pain associated with chronic wounds hospitalized in an urban 500-bed acute care hospital in the south central United States.
Cognitive pretesting was conducted to test the construct of the SyIRS. Two experts in the field of HRQOL reviewed and scored statements on the SyIRS based on their relevance to HRQOL. Item-level content validity index (I-CVI) and scale-level content validity index average (S-CVI/Ave) were calculated to assess content validity. Internal consistency was tested using the Cronbach alpha. Test-retest reliability was obtained after administering the SyIRS twice over 2 weeks. The Pearson correlation was used to determine concurrent validity between the SyIRS and the SF-36v2 administered at the same time to confirm HRQOL as the construct on the SyIRS.
Cognitive pretesting indicated that participants interpreted the SyIRS instructions, statements, and response options as intended by the researchers. The SyIRS is a valid and reliable instrument with an S-CVI/Ave = 0.90, indicating the statement in the SyIRS all reflected HRQOL, Cronbach α = 0.904 indicated the instrument has good reliability based on internal consistency. Test-retest of SyIRS showed a strong positive correlation (r = 0.92, P < .005), indicating acceptable test-retest reliability. Correlation between the 2 subscales of SyIRS with SF-36v2 indicated moderate correlation on initial instrument completion (r = -0.56, P < .005, and r = -0.46, P < .001) as well as on the second completion (r = -0.55, P < .005, and r = -0.53, P < .005).
The SyIRS is a valid and reliable instrument to use for assessing HRQOL based on the perceptions of the impact symptoms associated with a chronic condition.
It has been a popular and accepted surgical tradition to place a ureteral stent after performing ureteroscopy especially when performing lithotripsy for ureteral calculi. The rationale for this surgical custom is based on historical animal models, which demonstrated ureteral obstruction after ureteral dilation as well as anecdotal evidence that placement of a ureteral stent prevents postoperative renal colic, possible readmission, and theoretical prevention of postoperative stricture formation. However, this dogma has recently been challenged with emerging literature that suggests uncomplicated ureteroscopy may not necessitate ureteral stenting. Randomized control trials and meta-analyses have confirmed significant lower urinary tract symptom morbidity such as urinary frequency, urinary urgency, dysuria, hematuria, and loin pain associated with ureteral stenting as well as the absence of long-term benefits to stenting (ureteral stricture prevention, improved stone-free rates, etc.). Although the randomized control trials suggest that routine ureteral stenting is not mandatory for uncomplicated ureteroscopy, the evidence does not adequately define the term “uncomplicated.” Furthermore methodological inconsistencies among different studies prevent conclusive recommendations for urologists. This chapter summarizes the literature and provides guidelines for the practicing urologist on the role of unstented ureteroscopy and suggests future directions for research in this topic.
Background:
The reduction of pain is no longer regarded as the predominant objective of pain therapy. Pain-related impairments in quality of life or daily activities, and anxiety and depression — all of which worsen with progressing pain chronification — increasingly gain importance. Impairments in quality of life in particular often have a greater impact on patients afflicted by pain than by other chronic diseases.
Method:
The present overview explains the importance of the parameter health-related quality of life in the treatment of pain patients in family medicine; in addition, a variety of tools for the initial and follow-up assessment of pain and pain-related impairments are introduced.
Results and conclusion:
In addition to a mandatory comprehensive pain diagnostic work-up, pain-related restrictions in daily activities and in quality of life should be documented in primary care facilities and considered in pain management approaches. In a multimodal therapy setting, family practitioners have a key role in the diagnosis of pain and in particular also in the diagnosis of additional symptoms and impairments accompanying pain.
Objective
To determine health-related quality of life (HRQoL) measured with the 36-item Short-Form (SF-36) questionnaire in women workers in the fishing industry, compared with norm-based values in the reference population and other similar samples of persons with musculoskeletal disorders.
Method
A cross-sectional study was performed to measure HRQoL in 917 shellfish gatherers. Women taking part in a physiotherapy workshop were invited to participate. We used a self-administered questionnaire, including questions on sociodemographic variables, lifestyle, comorbidity, the prevalence of musculoskeletal disorders, and HRQoL. For the SF-36 raw scores, norm-based scores and z-scores were calculated.
Results
The mean age of participants was 50.6 years (standard deviation: 8.8). In all dimensions of the SF-36, values in the sample were lower than in the general reference population. The greatest differences were in younger people. The most affected dimensions were bodily pain, vitality and general health. Physical health was more affected than mental health.
Conclusions
HRQoL, especially physical components, was worse in women shellfish gatherers than in the general population and other population samples.
Chronic pain is frequently experienced in adolescents; it affects functionality and requires interventions to decrease the impairments caused by pain. Cognitive behavioral therapy (CBT) has been analyzed in numerous studies that evaluated its effects on reducing the different types of chronic pain in children and adolescents. Interestingly, the outcome of CBT was initially focused on pain intensity, but, because there is no correspondence between children's pain intensity and level of disability, the ability to participate in school and social and recreational activities have been the primary focus of recent studies. There are innovative methods of CBT (such as the third generation of CBT) with and without the use of technology that facilitates the availability of this psychological treatment to adolescents with chronic pain, optimizing its accessibility and comprehensiveness, and maintaining its effectiveness. In the future, specific types of CBT could be specific to the diagnosis of chronic pain in the adolescent, sociodemographics, and other unique features. Parents of children with chronic pain are usually included in these programs, either as coaches in the intervention or as recipients of psychological therapies (including CBT) to optimize benefits. CBT has no adverse effect on chronic pain in adolescents, and there is no literature that makes reference to the effectiveness of CBT in preventing chronic pain in adolescents. A review of the role of CBT in chronic pain in adolescents via a PubMed database search was performed to identify the role of CBT in the management of chronic pain in adolescents.
A qualidade de vida dos profissionais de saúde é fundamental para que estes
possam desempenhar com segurança, motivação e eficácia seus serviços à
população. Neste sentido, elaborou-se um estudo descritivo e transversal para
avaliar a qualidade de vida em profissionais da atenção primária à saúde do SUS no
Vale do Araguaia (MT/GO). 45 profissionais (60% do total de profissionais) de
unidades da Estratégia de Saúde da Família (ESF) e de um Centro de Saúde de
Aragarças (GO), Barra do Garças (MT) e Pontal do Araguaia (MT) concordaram e
participaram do estudo. A qualidade de vida foi avaliada utilizando-se o questionário
de qualidade de vida da OMS (WHOQOL-bref) validado no Brasil. Resultados:
embora 18% não necessitem de tratamento médico, 26,7% precisam de vez em
quando e 13,3% precisam muito de cuidados médicos. Ademais, 5% aceitam muito
pouco sua aparência física e 22% tem apenas uma aceitação razoável da mesma.
Cerca de 9% declararam ter pouca ou nenhuma energia para realizar as tarefas
cotidianas, enquanto que 17,8% estiveram totalmente insatisfeitos com o sono. Em
relação à frequência de sentimentos psicoafetivos negativos 60% tiveram às vezes,
11% frequentemente, 2% quase sempre e 27% nunca. Embora se considerem
felizes, com disposição física e boa qualidade de vida, parcela considerável dos
profissionais de saúde da atenção básica do Vale do Araguaia são afetados por
problemas de saúde, distúrbios psicoafetivos e problemas de sono.
The quality of life of health professionals is essential for an adequate work
performance considering safety, motivation, and eficacy of the public health
services. In this sense, a descriptive and transversal study was performed in order to
evaluate the quality of life in health profissionals from health primary atention of the
“NHS” in “Vale do Araguaia” (MT/GO). 45 profissionals (60% of total) from unities of
“Estratégia de Saúde da Família (ESF)”, and a community health center from
Aragarças (GO), Barra do Garças (MT), and Pontal do Araguaia (MT) agreed and
joined the study. Quality of life was evaluated using the World’s Health Organization
(WHO) Quality of Life questionnaire (WHOQOL-bref) validated in Brazil. Results:
although 18% of the subjects needed no medical treatment, 26.7% need sometimes,
and 13.3% had higher need of medical caring. Further, 5% had a poor selfacceptance
of physical shape, and 22% had only a reasonable acceptance. 9%
declared had low or no energy to make daily activities, whereas 17.8% were totally
unsatisfied wuith their sleep. Considering the frequency of negative psychoaffective
feelings 60% of them had it sometimes, 11% frequently, 2% almost alwyas, and 27%
never experienced. Although they considered being happy with physical stamina and
good quality of life a considerable fraction of those health profissionals from primary
atention of “Vale do Araguaia” are committed by health problems de saúde,
psychoaffective disorders, and sleeping problems.
OBJECTIVE: To determine health-related quality of life (HRQoL) measured with the 36-item Short-Form (SF-36) questionnaire in women workers in the fishing industry, compared with norm-based values in the reference population and other similar samples of persons with musculoskeletal disorders. METHOD: A cross-sectional study was performed to measure HRQoL in 917 shellfish gatherers. Women taking part in a physiotherapy workshop were invited to participate. We used a self-administered questionnaire, including questions on sociodemographic variables, lifestyle, comorbidity, the prevalence of musculoskeletal disorders, and HRQoL. For the SF-36 raw scores, norm-based scores and z-scores were calculated. RESULTS: The mean age of participants was 50.6 years (standard deviation: 8.8). In all dimensions of the SF-36, values in the sample were lower than in the general reference population. The greatest differences were in younger people. The most affected dimensions were bodily pain, vitality and general health. Physical health was more affected than mental health. CONCLUSIONS: HRQoL, especially physical components, was worse in women shellfish gatherers than in the general population and other population samples.
Objectives:
To examine how the severity of postoperative pain affects patient's health-related quality of life (HRQoL) at 1 week following surgery and to compare two generic validated HRQoL instruments.
Methods:
Patients undergoing general or orthopaedic surgery at the Royal London Hospital were randomly sampled. The following patient outcome data were collected EQ-5D (EuroQoL) pre-operatively and the Revised American Pain Society Patient Outcome Questionnaire (APS-POQ-R) at 24 hours postoperation; and EQ-5D, Short-Form-12 (SF-12) and APS-POQ-R at 7 days postoperation. The degree of association between pain and HRQoL was assessed using Pearson's correlation coefficient and multivariate generalized linear regression models.
Results:
Of the 228 patients included, 166 patients provided data at 7 days. Sixteen percent reported severe pain ≥ 50% of the day at 7 days. The severity of pain on both the APS-POQ-R pain severity and interference and affective impairment domains at 7 days was highly correlated with a decrease in HRQoL as assessed by the SF-12 Physical Component Score (PCS), SF-12 Mental Component Score (MCS), and EQ-5D scores (r = -0.34 to -0.61, P < 0.0001). Multivariate regression analyses showed that irrespective of confounding factors (eg, age, gender, and pre-operative HRQoL) patients with severe postoperative pain experience important reductions in both physical and mental well-being domains of their HRQoL.
Conclusions:
A proportion of patients continue to experience severe pain at 7 days postoperatively, even after minor surgery. HRQoL is strongly associated with the level of pain and provides additional data on the impact of postsurgery pain on patient's function and well-being. Additional studies are needed to elucidate the interaction between pain severity and HRQoL during the peri-operative period.
Regression methods were used to select and score 12 items from the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36) to reproduce the Physical Component Summary and Mental Component Summary scales in the general US population (n = 2,333). The resulting 12-item short-form (SF-12) achieved multiple R squares of 0.911 and 0.918 in predictions of the SF-36 Physical Component Summary and SF-36 Mental Component Summary scores, respectively. Scoring algorithms from the general population used to score 12-item versions of the two components (Physical Component Summary and Mental Component Summary) achieved R squares of 0.905 with the SF-36 Physical Component Summary and 0.938 with the SF-36 Mental Component Summary when cross-validated in the Medical Outcomes Study. Test-retest (2-week) correlations of 0.89 and 0.76 were observed for the 12-item Physical Component Summary and the 12-item Mental Component Summary, respectively, in the general US population (n = 232). Twenty cross-sectional and longitudinal tests of empirical validity previously published for the 36-item short-form scales and summary measures were replicated for the 12-item Physical Component Summary and the 12-item Mental Component Summary, including comparisons between patient groups known to differ or to change in terms of the presence and seriousness of physical and mental conditions, acute symptoms, age and aging, self-reported 1-year changes in health, and recovery from depression. In 14 validity tests involving physical criteria, relative validity estimates for the 12-item Physical Component Summary ranged from 0.43 to 0.93 (median = 0.67) in comparison with the best 36-item short-form scale. Relative validity estimates for the 12-item Mental Component Summary in 6 tests involving mental criteria ranged from 0.60 to 1.07 (median = 0.97) in relation to the best 36-item short-form scale. Average scores for the 2 summary measures, and those for most scales in the 8-scale profile based on the 12-item short-form, closely mirrored those for the 36-item short-form, although standard errors were nearly always larger for the 12-item short-form.
Increasingly, translated and culturally adapted health-related quality of life measures are being used in cross-cultural research. To assess comparability of results, researchers need to know the comparability of the content of the questionnaires used in different countries. Based on an item-by-item discussion among International Quality of Life Assessment (IQOLA) investigators of the content of the translated versions of the SF-36 in 10 countries, we discuss the difficulties that arose in translating the SF-36. We also review the solutions identified by IQOLA investigators to translate items and response choices so that they are appropriate within each country as well as comparable across countries. We relate problems and solutions to ratings of difficulty and conceptual equivalence for each item. The most difficult items to translate were physical functioning items that refer to activities not common outside the United States and items that use colloquial expressions in the source version. Identifying the origin of the source items, their meaning to American English-speaking respondents and American English synonyms, in response to country-specific translation issues, greatly helped the translation process. This comparison of the content of translated SF-36 items suggests that the translations are culturally appropriate and comparable in their content.
The Swedish Knee Arthroplasty Registry (SKAR) has recorded knee arthroplasties prospectively in Sweden since 1975. The only outcome measure available to date has been revision status. While questionnaires on health outcome may function as more comprehensive endpoints, it is unclear which are the most appropriate. We tested various outcome questionnaires in order to determine which is the best for patients who have had knee arthroplasty as applied in a cross-sectional, discriminative, postal survey. Four general health questionnaires (NHP, SF-12, SF-36 and SIP) and three disease/site-specific questionnaires (Lequesne, Oxford-12, and WOMAC) were tested on 3600 patients randomly selected from the SKAR. Differences were found between questionnaires in response rate, time required for completion, the need for assistance, the efficiency of completion, the validity of the content and the reliability. The mean overall ranks for each questionnaire were generated. The SF-12 ranked the best for the general health, and the Oxford-12 for the disease/site-specific questionnaires. These two questionnaires could therefore be recommended as the most appropriate for use with a large knee arthroplasty database in a cross-sectional population.
One can classify ways to establish the interpretability of quality-of-life measures as anchor based or distribution based. Anchor-based measures require an independent standard or anchor that is itself interpretable and at least moderately correlated with the instrument being explored. One can further classify anchor-based approaches into population-focused and individual-focused measures. Population-focused approaches are analogous to construct validation and rely on multiple anchors that frame an individual's response in terms of the entire population (eg, a group of patients with a score of 40 has a mortality of 20%). Anchors for population-based approaches include status on a single item, diagnosis, symptoms, disease sever- ity, and response to treatment. Individual-focused ap- proaches are analogous to criterion validation. These methods, which rely on a single anchor and establish a minimum important difference in change in score, require 2 steps. The first step establishes the smallest change in score that patients consider, on average, to be important (the minimum important difference). The second step esti- mates the proportion of patients who have achieved that minimum important difference. Anchors for the indi- vidual-focused approach include global ratings of change within patients and global ratings of differences between patients. Distribution-based methods rely on expressing an effect in terms of the underlying distribution of results. Investigators may express effects in terms of between- person standard deviation units, within-person standard deviation units, and the standard error of measurement. No single approach to interpretability is perfect. Use of multiple strategies is likely to enhance the interpretability of any particular instrument. Mayo Clin Proc. 2002;77:371-383
A 36-item short-form (SF-36) was constructed to survey health status in the Medical Outcomes Study. The SF-36 was designed for use in clinical practice and research, health policy evaluations, and general population surveys. The SF-36 includes one multi-item scale that assesses eight health concepts: 1) limitations in physical activities because of health problems; 2) limitations in social activities because of physical or emotional problems; 3) limitations in usual role activities because of physical health problems; 4) bodily pain; 5) general mental health (psychological distress and well-being); 6) limitations in usual role activities because of emotional problems; 7) vitality (energy and fatigue); and 8) general health perceptions. The survey was constructed for self-administration by persons 14 years of age and older, and for administration by a trained interviewer in person or by telephone. The history of the development of the SF-36, the origin of specific items, and the logic underlying their selection are summarized. The content and features of the SF-36 are compared with the 20-item Medical Outcomes Study short-form.
The assessment of health-related quality of life (HR-QOL) is an essential element of healthcare evaluation. Hundreds of generic and specific HR-QOL instruments have been developed. Generic HR-QOL instruments are designed to be applicable across a wide range of populations and interventions. Specific HR-QOL measures are designed to be relevant to particular interventions or in certain subpopulations (e.g. individuals with rheumatoid arthritis). This review examines 7 generic HR-QOL instruments: (i) the Medical Outcomes Study 36-Item Short Form (SF-36) health survey; (ii) the Nottingham Health Profile (NHP); (iii) the Sickness Impact Profile (SIP); (iv) the Dartmouth Primary care Cooperative Information Project (COOP) Charts; (v) the Quality of Well-Being (QWB) Scale; (vi) the Health Utilities Index (HUI); and (vii) the EuroQol Instrument (EQ-5D). These instruments were selected because they are commonly used and/or cited in the English language literature. The 6 characteristics of an instrument addressed by this review are: (i) conceptual and measurement model; (ii) reliability; (iii) validity; (iv) respondent and administrative burden; (v) alternative forms; and (vi) cultural and language adaptations. Of the instruments reviewed, the SF-36 health survey is the most commonly used HR-QOL measure. It was developed as a short-form measure of functioning and well-being in the Medical Outcomes Study. The Dartmouth COOP Charts were designed to be used in everyday clinical practice to provide immediate feedback to clinicians about the health status of their patients. The NHP was developed to reflect lay rather than professional perceptions of health. The SIP was constructed as a measure of sickness in relation to impact on behaviour. The QWB, HUI and EQ-5D are preference-based measures designed to summarise HR-QOL in a single number ranging from 0 to 1. We found that there are no uniformly `worst' or `best' performing instruments. The decision to use one over another, to use a combination of 2 or more, to use a profile and/or a preference-based measure or to use a generic measure along with a targeted measure will be driven by the purpose of the measurment. In addition, the choice will depend on a variety of factors including the characteristics of the population (e.g. age, health status, language/culture) and the environment in which the measurement is undertaken (e.g. clinical trial, routine physician visit). We provide our summary of the level of evidence in the literature regarding each instrument's characteristics based on the review criteria. The potential user of these instruments should base their instrument selection decision on the characteristics that are most relevant to their particular HR-QOL measurment needs.
A 36-item short-form (SF-36) was constructed to survey health status in the Medical Outcomes Study. The SF-36 was designed for use in clinical practice and research, health policy evaluations, and general population surveys. The SF-36 includes one multi-item scale that assesses eight health concepts: 1) limitations in physical activities because of health problems; 2) limitations in social activities because of physical or emotional problems; 3) limitations in usual role activities because of physical health problems; 4) bodily pain; 5) general mental health (psychological distress and well-being); 6) limitations in usual role activities because of emotional problems; 7) vitality (energy and fatigue); and 8) general health perceptions. The survey was constructed for self-administration by persons 14 years of age and older, and for administration by a trained interviewer in person or by telephone. The history of the development of the SF-36, the origin of specific items, and the logic underlying their selection are summarized. The content and features of the SF-36 are compared with the 20-item Medical Outcomes Study short-form.
Physicians wishing to maintain the functional capacity of their patients often need, but usually do not have, practical measures of function. The Dartmouth COOP, a primary care research network, developed nine pictorial Charts to efficiently measure patient function in busy office practice. Each Chart has a five-point scale, is illustrated, and can be self-administered or administered by office staff. The Charts are used to measure the patients' overall functional health just as Snellen Charts are used to measure vision. Studies to assess the Charts' reliability, validity, acceptability and clinical utility were conducted on over 2,000 patients in four diverse clinical settings. Results show that the Charts are both reliable and valid. One-hour test-retest intraclass correlations for elderly patients ranged from 0.78 to 0.98 and from 0.73 to 0.98 for low income patients. The average Pearson product-moment correlation between Charts and previously validated measures of function was 0.61 and the Charts were as capable of detecting the association between disease and functioning as were longer, standard measures. Most clinicians and patients report that the Charts are easy to use and provide a valuable tool to measure overall function in busy office practice. For the 25% of patients in which the Charts uncovered new information, changes in clinical management were initiated for 40% of them. We conclude that the COOP Charts are practical, reliable, valid, sensitive to the effects of disease and useful for quickly measuring patient function.
This study was designed to test the reliability and validity of an instrument to assess adolescent health status. Reliability and validity were examined by administration to adolescents (ages 11-17 years) in eight schools in two urban areas, one area in Appalachia, and one area in the rural South. Integrity of the domains and subdomains and construct validity were tested in all areas. Test/retest stability, criterion validity, and convergent and discriminant validity were tested in the two urban areas. Iterative testing has resulted in the final form of the CHIP-AE (Child Health and Illness Profile-Adolescent Edition) having 6 domains with 20 subdomains. The domains are Discomfort, Disorders, Satisfaction with Health, Achievement (of age-appropriate social roles), Risks, and Resilience. Tested aspects of reliability and validity have achieved acceptable levels for all retained subdomains. The CHIP-AE in its current form is suitable for assessing the health status of populations and subpopulations of adolescents. Evidence from test-retest stability analyses suggests that the CHIP-AE also can be used to assess changes occurring over time or in response to health services interventions targeted at groups of adolescents.
One can classify ways to establish the interpretability of quality-of-life measures as anchor based or distribution based. Anchor-based measures require an independent standard or anchor that is itself interpretable and at least moderately correlated with the instrument being explored. One can further classify anchor-based approaches into population-focused and individual-focused measures. Population-focused approaches are analogous to construct validation and rely on multiple anchors that frame an individual's response in terms of the entire population (eg, a group of patients with a score of 40 has a mortality of 20%). Anchors for population-based approaches include status on a single item, diagnosis, symptoms, disease severity, and response to treatment. Individual-focused approaches are analogous to criterion validation. These methods, which rely on a single anchor and establish a minimum important difference in change in score, require 2 steps. The first step establishes the smallest change in score that patients consider, on average, to be important (the minimum important difference). The second step estimates the proportion of patients who have achieved that minimum important difference. Anchors for the individual-focused approach include global ratings of change within patients and global ratings of differences between patients. Distribution-based methods rely on expressing an effect in terms of the underlying distribution of results. Investigators may express effects in terms of between-person standard deviation units, within-person standard deviation units, and the standard error of measurement. No single approach to interpretability is perfect. Use of multiple strategies is likely to enhance the interpretability of any particular instrument.
The objective of this prospective study was to investigate the cross-sectional and longitudinal associations between pain and emotional distress in children and adolescents with cancer as measured by the Pediatric Quality of Life Inventory™ (PedsQL™) Emotional Functioning and Pain Scales. The PedsQL™ 1.0 Generic Core Scales are multidimensional scales developed as the generic core measure to be integrated with the PedsQL™ Disease-Specific Modules. The PedsQL™ 1.0 Cancer Module was designed to measure pediatric cancer-specific health-related quality of life. The PedsQL™ Generic Core Scales, Emotional Functioning Scale and Cancer Module Pain Scale, were administered to 69 children and 59 adolescents and their parents at Time 1 and Time 2, which was 6 months on average after Time 1. Prospective hierarchical multiple regression analyses supported a longitudinal predictive model with Time 1 pain predicting Time 2 pain and Time 1 emotional distress predicting Time 2 emotional distress, respectively. Time 1 emotional distress did not predict Time 2 pain, and Time 1 pain did not predict Time 2 emotional distress. The results demonstrate that pediatric cancer pain and emotional distress, although associated cross-sectionally, are differentially predictive in prospective longitudinal analyses. These results suggest that both pain and emotional distress should be targeted for treatment interventions concurrently to enhance long-term health-related quality of life of the pediatric patient with cancer.
In a prospective study of 230 episodes of low-back pain presenting in primary care, the natural history of the symptom of low-back pain has been described. Clinical features predictive of outcome have been identified in order to define groups of patients who were relatively homogeneous with respect to the outcome of the episode. A Disability Questionnaire performed more satisfactorily as an outcome measure than either absence from work or a simple pain-rating scale. Guidelines for future trials of treatment of back pain in primary care are described.
The objective of this article was to describe and illustrate a comprehensive approach for estimating clinically important differences (CIDs) in health-related quality-of-life (HR-QOL). A literature review and pilot study were conducted to determine whether effect size-based benchmarks are consistent with CIDs obtained from other approaches. CIDs may be estimated based primarily upon effect sizes, supplemented by more traditional anchor-based methods of benchmarking (i.e. direct, cross-sectional or longitudinal approaches). A literature review of articles discussing CIDs provided comparative data on effect sizes for various chronic conditions. A pilot study was then conducted to estimate the minimum CID of the Health Utilities Index (HUI) Mark II, and to compare the observed between-group differences observed in a recent randomised trial of an acute stroke intervention with this benchmark. The use of standardised effect size benchmarks has a number of advantages–for example, effect sizes are efficient, widely accepted outside HR-QOL, and have well accepted benchmarks based upon external anchors. In addition, our literature review and pilot study suggest that effect size-based CID benchmarks are similar to those which would be obtained using more traditional methods. For most HR-QOL instruments, we do not know the changes in score which constitute CIDs of various magnitudes. This makes interpretation of HR-QOL results from clinical trials difficult, and having a benchmarking process which is relatively straightforward would be highly desirable.
Objectives: To assess the growth of quality of life measures and to examine the availability of measures across specialties.
Design: Systematic searches of electronic databases to identify developmental and evaluative work relating to health outcome measures assessed by patients.
Main outcome measures: Types of measures: disease or population specific, dimension specific, generic, individualised, and utility. Specialties in which measures have been developed and evaluated.
Results: 3921 reports that described the development and evaluation of patient assessed measures met the inclusion criteria. Of those that were classifiable, 1819 (46%) were disease or population specific, 865 (22%) were generic, 690 (18%) were dimension specific, 409 (10%) were utility, and 62 (1%) were individualised measures. During 1990-9 the number of new reports of development and evaluation rose from 144 to 650 per year. Reports of disease specific measures rose exponentially. Over 30% of evaluations were in cancer, rheumatology and musculoskeletal disorders, and older people's health. The generic measures—SF-36, sickness impact profile, and Nottingham health profile—accounted for 612 (16%) reports.
Conclusions: In some specialties there are numerous measures of quality of life and little standardisation. Primary research through the concurrent evaluation of measures and secondary research through structured reviews of measures are prerequisites for standardisation. Recommendations for the selection of patient assessed measures of health outcome are needed.
Levels of Well-Being are social preferences, or weights that members of society associate with time-specific states of function. A Weighted Life Expectancy, which can be used to measure program outputs, is created by summing the levels across diverse cases and multiplying them by probable transitions (prognoses) among the states and levels. This operation requires however, that the Levels of Well-Being be measured on underlying metric scale. The present analysis compares preference measurements from a simple category rating procedure with those obtained using the more complex and difficult magnitude estimation method which has been claimed to yield ratio level measures. In a randomly counterbalanced design, 65 college students rated 30 case descriptions representing the range of the Well-Being continuum. The results exhibit the classical logarithmic relation observed for a prothetic continua. When transformed to a meaningful 0-1 unit scale, however, the magnitude responses are compressed at the lower end of the scale near death. Such results are inconsistent not only with category rating, but also with intuitive notions of the relative importance of the function states, with the results of rating procedures that simulate social choice, and with evidence that confirms the interval properties of the category ratings themselves. Furthermore, the ease of administration of category rating means that multiple attributes of cases can be considered jointly, avoiding the need to aggregate scale values for different attributes by arbitrary rules. In sum, magnitude estimation is inappropriate as a measurement method for a Health Status Index and is probably also inappropriate for other measures of utility and social choice.
Objectives. The aims of this study were to evaluate two condition-specific and two generic health status questionnaires for measuring health-related quality of life in patients with osteoarthritis (OA) of the knee, and to oVer guidance to clinicians and researchers in choosing between them. Methods. Patients were recruited from two settings: 118 from knee surgery waiting lists and 112 from rheumatology clinics. Four self-completion questionnaires [ Western Ontario and McMaster University Osteoarthritis Index ( WOMAC ), Health Assessment Questionnaire (HAQ), Short Form-36 (SF-36) and Euroqol ] were sent to subjects on two occasions 6 months apart. Construct validity, convergent validity, internal consistency and responsiveness were examined using primarily non-parametric methods. Results. All instruments proved satisfactory in terms of ease of use, acceptability to patients, internal consistency and reliability. In the surgical group, the OA-specific WOMAC performed better than the HAQ and the generic measures in terms of validity and responsiveness to change, whereas in the rheumatology group the SF-36 was more responsive. Conclusion. WOMAC is the instrument of choice for evaluating the outcome of knee replacement surgery in OA. The SF-36 provides a more general insight into patients’ health and may be more responsive to change than the WOMAC in a heterogeneous rheumatology clinic population. Researchers wishing to undertake an economic evaluation might consider the EQ-5D for a surgical, but not a rheumatology clinic group.
Physicians wishing to maintain the functional capacity of their patients often need, but usually do not have, practical measures of function. The Dartmouth COOP, a primary care research network, developed nine pictorial Charts to efficiently measure patient function in busy office practice. Each Chart has a five-point scale, is illustrated, and can be self-administered or administered by office staff. The Charts are used to measure the patients' overall functional health just as Snellen Charts are used to measure vision. Studies to assess the Charts' reliability, validity, acceptability and clinical utility were conducted on over 2,000 patients in four diverse clinical settings. Results show that the Charts are both reliable and valid. One-hour test-retest intraclass correlations for elderly patients ranged from 0.78 to 0.98 and from 0.73 to 0.98 for low income patients. The average Pearson product-moment correlation between Charts and previously validated measures of function was 0.61 and the Charts were as capable of detecting the association between disease and functioning as were longer, standard measures. Most clinicians and patients report that the Charts are easy to use and provide a valuable tool to measure overall function in busy office practice. For the 25% of patients in which the Charts uncovered new information, changes in clinical management were initiated for 40% of them. We conclude that the COOP Charts are practical, reliable, valid, sensitive to the effects of disease and useful for quickly measuring patient function.
Purpose: We sought to compare directly elicited valuations for EQ-5D health states between the US and UK general adult populations. Methods: We analyzed data from 2 EQ-5D valuation studies where, using similar time trade-off protocols, values for 42 common health states were elicited from representative samples of the US and UK general adult populations. First, US and UK population mean valuations were estimated and compared for each health state. Second, random-effect models were used to compare the US and UK valuations while adjusting for known predictors of EQ-5D valuations (ie, age, sex, health state descriptors) and to investigate whether and how the valuations differ. Results: Population mean valuations of the 42 health states ranged from −0.38 to 0.88 for the United States and from −0.54 to 0.88 for the United Kingdom, with the US mean scores being numerically higher than the UK for 39 health states (mean difference: 0.11; range: −0.01 to 0.25). After adjusting for the main effects of known predictors, the average difference in valuations was 0.10 (P < 0.001). The magnitude of the difference in the US and UK valuations was not constant across EQ-5D health states; greater differences in valuations were present in health states characterized by extreme problems. Conclusions: Meaningful differences exist in directly elicited TTO valuations of EQ-5D health states between the US and UK general populations. Therefore, EQ-5D index scores generated using valuations from the US general population should be used for studies aiming to reflect health state preferences of the US general public.
This is the first in a series of five articles
The way we think about health and health care is changing. The two factors driving this change are the recognition of the importance of the social consequences of disease and the acknowledgement that medical interventions aim to increase the length and quality of survival. For these reasons, the quality, effectiveness, and efficiency of health care are often evaluated by their impact on a patient's “quality of life.”
There is no consensus on the definition of quality of life as it is affected by health (health related quality of life). Definitions range from those with a holistic emphasis on the social, emotional, and physical wellbeing of patients after treatment1 to those that describe the impact of a person's health on his or her ability to lead a fulfilling life.2 This article assumes it to be those aspects of an individual's subjective experience that relate both directly and indirectly to health, disease, disability, and impairment. The central concern of this paper is the tendency to regard the quality of life as a constant. We contend that perceptions of health and its meaning vary between individuals and within an individual over time. People assess their health related quality of life by comparing their expectations with their experience. We propose a model of the relation between expectations and experience and use it to illustrate problems in measuring quality of life. The implications of these concepts for the use of quality of life as an indicator of the need for treatment and as an outcome of care are discussed.
#### Summary points
Health related quality of life is the gap between our expectations of health and our experience of it
Perception of quality of life varies between individuals and is dynamic within them
People with different …
Background:
There is increasing recognition of the importance of obtaining children's reports of their health, but significant challenges must be overcome to do so in a systematic, population-based manner.
Objective:
The objective of this study was to present the initial tests of the Child Report Form of the Child Health and Illness Profile-Child Edition (CHIP-CE/CRF), a self-report health status instrument for children 6 to 11 years old.
Methods:
Three studies iteratively evaluated revisions of the CHIP-CE/CRF in 4 geographic locations in the United States. Children (N=1708) whose families represent the low to middle socioeconomic strata and predominant U.S. racial/ethnic groups were involved.
Results:
The final CHIP-CE/CRF includes 5 domains: Satisfaction (with self and health), Comfort (emotional and physical symptoms and limitations), Resilience (positive activities that promote health), Risk Avoidance (risky behaviors that influence future health), and Achievement (of social expectations in school and with peers). The internal consistency and test-retest reliability of the domains are good to excellent, with a definite age gradient such that younger children's responses are less reliable although still acceptable. Validity is supported through criterion and construct validity tests and structural analyses. Standard scores (mean, 50; standard deviation, 10) were established.
Conclusions:
Health status can be reliably and validly assessed directly from children 6 to 11 years old on the CHIP-CE/CRF. In combination with the CHIP-AE, self-reported health status can now be obtained from youth 6 to 18 years old using a consistent conceptual framework. This can greatly improve the precision and comparability of health assessments of youth, enhancing the validity of outcome research and longitudinal studies across childhood and adolescence.
Few measures are available to assess the health status of the growing numbers of children who now survive long-term with chronic physical disorders. A Functional Status Measure, FS I, that had considerable promise for measuring individual child health status and characterizing populations was developed in 1978. This paper describes a revised version of that measure. Data were collected using a new sample of 732 children (aged 0 to 16 years) with and without chronic physical conditions in order to assess the psychometric properties of the new instrument. The FS II(R) has both a long (43-item) and a short (14-item) version. The long version has a total score derived from a one factor solution and a two factor solution consisting of General Health and Stage Specific factors for each age group. The 14-item version of FS II(R) uses a common core of items across the entire age span. Internal consistency estimates (alphas) for the factor-based and 14-item versions are all >= 0.80. At each age, long and short versions behave similarly in a wide range of tests of discriminant, construct, and content validity-strong support that they constitute a common measure. The FS II(R) has excellent psychometric properties and provides concise measures of health status of children spanning the entire childhood age range from 0 to 16 years. It has particular strengths for the measurement of health status of children with chronic physical conditions who are not disabled.
Study Design. An international group of back pain researchers considered recommendations for standardized measures in clinical outcomes research in patients with back pain. Objectives. To promote more standardization of outcome measurement in clinical trials and other types of outcomes research, including meta‐analyses, cost‐effectiveness analyses, and multicenter studies. Summary of Background Data. Better standardization of outcome measurement would facilitate comparison of results among studies, and more complete reporting of relevant outcomes. Because back pain is rarely fatal or completely cured, outcome assessment is complex and involves multiple dimensions. These include symptoms, function, general well‐being, work disability, and satisfaction with care. Methods. The panel considered several factors in recommending a standard battery of outcome measures. These included reliability, validity, responsiveness, and practicality of the measures. In addition, compatibility with widely used and promoted batteries such as the American Academy of Orthopaedic Surgeons Lumbar Cluster were considered to minimize the need for changes when these instruments are used. Results. First, a six‐item set was proposed, which is sufficiently brief that it could be used in routine care settings for quality improvement and for research purposes. An expanded outcome set, which would provide more precise measurement for research purposes, includes measures of severity and frequency of symptoms, either the Roland or the Oswestry Disability Scale, either the SF‐12 or the EuroQol measure of general health status, a question about satisfaction with symptoms, three types of "disability days," and an optional single item on overall satisfaction with medical care. Conclusion. Standardized measurement of outcomes would facilitate scientific advances in clinical care. A short, 6‐item questionnaire and a somewhat expanded, more precise battery of questionnaires can be recommended. Although many considerations support such recommendations, more data on responsiveness and the minimally important change in scores are needed for most of the instruments.
Background:
The paper reports on the development of the WHOQOL-BREF, an abbreyiated version of the WHOQOL-100 quality of life assessment.
Method:
The WHOQOL-BREF was derived from data collected using the WHOQOL-100. It produces scores for four domains related to quality of life: physical health, psychological, social relationships and environment. It also includes one facet on overall quality of life and general health.
Results:
Domain scores produced by the WHOQOL-BREF correlate highly (0.89 or above) with WHOQOL-100 domain scores (calculated on a four domain structure). WHOQOL-BREF domain scores demonstrated good discriminant validity, content validity, internal consistency and test-retest reliability.
Conclusion:
These data suggest that the WHOQOL-BREF provides a valid and reliable alternative to the assessment of domain profiles using the WHOQOL-100. It is envisaged that the WHOQOL-BREF will be most useful in studies that require a brief assessment of quality of life, for example, in large epidemiological studies and clinical trials where quality of life is of interest. In addition, the WHOQOL-BREF may be of use to health professionals in the assessment and evaluation of treatment efficacy.
Study Design. A prospective repeated measures design was used to produce a back-specific version of the Short Form-36 Physical Functioning scale (SF-36 PF) by Rasch analysis of a pool of items from the SF-36 PF, Oswestry Disability Questionnaire, and the Quebec Back Pain Disability Scale. Objectives. To identify items for a back-specific version of the SF-36 PF scale and to compare the psychometric properties of the new version with the original 10-item scale. Summary of Background Data. Adequate assessment of patient function requires the administration of a generic and a condition-specific questionnaire. A back-specific version of the SF-36 PF would facilitate comprehensive patient assessment in the clinical setting. Methods. Consecutive patients with low back pain presenting for physiotherapy treatment were recruited at three public hospitals, three community health services, and four private practices. Patients completed questionnaires on two occasions 6 weeks apart. Results. A scale of 18 items showed a better fit to the Rasch model than the original SF-36 PF scale. Items in the original scale that had a poor fit (INFIT/OUTFIT statistics outside the range 0.7-1.3) showed an acceptable fit in the new scale. The augmented scale had comparable reliability and improved responsiveness to the original 10-item SF-36 PF scale. The minimum detectable change (90% confidence) and the minimum clinically important difference were 12 points. Floor and ceiling effects were practically eliminated. The psychometric properties of the new scale were comparable to those of the Oswestry Disability Questionnaire. Conclusions. The Low-Back SF-36 PF18 comprises the 10-item SF-36 PF scale and four items each from the Oswestry and Quebec back pain questionnaires. The possible total score ranges from 0 to 100, with a higher score indicating better function. The new scale appears to offer advantages over the use of the original scale for the assessment of functioning in patients with low back pain.
Following the translation development stage, the second research stage of the IQOLA Project tests the assumptions underlying item scoring and scale construction. This article provides detailed information on the research methods used by the IQOLA Project to evaluate data quality, scaling and scoring assumptions, and the reliability of the SF-36 scales. Tests include evaluation of item and scale-level descriptive statistics; examination of the equality of item-scale correlations, item internal consistency and item discriminant validity; and estimation of scale score reliability using internal consistency and test-retest methods. Results from these tests are used to determine if standard algorithms for the construction and scoring of the eight SF-36 scales can be used in each country and to provide information that can be used in translation improvement.
Established in 1987, the EuroQol Group initially comprised a network of international, multilingual and multi-disciplinary researchers from seven centres in Finland, the Netherlands, Norway, Sweden and the UK. Nowadays, the Group comprises researchers from Canada, Denmark, Germany, Greece, Japan, New Zealand, Slovenia, Spain, the USA and Zimbabwe. The process of shared development and local experimentation resulted in EQ-5D, a generic measure of health status that provides a simple descriptive profile and a single index value that can be used in the clinical and economic evaluation of health care and in population health surveys. Currently, EQ-5D is being widely used in different countries by clinical researchers in a variety of clinical areas. EQ-5D is also being used by eight out of the first 10 of the top 50 pharmaceutical companies listed in the annual report of Pharma Business (November/December 1999). Furthermore, EQ-5D is one of the handful of measures recommended for use in cost-effectiveness analyses by the Washington Panel on Cost Effectiveness in Health and Medicine. EQ-5D has now been translated into most major languages with the EuroQol Group closely monitoring the process.
The CHQ-CF87 was constructed to measure the self-perceived physical and psychosocial well-being of children ten years of age and older using 10 multi-item Likert-type summated rating scales. This study augments previous work about children's self-reported health status using the CHQ-CF87 by examining tests of item scaling assumptions and differences in health scores as reported by children representing three predominant cultural groups in the US (African-American, Spanish-American and Caucasian). The quality of CHQ data was evaluated based on tests of items scaling assumptions, internal consistency reliability coefficients using Cronbach's alpha, data completeness rates, and within scale response consistency. Test sites included a middle school in a moderately-sized suburb in the northeast (N = 278), an attention deficit hyperadivity disorder (ADHD) clinic in the Boston area (N=56), and a hemodialysis clinic associated with Children's Hospital in Los Angeles, CA (N=20). General linear models adjusted for age and gender were used to examine differences in scale scores across the three samples. The F-statistic provided information about the discriminant power of each of the CHQ scales. Differences in scale scores due to child gender were examined in the school-based sample using the pair-wise t-statistic. Consistently across all samples, perfect success rates were observed in tests of item internal consistency for six of the ten CHQ scales. Perfect and near perfect (92%) success rates were observed for all ten scales fielded in the school sample, eight of the nine scales in the ADHD sample, and six of the nine scales in the hemodialysis sample. Alpha coefficients were consistently above 0.80. Rates of completed items within scales ranged from 89-99%. Consistent responses within each of the CHQ scales were observed for 70% of the school sample and 84% for the two clinic samples. With a single exception (limitations in schoolwork or with friends due to behavioural problems), F-statistics were significant for all CHQ scales across the three groups. As expected, mean scores were less favourable overall for the sample receiving hemodialysis treatment. The only significant difference between boys and girls was observed for the bodily pain scale (r=2.54, p & < 0.05). Results to date demonstrate that the CHQ-CF87 is a reliable and valid child-completed health assessment tool.
The field of health status and quality of life (QoL) measurement has been evolving for the better part of 30 years. To identify health status and QoL instruments and review them against rigorous criteria as a precursor to creating an instrument library for later dissemination, the Medical Outcomes Trust in 1994 created an independently functioning Scientific Advisory Committee (SAC). In the mid-1990s, the SAC defined a set of attributes and criteria to carry out instrument assessments; 5 years later, it updated and revised these materials to take account of the expanding theories and technologies upon which such instruments were being developed. This paper offers the SAC's current conceptualization of eight key attributes of health status and QoL instruments (i.e., conceptual and measurement model; reliability; validity; responsiveness; interpretability; respondent and administrative burden; alternate forms; and cultural and language adaptations) and the criteria by which instruments would be reviewed on each of those attributes. These are suggested guidelines for the field to consider and debate; as measurement techniques become both more familiar and more sophisticated, we expect that experts will wish to update and refine these criteria accordingly. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
BACKGROUND
The health-related functioning of patients with cancer is compromised by several factors, including the disease process, treatment, and the various symptoms that are produced by both disease and treatment. This study was designed to specify the relationship between patients' pain severity and their self-reported quality of life.METHODS
The study enrolled 216 consecutive consenting adult patients from 2 Chinese cancer centers with pathologically-diagnosed metastatic cancer who could understand and complete the self-report measures. The majority had cancer-related pain and were receiving analgesics. The Chinese version of the Brief Pain Inventory was used to assess the severity and interference of pain. A Chinese translation of the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36) was used to assess health-related functional status. Patients' physicians completed a form that indicated characteristics of the patients' cancer, Eastern Cooperative Oncology Group performance status, pain, and current pain treatment.RESULTSIncreasing severity of pain was associated with worsening health-related functioning, even when an estimate of disease severity was taken into account. The correlation between pain severity and impairment was nonlinear. The functional health and well-being of cancer patients with no or mild pain was significantly less impaired than that of patients with moderate or severe pain. The impairment of patients with moderate and severe pain did not differ.CONCLUSIONS
Pain severity is an important variable to be taken into account when quality of life outcome measures are considered. The functioning of cancer patients with well-controlled (mild) pain did not differ significantly from that of patients without pain. Providing pain relief should significantly improve the functional status of cancer patients. Cancer 1999;86:1848–55. © 1999 American Cancer Society.
This paper is concerned with methods and theory recently used in cross-cultural research. It begins by looking at why we need cross-cultural measures and why we need more of them. A discussion of the translation styles, and the issues underpinning their design is central to this discussion. Through a description of the World Health Organisation Quality of Life Assessment instruments and their development, the paper demonstrates how some of the earlier theoretical and methodological challenges have been addressed, together with a critique of its limitations.
This paper describes the World Health Organization's project to develop a quality of life instrument (the WHOQOL). It outlines the reasons that the project was undertaken, the thinking that underlies the project, the method that has been followed in its development and the current status of the project. The WHOQOL assesses individuals' perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. It has been developed collaboratively in several culturally diverse centres over four years. Piloting of the WHOQOL on some 4500 respondents in 15 cultural settings has been completed. On the basis of this data the revised WHOQOL Field Trial Form has been finalized, and field testing is currently in progress. The WHOQOL produces a multi-dimensional profile of scores across six domains and 24 sub-domains of quality of life.
This paper reports on the field testing, empirical derivation and psychometric properties of the World Health Organisation Quality of Life assessment (the WHOQOL). The steps are presented from the development of the initial pilot version of the instrument to the field trial version, the so-called WHOQOL-100. The instrument has been developed collaboratively in a number of centres in diverse cultural settings over several years; data are presented on the performance of the instrument in 15 different settings worldwide.
PURPOSE: In the era of evidence-based medicine and shared decision making, the formal assessment of patient preference for treatments or treatment outcomes has attracted much attention. In this article, the two most common approaches to the evaluation of preference, ie, utility assessment and probability trade-off assessment, are described. The purpose is to provide clinicians with the background knowledge needed to interpret preference studies published in the literature and to judge whether the reported findings are relevant to their own patients.
METHODS: An overview is given of the methods used to assess utilities and probability trade-off scores. Evidence on determinants of such scores is presented. Examples from oncology are provided. Because experience with the treatment plays an important role as a determinant of preferences for both treatments and treatment outcomes, special attention is paid to the interpretation of studies in the light of subject selection. Directions for future research are suggested.
CONCLUSION: The choice of approach and the measuring instrument depend on the goal of the preference assessment. Normal psychologic processes, such as coping, adaptation, and cognitive dissonance reduction, cause patients who are about to undergo a therapy or have experienced a therapy to rate it more favorably than other patients do. This should be remembered when using evidence from the literature to inform patients or for patient decision making.
Levels of Well-Being are social preferences, or weights that members of society associate with time-specific states of function. A Weighted Life Expectancy, which can be used to measure program outputs, is created by summing the levels across diverse cases and multiplying them by probable transitions (prognoses) among the states and levels. This operation requires however, that the Levels of Well-Being be measured on underlying metric scale. The present analysis compares preference measurements from a simple category rating procedure with those obtained using the more complex and difficult magnitude estimation method which has been claimed to yield ratio level measures. In a randomly counterbalanced design, 65 college students rated 30 case descriptions representing the range of the Well-Being continuum. The results exhibit the classical logarithmic relation observed for a prothetic continua. When transformed to a meaningful 0-1 unit scale, however, the magnitude responses are compressed at the lower end of the scale near death. Such results are inconsistent not only with category rating, but also with intuitive notions of the relative importance of the function states, with the results of rating procedures that simulate social choice, and with evidence that confirms the interval properties of the category ratings themselves. Furthermore, the ease of administration of category rating means that multiple attributes of cases can be considered jointly, avoiding the need to aggregate scale values for different attributes by arbitrary rules. In sum, magnitude estimation is inappropriate as a measurement method for a Health Status Index and is probably also inappropriate for other measures of utility and social choice.
A multiattribute health status classification system was devised to describe comprehensively the health status of survivors of childhood cancer.
The system consists of seven attributes: sensation, mobility, emotion, cognition, self-care, pain, and fertility. Three to five levels of functioning are defined for each attribute. Any specific combination of seven attribute levels constitutes a health state. In the first survey, the system was used to classify the health status of 20 children currently undergoing therapy for high-risk acute lymphoblastic leukemia (ALL), Wilms' tumor, or neuroblastoma, and eight who had completed treatment. A second survey consisted of 13 children with brain tumors on active treatment.
In general, independent ratings by clinicians were in agreement, and consensus was readily achieved in 1 to 2 minutes per patient. Children on therapy experienced a higher burden of morbidity than those off treatment. Brain tumor patients experienced more morbidity than patients in the first survey.
The multiattribute system provides a compact but comprehensive tool for long-term follow-up of survivors of childhood cancer. It captures both multiple sequelae and varying levels of severity. By using a mathematical utility function, a single summary score of health-related quality of life may be assigned to each health state. Additional studies to establish reproducibility, validity, responsiveness, and generalizability are indicated.
Few measures are available to assess the health status of the growing numbers of children who now survive long-term with chronic physical disorders. A Functional Status Measure, FS I, that had considerable promise for measuring individual child health status and characterizing populations was developed in 1978. This paper describes a revised version of that measures. Data were collected using a new sample of 732 children (aged 0 to 16 years) with and without chronic physical conditions in order to assess the psychometric properties of the new instrument. The FS II(R) has both a long (43-item) and a short (14-item) version. The long version has a total score derived from a one factor solution and a two factor solution consisting of General Health and Stage Specific factors for each age group. The 14-item version of FS II(R) uses a common core of items across the entire age span. Internal consistency estimates (alphas) for the factor-based and 14-item versions are all greater than 0.80. At each age, long and short versions behave similarly in a wide range of tests of discriminant, construct, and content validity--strong support that they constitute a common measure. The FS II(R) has excellent psychometric properties and provides concise measures of health status of children spanning the entire childhood age range from 0 to 16 years. It has particular strengths for the measurement of health status of children with chronic physical conditions who are not disabled.
Four groups of investigators in the Research Consortium on Chronic Illness in Childhood have used the Personal Adjustment and Role Skills Scale (PARS) III to assess the psychosocial adjustment of children with chronic physical illnesses and no mental impairment. The PARS III consists of 28 items that measure psychosocial functioning in six areas: peer relations, dependency, hostility, productivity, anxiety-depression, and withdrawal. Analyses of the measure's reliability and validity, using a total combined sample of 450 school-age children (ages 5-18 years) with a variety of chronic illnesses and three comparison samples of healthy children, provide evidence that the PARS III can be used successfully to assess psychosocial adjustment of children with chronic illnesses and no cognitive impairments.
Functional status measurement and the assessment of health status are reaching their maturity as technical disciplines. Good tools exist that meet requirements such as brevity, validity, reliability, ease of administration, and ease of scoring, which make them potentially suitable for use in clinical practice. Despite this progress, widespread adoption of measurement tools has not occurred in the clinical world. The authors analyze both the potential and the barriers to use of health assessment tools in practice and note the need for better scientific evidence of their clinical utility, as opposed to their information content. Dissemination of these tools among practitioners will require, above all, evidence and conviction that the use of measurement instruments will actually enhance the very health status outcomes they assess.
Application of generic and specific measures of health status and quality of life to different diseases, conditions, states, and populations is increasing. Four strategies for using these measures are separate generic and specific measures, modified generic measures, disease-specific supplements, and batteries. The preferred strategy depends on project aims, methodological concerns, and practical constraints. Generic measures are necessary to compare outcomes across different populations and interventions, particularly for cost-effectiveness studies. Disease-specific measures assess the special states and concerns of diagnostic groups. Specific measures may be more sensitive for the detection and quantification of small changes that are important to clinicians or patients. Comparison studies are needed of the validity, reliability, and responsiveness of generic and disease-specific measures in the same population and in minority and age-specific groups.
This paper begins with a discussion of measurement principles relevant to determining health-state preferences. Six scaling methods are described and evaluated on the basis of their reliability, validity, and feasibility. They are the standard gamble, time trade-off, rating scale, magnitude estimation, equivalence, and willingness-to-pay methods. Reliability coefficients for most methods are acceptable although the low coefficients for measurements taken a year apart suggest that preferences change over time. Convergent validity among methods has been supported in some but not all studies, and there are limited data supporting hypothetical relationships between preferences and other variables. The category ratings method is easiest to administer and appears to yield valid scale values; thus, it is recommended for large-sample studies. However, decision-oriented methods, particularly the time trade-off and standard gamble, may be more effective in small-scale investigations and individual decision making.
Within the context of a double blind randomized controlled parallel trial of 2 nonsteroidal antiinflammatory drugs, we validated WOMAC, a new multidimensional, self-administered health status instrument for patients with osteoarthritis of the hip or knee. The pain, stiffness and physical function subscales fulfil conventional criteria for face, content and construct validity, reliability, responsiveness and relative efficiency. WOMAC is a disease-specific purpose built high performance instrument for evaluative research in osteoarthritis clinical trials.
Quality of life is a broad concept that incorporates all aspects of an individual's existence. Health-related quality of life is a subset relating only to the health domain of that existence. The utility approach can be used to measure a single cardinal value, usually between 0 and 1, that reflects the health-related quality of life of the individual at a particular point in time. The utility approach is founded in modern utility theory, a normative rational model of decision-making under uncertainty. The measurement techniques that have been used include standard gamble, time trade-off, and rating scales. The techniques are described in the paper and compared in terms of their acceptability to subjects, reliability, precision, validity, and ease of use. It is concluded that the utility approach is beyond the experimental stage, and is now a viable alternative for investigators to use in measuring health-related quality of life.
A linear health utility scale is described, complete with measurement instruments, that allows assignment of utility values to health states for any disease or treatment program. Given that the change produced by a health care program in the health states of a population is determinable, this utility scale permits assessment of the effectiveness of that program in terms of the change it produces in overall health utility. This is the basis of a model that will rank programs by their effectiveness/cost ratios or select them into a subset achieving the maximum effectiveness under specific cost or other constraints. Two algorithms are described, suitable respectively for priority ranking and for selection of programs giving maximum effectiveness under constraints, and the application of the model is discussed.
In a prospective study of 230 episodes of low-back pain presenting in primary care, the natural history of the symptom of low-back pain has been described. Clinical features predictive of outcome have been identified in order to define groups of patients who were relatively homogeneous with respect to the outcome of the episode. A Disability Questionnaire performed more satisfactorily as an outcome measure than either absence from work or a simple pain-rating scale. Guidelines for future trials of treatment of back pain in primary care are described.
One of the problems in mounting a trial of treatment of back pain is the lack of suitable outcome measures. This paper describes the development and validation of a questionnaire designed to measure selfrated disability due to back pain. The questionnaire is short, simple, sensitive, and reliable. It would be suitable for use in future trials of treatment. (C) Lippincott-Raven Publishers.
The final development of the Sickness Impact Profile (SIP), a behaviorally based measure of health status, is presented. A large field trial on a random sample of prepaid group practice enrollees and smaller trials on samples of patients with hyperthyroidism, rheumatoid arthritis and hip replacements were undertaken to assess reliability and validity of the SIP and provide data for category and item analyses. Test-retest reliability (r = 0.92) and internal consistency (r - 0.94) were high. Convergent and discriminant validity was evaluated using the multitrait--multimethod technique. Clinical validity was assessed by determining the relationship between clinical measures of disease and the SIP scores. The relationship between the SIP and criterion measures were moderate to high and in the direction hypothesized. A technique for describing and assessing similarities and differences among groups was developed using profile and pattern analysis. The final SIP contains 136 items in 12 categories. Overall, category, and dimension scores may be calculated.
As a way of delineating different levels of cancer pain severity, we explored the relationship between numerical ratings of pain severity and ratings of pain's interference with such functions as activity, mood, and sleep. Interference measures were used as critical variable to grade pain severity. We explored the possibility that pain severity could be classified into groupings roughly comparable to mild, moderate, and severe. Our hypothesis was that mild, moderate, and severe pain would differentially impair cancer patients' function. We were able to identify boundaries among these categories of pain severity in terms of their interference with function. We also examined the extent to which cancer patients from different language and cultural groups differ in their self-reported interference as a function of pain severity level. We found optimal cutpoints that form 3 distinct levels of pain severity that can be defined on a 0-10-point numerical scale. We determined that, based on the degree of interference with cancer patients' function, ratings of 1-4 correspond to mild pain, 5-6 to moderate pain, and 7-10 to severe pain. Our analysis illustrates that the pain severity-interference relationship is non-linear. These cutpoints were the same for each of the national samples in our analysis, although there were slight differences in the specific interference items affected by pain. These cutpoints might be useful in clinical evaluation, epidemiology, and clinical trials.
Previous research indicates that persons assigning values to ranges of health states consider some states to be worse than death. In a study of decisions regarding life-sustaining treatments, the authors adapted and assessed existing methods for their ability to identify and quantify preferences for health states near to or worse than death in a population of well adults and nursing home residents. The cognitive burdens involved in these decisions were also evaluated. Hypothetical health states based on six attributes of functional status were constructed to describe severe constant pain, dementia, and coma. The methods of rank order, category scaling, time tradeoff, and standard gamble were adapted to quantify states worse than death. Cognitive burden was assessed using completion rates, interviewer assessments, respondents' self-reporting, and investigators' evaluations. For both respondent groups, all methods showed similar degrees of cognitive burden for those able to complete the tasks and were similar in their ability to identify and quantify preferences. The majority of nursing home residents, however, were unable to complete or comprehend the measurement tasks. Most respondents evaluated their current health and severe constant pain as better than death; dementia and coma were more often considered equal to or worse than death. These results indicate that respondents can and do evaluate some health states as worse than death. The authors recommend systematic inclusion of states worse than death to describe a more complete range of preference values and routine assessment of the cognitive burdens of assessment techniques to evaluate methodologies.