Health and Quality of Life Outcomes

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Article
Objectives It has been suggested that obesity phenotypes are related to mental health problems and health-related quality of life (HRQoL). However, there is no certain consensus. This systematic review aimed to evaluate the association between different obesity phenotypes with common psychiatric symptoms and HRQoL. Methods Electronic databases i.e. PubMed, Scopus, EMBASE, and google scholar were searched until September 2021, to identify studies that investigated associations between the obesity phenotypes with psychiatric symptoms and/or mental and physical HRQoL. Two researchers independently checked titles and abstracts, evaluated full-text studies, extracted data, and appraised their quality using the Newcastle–Ottawa Scale. Results Eighteen studies, with a total of 3,929,203 participants, were included. Of the studies included in this systematic review, 10 articles evaluated the association between obesity phenotypes and psychiatric symptoms, while six papers investigated the association between HRQoL and obesity phenotypes, and two studies assessed both. As a whole, the findings of these studies suggest that obese individuals with a favorable metabolic profile have a slightly higher risk of mental health problems and poor quality of life, however, the risk becomes larger when obesity is combined with an adverse metabolic profile. So, metabolically healthy obesity may not be a completely benign condition in relation to mental disorders and poor quality of life. Conclusion According to published research, obesity is likely to increase the risk of mental health problems and poor quality of life when metabolic disturbances are present.
 
Mean EQ-5D score by IMD quintile and age group—males
Mean EQ-5D score by IMD quintile and age group—females
Measures of inequality in EQ-5D-5L utility scores by age and sex
Relative differences in the proportion of respondents reporting no problems for each EQ-5D-5L dimension by age and sex
Article
Background Socioeconomic status is a key predictor of lifetime health: poorer people can expect to live shorter lives with lower average health-related quality-of-life (HRQoL) than richer people. In this study, we aimed to improve understanding of the socioeconomic gradient in HRQoL by exploring how inequalities in different dimensions of HRQoL differ by age. Methods Data were derived from the Health Survey for England for 2017 and 2018 (14,412 participants). HRQoL was measured using the EQ-5D-5L instrument. We estimated mean EQ-5D utility scores and reported problems on five HRQoL dimensions (mobility, self-care, usual activities, pain/discomfort, anxiety/depression) for ages 16 to 90+ and stratified by neighbourhood deprivation quintiles. Relative and absolute measures of inequality were assessed. Results Mean EQ-5D utility scores declined with age and followed a socioeconomic gradient, with the lowest scores in the most deprived areas. Gaps between the most and least deprived quintiles emerged around the age of 35, reached their greatest extent at age 60 to 64 (relative HRQoL of most deprived compared to least deprived quintile: females = 0.77 (95% CI: 0.68–0.85); males = 0.78 (95% CI: 0.69–0.87)) before closing again in older age groups. Gaps were apparent for all five EQ-5D dimensions but were greatest for mobility and self-care. Conclusion There are stark socioeconomic inequalities in all dimensions of HRQoL in England. These inequalities start to develop from early adulthood and increase with age but reduce again around retirement age.
 
Visual engagement material used in study invitations
Electronic platform—research study metadata query view
Article
Introduction: Insulin pump therapy represents an alternative to multiple daily injections and can improve glycemic control and quality of life (QoL) in Type 1 diabetes mellitus (T1DM) patients. We aimed to explore the differences and factors related to the T1DM-specific QoL of such patients in Latvia. Design and methods: A mixed-method cross-sectional study on 87 adult T1DM patients included 20 pump users and 67 users of injections who participated in the quantitative part of the study; 8 pump users and 13 injection users participated in the qualitative part. Patients were invited to participate using a dedicated digital platform. Their QoL and self-management habits were assessed using specially developed questionnaires adapted to Latvian conditions. Multiple logistic regression models were built to investigate the association between social and self-management factors and patients’ QoL. In addition, qualitative analysis of answers was performed. Results: Insulin pump users were younger, had higher incomes, and reported higher T1DM expenses than users of multiple daily injections. There were no differences in self-management between the groups; Total QoL differed at the 0.1 significance level. In fully adjusted multiple logistic regression models, the most important factor that increased Total QoL was lower T1DM-related expenses (odds ratio, OR 7.02 [95% confidence interval 1.29; 38.0]). Men and those with more years of living with T1DM had better QoL (OR 9.62 [2.20; 42.1] and OR 1.16 [1.05; 1.29], respectively), but the method of administration was not significantly associated with QoL (OR 7.38 [0.87; 62.9]). Qualitative data supported the results of quantitative analysis. Conclusions: QoL was the main reason to use an insulin pump, while the expense was the main reason to avoid the use of it or to stop using it. Reimbursement policies thus should be considered to enable patients to choose the more convenient method for themselves.
 
Article
Background HIV-related stigma is associated with poor quality of life and poor healthcare-seeking behaviours in young people living with HIV (YPLHIV) and young people affected by HIV (YPAHIV). India has an estimated 120,000 YPLHIV and 4 million YPAHIV, but efforts to measure HIV-related stigma in them are sparse, impeded by the lack of measuring instruments. Here, we describe the development of the Pune HIV-Stigma Scale (PHSS) and modified-PHSS to measure HIV-related stigma among YPLHIV and YPAHIV, respectively, in India. Methods We used data from a mental health study for YPLHIV and YPAHIV aged 15–25 years, conducted at Byramjee Jeejeebhoy Government Medical College & Sassoon General Hospitals, Pune, India, between August 2018 and June 2021. Findings from multiple confirmatory factor analyses and cognitive interviews guided the development of the 12-item PHSS. The modified-PHSS was developed by confirming the structure of the PHSS for YPAHIV. Convergent validity with Center for Epidemiological Studies Depression (CES-D) and UCLA Loneliness scales was assessed using Spearman’s correlation coefficients. Results Model fit indices were good for both the PHSS (χ ² = 65.0, df = 48, p value: 0.052; root mean square error of approximation (RMSEA): 0.054; comparative fit index (CLI): 0.980; Tucker–Lewis index (TLI): 0.972; and standardized root mean square residual (SRMR): 0.067), and the modified-PHSS (χ ² = 56.9, df = 48, p value: 0.176; RMSEA: 0.045; CLI: 0.983; TFI: 0.976, and SRMR: 0.078). Spearman’s correlation coefficients indicated low to moderate convergent validity (ρ: 0.03–0.52) across different subscales of the PHSS and modified-PHSS. Cronbach’s alpha for the PHSS was 0.82 and for the modified-PHSS 0.81. Conclusion We developed the first scales to measure HIV-related stigma among YPLHIV and YPAHIV in India. These concise scales can facilitate measurement of HIV-related stigma more frequently in research studies. We recommend that they be tested in different Indian languages.
 
Flow diagram of study search and identification
Risk of bias summary of include studies
Article
Background Patients who suffered from ankylosing spondylitis (AS) or non-radiographic axial spondyloarthritis (nr-axSpA) often have poor quality of life (QoL) and there has been a substantial increase in research on acceptable questionnaires for assessment of QoL. This systematic review aims at examining the validity and reliability of QoL questionnaires in patients with AS/nr-axSpA. Methods Randomized controlled trials (RCTs), cohort trials, and cross-sectional trails were retrieved by searching seven databases. Primary outcomes included test–retest reliability and construct validity. Secondary outcomes included internal consistency, structural validity, responsiveness and so on. Data extraction and analyses were conducted according to the Cochrane standards. The Agency for Healthcare Research and Quality (AHRQ) checklists was used to assess the risk of bias for each included study. We used the Consensus-based Standards for the Selection of Health Status Measurement Instruments (COSMIN) to assess the methodological quality and measurement property of included instruments. The quality of evidence on pre-specified outcomes were assessed by the Grades of Recommendations, Development and Evaluation (GRADE) approach. Results 22 publications containing 10 self-rating instruments were included in this study. Most studies were cross-sectional in design and a total of 3,085 participants were enrolled. 19 studies had moderate to high test–retest reliability. Cronbach’s alpha (α) Coefficients were generally high (0.79–0.97) for overall scales. The ankylosing spondylitis quality of life (ASQOL) and evaluation of ankylosing spondylitis quality of life (EASi-QoL) questionnaires showed the strongest measurement properties in high-quality studies. The correlation coefficient for test–retest reliability of the ASQOL questionnaire was 0.85 (95% CI 0.80 to 0.89). The pooled Cronbach’s α coefficients of the ASQOL questionnaire and the EASi-QoL questionnaire were high. Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) and Bath Ankylosing Spondylitis Functional Index (BASFI) were considered as two validity criteria. For the ASQOL and EASi-QoL questionnaire, pooled convergent validity associations with BASDAI and BASFI were low to strong (0.24–0.81). Conclusions This study indicated acceptable reliability and stability of included QoL questionnaires. The ASQOL and the EASi-QoL questionnaires are validated and reliable disease-specific questionnaires for the assessment of QoL in patients with AS/nr-axSpA.
 
Conceptual hierarchical framework of factors related to oral health-related quality of life
Prevalence and severity of impact on children's quality of life according to domains and total score
Article
Background Oral health literacy is the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate oral health decisions. However, scientific evidence about the oral health literacy of caregivers and the children’s oral health-related quality of life. The purpose of this study was to verify the relationship between the level of oral health literacy of caregivers and the children's oral health-related quality of life (OHRQOL). Methods This study was conducted with children aged 2 to 4 in Diadema, São Paulo, Brazil. Six hundred thirty children were examined to assess the prevalence of dental caries (dmft index). Parents were interviewed to obtain sociodemographic status, oral conditions, and oral health literacy (OHL). The variable outcome was the children's OHRQOL as assessed by the Early Childhood Oral Health Impact Scale (ECOHIS). We fitted zero-inflated negative binomial regression (ZINB) models to evaluate associations between the study outcome and covariates in terms of PR (Prevalence Ratios), RR (Rate Ratios), and their respective Confidence Intervals (95% CI). Results Children's OHRQOL was not associated with OHL. Dental caries had a negative impact on the children's quality of life ( p < 0.05). A reduced impact on OHRQOL is also associated with having siblings (PR = 0.70, 95% CI 0.52–0.95). A higher age of the mother reduced OHRQOL impacts (PR = 0.72, 95% CI 0.52–0.98). Conclusions The factors associated with children's OHRQOL were the number of siblings, the mothers' age, and dental caries. This study observed no association between parental OHL and children's OHRQOL.
 
ADaPTS data collection timeline after HSCT
Parent and Adolescent QoL at six months and one year post HSCT as measured by PedsQL Inventories™
Article
Background Sickle cell disease is an inherited chronic hematological disorder with an average lifespan of fifty years. The human cost of sickle cell disease includes missed school days, occupational opportunities, social isolation, stigmatization, and psychological sequelae. Hematopoietic cell transplantation (HCT) is the only curative therapy available but comes with potential morbidity and mortality. Our study explores how quality of life (QoL) is affected from the perspective of an adolescent who has undergone a nonmyeloablative matched sibling donor HCT. Methods We employed multiple case study methodology with purposeful sampling by selecting information-rich cases. Data sources: 1) QoL inventories 2) patient interviews 3) parent interview 4) vital support interview 5) medical record analysis. Data analysis: Intra-case analysis by assembling evidence within a single case and then analyzing the differences within cases to create a rich case description. Next, a time series analysis was completed to track changes in patients’ QoL. We used multiple sources of data to compose a timeline and changes across time. Then, we employed pattern matching as an analytical technique allowing for examination of patterns across cases. Finally, we used cross case synthesis to review results of each case. Results Quality of life was reported across the physical, social and psychological domains for 5 participants. All had sickle cell HgSS genotype, 80% were male and 80% were born outside of Canada. Physical domain: pre-transplant, 100% of patients experienced pain, and the majority suffered from fatigue, insomnia, and fevers resulting in hospitalizations. Afterwards, participants reported improved physical wellbeing. Social domain: pre-transplant, QoL was poor characterized by stigma, social isolation, and parental absenteeism. Post-HSCT adolescents gained social acceptance in areas that had stigmatized and excluded them. They were able to participate freely in activities with peers and their social life vastly improved. Psychological pre-transplant life experiences were overshadowed by psychological stress. The majority commented that their future was bleak and may lead to premature death. Afterwards adolescents described a crisis free life with positive psychological outcomes. Conclusions Adolescents with sickle cell disease who undertook HCT demonstrated improved QoL one year post transplant with regard to physical, social and psychological well-being.
 
Flow chart of the 81 extremely preterm (EP) born subjects and 46 matched term-born controls at the three follow-up time points. NICU neonatal intensive care unit
Group means of four self-reported HRQoL domains from 24 to 34 years of age in the extremely preterm (EP) born and the term-born (TB) participants according to SF-36. Higher score indicates better HRQoL, possible score from 0 to 100
Group means of self-reported somatic and psychological health complaints from 17 to 34 years of age in the extremely preterm (EP) born and the term-born (TB) participants according to the Health Behaviour in School-aged Children–Symptom Checklist (HBSC-SCL). Higher score indicates more complaints, possible sub score from 0 to 16 on sub scores
Article
Purpose To study development trajectories to 34 years of age of health-related quality of life (HRQoL) and subjective health complaints in extremely preterm (EP) born subjects with and without disability, and to compare with term-born controls. Methods A Norwegian longitudinal population-based cohort of subjects born in 1982–85 at gestational age ≤ 28 weeks or with birth weight ≤ 1000 g and matched term-born controls completed the Norwegian version of the Short Form Health Survey-36 at ages 24 and 34 and the Health Behaviour in School-aged Children–Symptom Checklist at ages 17, 24 and 34 years. Data were analysed by unadjusted and adjusted mixed effects analyses with time by subject group as interaction term. Results A total of 35/49 (73%) surviving EP-born and 36/46 (78%) term-born controls participated at this third follow-up. EP-born subjects with severe disability reported clinical significant lower mean score in all domains compared to the term-born controls. Healthy EP-born subjects reported significantly lower mean scores for vitality, role emotional and mental health, and significantly higher mean score for total and psychological health complaints compared to term-born controls. There were no significant interactions with age regarding HRQoL and somatic health complaints, while there were significant differences in psychological health complaints; the EP-born scored higher at age 24 and lower at age 34. Conclusions EP-born adults at age 34 reported inferior HRQoL versus term-born peers, especially in the mental health domains, indicating that the negative differences observed at 24 years remained unchanged.
 
The area under the receiver operating characteristic curve, indicating that the simplified Chinese version of VISA-A can distinguish between healthy people and patients with Achilles tendinopathy. The area under the curve (AUC) is 0.9407, and the 95% confidence interval is 0.9153–0.9661
Article
Purpose We aimed to create a standardized cross-cultural adaptation of the simplified Chinese version of VISA-A, test its reliability and validity and conduct exploratory factor analysis on the correlation between items. Methods According to international recommendations for the cross-cultural adaptation of questionnaires, after considering the opinions of patients, we translated and revised the English version to create a simplified Chinese version of the questionnaire. We recruited healthy subjects in the general specialty of one university (n = 90) and the physical education specialty of another university (n = 89), and we recruited patients with Achilles tendinopathy in a third group (n = 85). Reliability was evaluated by calculating test–retest reliability and internal consistency, validity was evaluated by exploring structural and criterion validity (correlation with the physical function and body pain items of the SF-36), and responsiveness was evaluated by calculating area under the receiver operating characteristic curve (AUC). Results The simplified Chinese version of the VISA-A had no ceiling or floor effects. Four common factors were extracted and explained by the exploratory factor analysis. The test–retest reliability (ICC = 0.97) and internal consistency (Cronbach’s alpha = 0.84) were adequate. The questionnaire had moderate correlations with the physical function and body pain items of the SF-36. The AUC was 0.9407. Conclusion The simplified Chinese version of the VISA-A had good reliability and validity and excellent responsiveness, but the factorial structure is not inconsistent with the dimensions of the original version. It can be used to assess and manage patients with Achilles tendinitis in the Chinese culture.
 
Article
Introduction Cognitive impairment is common in first-episode psychosis patients and often associated with poor quality of life and functional impairment. However, most literature on this association is from high income countries and not low resource countries like Uganda. We aimed to determine the association between cognitive impairment with quality of life and functional impairment in Ugandan first-episode psychosis patients. Methods At Butabika national psychiatric hospital of Uganda, we enrolled 94 first-episode psychosis patients aged 18–60 years with a confirmed first-episode of psychosis and no previous treatment with antipsychotic medication. Neuropsychological assessment was performed using the MATRICS consensus cognitive battery (MCCB). Quality of life and functional impairment were assessed using the brief version of the World Health Organisation Quality of Life scale (WHOQOL-BREF) and the MINI International Neuropsychiatric Inventory (MINI) respectively. Linear regression analyses determined the association between impairment in different cognitive domains with various quality of life and functional impairment domains while controlling for age, gender and level of education. Results High scores in the reasoning and problem solving cognitive domain were associated with better quality of life in the psychological domain of WHOQOL-BREF ( p = 0.029). For functional impairment, high cognitive scores in the domains of speed of processing ( p = 0.018), reasoning and problem solving ( p = 0.015), working memory ( p = 0.017) and visual learning and memory ( p = 0.002) were associated with psychosis “ having a greater impact on other members of the family ” on the MINI. Higher scores in the social cognition domain were associated with “ less aggressive and disruptive behaviour ” ( p = 0.003). Conclusion Cognitive impairment in Ugandan first-episode psychotic patients is associated with both poorer quality of life and functional impairment. Remediation of cognitive function may be a plausible intervention to improve outcomes in Ugandan first-episode psychosis patients.
 
The Persian version of CPQ11–14 ISF-16
Article
Background The Child Perception questionnaire 11–14 (CPQ 11–14) is an efficient tool for assessment of oral health-related quality of life (OHRQoL). This questionnaire has been briefed to 16 items (CPQ11–14 ISF-16) to facilitate its employment. The purpose the present study was to translate CPQ11–14 ISF-16 to Persian language, culturally adapt, and initially evaluate its among adolescent population. Material and method The questionnaire has been translated to Persian, then back-translated to English, and finally underwent cultural adaptation and pretesting assessment. It was then filled out by 318 participents (175 grils and 143 boys), with the age of 11 to 14 years resident in Shiraz, Iran. The Persian version of CPQ11–14 ISF-16 along with the Psychosocial Impact of Dental Aesthetics Questionnaire (PIDAQ) and two suggested global questions were administered among participants to assess its criterion validity. Results The factor analysis extracted two domains and the factor loading of domains ranged from 0.423 to 0.837. Persian version of CPQ11–14 ISF-16 presented high internal consistency (Cronbach’s alpha = 0.854), and showed excellent criterion validity with PIDAQ (rho = 0.731, p < 0.001). There was a statistically significant positive moderate correlation between CPQ11–14 ISF-16 and its factors 1 and 2 and two global questions (first global question: rho = 0.439, p < 0.001; second global question: rho = 0.457, p = 0.035). Conclusion The Persian version of CPQ11–14 ISF-16 has optimal validity and reliability in a general population of 11–14-year-old Persian children.
 
Quality of life scores in drug addicts based on the QLICD-DA and comparisons with the norm
Impact factors on quality of life in drug addicts selected by stepwise linear regressions
Article
Background: Drug abuse has many negative effects not only on individuals but also on society. Nowadays, researchers pay a lot of attention to quality of life of drug addicts. However, there are few scales available to measure quality of life of drug addicts. The scale QLICD-DA (quality of life instrument for chronic diseases-drug addition) developed by modular approach could be used to measure quality of life of drug addicts with good validity, reliability and sensitivity. Objective: This study is aimed to understand the quality of life status and influencing factors in drug addicts by suitable sensitively scale, with the hypothesis of the quality of life in drug addicts being different from that of other peoples and possibly being influenced by many factors. Methods: By cluster random sampling method, 192 drug addicts at Kunming compulsory drug rehabilitation center were recruited to take part in the investigation. All participants completed the general information questionnaire and the scale QLICD-DA. We used a t-test to compare the scores of the quality of life of the participants with the norm (QOL scores from 1953 patients of 10 chronic diseases). A stepwise regression method was applied to explore the influencing factors of the quality of life in drug addicts. Results: 192 participants ranged in age from 19 to 59 with an average age of 34.86. Most of them were male (70.3%), high school education level (67.7%) and of Han nationality (82.8%). The quality of life of drug addicts was lower than the norm in the physical domain, psychological domain, social domain, and general module, and the differences were statistically significant (p < 0.001). Sex and mode of drug abuse were the influencing factors in total score (p = 0.006) and specific module (p = 0.019). Past family atmosphere and the mode of drug abuse were the influencing factors in the general module (p = 0.027, p = 0.037). Conclusion: The quality of life of drug addicts was worse than that of patients with other chronic diseases, and the influencing factors of the quality of life of drug abusers were sex, mode of drug abuse, and past family atmosphere.
 
Effects of MCC impact adjustment methods on PCS outcome predictions by OA-specific QOL impact
Article
Background Interpretation of health-related quality of life (QOL) outcomes requires improved methods to control for the effects of multiple chronic conditions (MCC). This study systematically compared legacy and improved method effects of aggregating MCC on the accuracy of predictions of QOL outcomes. Methods Online surveys administered generic physical (PCS) and mental (MCS) QOL outcome measures, the Charlson Comorbidity Index (CCI), an expanded chronic condition checklist (CCC), and individualized QOL Disease-specific Impact Scale (QDIS) ratings in a developmental sample (N = 5490) of US adults. Controlling for sociodemographic variables, regression models compared 12- and 35-condition checklists, mortality vs. population QOL-weighting, and population vs. individualized QOL weighting methods. Analyses were cross-validated in an independent sample (N = 1220) representing the adult general population. Models compared estimates of variance explained (adjusted R ² ) and model fit (AIC) for generic PCS and MCS across aggregation methods at baseline and nine-month follow-up. Results In comparison with sociodemographic-only regression models (MCS R ² = 0.08, PCS = 0.09) and Charlson CCI models (MCS R ² = 0.12, PCS = 0.16), increased variance was accounted for using the 35-item CCC (MCS R ² = 0.22, PCS = 0.31), population MCS/PCS QOL weighting (R ² = 0.31–0.38, respectively) and individualized QDIS weighting (R ² = 0.33 & 0.42). Model R ² and fit were replicated upon cross-validation. Conclusions Physical and mental outcomes were more accurately predicted using an expanded MCC checklist, population QOL rather than mortality CCI weighting, and individualized rather than population QOL weighting for each reported condition. The 3-min combination of CCC and QDIS ratings (QDIS-MCC) warrant further testing for purposes of predicting and interpreting QOL outcomes affected by MCC.
 
Flow diagram of literature search
Article
Purpose To identify instruments used to measure parents’ Quality of Life (QoL) during pregnancy and the postpartum period, and to describe their characteristics and psychometric properties. Methods For this scoping review we conducted systematic literature searches in MEDLINE, EMBASE, PsychINFO, CINAHL and HaPI in mid-December 2020, to identify studies evaluating psychometric properties. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) were used to define and categorize psychometric properties. Two reviewers screened the studies independently, and customized screening questions were used to assess eligibility against inclusion criteria. Data were systematically extracted into a predesigned data charting matrix, and descriptively analyzed. Results The searches identified 5671 studies, of which 53 studies met the inclusion criteria. In total, there were 19 QoL instruments: 12 generic and seven period specific. The most reported instruments were SF-36, SF-12 and WHOQOL-BREF, and the most evaluated instruments were SF-12, WHOQOL-BREF, QOL-GRAV, and PQOL. We found that none of the identified instruments had been evaluated for all nine psychometric properties recommended by the COSMIN. The most reported psychometric properties were internal consistency and structural validity. The instruments were primarily assessed in parents residing in Asia (50%), and 83% of the studies were conducted from 2010 to 2020. Only three studies included psychometric measures assessed on fathers. Conclusion Our review shows there is extensive evidence on the internal consistency and structural validity of QoL instruments used on parents during pregnancy and the postpartum period, but that the evidence on other psychometric properties is sparse. Validation studies and primary studies are needed to provide evidence on the reliability, validity, responsiveness, and interpretability of QoL instruments for this target group, in particular for fathers and partners.
 
Scree plot of eigenvalues for factor retention
Loading plot of factors, based on principal component factor extraction and oblique rotation
Item reliability of the short form of WHODAS 2.0
Article
Background Due to limited capability to function in post-injury daily life injury, survivors need to be reliably assessed without need to commute more than necessary. The key action is to determine the level of functioning difficulties. Having the opportunity of conducting a national post-crash traffic safety and health cohort study, we aimed to translate into Persian and assess the psychometric properties of the World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0) through phone surveys six month post injury. Methods First, having World Health Organization permission, we tested the translation validity by forward translation, expert panel evaluation, back-translation, pre-testing and cognitive interviewing, and finalizing the Persian WHODAS. Then, through a psychometric study within a national cohort platform, the validity, reliability and applicability of the 12-item WHODAS was assessed through phone surveys. We included data of 255 road traffic injury patients enrolled from the cohort at six-month follow-up. The psychometric assessment (internal consistency reliability and stability reliability) was conducted on test–retest data of 50 patients with an average 7-day time span. An exploratory factor analysis tested the construct validity using extraction method of principal component factor and oblique rotation on data from 255 patients. Regarding the multiple criteria including an eigenvalue > 0.9, Cattell’s scree test, cumulative variance, and the theoretical basis, the minimum number of factors were retained. Data were analyzed using STATA statistical software package. Results The respondents were mostly male (81%), employed (71%), educated (87%), and with a mean age of 37.7(14.9). The Persian version had high internal consistency reliability (Cronbach’s α = 0.93) and excellent stability reliability (ICC = 0.97, 95% CI: 0.92–0.98). An exploratory factor analysis retained four factors defining 86% of all the variance. Factors of Self-care, Mobility, and Cognition were completely retained. Conclusions The brief Pesrian WHODAS 2.0 was highly reliable and valid to be applied through phone interviews post injury.
 
Article
Background: Online longitudinal surveys may be subject to potential biases due to sample attrition. This study was designed to identify potential predictors of attrition using a longitudinal panel survey collected during the COVID-19 pandemic. Methods: Three waves of data were collected using Amazon Mechanical Turk (MTurk), an online crowd-sourced platform. For each wave, the study sample was collected by referencing a US national representative sample distribution of age, gender, and race, based on US census data. Variables included respondents' demographics, medical history, socioeconomic status, COVID-19 experience, changes of health behavior, productivity, and health-related quality of life (HRQoL). Results were compared to pre-pandemic US norms. Measures that predicted attrition at different times of the pandemic were identified via logistic regression with stepwise selection. Results: 1467 of 2734 wave 1 respondents participated in wave 2 and, 964 of 2454 wave 2 respondents participated in wave 3. Younger age group, Hispanic origin (p ≤ 0.001) and higher self-rated survey difficulty (p ≤ 0.002) consistently predicted attrition in the following wave. COVID-19 experience, employment, productivity, and limited physical activities were commonly observed variables correlated with attrition with specific measures varying by time periods. From wave 1, mental health conditions, average daily hours worked (p = 0.004), and COVID-19 impact on work productivity (p < 0.001) were associated with a higher attrition rate at wave 2, additional to the aforementioned factors. From wave 2, support of social distancing (p = 0.032), being Republican (p < 0.001), and having just enough money to make ends meet (p = 0.003) were associated with predicted attrition at wave 3. Conclusions: Attrition in this longitudinal panel survey was not random. Besides commonly identified demographic factors that contribute to panel attrition, COVID-19 presented novel opportunities to address sample biases by correlating attrition with additional behavioral and HRQoL factors in a constantly evolving environment. While age, ethnicity, and survey difficulty consistently predicted attrition, other factors, such as COVID-19 experience, changes of employment, productivity, physical health, mental health, and financial situation impacted panel attrition during the pandemic at various degrees.
 
Article
Purpose Food-related quality of life is considerably impaired in patients with inflammatory bowel disease (IBD) and should be widely measured in research and clinical practice. This study aims to translate the FR-QoL-29 instrument to the Turkish language and evaluate its validity and reliability in Turkish patients with IBD. Methods The FR-QoL-29 was forwards and backwards translated into Turkish and the validity and reliability of the FR-QoL-29-Turkish measured at two tertiary hospitals in Ankara, Turkey. Participants completed four questionnaires regarding: sociodemographic; clinical (disease type and activity), and nutritional characteristics (MUST) together with FR-QoL-29-Turkish. In addition, 30 patients repeated the questionnaires after two weeks. collected. Pearson correlation coefficients and Cronbach α were used to assess reliability and validity (p < 0.05). Results A total of 180 participants with IBD (78 Crohn’s disease, 102 ulcerative colitis), with a mean age of 45.9 ± 12.5 years, were included. Bartlett's sphericity test was statistically significant (p < 0.001), meeting the prerequisite for factor analysis, and the adequacy of the sample size for factor analysis was confirmed by a high Kaiser–Meyer–Olkin (KMO = 0.92). Validity was confirmed by factor loadings ranging from 0.310 to 0.858. Item-total score correlations ranged from 0.258 to 0.837 and Cronbach’s α coefficient was 0.96 for the whole questionnaire indicating high internal consistency. Conclusions FR-QoL-29-Turkish is a valid and reliable measure of food-related quality of life in IBD patients with Turkish language. The FR-QoL-29-Turkish gives a comprehensive overview of the main aspects of food quality of life and can be used as a useful tool in both research and clinical practice.
 
Scatter plots of a the physical component score (PCS), and b the mental component score (MCS), between the SF-12v2 and the VR-12
95% confidence intervals for the pair differences of the two component and eight scale scores of the SF-12v2 and VR-12
Bland–Altman Plots for the differences of a the physical component score (PCS), and b the mental component score (MCS), between the SF-12v2 and the VR-12
Bland–Altman Plots for the differences of the eight scales, between the SF-12v2 and the VR-12
Article
Background The 12-item MOS Short-form Health Survey version 2 (SF-12v2) and the Veterans RAND 12-item Health Survey (VR-12) are generic health-related quality of life measures. They are fairly similar, but their differences in scores have not been assessed. Therefore, this study aimed to assess the differences between the SF-12v2 and the VR-12 in a Chinese population. Methods We conducted a household survey of 500 Chinese adults in Hong Kong. Both the SF-12v2 and the VR-12 were self-administered. The physical component summary score (PCS) and the mental component summary score (MCS) of each instrument were computed using well established algorithms. Their mean differences were assessed using 95% confidence interval (CI), and their individual differences were assessed by Bland–Altman analysis. Results The participants had a mean age of 38 years (range: 18–80 years). The mean PCS and MCS scores of the SF-12v2 were 50.3 ( SD = 6.5) and 49.0 ( SD = 9.0), while those of the VR-12 were 49.6 ( SD = 6.2) and 49.7 ( SD = 8.8), respectively. The corresponding paired differences (SF-12v2—VR-12) of the PCS and MCS were 0.8, 95% CI (0.4–1.1) and − 0.7, 95% CI (− 1.2 to − 0.2), respectively. All confidence limits fell within the minimal clinical important difference (MCID) of 3. The 95% limits of agreement were − 7.0, 8.5 for PCS and − 11.2, 9.9 for MCS, which fell outside the corresponding MCID for individual responses. Conclusion The SF-12v2 and the VR-12 reached mean equivalence at the group sample level, but there was a range of individual differences.
 
Article
Background: For nearly a decade, value sets for the EQ-5D-Y were not available, reflecting challenges in valuing child HRQoL. A methodological research programme led to publication of a valuation protocol in 2020, which was rapidly taken up by local study teams. By the end of 2022, between 11 and 17 EQ-5D-Y value sets will be available, more than for any other child HRQoL measure. It is timely to review the experience of those using the protocol to identify early learnings and remaining issues where more research is needed. Methods: In June 2021, the EuroQol Group organised a three-day workshop, bringing together all those involved in EQ-5D-Y value set studies and related methodological research concerning EQ-5D-Y and valuation. Workshop discussions were captured by note taking and recording all sessions and online chat. A narrative summary of all sessions was produced and synthesised to identify points of agreement and aspects of methods where uncertainty remains. Results: There was broad agreement that DCE is working well as the principal valuation method. However, the most appropriate means of anchoring the latent scale values produced by DCE remains unclear. Some studies have deviated from the protocol by extending the number of states included in TTO tasks, to better support modelling of DCE and TTO. There is ongoing discussion about the relative merits of alternative variants of TTO and other methods for anchoring. Very few studies have consulted with local end-users to gauge the acceptability of methods used to value EQ-5D-Y. Conclusions: Priority areas for research include testing alternative methods for anchoring DCE data; exploring the preferences of adolescents; and scale differences in values for EQ-5D-Y and adult EQ-5D states, and implications of such differences for the use of EQ-5D-Y values in HTA. Given the normative elements of the protocol, engaging with HTA bodies and other local users should be the first step for all future value set studies. Value sets undertaken to date are for the three-level EQ-5D-Y. However, the issues discussed in this paper are equally relevant to valuation of the five-level version of EQ-5D-Y; indeed, similar challenges are encountered valuing any measure of child HRQoL.
 
EQ-5D index score among persons with a history of stroke. The EQ-5D index score was calculated as least mean square after sex and age were adjusted, and p = 0.0015 in 2013–2014, p = 0.0040 in 2015–2016, and p < 0.0001 in 2017–2018. EQ-5D, five dimentional European Quality of Life Questionnaire
Article
Background Although the cardiovascular health and quality of life (QoL) of stroke survivors have been previously studied, no study has investigated the correlation between cardiovascular health and QoL. This study aimed to investigate whether there would be a difference in the quality of life (QoL) in this population depending on the degree of cardiovascular health. Methods Overall, 577 people aged > 40 years who participated in the Korea National Health and Nutrition Examination Survey from 2013 to 2018 were included and were divided into three groups according to the survey period (2013–2014, n = 145; 2015–2016, n = 198; and 2017–2018, n = 234). Participants were further divided into the following groups based on their cardiovascular health score, as defined by the American Heart Association: poor, intermediate, and ideal groups. We examined how the health-related QoL score was expressed through the five-dimensional European Quality of Life Questionnaire (EQ-5D-3L). Results The ideal (cardiovascular health scores 11–14) and intermediate (cardiovascular health scores 8–10) groups had the lowest (7.72–8.14%) and highest (46.39–57.70%) number of participants, respectively. The total EQ-5D index score was highest in the ideal group, followed by the intermediate and poor groups across all three periods (2013–2014, p = 0.0015; 2015–2016, p = 0.0040; 2017–2018, p < 0.0001). The dimension-specific analysis revealed that, Findings showed that stroke survivors' mobility significantly varied by cardiovascular health scores ( p = 0.0371 in 2015–2016, p =0.0486 in 2017–2018), whereas usual activities ( p = 0.0322) and pain/discomfort ( p = 0.0420) were significantly different among the three groups in 2015–2016. Conclusion QoL in post-stroke survivors, when related to cardiovascular health degree, could be correlated with stroke sequelae.
 
Factor loadings and threshold parameters of the CAL-DM from the fully invariant model by time and gender. Colored lines indicate parameter values and shaded areas show confidence intervals. The unstandardized parameters are the results of the “Residuals” model in Table 2. Note that item 8 is missing because it was excluded from the analyses
Latent and summative score distributions of the CAL-DM by gender in the three waves of the MxFLS. Upper blue areas correspond to the 2009 wave, middle, orange, areas to the 2005 wave, and lower, green, areas to the 2002 wave. Vertical lines across the distributions show the mean
Comparison of summative score distributions of the CAL-DM by self-rated health in the three waves of the MxFLs. Upper purple distributions indicate “Regular”, “Bad” and “Very Bad” self-rated health (labelled “Poor”), while lower yellow distributions reflect “Very good” and “Good” self-rated health (labelled “Good”). Boxplots within the distributions show the median with a vertical line and the mean with a square
Article
Background Assessing change and comparing groups requires high quality and invariant scales. However, there is limited evidence of simultaneous longitudinal and gender measurement invariance for depression scales. This evidence is even more scant with long-established panel studies from low and middle-income countries. Methods In this paper, we used three waves (years 2002, 2005, and 2009) of a nationally representative panel study to examine the psychometric properties of the modified Calderon Depression Scale (CAL-DM)—a one-item exclusion of a depression scale designed for a population residing in a middle-income country (i.e., Mexico). Our analytical sample included 16,868 participants: 7,696 men and 9,172 women. Using Confirmatory Factor Analysis (CFA), we first examined overall fit in each wave, and then we tested time, gender, and time-gender measurement invariance across three waves. We also estimated and compared depression score means by gender and time. Finally, we examined the association between depression scores and self-rated health. Results Our analyses indicated the CAL-DM is a robust scale, suitable for time, gender, and time by gender comparisons. Mean comparisons exemplified how the scale can be used as a latent variable or a summative score. Women have higher depression scores than men and the gap is narrowing from 3.4 in 2002 to 2.5 in 2009. Conclusions The CAL-DM is a reliable instrument to measure depression in the Mexican general population that can be used for epidemiological research. Our results will contribute to a burgeoning line of research that examines the social determinants of depression, and the risk factors associated with different individuals’ depression trajectories over the life course.
 
Overview of recruitment strategy and inclusion of participants
Relative Importance Scores of OxCAP-MH items calculated by Hierarchical Bayes estimation (n = 158). White vertical line = median; box = interquartile range; ‘whiskers’ extending to max 1.5 interquartile ranges outside the box; any values outside the whisker are depicted individually
Heatmap of pairwise Pearson correlation coefficients between OxCAP-MH items
Article
Background Some capability dimensions may be more important than others in determining someone’s well-being, and these preferences might be dependent on ill-health experience. This study aimed to explore the relative preference weights of the 16 items of the German language version of the OxCAP-MH (Oxford Capability questionnaire-Mental Health) capability instrument and their differences across cohorts with alternative levels of mental ill-health experience. Methods A Best–Worst-Scaling (BWS) survey was conducted in Austria among 1) psychiatric patients (direct mental ill-health experience), 2) (mental) healthcare experts (indirect mental ill-health experience), and 3) primary care patients with no mental ill-health experience. Relative importance scores for each item of the German OxCAP-MH instrument were calculated using Hierarchical Bayes estimation. Rank analysis and multivariable linear regression analysis with robust standard errors were used to explore the relative importance of the OxCAP-MH items across the three cohorts. Results The study included 158 participants with complete cases and acceptable fit statistic. The relative importance scores for the full cohort ranged from 0.76 to 15.72. Findings of the BWS experiment indicated that the items Self-determination and Limitation in daily activities were regarded as the most important for all three cohorts. Freedom of expression was rated significantly less important by psychiatric patients than by the other two cohorts, while Having suitable accommodation appeared significantly less important by the expert cohort. There were no further significant differences in the relative preference weights of OxCAP-MH items between the cohorts or according to gender. Conclusions Our study indicates significant between-item but limited mental ill-health related heterogeneity in the relative preference weights of the different capability items within the OxCAP-MH. The findings support the future development of preference-based value sets elicited from the general population for comparative economic evaluation purposes.
 
The correlation of MLHFQ scores with SF-6Dv2 utilities in full sample
The observed versus predicted SF-6Dv2 mapped from the optimal mapping model
Bland and Altman plot of differences between the observed and the predicted SF-6Dv2 value of OLS Model B
Article
Purpose Mapping the Minnesota Living with Heart Failure Questionnaire (MLHFQ) to SF-6Dv2 in Chinese patients with chronic heart failure, and to obtain the health utility value for health economic assessment. Methods Four statistical algorithms, including ordinary least square method (OLS), Tobit model, robust MM estimator (MM) and censored least absolute deviations (CLAD), were used to establish the alternative model. Models were validated by using a tenfold cross-validation technique. The mean absolute error (MAE) and root mean square error (RMSE) were used to evaluate the prediction performance of the model. The Spearman correlation coefficient and Intraclass Correlation Coefficients (ICC) were used to examine the relationship between the predicted and observed SF-6Dv2 values. Results A total of 195 patients with chronic heart failure were recruited from 3 general hospitals in Beijing. The MLHFQ summary score and domain scores of the study sample were negatively correlated with SF-6Dv2 health utility value. The OLS regression model established based on the MLHFQ domain scores was the optimal fitting model and the predicted value was highly positively correlated with the observed value. Conclusion The MLHFQ can be mapped to SF-6Dv2 by OLS, which can be used for health economic assessment of cardiovascular diseases such as chronic heart failure.
 
Canadian FACT-8D utility decrements by dimension and level (derived from Model 3 raked condition logit, monotonicity imposed)
Article
Introduction Utility instruments are used to assess patients’ health-related quality of life for cost-utility analysis (CUA). However, for cancer patients, the dimensions of generic utility instruments may not capture all the information relevant to the impact of cancer. Cancer-specific utilities provide a useful alternative. Under the auspices of the Multi-Attribute Utility in Cancer Consortium, a cancer-specific utility algorithm was derived from the FACT-G. The new FACT-8D contains eight dimensions: pain, fatigue, nausea, sleep, work, support from family/friends, sadness, and worry health will get worse. The aim of the study was to obtain a Canadian value set for the FACT-8D. Methods A discrete choice experiment was administered to a Canadian general population online panel, quota sampled by age, sex, and province/territory of residence. Respondents provided responses to 16 choice sets. Each choice set consisted of two health states described by the FACT-8D dimensions plus an attribute representing survival duration. Sample weights were applied and the responses were analyzed using conditional logistic regression, parameterized to fit the quality-adjusted life year framework. The results were converted into utility weights by evaluating the marginal rate of substitution between each level of each FACT-8D dimension with respect to duration. Results 2228 individuals were recruited. The analysis dataset included n = 1582 individuals, who completed at least one choice set; of which, n = 1501 completed all choice sets. After constraining to ensure monotonicity in the utility function, the largest decrements were for the highest levels of pain (− 0.38), nausea (− 0.30), and problems doing work (− 0.23). The decrements of the remaining dimensions ranged from − 0.08 to − 0.18 for their highest levels. The utility of the worst possible health state was defined as − 0.65, considerably worse than dead. Conclusions The largest impacts on utility included three generic dimensions (i.e., pain, support, and work) and nausea, a symptom caused by cancer (e.g., brain tumours, gastrointestinal tumours, malignant bowel obstruction) and by common treatments (e.g., chemotherapy, radiotherapy, opioid analgesics). This may make the FACT-8D more informative for CUA evaluating in many cancer contexts, an assertion that must now be tested empirically in head-to-head comparisons with generic utility measures.
 
The flowchart of the sample inclusion for the comparison study
The distribution across levels of the EQ-5D-5L and SF-6Dv2 dimensions (N = 19,177). Note: Except for the pain dimension, which has six response levels, all others have five levels, with higher values representing more severe health states
Article
Background: SF-6Dv2, the latest version of SF-6D, has been developed recently, and its measurement properties remain to be evaluated and compared with the EQ-5D-5L. The aim of this study was to assess and compare the measurement properties of the SF-6Dv2 and the EQ-5D-5L in a large-sample health survey among the Chinese population. Methods: Data were obtained from the 2020 Health Service Survey in Tianjin, China. Respondents were randomly selected and invited to complete both the EQ-5D-5L and SF-6Dv2 through face-to-face interviews or self-administration. Health utility values were calculated by the Chinese value sets for the two measures. Ceiling and floor effects were firstly evaluated. Convergent validity and discriminate validity were examined using Spearman's rank correlation and effect sizes, respectively. The agreement was assessed using intraclass correlation coefficients (ICC). Sensitivity was compared using relative efficiency and receiver operating characteristic. Results: Among 19,177 respondents (49.3% male, mean age 55.2 years, ranged 18-102 years) included in this study, the mean utility was 0.939 (0.168) for EQ-5D-5L and 0.872 (0.184) for SF-6Dv2. A higher ceiling effect was observed in EQ-5D-5L than in SF-6Dv2 (72.8% vs. 36.1%). The Spearman's rank correlation (range: 0.30-0.69) indicated an acceptable convergent validity between the dimensions of EQ-5D-5L and SF-6Dv2. The SF-6Dv2 showed slightly better discriminative capacities than the EQ-5D-5L (ES: 0.126-2.675 vs. 0.061-2.256). The ICC between the EQ-5D-5L and SF-6Dv2 utility values of the total sample was 0.780 (p < 0.05). The SF-6Dv2 had 29.0-179.2% higher efficiency than the EQ-5D-5L at distinguishing between respondents with different external health indicators, while the EQ-5D-5L was found to be 8.2% more efficient at detecting differences in self-reported health status than the SF-6Dv2. Conclusions: Both the SF-6Dv2 and EQ-5D-5L have been demonstrated to be comparably valid and sensitive when used in Chinese population health surveys. The two measures may not be interchangeable given the moderate ICC and the systematic difference in utility values between the SF-6Dv2 and EQ-5D-5L. Further research is warranted to compare the test-retest reliability and responsiveness.
 
Flow of the translation and cross‑cultural adaptation
CFA models for each PROMIS-57 domain (f1–f7: anxiety, depression, physical function, fatigue, sleep disturbance, ability to participate in social roles and activities, and pain interference, respectively)
Item information curve for each PROMIS-57 domain
Item characteristics curve matrix for each PROMIS-57 domain
Article
Background The PROMIS-57 is a commonly used self-reported instrument to solve the lack of generalizable and universal measures required to evaluate common symptoms and functions from patients’ perspectives. This study aimed to translate the PROMIS-57 into Chinese and psychometrically test the translated instrument on patients with breast cancer. Methods Translation, cross‑cultural adaptation, and psychometric evaluation of the instrument were performed from June 2020 to June 2021. Eligible patients were recruited and completed the PROMIS-57, Functional Assessment of Cancer Therapy-Breast (FACT-B), and a sociodemographic questionnaire. Results Data from 602 patients with a mean age of 48.83 years were analyzed. Most domains in the PROMIS-57 showed an absence of floor and ceiling effects. Multi-trait scaling analysis demonstrated acceptable convergent and discriminant validity. The correlations between the PROMIS-57 scores and the selected FACT-B scores supported the criterion validity via the Pearson correlation test. Measurement invariance was supported by the absence of differential item functioning for most items. Cronbach’s α of the domains ranged from 0.85–0.95. The unidimensional factor structure of all domains was supported using confirmatory factor analyses. Additionally, most items showed acceptable item information curves and item characteristics curve matrices. Conclusion The Chinese version of the PROMIS-57 was found to be a reliable and valid tool for assessing common symptoms and functions among patients with breast cancer.
 
Patient selection flow chart
Distribution of T-scores for each domain and raw scores for pain intensity within the PROMIS-29
Confirmatory factor analysis for the seven-factor model of the PROMIS-29
Article
Background The Patient-Reported Outcomes Measurement Information System 29-item Profile (PROMIS-29) has been widely used to measure health outcomes from the patient’s perspective. It has not been validated in adults with aortic disease. The aim of this study was to explore the reliability and validity of the Chinese PROMIS-29 among patients undergoing surgery for aortic dissection (AD). Methods A cross-sectional design was applied. Eligible patients completed a questionnaire that contained the PROMIS-29 and legacy measures, including the Short Form-12 Health Survey (SF-12), 8-item Somatic Symptom Scale (SSS-8), Generalized Anxiety Disorder–2 (GAD-2), and Patient Health Questionnaire-2 (PHQ-2). The structural validity of the PROMIS-29 was evaluated using confirmatory factor analysis (CFA). Reliability was evaluated with Cronbach’s α. Construct validity was assessed by calculating Spearman’s rank correlations and comparing known-group differences. Results In total, a sample of 327 AD patients was included in the final analysis. Most of them were male (89%) with a mean age of 52.7 (± 10.3). CFA revealed good model fit of the seven-factor structure within PROMIS-29, as well as most domains in single-factor analysis. Reliability was confirmed with Cronbach’s α > 0.90. Correlations between comparable domains of the PROMIS-29 and those of legacy questionnaires and most know-group comparisons were observed as hypothesized. Conclusions This study found evidence for acceptable structural validity, construct validity and internal consistency of the PROMIS-29 in a sample of AD patients. It can be applied to AD survivors by researchers or clinicians, measuring outcomes after surgery and identifying those with worse health status.
 
Mean (SD) HUI3 (left) and HUI2 (right) utility by visit, stratified by baseline age. Whiskers represent 95% confidence intervals
Changes in HUI attribute levels from baseline to week 48 among the total sample of patients
Percent of variability in changes HUI utility, across patients, explained by changes in each attribute
Changes in HUI attribute levels from baseline to week 48 among patients with a a decline in HUI utility of at least 0.2, and b an improvement in HUI utility of at least 0.2, between baseline and week 4
Article
Background Data on health state utility in Duchenne muscular dystrophy (DMD) are few. This study estimated mean utility values by age, ambulatory status and over time, and investigated which aspects of health-related quality-of-life (HRQoL) are most strongly associated with utility in DMD. Methods Data from placebo-treated ambulant boys with DMD with exon 51 skip amenable mutations, (NCT01254019), were included. Ambulatory function assessments were conducted at baseline and every 12 weeks for the trial duration. Family member proxies completed the Health Utility Index (HUI) at baseline, 24 and 48 weeks; and HUI3 and HUI2 utility values were summarized. Changes in HUI attribute level over time, and predictors of changes in utility, were explored. Results Sixty-one boys (mean [range] age of 8.0 [5–16] years) were included in the analysis. Mean baseline utilities were 0.82 (HUI3) and 0.87 (HUI2); and utilities were 0.35 (HUI3) and 0.55 (HUI2) after loss of ambulation (LOA, where applicable). Over the follow-up period mean utility declined more among the older versus younger boys. Pain accounted for the highest proportion of variability (42%) in change in HUI3 utility from baseline to week 48, while for HUI2, self-care (39%) did. After LOA, change in ambulation levels explained 88% of the decline in mean HUI3 utility and change in mobility levels explained 66% of the decline in mean HUI2 utility. Conclusions Utility values among this sample were higher than previously published estimates. In younger boys utility remained relatively stable, but older boys and those losing ambulation experienced important declines over follow-up.
 
a–c Trends in surgical treatment for patients with lumbar spinal stenosis with degenerative spondylolisthesis, lumbar spinal stenosis without degenerative spondylolisthesis, and lumbar disk herniations between 2007 and 2016
a SF-36 profiles preoperatively and 1-year postoperatively for patients treated for lumbar spinal stenosis with degenerative spondylolisthesis between 2007 and 2016. b SF-36 profiles preoperatively and 1 year postoperatively for patients treated for lumbar spinal stenosis without degenerative spondylolisthesis between 2007 and 2016. c SF-36 profiles preoperatively and 1 year postoperatively for patients treated for lumbar disk herniation between 2007 and 2016
Article
Background Previous studies have shown that patients with different lumbar spine diseases report different SF-36 profiles, but data on the stability of the SF-36 profiles are limited. The primary aim of the current study was to evaluate the stability of the SF-36 profile for lumbar spine diseases. Methods Patients, surgically treated between 2007 and 2016 for three lumbar spine diseases, lumbar spinal stenosis (LSS) with degenerative spondylolisthesis (DS), LSS without DS, and lumbar disk herniations (LDH), were identified in the Swedish spine register. Preoperative and 1 year postoperative SF-36 data for a total of 27,302 procedures were available for analysis. The stability of the SF-36 profiles over the 10-year period was evaluated using graphical exploration, linear regression, difference in means, and 95% confidence intervals. The responsiveness of the SF-36 domains to surgical treatment was evaluated using the standardized response mean (SRM). Results LSS and LDH have different SF-36 profiles. LSS with DS and LSS without DS have similar SF-36 profiles. The preoperative and the 1 year postoperative SF-36 profiles were stable from 2007 to 2016 for all three diagnoses. There were no major changes in the effect size of change (SRM) during the study period for all three diagnoses. For LSS with DS, the number of fusions peaked in 2010 and then decreased. The postoperative SF-36 profiles for LSS with DS were unaffected by changes in surgical treatment trends. Conclusions Patients with lumbar spinal stenosis and lumbar disk herniations have different SF-36 profiles. Concomitant degenerative spondylolisthesis had no impact on the SF-36 profile of lumbar spinal stenosis. Adding fusion to the decompression did not alter the postoperative SF-36 profile of lumbar spinal stenosis. The SF-36 health profiles are stable from a 10 years perspective.
 
Article
Background Data on mental health improvement after cardiac rehabilitation (CR) are contradictory. The aim was to examine the mental and psycho-social health of patients admitted to our rehabilitation center following hospital treatment for acute coronary syndrome, before and after multidisciplinary CR. Methods Outcome was measured at admission and discharge by the 36-Item Short Form Survey (SF-36), the Symptom Checklist-90 Revised (SCL-90R), the Coping Strategy Questionnaire (CSQ) and the 6-min-walking distance test. The patients’ health status was compared with norms of sex-, age- and comorbidity-matched data from the German general population. Score differences from norms were measured by standardized mean differences (SMDs); health changes were quantified by standardized effect sizes (ESs). Their importance for comprehensive assessment was quantified by explorative factor analysis. Results Of n = 70 patients followed-up (male: 79%; mean age: 66.6 years), 79% had ≥ 3 comorbidities. At baseline, SF-36 Physical functioning (SMD = − 0.75), Role physical (− 0.90), Social functioning (SMD = − 0.44), and Role emotional (SMD = − 0.45) were significantly worse than the norm. After CR, almost all scores significantly improved by ES = 0.23 (SCL-90R Interpersonal sensitivity) to 1.04 (SF-36 Physical functioning). The strongest factor (up to 41.1% explained variance) for health state and change was the mental health domain, followed by function & pain (up to 26.3%). Conclusions Normative deficits in physical and psycho-social health were reported at baseline. After CR, at follow-up, all scores, except phobia, showed significant improvement. The comprehensive measurement of bio-psycho-social health should not be limited to depression and anxiety but include, especially, the somatization and social participation dimensions.
 
Article
Background Patients with multiple long-term conditions often face a variety of challenges arising from the requirements of their health care. Knowledge of perceived treatment burden is crucial for optimizing treatment. In this study, we aimed to create a German version of the Multimorbidity Treatment Burden Questionnaire (MTBQ) and to evaluate its validity. Methods The steps to translate the MTBQ included forward/back translation, cognitive interviews ( n = 6) and a pilot test ( n = 7). Psychometric properties of the scale were assessed in a cross-sectional survey with primary care patients aged 65 and older with at least 3 long-term conditions ( n = 344). We examined the distribution of responses, dimensionality, internal reliability and construct validity. Results Cognitive interviewing and piloting led to minor modifications and showed overall good face validity and acceptability. As expected, we observed a positively skewed response distribution for all items. Reliability was acceptable with McDonald’s omega = 0.71. Factor analysis suggested one common factor while model fit indices were inconclusive. Predefined hypotheses regarding the construct validity were supported by negative associations between treatment burden and health-related quality of life, self-rated health, social support, patient activation and medication adherence, and positive associations between treatment burden and number of comorbidities. Treatment burden was found to be higher in female participants ( Mdn 1 = 6.82, Mdn 2 = 4.55; U = 11,729, p = 0.001) and participants with mental health diagnoses ( Mdn 1 = 9.10, Mdn 2 = 4.55; U = 3172, p = 0.024). Conclusions The German MTBQ exhibited good psychometric properties and can be used to assess the perceived treatment burden of patients with multimorbidity.
 
Article
Background The RAND-36 and RAND-12 (equivalent to versions 1 of the SF-36 Health Survey and SF-12 Health Survey, respectively) are widely used measures of health-related quality of life. However, there are diverging views regarding how to create the physical health and mental health composite scores of these questionnaires. We present a simple approach using an unweighted linear combination of subscale scores for constructing composite scores for physical and mental health that assumes these scores should be free to correlate. The aim of this study was to investigate the criterion validity and convergent validity of these scores. Methods We investigated oblique and unweighted RAND-36/12 composite scores from a random sample of the general Norwegian population ( N = 2107). Criterion validity was tested by examining the correlation between unweighted composite scores and weighted scores derived from oblique principal component analysis. Convergent validity was examined by analysing the associations between the different composite scores, age, gender, body mass index, physical activity, rheumatic disease, and depression. Results The correlations between the composite scores derived by the two methods were substantial (r = 0.97 to 0.99) for both the RAND-36 and RAND-12. The effect sizes of the associations between the oblique versus the unweighted composite scores and other variables had comparable magnitudes. Conclusion The unweighted RAND-36 and RAND-12 composite scores demonstrated satisfactory criterion validity and convergent validity. This suggests that if the physical and mental composite scores are free to be correlated, the calculation of these composite scores can be kept simple.
 
Article
Background Dermatology Life Quality Index (DLQI) scores are used in many countries as access and reimbursement criteria for costly dermatological treatments. In this study we examined how time trade-off (TTO) utility valuations made by individuals from the general population are related to combinations of DLQI severity levels characterizing dermatologically relevant health states, with the ultimate purpose of developing a value set for the DLQI. Methods We used data from an online cross-sectional survey conducted in Hungary in 2020 ( n = 842 after sample exclusions). Respondents were assigned to one of 18 random blocks and were asked to provide 10-year TTO valuations for the corresponding five hypothetical health states. To analyze the relationship between DLQI severity levels and utility valuations, we estimated linear, censored, ordinal, and beta regression models, complemented by two-part scalable models accommodating heterogeneity effects in respondents’ valuation scale usage. Successive severity levels (0–3) of each DLQI item were represented by dummy variables. We used cross-validation methods to reduce the initial set of 30 dummy variables and improve model robustness. Results Our final, censored linear regression model with 13 dummy variables had R ² = 0.136, thus accounting for 36.9% of the incremental explanatory power of a maximal (full-information) benchmark model ( R ² = 0.148) over the uni-dimensional model ( R ² = 0.129). Each DLQI item was found to have a negative effect on the valuation of health states, yet this effect was largely heterogeneous across DLQI items, and the relative contribution of distinctive severity levels also varied substantially. Overall, we found that the social/interpersonal consequences of skin conditions (in the areas of social and leisure activities, work and school, close personal relationships, and sexuality) had roughly twice as large disutility impact as the physical/practical aspects. Conclusions We have developed an experimental value set for the DLQI, which could prospectively be used for quantifying the quality-adjusted life years impact of dermatological treatments and serve as a basis for cost-effectiveness analyses. We suggest that, after validation of our main results through confirmatory studies, population-specific DLQI value sets could be developed and used for conducting cost-effectiveness analyses and developing financing guidelines in dermatological care.
 
Article
Background Self-report is the standard for measuring people’s health-related quality of life (HRQoL), including children. However, in certain circumstances children cannot report their own health. For this reason, children’s HRQoL measures often provide both a self-report and a proxy-report form. It is not clear whether the measurement properties will be the same for these two forms. We investigated whether it would be beneficial to extend the classification system of the EQ-5D-Y proxy questionnaire from 3 to 5 response levels. The agreement between self-report and proxy-report was assessed for both EQ-5D-Y measures. Methods The study included 286 pediatric patients and their caregivers as proxies. At three consecutive measurements—baseline, test–retest and follow-up—the proxies assessed the child’s HRQoL using the EQ-5D-Y-3L, EQ-5D-Y-5L, the PedsQL Generic, and matched disease-specific instruments. The proxy versions of EQ-5D-Y-3L and EQ-5D-Y-5L were compared in terms of feasibility, distribution properties, convergent validity, test–retest and responsiveness. Agreement between both EQ-5D-Y proxy versions to their respective self-report versions was assessed at baseline and follow-up. Results The proportion of missing responses was 1% for the EQ-5D-Y-3L and 1.4% for the EQ-5D-Y-5L. The frequency of health state with no problems in all dimensions (11111) was slightly lower for the EQ-5D-Y-5L (21.3% vs 16.7%). Regarding the convergent validity with the PedsQL and disease-specific measures, the proxy versions of EQ-5D-Y-3L and EQ-5D-Y-5L had similar magnitudes of associations between similar dimensions. The means of test–retest coefficients between the two versions of the EQ-5D-Y proxy were comparable (0.83 vs. 0.84). Regarding reported improved conditions, responsiveness of the EQ-5D-Y-5L proxy (26.6–54.1%) was higher than that of the EQ-5D-Y-3L proxy (20.7–46.4%). Except for acutely ill patients, agreement between the EQ-5D-Y-5L proxy and self-reports was at least moderate. Conclusions Extending the number of levels of the proxy version of EQ-5D-Y can improve the classification accuracy and the ability to detect health changes over time. The level structure of EQ-5D-Y-5L was associated with a closer agreement between proxy and self-report. The study findings support extending the EQ-5D-Y descriptive system from 3 to 5 levels when administered by a proxy, which is often the case in the pediatric population.
 
Actor partner interdependence model for effect of stress on impact on endometriosis-related pain (IEP). Women’s stress scores are associated with a higher IEP in women (actor effect) and men (partner effect). Men’s stress scores correlates positively with women’s IEP (partner effect). * all p < 0.05
Actor partner interdependence model for effect of sexual satisfaction on IEP. Women’s sexual satisfaction correlates negatively with men’s IEP (partner effect). The rating of men’s sexual satisfaction does not influence women’s IEP. * p < 0.05
Actor partner interdependence model for effect of lack of understanding from others on IEP. Women’s reported lack of understanding from others is associated with a higher IEP in women (actor effect) and men (partner effect). Men’s reported lack of understanding from others is associated with a higher IEP in men (actor effect) and women (partner effect). * all actor effects p < 0.01, all partner effects p < 0.05
Article
Background Endometriosis is often associated with severe dysmenorrhea, pelvic pain and dyspareunia and has a high impact on daily life as well as sexuality. Quality of partnership positively influences the course of various diseases and ability to cope with emotional and physical distress. However, studies focusing on the male partners of endometriosis patients are rare, and even less is known about the reciprocal relationship in these couples. Therefore, this study aims to explore the interrelations in couples with endometriosis in matters of psychological distress, sexual and partnership satisfaction and social support. Methods The cross-sectional study was conducted in two university-affiliated fertility centres in Germany and Austria with n = 104 female/male couples affected by endometriosis. Participants completed a questionnaire regarding endometriosis, partnership, sexuality, stress, anxiety, depression and social support. Both women and men were asked about the impact of women’s endometriosis-related pain (IEP) on their everyday life (e.g. leisure time). Data were analysed using the Actor-Partner-Interdependence Model. Results Significant partner effects were evident: High depression, anxiety and stress scores in women were associated with a higher IEP in men (all p ≤ 0.01), reciprocally high stress and depression scores in men were correlated with a higher IEP in women (all p ≤ 0.05). Less sexual satisfaction in women was associated with a higher IEP in men ( p = 0.040). There was a significant reciprocal association between the perceived lack of understanding from the social environment and a higher IEP, for both women ( p = 0.022) and men ( p = 0.027). Conclusions The male partner should be taken into account when counselling or treating women with endometriosis. Our study shows a high interdependence and reciprocal influence from both partners—positively and negatively—concerning psychological distress and sexual satisfaction. Furthermore, there ought to be more awareness for the psychosocial impact of endometriosis, especially in regard to social support and understanding. Talking about and improving sexual satisfaction as well as enhancing stress reducing techniques may hold great benefits for dealing with endometriosis. Registration number The study is registered with the German Clinical Trials Register (DRKS), number DRKS00014362.
 
Literature review process to identify factors affecting health-related quality of life
(continued)
Issues impacting health-related quality of life of people living with HIV: analysis of focus group data
Article
Background In settings with high antiretroviral therapy coverage, numerous health-related issues continue to undermine the health and health-related quality of life (HRQoL) of people living with HIV (PLHIV). As part of a larger study to develop and validate a new patient-reported outcome measure for use in HIV clinical care in Spain, we sought to identify the most burdensome health-related issues experienced by PLHIV in order to determine which issues should be addressed in the new instrument. Methods We conducted a literature review and a qualitative study based on four focus group discussions (FGDs) with key informants in Spain. Participants were selected via purposive sampling. Two FGDs convened 16 expert HIV service providers, and two convened 15 PLHIV with diverse epidemiological profiles. FGDs followed semi-structured interview scripts and incorporated an exercise to prioritise the most critical health-related issues among those named in the discussions. Content analysis was conducted using MAXQDA 12. Results The analysis of FGD data identified several broad categories of issues that were perceived to negatively affect PLHIV. The most frequently named issues fell within the categories of social problems; physical symptoms; psychological problems; and sexuality-related problems. Regarding social problems, stigma/discrimination was by far the issue raised the most frequently. In the prioritisation exercise, stigma/discrimination was also ranked as the most burdensome issue by both service providers and PLHIV. Within the physical symptoms category, the issues named most frequently were sleep-related problems, fatigue, physical pain and body fat changes. Regarding psychological problems, FGD participants most commonly spoke of emotional distress in general terms, and also called attention to depression and anxiety. In the prioritisation exercise, both service providers and PLHIV ranked psychological well-being as the second-most important issue following stigma. Sexuality-related problems that were reported included sexually transmitted infections, hormonal problems, lack of libido, and general sexual dissatisfaction. Conclusions PLHIV are negatively affected by a wide range of health-related issues. HIV-related stigma and psychological well-being remain major challenges. Identifying and addressing these and other issues in routine clinical care supports healthy aging and may ultimately contribute to better health and HRQoL outcomes in this population.
 
Scatter plot of 3125 EQ-5D-5L profiles for heteroskedastic model. *values were estimated in a pits scale where v (55555) = 0 and v (11111) = 1. 95% Confidence interval for Pearson’s correlation 0.9109–0.9222, and for Lin’s concordance: 0.7542–0.7769
Heteroskedasticity: scale by the task sequence. *Scale coefficients were transformed into the original scale
Comparing estimated coefficients with the Dutch value set. *Pearson's correlation coefficient for the 20 the conditional (0.6937), heteroskedastic (0.6321), and SALC (0.7295) coefficients
Article
Background Respondents in a health valuation study may have different sources of error (i.e., heteroskedasticity), tastes (differences in the relative effects of each attribute level), and scales (differences in the absolute effects of all attributes). Although prior studies have compared values by preference-elicitation tasks (e.g., paired comparison [PC] and best–worst scaling case 2 [BWS]), no study has yet controlled for heteroskedasticity and heterogeneity (taste and scale) simultaneously in health valuation. Methods Preferences on EQ-5D-5L profiles were elicited from a random sample of 380 adults from the general population of the Netherlands, using 24 PC and 25 BWS case 2 tasks. To control for heteroskedasticity and heterogeneity (taste and scale) simultaneously, we estimated Dutch EQ-5D-5L values using conditional, heteroskedastic, and scale-adjusted latent class (SALC) logit models by maximum likelihood. Results After controlling for heteroskedasticity, the PC and BWS values were highly correlated (Pearson's correlation: 0.9167, CI: 0.9109–0.9222) and largely agreed (Lin's concordance: 0.7658, CI: 0.7542–0.7769) on a pits scale. In terms of preference heterogeneity, some respondents (mostly young men) failed to account for any of the EQ-5D-5L attributes (i.e., garbage class), and others had a lower scale (59%; p-value: 0.123). Overall, the SALC model produced a consistent Dutch EQ-5D-5L value set on a pits scale, like the original study (Pearson's correlation:0.7295; Lin's concordance: 0.6904). Conclusions This paper shows the merits of simultaneously controlling for heteroskedasticity and heterogeneity in health valuation. In this case, the SALC model dispensed with a garbage class automatically and adjusted the scale for those who failed the PC dominant task. Future analysis may include more behavioral variables to better control heteroskedasticity and heterogeneity in health valuation. Highlights The Dutch EQ-5D-5L values based on paired comparison [PC] and best-worst scaling [BWS] responses were highly correlated and largely agreed after controlling for heteroskedasticity. Controlling for taste and scale heterogeneity simultaneously enhanced the Dutch EQ-5D-5Lvalues by automatically dispensing with a garbage class and adjusting the scale for those who failed the dominant task. After controlling for heteroskedasticity and heterogeneity, this study produced Dutch EQ-5D-5L values on a pits scale moderately concordant with the original values.
 
Instrument development and formal psychometric testing process
Flow chart of item selection and revision for the Self-Care Decisions Inventory. This flowchart displays the process of item development. Initially 42 items were generated. Items were subsequently retained, revised, added, or deleted based on patient input, a two round Delphi survey, and cognitive interviews with adults with chronic illness
Self-care decisions inventory item information functions. Each pre-calibration item is shown within the six scales of the Self-Care Decisions Inventory. On the x-axis, theta represents the mean observed trait and the scale is standard errors around theta. On the y-axis, items providing more information about the trait with respect to greater discrimination have higher curves; items providing less information about the trait have lower curves, particularly those with a peak less than one
Recalibrated test information functions for each scale of the Self-Care Decisions Inventory. Each post-calibration scale of the Self-Care Decisions Inventory is presented regarding the degree to which the factor items collectively inform the trait (left y-axis—information), and range of underlying trait (x-axis with theta representing the mean observed trait and the scale is standard errors around theta) where the scale is most precise (right y-axis – standard error)
Standardized scores on the Self-Care Decisions Inventory. The mean and standard deviation of the standardized scores for each scale of the Self-Care Decisions Inventory in the current sample are displayed
Article
Background Decisions about how to manage bothersome symptoms of chronic illness are complex and influenced by factors related to the patient, their illness, and their environment. Naturalistic decision-making describes decision-making when conditions are dynamically evolving, and the decision maker may be uncertain because the situation is ambiguous and missing information. Contextual factors, including time stress, the perception of high stakes, and input from others may facilitate or complicate decisions about the self-care of symptoms. There is no valid instrument to measure these contextual factors. The purpose of this study was to develop and test a self-report instrument measuring the contextual factors that influence self-care decisions about symptoms. Methods Items were drafted from the literature and refined with patient input. Content validity of the instrument was evaluated using a Delphi survey of expert clinicians and researchers, and cognitive interviews with adults with chronic illness. Psychometric testing included exploratory factor analysis to test dimensionality, item response theory-based approaches for item recalibration, confirmatory factor analysis to generate factor determinacy scores, and evaluation of construct validity. Results Ten contextual factors influencing decision-making were identified and multiple items per factor were generated. Items were refined based on cognitive interviews with five adults with chronic illness. After a two round Delphi survey of expert clinicians (n = 12) all items had a content validity index of > 0.78. Five additional adults with chronic illness endorsed the relevance, comprehensiveness, and comprehensibility of the inventory during cognitive interviews. Initial psychometric testing (n = 431) revealed a 6-factor multidimensional structure that was further refined for precision, and high multidimensional reliability (0.864). In construct validity testing, there were modest associations with some scales of the Melbourne Decision Making Questionnaire and the Self-Care of Chronic Illness Inventory. Conclusion The Self-Care Decisions Inventory is a 27-item self-report instrument that measures the extent to which contextual factors influence decisions about symptoms of chronic illness. The six scales (external, urgency, uncertainty, cognitive/affective, waiting/cue competition, and concealment) reflect naturalistic decision making, have excellent content validity, and demonstrate high multidimensional reliability. Additional testing of the instrument is needed to evaluate clinical utility.
 
PRISMA flow diagram
Article
In public health context, oncology is associated with severe negative impact on patients and on their relatives’ quality of life. Over the last decades, survival has remained at 50% worldwide for some tumor locations. Patient reported outcomes (PROs) assessment and, the corresponding use in clinical practice, help establishing patient individualized profiling involving caregivers. The purpose of this systematic review was to examine critical success factors for PROs assessment in daily clinical oncology practice. Additionally, we investigated how PROs collection can change oncology perspectives for patients and caregivers. According to PRISMA guidelines, 83 studies were included in this systematic review, whether related with implementation in daily clinical practice or associated with its use in oncology. PROs assessment gathers multi-professional teams, biomedical and clinical expertise, patients, families and caregivers. Institutional involvement, first line for caregiver’s adherence, team continuous formation, encompassing training and support, design of clear workflows, continuous monitoring, and data analysis are crucial for implementation. PROs measures are decisive in oncology. Several items were improved, including caregiver–patient–physician communication, patient risk groups identification, unmet problems and needs detection, disease course and treatment tracking, prognostic markers, cost-effectiveness measurement and comfort/support provision for both patients and caregivers. Routine assessment and implementation of PROs in clinical practice are a major challenge and a paradigm transformation for future.
 
Article
Background Quality of life (QOL) is a good indicator of lifespan, especially for individuals who are suffering from a particular illness. QOL among patients with diabetes mellitus (DM) could be used for further implementations in addition to improving patient care and disease management, especially during the coronavirus disease 2019 (COVID-19) pandemic. This study aimed to assess QOL and identify factors associated with a good QOL among DM patients in northern Thailand. Methods A cross-sectional study was conducted to gather information from DM patients attending six randomly selected hospitals in the Chiang Rai province, northern Thailand. A validated questionnaire and the 26-item quality of life brief version (WHOQOL-BREF) were used to collect socioeconomic factors and assess QOL, respectively. Chi-square tests and logistic regression were used to detect the associations between variables at a significance level of α = 0.05. Results A total of 967 participants were enrolled in the study: 58.8% were female, 52.3% were aged ≥ 60 years, 79.7% graduated primary school and had no additional education, 68.7% had an annual income ≤ 50,000 baht, and 29.3% were unemployed. The majority of patients had a poor-to-moderate overall QOL (49.4%); 90.1% reported a moderate QOL in the physical domain, 54.7% reported a moderate QOL in the mental domain, 63.4% reported a good QOL in the social relationship domain, and 50.6% reported a good QOL in the environmental domain. In multivariate analysis, seven variables were found to be associated with good QOL among the participants. Those aged ≤ 59 years had 1.90 times (95% CI 1.32–2.73) greater odds of having good QOL than those aged ≥ 60. Those who had annual income ≥ 100,001 baht had 2.16 times (95% CI 1.17–3.96) greater odds of having good QOL than those who had annual income ≤ 50,000 baht. Those who lived alone and with spouses had 3.38 times (95% CI 1.42–8.02) and 2.20 times (95% CI 1.20–4.02) greater odds of having good QOL, respectively, than those who lived with relatives. Those who exercised regularly had 4.72 times (95% CI 2.71–8.19) greater odds of having good QOL than those who never exercised. Those who had a high level of knowledge regarding prevention and care had 3.26 times (95% CI 1.22–5.55) greater odds of having good QOL than those who had low knowledge. Those who did not have diabetic nephropathy had 7.41 times (95% CI 4.99–11.01) greater odds of having good QOL than those who were diagnosed with diabetic nephropathy, and those whose medical fees were supported by the government under the universal scheme had 4.31 times (95% CI 1.15–16.7) greater odds of having good QOL than those who had to support themselves. Conclusions Almost a half of DM patients in northern Thailand reported having a low-to-moderate QOL, which can be improved by focusing on socioeconomic factors, family support as well as improving knowledge regarding DM prevention and care, including the support of medical fees.
 
Histograms of utility values generated from the two EQ-5D-3L value sets
EQ-5D-3L index scores for 243 EQ-5D health states produced by the two value sets
Bland–Altman Plot of EQ-5D-3L Index Scores generated by the two value sets
Article
Objective Two EQ-5D-3L (3L) value sets (developed in 2014 and 2018) co-exist in China. The study examined the level of agreement between index scores for all the 243 health states derived from them at both absolute and relative levels and compared the responsiveness of the two indices. Methods Intraclass correlations coefficient (ICC) and Bland–Altman plot were adopted to assess the degree of agreement between the two indices at the absolute level. Health gains for 29,403 possible transitions between pairs of 3L health states were calculated to assess the agreement at the relative level. Their responsiveness for the transitions was assessed using Cohen effect size. Results The mean (SD) value was 0.427 (0.206) and 0.649 (0.189) for the 3L2014 and 3L2018 index scores, respectively. Although the ICC value showed good agreement (i.e., 0.896), 88.9% (216/243) of the points were beyond the minimum important difference limit according to the Bland–Altman plot. The mean health gains for the 29,403 health transitions was 0.234 (3L2014 index score) and 0.216 (3L2018 index score). The two indices predicted consistent transitions in 23,720 (80.7%) of 29,403 pairs. For the consistent pairs, Cohen effective size value was 1.05 (3L2014 index score) or 1.06 (3L2018 index score); and the 3L2014 index score only yielded 0.007 more utility gains. However, the results based on the two measures varied substantially according to the direction and magnitude of health change. Conclusion The 3L2014 and 3L2018 index scores are not interchangeable. The choice between them is likely to influence QALYs estimations.
 
PRISMA flow chart
Risk of bias (summary, risk of bias item presented as percentages across all included studies)
Risk of bias for individual studies
Article
Background Health-related quality of life (HRQoL) is important in determining surgical success, particularly from the patients’ perspective. Aims To identify predictors for HRQoL outcome after cardiac surgery in order to identify potentially modifiable factors where interventions to improve patient outcomes could be targeted. Methods Electronic databases (including MEDLINE, CINAHL, Embase) were searched between January 2001 and December 2020 for studies determining predictors of HRQoL (using a recognised and validated tool) in adult patients undergoing cardiac surgery. Data extraction and quality assessments were undertaken and data was summarised using descriptive statistics and narrative synthesis, as appropriate. Results Overall, 3924 papers were screened with 41 papers included in the review. Considerable methodological heterogeneity between studies was observed. Most were single-centre (75.6%) prospective observational studies (73.2%) conducted in patients undergoing coronary artery bypass graft (CABG) (n = 51.2%) using a version of the SF-36 (n = 63.4%). Overall, 103 independent predictors (62 pre-operative, five intra-operative and 36 post-operative) were identified, where 34 (33.0%) were reported in more than one study. Potential pre-operative modifiable predictors include alcohol use, BMI/weight, depression, pre-operative quality of life and smoking while in the post-operative period pain and strategies to reduce post-operative complications and intensive care and hospital length of stay are potential therapeutic targets. Conclusion Despite a lack of consistency across studies, several potentially modifiable predictors were identified that could be targeted in interventions to improve patient or treatment outcomes. This may contribute to delivering more person-centred care involving shared decision-making to improve patient HRQoL after cardiac surgery.
 
Article
Purpose To explore the predictive effects of illness perceptions on vision-related quality of life (VRQoL) in Chinese glaucoma patients. Methods In this cross-sectional study, 97 patients with glaucoma completed the brief illness perception questionnaire (BIPQ), the glaucoma quality of life-15 (GQL-15) questionnaire, and a questionnaire regarding sociodemographic and clinical information. A correlation analysis and hierarchical linear regression analysis were performed. Results The BIPQ total score was positively correlated with the total score of the GQL-15 questionnaire and the scores of its four dimensions. Chronic comorbidities, the type of glaucoma, the best-corrected visual acuity (BCVA), the mean defect (MD) of visual field in the better eye, and identity in the BIPQ were critical predictors of VRQoL. Illness perceptions independently accounted for 7.8% of the variance in the VRQoL of glaucoma patients. Conclusions Patients with stronger illness perceptions and those who perceive themselves as having more glaucoma symptoms are likely to experience worse VRQoL. Illness perceptions in glaucoma patients deserve clinical attention, and further studies are needed to examine whether cognitive interventions targeting illness perceptions can improve VRQoL.
 
PRISMA flow diagram describes the selection of studies for a systematic review and meta-analysis of health-related quality of life of people with HIV/AIDS on ART and its association with social support for HIV/AIDS on ART in Ethiopia, 2021
Forest plot for the pooled prevalence of poor quality of life of people living with HIV/AIDS on highly active antiretroviral therapy in Ethiopia (2021)
Sensitivity analysis showing the pooled proportion when the studies were omitted step by step
The pooled odds ratio of the association between HRQOL and social support of patients with HIV/AIDS on ART in Ethiopia, 2021
Article
Background People living with HIV/AIDS (PLWHA) are frequently confronted with severe social issues such as rejection, abandonment, criticism, and stigma. This would negatively affect their quality of life. Several studies have been conducted so far to assess factors affecting the health-related quality of life among people living with HIV/AIDS who are on antiretroviral therapy (ART) in Ethiopia. However, to our knowledge, there is no previous study that has summarized the results of the studies that investigated health-related quality of life (HRQOL) among PLWHA in Ethiopia. Therefore, the purpose of this review was to estimate the pooled prevalence of HRQOL and its association with social support among people living with HIV/AIDS (PLWHA) on ART in Ethiopia. Methods A systematic search was carried out using several electronic databases (PubMed, Science Direct, Web of Science, and Cochrane electronic), Google Scholar, Google, and a manual search of the literature on health-related quality of life among people living with HIV/AIDS who are on ART. A Microsoft Excel data extraction sheet was used to extract pertinent data from an individual study. To assess the heterogeneity of primary articles, the Cochrane Q test statistics and the I2 test were carried out, and a random effects meta-analysis was used to estimate the pooled prevalence of HRQOL. Result Out of the 493 articles reviewed, ten with a total of 3257 study participants were eligible for meta-analysis. The pooled prevalence of HRQOL among people living with HIV/AIDS who are on antiretroviral therapy in Ethiopia was 45.27%. We found that strong perceived social support was significantly associated with higher levels of subjectively perceived HRQOL. PLWHA who were on ART and had good social support were four times more likely to report higher HRQOL when compared to their counterparts [AOR = 4.01, 95% CI 3.07–5.23]. Conclusion A substantial number of PLWHA had poor HRQOL in Ethiopia. Social support was significantly associated with HRQOL among people living with HIV/AIDS. Hence, it’s recommended to encourage suitable intervention at every follow-up visit, and psycho-social support is also warranted to improve the quality of life.
 
Relative importance of symptoms, as ranked by participants in the UC study (n = 11). UC, ulcerative colitis
Relative importance of symptoms, as ranked by participants in the CD study (n = 11). CD, Crohn’s disease
Article
Background Ulcerative colitis (UC) and Crohn’s disease (CD) are associated with a range of symptoms that adversely affect health-related quality of life. This research aimed to develop and validate two patient-reported outcome (PRO) tools to assess signs and symptoms in patients with moderate-to-severe UC or CD. Methods PRO-UC and PRO-CD Diaries were developed in accordance with US Food and Drug Administration (FDA) recommendations. Data were collected from concept elicitation interviews (in which patients described their symptoms and experience of the disease) and further refined through cognitive interviews (in which patients assessed the relevance and clarity of questions in the tools). Results Interviews were conducted with 12 patients for each indication. Five symptoms (urgent bowel movements, abdominal pain, frequent bowel movements, bloody stools, diarrhea/watery stools) were reported by 83–100% of participants with UC and were included in the final 6-item PRO-UC Diary: stool frequency, rectal bleeding (2 items), diarrhea, rectal urgency, and abdominal pain. For CD, seven symptoms (abdominal pain, diarrhea/loose stools, urgent bowel movements, fatigue/tiredness/weakness, frequent bowel movements, bloody stools, nausea) were reported by 50–100% of participants. These, together with vomiting and incontinence (reported by 42% and 33% of participants, respectively), were included in the final 10-item PRO-CD Diary, covering abdominal pain (2 items), stool frequency, liquid/very soft stool frequency, rectal bleeding, rectal urgency, nausea, vomiting, bowel incontinence, and general well-being. Symptoms were consistently cited across both indications to have an impact on quality of life, with frequent complaints being the need to always be near a toilet and inability to leave home, as well as general pain, discomfort, and nausea. For both tools, questions were accurately interpreted, with at least 67% of participants in both indications stating that items were easy to answer/relevant to their condition and symptoms were easy to recall over the last 24 h. Conclusions Both the PRO-UC and PRO-CD Diaries were developed and validated in accordance with FDA recommendations, providing two new tools for use in clinical trials to assess response to treatment in patients with UC or CD. Psychometric analyses are warranted to fully evaluate their properties and value for use in clinical trials.
 
Article
Background The diagnosis of a neurodegenerative disease (ND) produces profound changes in the quality of life of the affected families. Despite the vital importance of these processes, the scientific literature has addressed this topic almost exclusively relating to the main caregiver or using limited approaches. Thus, the main objective of this research is to achieve a deeper understanding of the quality of family life of people with a neurodegenerative disease, following a mixed-method approach that combines quantitative and qualitative methodology. Methods The quantitative instrument was the Spanish version of the Family Quality of Life Survey-Neurodegenerative Disease (FQOLS-ND) , which was completed by 300 participating families. The qualitative methodology was used in two focus groups with family caregivers, with a total of 21 participants. Results On the one hand, confirmation of the dimensional structure of the scale in the focus groups was obtained and, on the other hand, the results of family quality of life in attainment and satisfaction were shown to be high for Family Relations and Careers and Planning for Careers and low for Support from Services and Leisure and Recreation. Conclusions The results of this study, through the combination of quantitative and qualitative information, helps to identify key issues to optimize services that respond to the priority needs of families.
 
Top-cited authors
Sarah Stewart-Brown
  • The University of Warwick
Scott Weich
  • The University of Warwick
Stephen Platt
  • The University of Edinburgh
Jane Parkinson
  • Public Health Scotland
Ruth Tennant
  • Hull and East Yorkshire Hospitals NHS Trust