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ABSTRACT: BACKGROUND AND AIMS: Understanding the determinants of Crohn's disease (CD) patients' health-related quality of life (HRQOL) may facilitate interventions that improve HRQOL. Therefore, we systematically assessed determinants of HRQOL in adult CD patients. METHODS: The databases PubMed, EMBASE, the Cochrane Library, PsycINFO and CINAHL were searched for English abstracts, related to socio-demographic, psychological, clinical and treatment-related determinants of HRQOL in CD disease. Two independent reviewers extracted study characteristics and assessed the methodological quality according the criteria of Hayden et al. The main outcome was the number of studies showing a statistically significant association between the above-mentioned determinants and HRQOL. A meta-analysis was performed to quantify the relationship between disease activity and HRQOL. RESULTS: Of the 2060 articles identified, 29 eligible studies were included. The majority of studies were cross-sectional and had a moderate to high quality. Data on psychological determinants were scarce. Work disability, increased disease activity, number of relapses, corticosteroid treatment and hospitalization rate were significantly associated with a lower HRQOL in the majority of included studies. Biological treatment positively influenced HRQOL. The pooled data on the association between disease activity and HRQOL resulted in a weighed mean correlation coefficient of -0.61 (CI -0.65 to -0.57). CONCLUSIONS: HRQOL of adult CD patients is consistently determined by markers of active disease, including work disability, increased disease activity, number of relapses, biological treatment and hospitalization rate. As disease activity contributed to only 37% of HRQOL, there remains a need for additional, possibly modifiable, determinants. These determinants may refine possibilities to improve HRQOL.
Journal of Crohn s and Colitis 06/2013; · 2.57 Impact Factor
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ABSTRACT: Sexual problems are common in patients with chronic illnesses. However, few studies have investigated problems with sexual functioning in patients with systemic lupus erythematosus (SLE). The present cross-sectional study assessed the influence of SLE on sexual functioning and its associations with illness perceptions and medical and socio-demographic characteristics.
The study included 106 SLE patients who used at least one immunosuppressive agent to control their SLE. Sexual functioning was measured using the Physical Disability Sexual and Body Esteem and the Medical Impact Scale from the Sexual Functioning Questionnaire. Patients' illness perceptions were assessed using the Brief Illness Perception Questionnaire.
49.1% of patients agreed that their SLE had a negative influence on their sexual functioning. In addition, treatment for SLE seemed to play an important role in the negative impact on sexual functioning. Patients' illness perceptions were more important predictors of sexual functioning than medical and socio-demographic characteristics. SLE patients appear to report a lower sexual functioning than patients with other chronic illnesses.
SLE in general and immunosuppressive treatment for SLE specifically have a negative influence on sexual functioning. Patients' illness perceptions appear to play a more important role in the negative impact on sexual functioning than medical characteristics such as disease activity. The high prevalence of sexual problems highlights the need to more frequently address and aim to improve sexual functioning in patients with SLE. Patients may benefit from methods such as illness perception modification and coping style interventions to reduce their sexual problems.
Journal of psychosomatic research 03/2013; 74(3):260-4. · 2.91 Impact Factor
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ABSTRACT: To evaluate general practitioners' (GPs') prescribing behaviour as a determinant of persistence with and adherence to inhaled corticosteroids (ICS) in children.
Prospective observational study of persistence with and adherence to ICS followed by a focus group study of the GPs prescribing this treatment.
7 primary care practices in the area of Zwolle, the Netherlands.
134 children aged 2-12 years had been prescribed ICS in the year before the study started by their 19 GPs.
Patterns and motives of GPs' prescribing behaviour and the relationship with persistence with and adherence to ICS.
GPs' prescribing behaviour was characterised by prescribing short courses of ICS to children with various respiratory symptoms without follow-up for making a diagnosis of asthma. This was driven by the GPs' pragmatic approach to deal with the large number of children with respiratory symptoms, and by beliefs about ICS which differed from currently available evidence. This prescribing behaviour was the main reason why 68 (51%) children did not persist with the use of ICS. In children with persistent use of ICS and a GP's advice to use ICS on a daily basis, the median (IQR) adherence was 70% (41-84%), and was similar for patients with persistent asthma and children lacking a diagnosis or symptoms of asthma.
Inappropriate prescription of ICS to children by GPs is common and drives the lack of persistence with ICS therapy in primary care. This finding should be taken into account when interpreting data from large prescription database studies. Improving primary healthcare providers' knowledge and competence in diagnosing and managing asthma in children is needed.
BMJ open. 01/2013; 3(4).
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ABSTRACT: OBJECTIVES: To examine the variability of illness and treatment perceptions - that have been found to be associated with chronic kidney disease (CKD) patients' outcomes (e.g., quality of life) - across the CKD trajectory, by investigating whether there are differences in perceptions in patients: (1) on varying treatments (pre-dialysis, haemodialysis, peritoneal dialysis), (2) with varying lengths of time on (dialysis) treatment, and (3) over time on dialysis, with an 8-month interval. DESIGN AND METHODS: Mixed cross-sectional and longitudinal design, using self-report questionnaires on illness and treatment perceptions; the study sample consisted of 105 pre-dialysis and 161 dialysis patients; of the 161 dialysis patients, 87 patients filled in the questionnaires again after an 8-month interval. Data were examined using multilevel (multivariate) repeated measurements regression analyses, controlled for background characteristics and repeated measures. RESULTS: Patients on haemodialysis and peritoneal dialysis believed more strongly that their treatment controls their illness (p < .05, p < .01, respectively) and perceived more illness consequences (p < .001, p < .05, respectively) than pre-dialysis patients. Haemodialysis patients perceived more treatment consequences than pre-dialysis (p < .001) and peritoneal dialysis patients (p < .01). The perception of illness understanding fluctuated between patients with varying lengths of time on dialysis (p < .05). Perceived treatment consequences were more negative in patients who were on dialysis for longer lengths of time (p < .01). Lastly, perceptions of illness and treatment varied within dialysis patients over an 8-month interval, with treatment control and personal control showing the lowest correlations. CONCLUSIONS: Findings suggest that illness and treatment perceptions vary across the CKD trajectory. This indicates that perceptions are amenable to influences and that interventions might potentially be helpful in influencing them in order to improve outcomes. STATEMENT OF CONTRIBUTION: What is already known on this subject? Dialysis patients' perceptions of illness understanding and illness symptoms vary over the first year on dialysis. Established haemodialysis patients' perceptions of illness understanding, emotional response and treatment control vary over a 2-year period. Certain illness perceptions as well as treatment perceptions vary as a function of treatment type in patients with CKD stage 5 (dialysis patients, patients with a kidney transplant). What does this study add? Patients' perceptions of illness understanding and treatment consequences vary between patients as a function of length of time on (haemo-, peritoneal-) dialysis, taking into account a wide range of time (0-10 years). Illness perceptions and treatment perceptions of patients on haemodialysis and peritoneal dialysis vary within patients over an 8-month interval, with perceptions of treatment control and personal control showing the highest variations. Perceptions of illness consequences, treatment consequences and treatment control vary as a function of type of treatment, taking into account pre-dialysis treatment (CKD stage 4) and dialysis (haemodialysis, peritoneal dialysis) treatment (CKD stage 5).
British Journal of Health Psychology 11/2012; · 2.70 Impact Factor
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02/2012; , ISBN: 978-953-51-0003-4
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ABSTRACT: In the literary novel Kurgast (1925), translated in English as A guest at the spa, the Nobel laureate Hermann Hesse describes the treatment of his own sciatica.
We compare Hesse's description of 85 years ago with a transcript of an interview with a contemporary patient with sciatica. The narratives of both texts were analyzed.
Both narratives start with hope on full recovery. Later this changes into the realization that one needs to accept that some symptoms are irreversible and will be permanent.
Although there currently is better understanding, diagnostic imaging and treatment of sciatica, a strong similarity in narrative type between the two stories was observed. Literary narratives can reflect every day practice, and probably can also be used to give better insight in dealing with diseases.
Clinical neurology and neurosurgery 08/2011; 114(1):9-11. · 1.30 Impact Factor
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ABSTRACT: This study investigated the influence of two different treatments for a kidney inflammation (i.e. proliferative lupus nephritis) on health-related quality of life (HRQoL) in patients with the chronic auto-immune disease systemic lupus erythematosus (SLE). One treatment protocol, the National Institutes of Health (NIH) protocol, was characterized by a high dose of cyclophosphamide (CYC, an immunosuppressive drug), and the second treatment, the Euro-Lupus protocol, involved a low-dose CYC. Thirty-two SLE patients were included based on the received treatment for an episode of proliferative lupus nephritis, according to either the Euro-Lupus or the NIH protocol. The two groups were compared on HRQoL as measured by the SF-36 and the SLE Symptom Checklist (SSC). The Euro-Lupus group (N = 16) tended to show a higher HRQoL than the NIH group (N = 16) on four of seven scales of the SF-36. In addition, the Euro-Lupus group experienced less burden from nausea or vomiting than the NIH group as assessed by the SSC. Fatigue was the most disturbing symptom in both groups. The most burdensome aspects of treatment were related to chemotherapy (55.2%) and use of prednisone (34.5%). Patients with a low HRQoL and high levels of fatigue were more likely to have low levels of serum complement C4 (i.e. elevated immune activity). In conclusion, patients who are treated according to the Euro-Lupus protocol may experience a higher HRQoL than patients who receive the NIH treatment. However, chemotherapy remains burdensome in the low-dose treatment regimen. Potential interventions to further enhance the HRQoL in SLE patients with proliferative lupus nephritis are discussed.
Psychology Health and Medicine 08/2011; 16(4):393-404. · 1.18 Impact Factor
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ABSTRACT: This commentary describes the methodological shortcomings and the misleading presentation of the 'think-aloud' Brief Illness Perception Questionnaire (IPQ) paper by van Oort, Schröder, & French (2011). We highlight that this paper uses a confusing Dutch translation of the scale, fabricates incorrect instructions, and employs a sample in which the majority of patients do not have established illness diagnoses. We believe these problematic methodological issues are the likely cause of the results presented in the paper. We argue that the conclusions of the paper are inaccurate, unsupported, and overstated given the limitations of the study. Furthermore, the think-aloud method cannot be a substitute for the established psychometric methods for assessing reliability and validity.
British Journal of Health Psychology 05/2011; 16(Pt 2):246-9. · 2.70 Impact Factor
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ABSTRACT: This article describes the development of an intervention programme for patients with end-stage renal disease (ESRD) and their partners. The programme is based on theories of self-regulation, social learning, and self-determination aimed at maintaining and increasing patients' activities, including paid work, and sense of autonomy. The intervention was evaluated on its feasibility and first experiences among a group of 12 patients and partners. Results show that the intervention is feasible. The outcomes observed by the patients themselves are encouraging. The findings show that an approach in which cognitive, emotional, behavioural, and contextual aspects are integrated is promising. Areas of attention for developing and implementing interventions are discussed.
Journal of Health Psychology 03/2011; 16(2):274-83. · 1.22 Impact Factor
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ABSTRACT: To our knowledge, studies evaluating the quality of life (QoL) in patients with a history of acute pulmonary embolism (PE) are not available, even though QoL is a key outcome component of medical care and a predictor of disease-specific prognosis.
As part of a large follow-up study, the Short Form 36 (SF-36) was presented to consecutive patients who had survived one or more episodes of acute PE. The results of all nine subscales of the SF-36 were compared with sex- and age-adjusted Dutch population norms. Single and multivariate analyses were performed to identify independent determinants of the QoL in our study population.
The SF-36 was completed by 392 patients. Except for the health change subscale, patients had substantially lower QoL than population norms on all eight remaining subscales. After multivariate analysis, the time interval between the last thromboembolic episode and study inclusion was inversely related to QoL, and significant determinants of poor QoL were prior PE, age, obesity, active malignancy, and cardiopulmonary comorbid conditions. Regression models that included all identified significant determinants proved to be quite modest predictors for QoL in the individual patient. Awareness of illness, coping mechanisms, and self-management behavior might be additional important indicators of QoL in our study population but require further investigation.
We identified several PE- and non-PE-related determinants of QoL in patients with a history of acute PE, which is impaired compared with sex- and age-adjusted population norms. QoL after acute PE should be studied more extensively and added as a standard measure to outcome studies.
Chest 12/2010; 138(6):1432-40. · 5.25 Impact Factor
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ABSTRACT: Twenty-one women, who were treated for postpartum haemorrhage by embolisation of the uterine artery, filled in a series of questionnaires. The questionnaires assessed personality characteristics, illness perceptions, coping and quality of life (QoL). The women also made drawings of their uterus. The results suggest that women who experience emergency embolisation have good QoL at follow-up.
Journal of Psychosomatic Obstetrics & Gynecology 12/2010; 31(4):285-8. · 1.39 Impact Factor
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ABSTRACT: Magnetic resonance imaging (MRI) scans for research purposes usually do not directly benefit the children scanned, so that review boards need to assess whether the risk of harm or discomfort is minimal. This study aimed at providing empirical data on discomfort related to unsedated MRI in children aged 5-12 years. Secondary objectives were to determine whether lower age is associated with higher levels of discomfort and to investigate which other characteristics of subjects and/or procedures may be associated with higher levels of discomfort. Self-report scores, observation scores, heart rate standard deviation scores, and incremental salivary cortisol levels were obtained from 54 children aged 5-12 years with non-acute conditions undergoing diagnostic MRI. Of the 54 children, 10 scored relatively high values on the self-report score and on one or two of the other measures, and another 15 scored relatively high on the self-report score alone. Rather than an age effect, associations were found between parents' trait anxiety and observation score values and between use of contrast fluid (requiring the insertion of a venous cannula) and high incremental salivary cortisol levels. In conclusion, MRI-related discomfort may be regarded as minimal for more than half of children aged 5-12.
European Journal of Pediatrics 12/2010; 170(6):771-7. · 1.88 Impact Factor
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ABSTRACT: Patients may be defined as nonadherent if they do not take their medications as prescribed by their physicians. Determinants of nonadherence may vary between and within patient groups. This study investigated the extent to which patients with systemic lupus erythematosus (SLE) show intentional and unintentional nonadherence, and the associations of nonadherence with psychological and medical parameters.
The study included 106 patients who were receiving at least one immunosuppressive agent to control their SLE. Level of self-reported adherence and a measure of both intentional and unintentional nonadherence were obtained. Questionnaires were completed to assess associations between adherence and problems with cognitive functioning, beliefs about medicines, illness perceptions, emotional health, and disease characteristics.
The mean self-reported adherence rate for the total patient group was 86.7%. At least occasional intentional nonadherence was reported by 46.2% of patients and 58.5% of patients were at least occasionally unintentionally nonadherent. Problems with cognitive functioning, concerns about adverse effects of medication, and younger age were the strongest predictors of (non)adherence. Patients who were emotionally affected by their SLE were more likely to report low adherence, but this was not a significant predictor after accounting for other variables. Disease characteristics showed no relationship to measures of adherence.
Although SLE patients reported high levels of adherence on average, they commonly reported intentional and unintentional nonadherence. Adherence was associated with both cognitions and emotions. Nonadherence may be reduced by targeting emotional and cognitive functioning and by fine tuning doctor-patient communication to address patients' individual concerns about their medications.
Arthritis care & research. 11/2010; 63(3):342-50.
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Ad A Kaptein,
Kazue Yamaoka,
Lucia Snoei,
Kunihiko Kobayashi,
Yuka Uchida,
Willem A van der Kloot,
Toshio Tabei,
Wim Chr Kleijn,
Mariska Koster,
Giel Wijnands, [......],
Luuk Willems,
Dunja Annema-Schmidt,
Jouke Annema,
Bas van der Maat,
Klaas van Kralingen,
Corrie Meirink,
Kyoji Ogoshi,
Neil Aaronson,
Hans Nortier,
Klaus Rabe
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ABSTRACT: This study examined quality of life (QOL) and illness perceptions in Dutch and Japanese patients with non-small-cell lung cancer, thereby extending the body of knowledge on cultural differences and psychosocial aspects of this illness. 24 Dutch and 22 Japanese patients with non-small-cell lung cancer filled out questionnaires on three occasions: immediately before chemotherapy, 1 week later, and 8 weeks after the initial chemotherapy. The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) assessed QOL, and the Brief Illness Perception Questionnaire (B-IPQ) illness perceptions. Scores on several QOL measures indicated (a) major impact of first chemotherapy sessions, and (b) some tendency to returning to baseline measures at 8 weeks. Differences between Japanese and Dutch samples were found on five EORTC QLQ-C30 dimensions: global health status, emotional functioning, social functioning, constipation, and financial difficulties, with the Dutch patients reporting more favorable scores. Regarding illness perceptions, Japanese patients had higher means on perceived treatment control and personal control, expressing a higher sense of belief in the success of medical treatment than Dutch patients. In both Japanese and Dutch patients, impact of chemotherapy on QOL was evident. Some differences in illness perceptions and QOL between the two samples were observed, with implications for integral medical management. Both samples reported illness perceptions that reflect the major consequences of non-small-cell lung cancer. Incorporating symptom reports, illness perceptions, and QOL into medical management may have positive consequences for patients with non-small-cell lung cancer.
Lung cancer (Amsterdam, Netherlands) 10/2010; 72(3):384-90. · 3.14 Impact Factor
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ABSTRACT: The novel Cancer ward (Solzhenitsyn, 1968) was used to examine the perceptions that cancer patients hold regarding their illness and its treatment, and how these perceptions relate to theoretical models in health psychology. Excerpts were identified, categorized and interpreted using the Self-Regulation Model of illness. The model's dimensions of illness perceptions were apparent throughout Cancer ward. Patients held specific representations about cancer, many of which are similar to those found today. Analysing a novel on cancer provides insight into patients' embodied experiences and perceptions of cancer and treatment. Incorporating illness perceptions into medical care improves the quality of life of patients.
Journal of Health Psychology 05/2010; 15(6):848-57. · 1.22 Impact Factor
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Arthritis care & research. 05/2010;
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ABSTRACT: Outcome in asthma is determined not only by pulmonary function or other biomedical characteristics. An important determinant of asthma outcome is illness perceptions: patients' subjective beliefs and emotional responses to their illness. Illness perceptions influence patients' coping and self-management behavior, and thereby outcome.
We review recent studies on associations between illness perceptions and outcome in patients with asthma, with a range of respondents and caregivers, with varying degree of asthma severity, and in different settings of medical care. Most studies pertain to substantial numbers of patients, and have been performed in different countries, adding to the external validity of the findings. All studies report substantial effects of illness perceptions on various categories of outcome: illness perceptions reflecting personal control over the illness are associated with a positive outcome, that is, asthma control. Findings point at the importance and clinical relevance of addressing patients' illness perceptions, and suggest that this may improve outcome in asthma care. Well conducted intervention studies on this topic are called for in order to improve outcomes and quality of life in asthma patients.
Illness perceptions influence the way in which patients with asthma cope and their self-management of the illness. Illness perceptions can be assessed quite easily and directly, they inform healthcare providers about the psychosocial responses of patients towards their asthma, they are responsive to change in the clinical encounter or via self-management intervention training. Exploring patient's illness perceptions, therefore, is a crucial component of good clinical care.
Current Opinion in Allergy and Clinical Immunology 04/2010; 10(3):194-9. · 4.11 Impact Factor
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ABSTRACT: Sternocostoclavicular hyperostosis (SCCH) is a rare, debilitating, chronic inflammatory disorder of the anterior chest wall due to a chronic sterile osteomyelitis of unknown origin, often associated with characteristic skin lesions of palms and soles: pustulosis palmoplantaris. SCCH goes often unrecognized for years before the diagnosis is established and treatment instituted. The objective of this study was to trace the diagnostic paths of patients with SCCH and to investigate the consequences associated with diagnostic delay.
Data were collected through structured interviews of 52 patients with a clinically, scintigraphically, and radiologically established diagnosis of SCCH.
The majority of patients presented with swelling and/or pain in the sternocostoclavicular region and/or limited movement of the shoulder girdle. Pustulosis palmoplantaris was present in approximately 30% of patients. The disease went unrecognized for a median of 3.5 years. Patients were often seen by at least 3 members of the medical profession before the diagnosis was suspected and eventually established. Lack of recognition of the clinical manifestations of the disease and delay in diagnosis were associated with important physical, psychological, and socioeconomic consequences affecting quality of life.
SCCH remains an ill-recognized disease despite its characteristic clinical features. A low level of awareness of the disorder leads to a delay in diagnosis, which has a significant impact on various aspects of quality of life. Awareness should be raised for this disorder, enabling timely diagnosis and initiation of treatment to prevent the irreversible physical and psychological sequelae associated with the protracted untreated state.
Arthritis care & research. 02/2010; 62(2):251-7.
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ABSTRACT: To examine the association between changes in common sense models and changes in functional status over a 6-year follow-up in patients with osteoarthritis.
At baseline and follow-up, osteoarthritis outpatients (N = 241) recruited from a university medical center completed the Illness Perception Questionnaire-Revised (IPQ-R), the Australian/Canadian Osteoarthritis Hand Index, and the Western Ontario and McMasters Universities Osteoarthritis Index. Also, their physician-assessed pain intensity, and biomedical, and clinical measures of medical severity of osteoarthritis were recorded.
Functional disability, pain intensity.
Over 6 years, functional disability and pain intensity increased. The IPQ-R dimensions of timeline, personal control, and illness coherence became more negative, and emotional representations became less negative (i.e., more accepting). Patients identified as sharing a similar profile of negative changes on the IPQ-R had significantly worse functioning on 2 of 3 outcomes, independent of objectively measured osteoarthritis severity.
Changes in illness perceptions were associated with changes in outcomes. Interventions to prevent increasingly negative patterns of illness perceptions over time, with an emphasis on strengthening control cognitions, may benefit functional status outcomes in patients with osteoarthritis.
Health Psychology 01/2010; 29(1):56-64. · 3.87 Impact Factor
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ABSTRACT: Sternocostoclavicular hyperostosis (SCCH) is a rare, debilitating, chronic inflammatory disorder of the anterior chest wall due to a chronic sterile osteomyelitis of unknown origin. SCCH is largely underdiagnosed and often misdiagnosed. In individual cases it can remain unrecognized for years. The purpose of this study is twofold. Firstly, to evaluate the psychological condition of SCCH patients, both in the sometimes quite extended pre-diagnostic period between first manifestations and confirmed diagnosis of the disease, and in the current situation. Secondly, to investigate the relationships between the pre-diagnostic and the current psychological conditions of confirmed SCCH patients.
Structured interviews were held with 52 confirmed SCCH patients. Questionnaires were included to assess posttraumatic stress symptoms, social support, aspects of pain, illness perceptions, self-reported health status, and quality of life.
SCCH patients reported stronger posttraumatic stress symptoms, more unfavorable illness perceptions, lower health status, and poorer quality of life than healthy individuals and patients with other diseases or traumatic experiences. Psychological distress in the pre-diagnostic period was associated with unfavorable conditions in the current situation.
SCCH is an illness with serious psychological consequences. Psychological monitoring of patients with unexplained complaints is recommended as long as a diagnosis has not been reached.
Health and Quality of Life Outcomes 01/2010; 8:97. · 2.11 Impact Factor
