Ad A. Kaptein

Psychological functioning and quality of life following bone marrow transplantation : A 3-year follow-up study

OBJECTIVE To assess changes in quality of life and psychological distress following bone marrow transplantation (BMT) and variables related to this change. METHODS One hundred twenty-five consecutive patients who underwent bone marrow transplantation (BMT) at the Leiden University Medical Centre between 1987 and 1992 filled in questionnaires measuring quality of life, functional limitations, psychological distress, anxiety, depression, self-esteem, and health locus of control. Measurements were taken before the BMT; 1 month after discharge; and 6 months, 1 year, and 3 years after the BMT. RESULTS Three years after BMT, a quarter of the patients continued to experience serious functional limitations. Thirteen percent of the patients scored >4 on the General Health Questionnaire (GHQ-12), a percentage comparable to general population prevalence. Quality of life was reported to be good to excellent by almost 90% of the patients at three years. Changes in quality of life could be explained entirely by changes in functional limitations and somatic symptoms. Changes in psychological distress were also related to these measures, and furthermore to baseline psychological functioning. CONCLUSION Although patients were doing well three years after BMT, there was a group of patients needing help. In interventions special attention should be given to patients with ongoing psychological problems. Emphasis should be on coping with physical limitations.

The development of the ‘Quality-of-Life for Respiratory Illness Questionnaire (QOL-RIQ)’: a disease-specific quality-of-life questionnaire for patients with mild to moderate chronic non-specific lung disease

Chronic non-specific lung disease (CNSLD) encompasses asthma as well as chronic obstructive pulmonary disease (COPD). Recently in health care, there has been increasing awareness in the functional, psychological and social aspects of the health of patients; their quality of life (QOL). Quality-of-life research addressing CNSLD patients has been rather underdeveloped for a long period of time. Recently, however, the importance of QOL is being increasingly recognized, and several research groups have started to study QOL in CNSLD patients in more detail. This paper describes the construction of a disease-specific QOL instrument for patients with mild to moderately severe CNSLD. Items relating to several domains of QOL were listed, and 171 CNSLD patients in general practice were asked how much of a problem each item had been (assessed on a seven-point Likert scale). After applying an item-selection procedure, a uni-dimensional QOL questionnaire was constructed consisting of 55 items divided into seven domain subscales: breathing problems, physical problems, emotions, situations triggering or enhancing breathing problems, general activities, daily and domestic activities, and social activities, relationships and sexuality. Reliability estimates of the domain subscales of the constructed questionnaire varied from 0.68 to 0.89, and was 0.92 for the QOL for Respiratory Illness Questionnaire (QOL-RIQ) total scale. A first impression of the construct validity of the questionnaire was gained by investigation of the relationship between the QOL domain subscales and several indicators of illness severity, as well as the relative contribution of illness severity variables, background characteristics and symptoms to QOL, using regression analysis. Further research to validate the questionnaire to a greater extent (construct validity, test-retest reliability and responsiveness to change) is currently taking place.

Illness perceptions in dialysis patients and their association with quality of life

The present study explored illness perceptions of end stage renal disease (ESRD) patients on both haemodialysis (HD) and peritoneal dialysis (PD) treatment, and their associations with quality of life. Leventhals self-regulation model (SRM) was used as a theoretical framework. Illness perceptions and quality of life were assessed with the IPQ-R and the SF-36 in 91 HD and 42 PD patients participating in the NECOSAD-study. Compared to HD patients, PD patients experienced more personal control and had a better understanding of the illness. Illness perceptions explained from 17 to 51% of the variance in quality of life scores. Perception of more symptoms, more consequences and lower personal control were associated with lower well-being. The concept of illness perceptions is useful in understanding the impact of ESRD and of dialysis treatment on quality of life. Interventions aimed at providing more knowledge about ESRD and dialysis, and provision of skills to coping with the illness and its consequences may improve quality of life in dialysis patients.

Physical and psychological correlates of functioning in patients with chronic obstructive pulmonary disease.

We studied the contribution of coping and illness perceptions to outcome in patients with chronic obstructive pulmonary disease (COPD). In a longitudinal study, 64 patients completed the Medical Outcomes Study Instrument and the Illness Perception Questionnaire. Data on coping and severity of illness (spirometry) were also collected. Regression analyses showed that first-time illness perceptions and coping significantly contributed to the prediction of social functioning, mental health, health perceptions, total functioning score, and prediction of visits to the outpatient clinic and prescribed medication 1 year later. These results have important implications for the medical management of patients with COPD.

Illness perceptions in patients with fibromyalgia and their relationship to quality of life and catastrophizing

OBJECTIVE In the last decade, illness perceptions have been identified as important in the treatment of fibromyalgia (FM). The aim of the present study was to examine illness perceptions and use of the revised Illness Perception Questionnaire in patients with FM (IPQ-R-FM) and their relationship to quality of life and catastrophizing. METHODS A domain with specific causal attributions related to FM was added to the IPQ-R-FM. The psychometric properties of the IPQ-R-FM dimensions and attribution scales were examined. The causal domain, in which patients describe the most important perceived causes for their FM, was analyzed. To analyze the relationship with quality of life and catastrophizing, the Fibromyalgia Impact Questionnaire and the Pain Catastrophizing Scale were used. RESULTS Fifty-one outpatients completed the questionnaires on 2 occasions, 3 weeks apart. FM was considered to be chronic and to have serious consequences; patients perceived little personal control and did not expect medical treatment to be effective. The psychometric properties of the IPQ-R-FM were found to be adequate. Patients most frequently attributed the causes of FM to an external somatic source (58%). Quality of life was related to experiencing more consequences attributable to FM. Catastrophizing was related to a limited understanding of the symptoms of FM, the more cyclical nature of FM, and an emotional representation. CONCLUSION The IPQ-R-FM is a useful tool to assess illness perceptions in patients with FM. Illness perceptions are related to quality of life and catastrophizing; therefore, it seems important to assess and integrate illness perceptions into the management of patients with FM.

Quality of Life in Long-term Survivors of Acute Pulmonary Embolism

BACKGROUND 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. METHODS 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. RESULTS 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. CONCLUSION 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.

Illness perceptions in patients with osteoarthritis: Change over time and association with disability

OBJECTIVE To investigate changes in illness perceptions in patients with osteoarthritis (OA) and the association of those changes with disability, and to determine the predictive value of illness perceptions in disability. METHODS Illness perceptions and disability were measured at baseline and after 6 years in 241 patients with OA at multiple sites (mean age 59.0 years, 82.2% women) using the revised Illness Perception Questionnaire (IPQ-R) and the Health Assessment Questionnaire (HAQ), respectively. Mean changes for each IPQ-R dimension were reported and related to progression of disability, defined as the highest quartile of HAQ score change. The predictive value of baseline illness perceptions in disability at 6 years (with high disability defined as the highest quartile of HAQ score) was assessed using logistic regression. RESULTS Illness perceptions changed over time, and these changes were related to the progression of disability. Patients with progression of disability had an increase in symptoms attributed to OA, perceived consequences, perceived disease chronicity, negative emotions associated with OA and beliefs about immunity as causal factor, and a decrease in perceived control and understanding of OA compared with patients without progression of disability. Moreover, a higher number of symptoms attributed to OA, less perceived control, and more perceived consequences of OA at baseline were predictive of high disability after 6 years. CONCLUSION Illness perceptions in patients with OA changed over time, and these changes were related to outcome. Moreover, illness perceptions were predictive of disability. This may imply that interventions aimed at changing illness perceptions can contribute to better functional outcome.

Illness perceptions about asthma are determinants of outcome

This article reviews an emerging area of research on patients with asthma: namely, illness perceptions and their relationships with various aspects of outcome. The article briefly introduces the Common Sense Model, outlining the relevance of how “lay” patients conceptualize symptoms, illness, and treatment. On the basis of a comprehensive literature search, nine empirical studies illustrating the relationships between illness perceptions and outcomes are discussed. It is concluded that further research should focus on assessing asthma-specific illness and treatment beliefs. Also, given the effects of intervention studies in illness perceptions in other patient categories, it is recommended that serious consideration be given to intervention studies focusing on eliciting and changing illness perceptions in asthma patients, especially in those whose self-management seems to be inadequate.

Nocturia: impact on quality of life in a Dutch adult population

To estimate the effect of nocturia on quality of life (QoL) and to assess the associated effects of sleep problems.

The Use of Reliever Medication in Asthma: The Role of Negative Mood and Symptom Reports

The aim of this study was to investigate the relationships between negative mood, the reporting of asthma symptoms, and the use of short-acting bronchodilators (reliever medication). Forty-two adult asthma patients completed a daily questionnaire over 7 consecutive days. The questionnaire measured negative mood and the number of symptoms patients associated with their asthma. The symptoms included those typical of asthma, as well as nonspecific somatic and distress symptoms. Subjects were also asked to record their daily use of reliever medication and their peak flow values. Data analysis demonstrated that even when controlling for lung function, both asthma symptom labeling and negative mood were related to reliever use. A mediation model suggested that negative mood leads patients to associate a wide range of nonspecific symptoms with their asthma, thereby altering the perception of the severity of the asthma, which in turn influences their use of reliever medication. The results of this study are discussed in relation to asthma self-management strategies.