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A A Kaptein

Publications and source records attributed to A A Kaptein.

At least 19 recordsLinked to original sources

Conceptual equivalence and health-related quality of life: an exploratory study in Japanese and Dutch cancer patients.

Research into the equivalence of Western and Japanese conceptualizations of health-related quality of life (HR-QOL) is scarce. We used the Western (European Organization for Research and Treatment of Cancer, EORTC-QLQ-C30) and the Japanese (HRQoL-20) questionnaire in order to analyze the conceptual similarity of HR-QOL factors, and the associations between specific symptom items with overall HR-QOL in Japanese (n=265) and Dutch (n=174) patients with various types of cancer. Both populations completed both instruments. In both patient groups, the overall health scale of the EORTC-QLQ-C30 correlated highly (r=0.59; p<0.001) with the HRQOL-20 composite average score, indicating substantial conceptual comparability. Relationships between all EORTC-QLQ-C30 symptom items with HR-QOL were examined by ranking their correlations with the two overall measures of HR-QOL. Comparable patterns in the Japanese and Dutch samples were observed. The results suggest a considerable conceptual equivalence of HR-QOL in Japanese and Dutch cancer patients, and indicate a satisfactory structural and cross-cultural equivalence for the EORTC-QLQ-C30 with regard to items measuring functioning and specific symptoms. Longitudinal studies are needed to examine the impact of specific symptoms on general quality of life.

Attitude to Health↗

Modern health worries in medical students.

OBJECTIVE: The aim of this study was to investigate the association between modern health worries (MHW), subjective health complaints, and use of health care services in first-year Dutch medical students, and to compare MHW in Dutch and New Zealand cohorts. METHODS: Two hundred and twenty-seven Dutch first-year medical students completed questionnaires assessing MHW, subjective health complaints, positive and negative affect (PA and NA, respectively), and use of health care services. RESULTS: Dutch medical students were most concerned about drug resistant bacteria and least concerned about vaccination programmes. Overall, female students were more concerned about modern health issues than were male students. Students' scores on the MHW scale were significantly associated with subjective health complaints. Subjective health complaints were also significantly related to the use of health care services. The factor structure of the MHW scale was replicated. Respondents reported significantly lower scores on all MHW items than did New Zealand students. CONCLUSIONS: Worries about modernity are reliably associated with subjective health complaints and use of health care services in Dutch medical students.

Adolescent↗

Attitudes toward genetic testing for thrombophilia in asymptomatic members of a large family with heritable protein C deficiency.

BACKGROUND: Little research has been performed regarding the psychological consequences of knowing that one is at an increased risk for venous thrombosis. OBJECTIVES: The aim of this study was to explore attitudes toward genetic testing for protein C deficiency. METHODS: Questionnaires about genetic testing attitudes, dispositional anxiety, risk perception, and thrombosis-related worry were completed by 168 asymptomatic members of a North-American kindred with a high incidence of heritable protein C deficiency conferring a high lifetime risk of venous thrombosis. A total of 76 subjects (45%) had not been tested for protein C deficiency before participating in our study whereas the other 92 subjects (55%) had been tested prior to filling in the questionnaire, of whom 34 people had protein C deficiency, while 58 did not. RESULTS: Family members with protein C deficiency perceived a higher risk of suffering venous thrombosis and scored higher on thrombosis-related worry than family members without protein C deficiency. Participants who had not been tested did not report excessive thrombosis-related worry. Participants with protein C deficiency reported a belief in the psychological and health benefits of testing, and felt that they experienced low psychological distress following the genetic test. High psychological distress following the test was related to dispositional anxiety and thrombosis-related worry. Participants without protein C deficiency were relieved after finding out that they did not have the deficiency. CONCLUSION: There seem to be few negative psychological consequences of knowing that one is at an increased risk for venous thrombosis, except in vulnerable individuals.

Adolescent↗

The impact of venous thrombosis on quality of life.

Quality of life (QOL) is increasingly seen as an important outcome in clinical care. Etiology, diagnosis, and management of venous thrombosis have been studied extensively, but only few studies have examined the impact of venous thrombosis on quality of life. The purpose of this study was to examine the impact of venous thrombosis on quality of life in a well-defined population of patients with venous thrombosis, by using both a generic and a disease-specific quality of life measure. A total of 45 patients from the thrombosis clinic of the University of Vermont in Burlington, VT, returned a mailed questionnaire including the Short-Form 36 (SF-36) and a disease-specific venous thrombosis-quality of life (VT-QOL) questionnaire about the problems faced by patients with venous thrombosis. The sample consisted of 13 men (28.9%) and 32 women (71.1%). The mean age was 44.1 years, with a range from 21 to 80 years. Compared with population norms of a general U.S. population that were adjusted for age and sex (N= 2463), venous thrombosis patients scored significantly lower (p < 0.05) on all subscales of the SF-36. Patients with the postthrombotic syndrome (PTS) appeared to have more impairment in their quality of life as measured by both the SF-36 and the disease-specific questionnaire. All correlations between the SF-36 subscales and the subscales of the VT-QOL were significant, most of them on a p < 0.01 level. Given the impact of venous thrombosis and the postthrombotic syndrome on quality of life, assessment of QOL should be included in future studies on the outcome of venous thrombosis.

Adult↗

Quality of life in adults following bone marrow transplantation during childhood.

SUMMARY: Quality of life (QOL) was assessed in 22 young adults, 14 years - on average- after having received bone marrow transplantation (BMT) during childhood at the Leiden University Medical Center. All were disease-free and >16 years when interviewed. The sickness impact profile and the Medical Outcome Study 36-item Short Form Health Survey were used as generic questionnaires in the assessment of QOL. The Functional Assessment of Cancer Therapy-Bone Marrow Transplant Scale (FACT-BMT) was used as a disease-specific measure of QOL. Coping was assessed by means of the Utrecht coping list. BMT-related variables were obtained from medical files. Of the generic QOL measures, most results fell within the normal range of functioning, although some illness-related impairment was reported on subscales for general and work-related functioning. Compared to a reference sample of patients who had received BMT as adults, patients involved in this study scored significantly higher on the 'emotional well-being' subscale of the FACT-BMT, indicating significantly better emotional functioning. The age at BMT and total body irradiation (TBI) were not related to patients' QOL. We can conclude that at long term, having received BMT during childhood does not negatively affect the QOL of patients. Bone Marrow Transplantation (2004) 33, 329-336. doi:10.1038/sj.bmt.1704345 Published online 1 December 2003

Adolescent↗

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

OBJECTIVE: To estimate the effect of nocturia on quality of life (QoL) and to assess the associated effects of sleep problems. SUBJECTS AND METHODS: From a random sample of Dutch adults (>/= 18 years old) 1000 were selected after stratification to complete a written questionnaire. Respondents (819) were distributed over three groups: a target group (189, who felt bothered by >/= one void/night); a reference group 1 (120 reporting >/= two voids/night but with no bother); and reference group 2 (510, with 0-1 voids/night). Nocturia, other lower urinary tract symptoms and perceived impact on life were measured using the Bristol Lower Urinary Tract Symptoms Questionnaire (B-LUTS). Sleep problems were measured using the Sleep Wake Experience List (SWEL) and QoL using two subscales from the RAND-36, i.e. 'physical functioning' and 'mental health'. RESULTS: The perceived impact on life was highest in the target group (P < 0.05), which also had more sleep problems and scored lower on the QoL scores than both reference groups (P < 0.05). Statistically significant differences in mental health and physical functioning between the target and reference groups became insignificant after correcting for sleep problems, indicating that the effect of nocturia (with bother) is mediated by sleep problems. CONCLUSIONS: Nocturia may lead to sleep insufficiency and consequently to a decrease in mental and physical health. Patients who consult a doctor for nocturia should thus be treated adequately. In addition, it is worthwhile for doctors to routinely check if patients who contact them for sleep problems also have nocturia.

Adult↗

Patient self-management of oral anticoagulant care vs. management by specialized anticoagulation clinics: positive effects on quality of life.

BACKGROUND: Oral anticoagulant therapy (OAT) implies frequent blood checks and dose changes to prevent thromboembolic or hemorrhagic complications. This may interfere with patients' social and working circumstances in addition to the possible stress caused by the condition necessitating this treatment. We studied whether patient self-management could be a way to improve quality of life in these patients. METHODS: Within a multicenter randomized study performed by two Dutch anticoagulation clinics, designed to study the effect on treatment quality (time within target range) of different modalities of patient self-management, we looked at the effect of increased patient education (n = 28), self-monitoring of the International Normalized Ratio (INR) (n = 47) and full patient self-management (INR monitoring and dosing of the OAT) (n = 41) on the quality of life of the patients. This was done with the aid of a written questionnaire (32 questions, minimum score = 1, maximum score = 6) at baseline (n = 163), and after 26 weeks (n = 118). We compared the results after 26 weeks with those at baseline, as well as between groups. RESULTS: General treatment satisfaction was already high under routine care (5.11 on a scale of 1-6) and increased further through self-monitoring of the INR (+0.19) and full self-management (+0.32). Distress (-0.44), perceived daily hassles (-0.31) and strain on the social network (-0.21) were reduced through full self-management. Improved patient education was associated with increased distress (+0.33) and perceived daily hassles (+0.23). Comparison at 26 weeks between groups showed similar improvements on these outcomes for self-monitoring and self-management vs. routine care after education.

Adult↗

Living with Huntington's disease: illness perceptions, coping mechanisms, and spouses' quality of life.

Chronic illness not only affects the life of those suffering from Huntington's disease but also threatens the quality of life (QOL) of their spouses. In this study, we focus on Huntington's disease (HD). The impact of HD on the QOL of spouses has been hardly studied from a behavioral medicine or health psychology perspective. We hypothesize that spouses' illness perceptions and coping mechanisms will contribute significantly to the prediction of their QOL. Illness perceptions, coping mechanisms, and the QOL of 90 spouses of patients with HD were assessed by means of the Illness Perception Questionnaire, the COPE, and the Medical Outcome Study 36-item Short Form Health Survey, respectively. After controlling for demographic and illness-related variables, coping mechanisms explained a significant amount of variance of spouses' role functioning. Given our results, more empirical and longitudinal research is justified on coping mechanisms and illness perceptions of spouses living with Huntington's disease.

Adaptation, Psychological↗

Impact of Huntington's disease on quality of life.

The purpose of this study was to systematically assess the impact of Huntington's disease (HD) on patients' health-related quality of life (QOL). Seventy-seven patients with a clinically confirmed diagnosis of HD were interviewed by means of the Sickness Impact Profile (SIP). Additional data were gathered on patients' motor performance by means of the motor section of the Unified Huntington Disease Rating Scale (UHDRS), and cognitive performance by means of the Mini-Mental State (MMS). Patients had high scores on the SIP subscales, indicating moderate to severe functional impairment. Total Motor Score (TMS), MMS scores, and the duration of HD were significantly correlated with patients' scores on the SIP, and predicted a significant amount of variance of the Physical Dimension of the SIP, but not of the Psychosocial Dimension. We conclude that HD has a great impact on patients' physical and psychosocial well-being, the latter being more severely affected. Implications for further research and clinical practice are discussed.

Adaptation, Psychological↗

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.

Adaptation, Psychological↗

Patients' illness perceptions and coping as predictors of functional status in psoriasis: a 1-year follow-up.

In a longitudinal study (two measurements with a 1-year interval), 69 patients with psoriasis completed the Illness Perception Questionnaire, the Medical Outcomes Study SF-20 Health Survey, and the Hospital Anxiety and Depression Scale. Data on coping (Utrecht Coping List) and severity of illness (body surface scores) were also collected. The results of regression analyses indicated that a strong illness identity was associated with more visits to the outpatient clinic, and worse outcome on physical health, social functioning, mental health, health perceptions and depression. Strong beliefs that the disease is controllable/curable and that the disease has disabling consequences were also related to more clinic visits and more negative perceived health, respectively. Patients who initially engaged in coping characterized by more expression of emotions, seeking more social support, seeking more distraction, and less passive coping were prescribed a lower number of different therapies, were less anxious, less depressed, and had a better physical health 1 year later. These results have implications for the management of patients with psoriasis, which reinforces current views on integrating psychosocial aspects into clinical care.

Activities of Daily Living↗

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.

Adaptation, Psychological↗

Predicting functional status in patients with rheumatoid arthritis.

OBJECTIVE: To determine whether coping strategies and illness perceptions would be predictive of outcome in a longitudinal study of patients with rheumatoid arthritis (RA). METHODS: A group of 71 patients with RA was examined on 2 occasions, one year apart. Multiple regressions were used to examine which of the illness perceptions and coping strategies explained variance on the outcome variables: visits to the outpatient clinic, number of hospital admissions, Health Assessment Questionnaire, pain, tiredness, the Hospital Anxiety and Depression Scale. RESULTS: Belief in adverse consequences of the disease was associated with more visits to the outpatient clinic. more tiredness, and higher anxiety scores. Less perceived control and less expression of emotion were associated with more hospital admissions. High scores on coping involving fostering reassuring thoughts were associated with more functional disability. More passive coping was associated with more functional disability and higher anxiety scores. More perceived symptoms were associated with more pain, more tiredness, and more depression. More avoidant coping was associated with more tiredness. Belief that the illness will last a long time was associated with higher anxiety scores. CONCLUSION: Our longitudinal data show that, after statistically controlling for the potential effects of intervening medical variables, coping strategies and illness perceptions contribute to health outcome in patients with RA. Implications for patient management are discussed.

Adaptation, Psychological↗

Illness perceptions, coping and functioning in patients with rheumatoid arthritis, chronic obstructive pulmonary disease and psoriasis.

The present cross-sectional study analyzed the extent to which illness perceptions and coping strategies (as measured by the Illness Perception Questionnaire and the Utrecht Coping List, respectively) are associated with levels of daily functioning, as indicated by the Medical Outcomes Study SF-20, and disease-specific measures in 244 adults: 84 with rheumatoid arthritis (RA); 80 with chronic obstructive lung disease (COPD); and 80 with psoriasis. The results of stepwise regression analyses indicated that a strong illness identity, passive coping, belief in a long illness duration, belief in more severe consequences, and an unfavorable score on medical variables were associated with worse outcome on disease-specific measures of functioning and on general role and social functioning. Coping by seeking social support and beliefs in controllability/curability of the disease were significantly related to better functioning. The implications of these findings for future interventions and research are discussed.

Activities of Daily Living↗

Are pretransplant psychological variables related to survival after bone marrow transplantation? A prospective study of 123 consecutive patients.

Few studies have investigated relationships between psychological variables and survival after bone marrow transplantation (BMT). There is some evidence that psychological variables play a role in the course of cancer, and also after BMT. The present study focused on relationships between psychological variables and survival after BMT, in addition to prognostic disease, treatment, and demographic variables. In a consecutive sample of 123 patients undergoing BMT between 1987 and 1992, psychological variables were assessed before BMT. None of the psychological variables was univariately related to survival when entered into a Cox proportional hazards model as continuous variables. When divided into four groups of equal size, based on the 25th, 50th, and 75th percentiles, low self-esteem tended to be related to shorter survival. In multivariate analyses, none of the psychosocial variables measured before BMT was significant. Our data do not support the view that psychological variables influence survival after BMT.

Adolescent↗

The diagnosis of allergic rhinitis: how to combine the medical history with the results of radioallergosorbent tests and skin prick tests.

OBJECTIVE: To identify the most useful combinations of symptoms and the results of radioallergosorbent tests (RASTs) and skin prick tests (SPTs) for the diagnosis of allergic rhinitis. DESIGN: A prospective comparison was made of symptoms and the results of RASTs and SPTs with 7 different nasal allergies; the references used were the "consensus diagnoses" provided by 3 experts. SETTING: Nineteen general practices in The Netherlands. PATIENTS: 365 consecutive patients aged 12 or over who visited their general practitioner because of chronic or recurrent nasal symptoms between 1 March 1990 and 1 March 1991. MAIN OUTCOME MEASURES: The most useful combinations of items from the history, RASTs, and SPTs, for the diagnosis of 7 different nasal allergies; the predictive probabilities of these combinations. RESULTS: Diagnostic criteria could be drawn up resulting in a near-perfect discrimination between patients diagnosed as having allergic rhinitis and patients diagnosed as not having allergic rhinitis. Most of these criteria combined only a single item from the history with either RAST or SPT. For nearly all nasal allergies, both the negative predictive probabilities and the positive predictive probabilities were 97% or more. CONCLUSIONS: The common nasal allergies can be diagnosed with a very high certainty with the aid of simple diagnostic criteria. Data from a strictly limited case history combined with either RAST or SPT are sufficient.

Adolescent↗

Quality of life in patients with cystic fibrosis.

The majority of patients with cystic fibrosis (CF) will grow into adulthood. Despite this improvement in survival, the disease is progressive, especially with respect to the decline in pulmonary function, which in turn may have an impact on a patient's quality of life. In this study we evaluated the quality of life in CF adults and examined the relationship between quality of life and pulmonary function, exercise capacity, and dyspnea. We assessed in 15 patients in stable clinical condition their forced expired volume in the first second (FEV1) inspiratory vital capacity (IVC), cycle exercise capacity (Wmax), and subjective degrees of dyspnea during daily living (MRC dyspnea scale). Quality of life was assessed with the Sickness Impact Profile (SIP). A sample of 100 healthy individuals, ranging in age from 18 to 30 years, served as the control group. Mean (SD) age of the patients was 25.9 (7.3) years, FEV1 was 38 (16)% predicted, IVC was 65 (17)% predicted, FEV1 IVC ratio was 46 (10)%, and Wmax was 90 (54) W. The overall SIP and physical SIP scores in CF patients were significantly higher than in the controls, indicating more impairment in overall and physical functioning in the patients than in the control group (P < 0.001). The psychosocial SIP score did not differ significantly between the two groups. Overall SIP score correlated poorly with FEV1 % predicted (r = -0.33; n.s) and IVC % predicted (r = -0.36; n.s.) but showed a better and significant relationship to the maximal exercise capacity (r = -0.57; P < 0.05). MRC dyspnea scores showed a strong correlation with overall SIP scores (r = 0.75; P < 0.001). These results show that CF affects quality of life in adults primarily due to a limitation in physical functioning. Psychosocial functioning did not differ from that of healthy controls. Exercise capacity and dyspnea scores were related to the impairment in the quality of life. Therefore, the effects of programs aimed to improve exercise capacity and reduce dyspnea on CF patients' quality of life need to be evaluated.

Adolescent↗

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.

Adolescent↗