Adrian A. Kaptein

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.

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.

QUALITY OF LIFE AND ILLNESS PERCEPTIONS IN PATIENTS WITH RECENTLY DIAGNOSED HEAD AND NECK CANCER

The purpose of this study was to investigate which illness perceptions of patients recently diagnosed with head and neck cancer explain variance in their quality of life (QOL) to identify potential targets for interventions aimed at improving QOL.

Illness Perceptions and Quality of Life in Patients with Chronic Obstructive Pulmonary Disease

This study aimed at identifying cognitive and emotional representations relevant for improving health care communication and quality of life (QoL) in patients with chronic obstructive pulmonary disease (COPD). One-hundred-seventy-one COPD outpatients completed questionnaires on illness perceptions and QoL. After controlling for the effects of age, pulmonary function, and dyspnea, patients with decreased attention to symptoms, with more positive beliefs about the effects and outcomes of their illness, and with less strong emotional reactions to the illness, had higher QoL scores. The results of this study are discussed in relation to the associations found in other illnesses.

Illness perceptions in cancer survivors: what is the role of information provision?

The aim of this study was to provide insight into the relationship between information provision and illness perceptions among cancer survivors.

Association between a self-rated health question and mortality in young and old dialysis patients: a cohort study

BACKGROUND Self-rated health (SRH) has been shown to predict mortality in large community-based studies; however, large clinical-based studies of this topic are rare. We assessed whether an SRH item predicts mortality in a large sample of incident dialysis patients beyond sociodemographic, disease, and clinical measures and possible age interaction. STUDY DESIGN Prospective cohort study. SETTING & PARTICIPANTS 1,443 predominantly white patients from 38 dialysis centers in The Netherlands participating in the Netherlands Cooperative Study on the Adequacy of Dialysis-2 between 1997 and 2004. PREDICTOR SRH score completed at 3 months after the start of dialysis therapy (baseline). OUTCOMES & MEASUREMENTS Cox proportional hazards model estimated the association between SRH and all-cause mortality. Interaction of SRH with age (<65 and >/=65 years) was examined in an additive model. RESULTS Mean age of patients was 59.6 +/- 14.8 years, with 61% men and 69% married/living together. Mean follow-up was 2.7 +/- 1.8 years. Deaths per SRH group in the multivariate analyses sample: excellent/very good (9 of 63 patients; 14.3%), good (148 of 473 patients; 31.3%), fair (194 of 508 patients; 38.2%), and poor (45 of 71 patients; 63.4%). Patients with poor, fair, or good health ratings had a greater mortality risk than those with excellent/very good health ratings (adjusted hazard ratio [HR(adj)], 3.56; 95% confidence interval [CI], 1.71 to 7.42; HR(adj), 2.09; 95% CI, 1.06 to 4.12; HR(adj), 1.87; 95% CI, 0.95 to 3.70, respectively) independent of a range of risk factors. No age interaction with SRH was found. LIMITATIONS Although the SRH-mortality association remained strong despite extensive adjustments, unknown residual confounding could still exist. CONCLUSION SRH is an independent predictor of mortality in incident dialysis patients. Patients with poor SRH in both age strata had a significantly increased risk of mortality even after controlling for demographic and clinical confounders. Patient self-assessment of health can be an invaluable and economical complement to clinical measures in risk assessment.

Conservative treatment of vestibular schwannoma: a follow-up study on clinical and quality-of-life outcome.

Objective: To determine the natural history and long-term quality-of-life (QOL) outcome after conservative treatment for vestibular schwannoma. Study Design: Prospective study conducted in a university-based tertiary referral center. Patients: A total of 70 vestibular schwannoma patients who were initially included in the wait and scan protocol between January 2002 and December 2003 were followed with a mean observation time of 43 months. All patients had small- or medium-sized tumors when they were included in the protocol. QOL was measured at diagnosis and at the end of follow-up in those patients who were still conservatively treated using the Short Form 36 Health Survey (SF-36). The study group was characterized by nongrowing small tumors and relatively stable symptoms over time. Main Outcome Measures: Clinical, audiometric, radiologic, and QOL results. Results: In 44 patients (63%), growth of the tumor was not observed, and 25 (36%) tumors did grow. Of the 70 included patients, 27 patients (39%) required treatment. Forty-one patients (59%) were still conservatively treated at the end of follow-up (mean 47 ± 16 mo). Hearing was preserved in 16 (57%) of the 28 patients with useful hearing at diagnosis. At the end of follow-up, SF-36 scores were only slightly deteriorated for almost all subscales when compared with scores at diagnosis; however, differences were statistically not significant (p > 0.05). There was no significant correlation between the presence of cochleovestibular symptoms and QOL scores (p > 0.05). Conclusion: Conservative observation of small vestibular schwannomas may be regarded as a reasonable management option because most of these tumors do not grow during an initial period of observation. Conservative treatment of this subset of patients with small, nongrowing tumors does not significantly affect life functioning, as reflected in SF-36 survey data. However, hearing loss did progress in this population. Thus, patients should be counseled regarding this risk and generic QOL measures such as the SF-36 should be used with caution in future assessments. This study emphasizes the importance of combining generic and disease-specific QOL measures in future studies of protocols of vestibular schwannoma management.

High inhaled corticosteroids adherence in childhood asthma : the role of medication beliefs

Our aim was to study determinants of adherence in young asthmatic children over a 3-month period, including the role of parental illness and medication perceptions as determinants of adherence. Consecutive 2–6-yr-old children with asthma, using inhaled corticosteroids (ICS), followed-up at our paediatric asthma clinic (where patients are being extensively trained in self-management, and are followed-up closely) were enrolled. Adherence was measured electronically using a Smartinhaler® and calculated as a percentage of the prescribed dose. We examined the association of adherence to a range of putative determinants, including clinical characteristics and parental perceptions about illness and medication. Median (interquartile range) adherence, measured over 3 months in 93 children, was 92 (76–97)%, and most children had well controlled asthma. 94% of parents expressed the view that giving ICS to their child would protect him/her from becoming worse. Adherence was significantly associated with asthma control and with parental perceptions about medication. The high adherence rate observed in our study was associated with parental perceptions about ICS need. The high perceived need of ICS may probably be ascribed to the organisation of asthma care (with repeated tailored education and close follow-up).

Negative illness perceptions are associated with impaired quality of life in patients after long-term remission of Cushing's syndrome

OBJECTIVE Illness perceptions pertain to the pattern of beliefs patients develop about their illness. Illness perceptions are determinants of quality of life (QoL). Factors contributing to persisting impaired QoL after Cushings syndrome (CS) remain largely unknown. Therefore, the objective of this study was to explore illness perceptions, as potentially modifiable psychological factors, in relation to QoL in patients with long-term remission of CS. DESIGN Cross-sectional study. METHODS We included patients with long-term remission of CS (n=52). Illness perceptions were evaluated using the Illness Perception Questionnaire (IPQ)-Revised, and QoL was measured using the physical symptom checklist, EuroQoL-5D (EQ-5D), and the CushingQoL. Reference data were derived from recent studies and included patients with vestibular schwannoma (n=80), acute (n=35) or chronic (n=63) pain, and chronic obstructive pulmonary disease (COPD; n=171). RESULTS Illness perceptions showed a strong correlation with QoL. Patients with CS scored distinctively more negative on the IPQ compared with patients with vestibular schwannoma and patients with acute pain, and also reported more illness-related complaints (all P<0.01). There were also some differences in illness perceptions between patients with CS and patients with chronic pain and patients with COPD, but there was no distinct pattern. CONCLUSIONS Patients after long-term remission of CS report more negative illness perceptions compared with patients with other acute or chronic conditions. Further research is needed to assess whether QoL in CS can be improved by addressing these illness perceptions, for example, by a self-management intervention program.

Coping Strategies in Patients after Treatment for Functioning or Nonfunctioning Pituitary Adenomas

CONTEXT AND OBJECTIVE Coping strategies may affect quality of life, which is decreased in patients after treatment for Cushings disease, acromegaly, or nonfunctioning pituitary macroadenomas (NFMA). We aimed to explore coping strategies in these patients because this has never been done before. DESIGN We conducted a cross-sectional study. SUBJECTS We included patients treated for Cushings disease (n = 42), for acromegaly (n = 80), and for NFMA (n = 61). These patients were compared with three reference populations: an a-select sample from the Dutch population (n = 712), patients with chronic pain (n = 59), and patients receiving primary care psychology services (n = 525). Furthermore, the three patient groups were compared with each other. Coping strategies were assessed by the Utrecht Coping List. RESULTS Compared with the a-select sample, patients with pituitary adenomas reported less active coping (P < 0.0001), sought less social support (P < 0.0001), and reported more avoidant coping (P = 0.008). In contrast, patients treated for pituitary adenomas reported somewhat better coping strategies than patients with chronic pain and those with psychological disease. When patients with different pituitary adenomas were compared, patients treated for Cushings disease sought more social support than patients treated for NFMA (P = 0.035). CONCLUSIONS Patients treated for pituitary adenomas display different and less effective coping strategies compared with healthy controls. A targeted intervention might help to stimulate patients to use a more active coping strategy and to seek social support instead of an avoiding coping strategy. This might, in turn, improve their quality of life.