Quality of life in couples living with Huntington's disease: the role of patients' and partners' illness perceptions.

Research suggests that chronically ill patients and their partners perceive illness differently, and that these differences have a negative impact on patients' quality of life (QoL). This study assessed whether illness perceptions of patients with Huntington's disease (HD) differ from those of their partners, and examined whether spousal illness perceptions are important for the QoL of the couples (n = 51 couples). Partners reported that their HD-patient spouses suffered more symptoms and experienced less control than the patients themselves reported. Illness perceptions of patients and partners correlated significantly with patient QoL. Partners' beliefs in a long duration of the patients' illness and less belief in cure, were associated with patient vitality scores. Suggestions for future research emphasize the importance of qualitative research approaches in combination with cognitive-behavioural approaches.

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.

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

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.

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.