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Living with Huntington's disease: Illness perceptions, coping mechanisms, and patients' well-being
Desirée I. Helder1, Ad A. Kaptein, Godfried M. J. Van Kempen
1Unit of Psychology, Department of Psychiatry, Leiden University Medical Centre (LUMC), The Netherlands.
Insights
Huntington's disease (HD) patients perceive their illness as long-lasting with negative consequences, impacting their well-being. Illness perceptions and coping strategies significantly predict the well-being of individuals with HD.
Area of Science:
- Health Psychology
- Neurodegenerative Diseases
Background:
- Huntington's disease (HD) is a progressive neurodegenerative disorder.
- Understanding patient experiences is crucial for supportive care.
Purpose of the Study:
- To describe illness perceptions and coping mechanisms in HD patients.
- To assess the impact of these factors on patient well-being.
Main Methods:
- Cross-sectional study of 77 individuals with confirmed HD diagnosis.
- Assessed illness perceptions, coping, motor/cognitive function, and well-being via interviews.
- Utilized correlational and regression analyses.
Main Results:
- HD patients reported strong illness identity, long duration beliefs, perceived negative consequences, and low hope for cure.
- Coping strategies were similar to those used for general life stressors.
- HD patients reported lower physical and general health well-being compared to the general population.
- Illness perceptions and coping mechanisms were significant predictors of well-being.
Conclusions:
- Illness perceptions and coping strategies play a key role in the well-being of Huntington's disease patients.
- Further health psychology research is warranted to explore these relationships.
- Findings highlight the need for tailored psychological support in HD management.
Abstract:
OBJECTIVES: To describe the illness perceptions and coping mechanisms of patients with Huntington's disease (HD), and to assess their role in the well-being of these individuals. DESIGN: A single group, cross-sectional study. METHODS: In 77 individuals with a clinically confirmed diagnosis of HD, illness perceptions, coping mechanisms, motor and cognitive performance, and well-being were assessed by means of questionnaire-guided interviews, and subjected to correlational analyses, t-tests and two-stage regression analyses. RESULTS: HD patients' illness perceptions were characterized by a strong illness identity, combined with beliefs about a long duration of HD, perceived negative consequences for their daily lives, and little hope for cure or improvement of their symptoms. In turn, the coping strategies that HD patients reported adopting to deal with their disease were comparable with those adopted by reference individuals dealing with everyday life stressful situations. Where the well-being of HD patients is concerned, compared with Dutch community sample, HD patients scored significantly lower on measures of physical well-being and general health. Both illness perceptions and coping mechanisms were significant predictors of patients' well-being. CONCLUSIONS: More systematic research within a health psychology framework is justified in order to assess the role of illness perceptions and coping mechanisms in the well-being of HD patients.