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

A A Kaptein, M Scharloo, D I Helder, L Snoei, G M J van Kempen, J Weinman, J C van Houwelingen, R A C Roos, A A Kaptein, M Scharloo, D I Helder, L Snoei, G M J van Kempen, J Weinman, J C van Houwelingen, R A C Roos

Abstract

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.

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