The family impact of skin diseases: the Greater Patient concept

Background Although the impact of skin disease on patients' health-related quality of life (HRQoL) is well known, little work has been carried out to determine the secondary impact of a patient's skin disease on the patient's family or partner. Objectives The aim of this study was to identify the different aspects of a family member's QoL that may be affected by having a family member with skin disease. Methods Qualitative interviews were conducted with 50 family members/partners of patients attending the outpatient clinic of a university hospital, with a wide range of dermatological conditions (n = 21). Subjects were invited to discuss in detail all the ways that their lives were affected by living with a patient with skin disease. Results The mean age of subjects (M = 19; F = 31) was 48.1 years (SD = 15.7) most were either parents (44%) or spouses/partners (44%) of the patients. Patients' ages (M = 16; F = 34) ranged from 5 months to 84 years. Fifty-nine aspects of QoL of family members were identified that were adversely affected by the patients' skin disease. These were categorized into 18 main topic areas: Emotional distress (98%), Burden of care (54%), Effect on housework (42%), Social life (48%), Holidays (46%), Financial aspect (30%), Physical well-being (22%), Job/study (40%), Leisure activities (26%), Sleep (20%), Food/drink (12%), Restriction of liked activities (14%), Need for support (12%), People's attitude (10%), Dissatisfaction with medical care (14%), Effect on sex life (8%), Role of religious faith (8%) and Miscellaneous (16%). There was no significant difference between male and female subjects regarding main QoL areas affected. The median number of main topic areas reported per family member was five (mean = 5.2, range = 1-10, SD = 2.64). Conclusions This study has demonstrated that skin diseases can significantly impair the HRQoL of the patient's family in very diverse ways. Asking family members about this impact is greatly appreciated by them. We propose the 'Greater Patient' concept to describe the immediate close social group affected by a person having skin disease.