BackgroundPrevious studies have assessed family quality of life in individual disease areas and specialties. The aim of this study was to investigate the impact of disease on family members of patients over a wide range of specialties and identify key impact areas. This information is essential in order to reveal the extent of this impact and to allow strategies to be developed to support the family members of patients with chronic disease.MethodsSemi-structured interviews were carried out with 133 family members of mostly chronically ill patients from 26 medical specialties. Family members were invited to discuss all areas of their lives that had been affected by having an unwell relative. Thematic analysis was carried out using NVivo9® software.ResultsMost family members were female (61%), the partner or spouse of the patient (56%), or the parent (22%). Their mean age was 56.1 years (range: 21–85 years) and the mean duration of the patient’s disease was 8.9 years (range: 1 month to 60 years). Ten key themes of family quality of life were identified from interviews. The median number of themes reported by family members was six (range: 1–10). The key themes included: emotional impact (mentioned by 92% of subjects), daily activities (91%), family relationships (69%), sleep and health (67%), holidays (62%), involvement in medical care and support given to family members (61%), work and study (52%), financial impact (51%), social life (37%), and time planning (14%). Relationships between the themes were identified.ConclusionThis large scale multi-specialty study has demonstrated the significant, yet similar, impact that illness can have on the quality of life of patients’ family members. Family quality of life is a previously neglected area of health care which needs to be addressed in order to provide appropriate support for the patient and the family unit.

Most existing health-related quality of life research concerns the impact of disease on patients. However, in several medical specialties including dermatology, oncology, and physical and mental disability, studies have been carried out investigating the impact of disease on the lives of families of patients. The aim of this paper is to review the literature which relates to the impact of disease on family members of patients. The OVIDSP Medline was selected as the primary database, Searches were limited to sources published in English. 158 papers were identified for review. The definition of “family” varied across the literature, and a broad definition was accepted in this review. This review shows that a wide variety of aspects of family members’ lives can be affected, including emotional, financial, family relationships, education and work, leisure time, and social activities. Many of these themes are linked to one another, with themes including financial impact and social impact being linked to emotional impact. Some positive aspects were also identified from the literature, including family relationships growing stronger. Several instruments exist to measure the impact of illness on the family, and most are disease or specialty- specific. The impact of disease on families of patients is often unrecognised and underestimated. Taking into account the quality of life of families as well as patients can offer the clinician a unique insight into issues such as family relationships and the effect of treatment decisions on the patient's close social group of partner and family.

The FROM-16 is both reliable and valid for use. It has a potential for wide use, including clinical (healthcare professionals or researchers in all medical specialties), industrial and social sciences. The FROM can be used to identify areas where family members need further support, as well as identify those individuals most affected by the patient’s illness.

Background: Adolescence is a period of life with its own unique characteristics. Objectives: To provide an in-depth understanding of the impact of skin disease on different aspects of adolescents’ health-related quality of life (HRQoL). Methods: Semi-structured qualitative interviews were conducted with a sample of dermatology patients between 12 and 19 years of age, attending the dermatology outpatient clinic of a secondary referral centre. Participants were invited to talk in detail about all the ways their lives had been affected by their skin disease. Interviews were transcribed verbatim. Results: Thirty-two adolescents (males = 10, females = 22) with a mean age of 15.7 years (range = 12–18 years) participated in the interviews. Twenty-eight HRQoL themes adversely affected by skin diseases were identified from the interviews which were grouped under 6 main HRQoL domains – psychological impact (91% of patients), physical impact (81%), social impact (81%), impact on lifestyle (63%), need for support (41%) and education and employment (34%). The number of HRQoL themes affected in each individual varied between 1 and 23 (mean = 8.1). Conclusions: The results of this study revealed the extent and nature of the impact of skin diseases on adolescents’ HRQoL. A number of issues identified were specific to adolescents, highlighting the need for specific HRQoL assessment.

IntroductionPatient preference to antiretroviral therapy (ART) characteristics should be a key consideration in treatment decisions. ART options exist for people living with HIV (PLWH), however concerns remain related to PLWH satisfaction with current ARTs. The current study examines patient preferences and the strength of preferences for treatment characteristics associated with ART.Materials and MethodsPatients’ preferences to ART were explored using a discrete choice experiment (DCE). Seven defined treatment characteristics (each with three categories) were identified from a literature review, input from experts, PLWH and physicians. A total of 1582 PLWH from France, Germany, Spain, Italy and the UK were recruited for the study. An adjusted odds ratio <1 signified lower odds of selecting a treatment with this characteristic category, compared to the reference category, independently of other characteristics.ResultsThe patient preference analyses showed that participants preferred treatments with a rapid reduction in viral load (OR=0.78; 95% CI 0.74–0.81) and CD4 count (OR=0.86; 95% CI=0.82–0.89). Participants had a strong preference for avoiding diarrhoea (Odds ratio, OR=0.36 95% CI=0.33–0.38) and long term health problems (OR=0.30, 95% CI=0.28–0.32). Convenience related issues related to restrictions on taking drugs because of food or drug interactions were important to avoid (OR=0.80, 95% CI=0.76–0.83 and OR=0.72 95% CI=0.69–0.76 respectively). Participants also had a strong preference to avoid drugs which limited the effectiveness of future treatments (OR=0.70, 95% CI=0.67–0.73).ConclusionsAvoidance of diarrhoea and long-term complications were the most important drivers of patient choice. This study, from a large sample of European patients, demonstrates the importance to patients when different aspects of HIV treatment are considered simultaneously.