The impact of patients' chronic disease on family quality of life : an experience from 26 specialties

BACKGROUND: Previous 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. METHODS: Semi-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. RESULTS: Most 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. CONCLUSION: This 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.Peer reviewedFinal Published versio

The impact of disease on family members: a critical aspect of medical care

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 Family Reported Outcome Measure (c): initial validation of a generic QoL measure for family members of patients with chronic medical conditions [Abstract]

Research into measuring family quality of life (QoL) has previously focused on families of patients with one specific disease. In dermatology methods include the Family Dermatology Life Quality Index (FDLQI) and the Psoriasis Family Index (PFI). We previously identified the key QoL themes which impact family members of patients with diverse medical conditions and the aim of this study was to create an outcome measure to assess this impact. Transcripts from 133 interviews with family members of patients from 26 specialties, including dermatology, were coded into themes. Any theme mentioned by >5% of participants was included as an item in the draft instrument. An expert panel of 12 clinicians, 7 nurses, 3 family members and 3 QoL experts provided feedback on the draft questionnaire including four attributes for each item: language clarity, completeness, relevance, and scaling. The expert panel gave positive feedback concerning most questionnaire items. Nine items were re-worded or merged and the response options were renamed to simplify the questionnaire. The panel's ratings of each item on a 4-point scale for the four attributes showed either “strongly agreed” or “agreed” (88%), with an ICC value of 0.98 (CI=0.97–0.99) suggesting a high correlation between the panel members’ responses. A 31-item generic family quality of life instrument, the Family Reported Outcome Measure (FROM)γ was developed. Measuring the impact of illness on family members will enable more complete assessment of the wider burden of disease and of targeted interventions. Further refinement and validation of this new family quality of life measure is underway. 31 items of FROMγ included 23 of the dermatology specific items identified in the generation of the Family Dermatology Life Quality Index. This suggests that the FROMγ will be useful in comparing dermatology data to that of other diseases

The impact of disease on the lives of family members [Abstract]

There is evidence that family members of patients with chronic conditions experience impaired Quality of Life (QoL) themselves and there is a link between the QoL of patients and that of their family members. Family Quality of Life is an area which has been largely overlooked and the majority of previous research has been focused on dermatology, oncology and patients with physical and mental disabilities. To date, no study has been carried out to investigate the impact of disease on family members of patients across a wide range of medical specialties. The aim of the study was to explore the impact of disease on family members of patients across a wide range of specialties. Semi-structured interviews were carried out with family members of patients from 25 different specialties, including dermatology. After obtaining informed consent, family members were invited to talk in detail about different ways that their own lives had been affected by having an unwell relative. Interviews were audio-recorded and transcribed. 117 relatives of patients suffering from over 80 chronic medical and surgical conditions were interviewed. Many of the themes mentioned by relatives were common throughout the study, but the extent of the impact was often much greater than reported previously. This was especially evident in the area of emotional impact, where family members talked about the difficulties of hiding their emotions in order to provide support for the patient. Important themes mentioned were problems with time planning and organisation, financial impact, family relationships, effect on sleep and the health of the family member, and the great impact on the social life, hobbies and daily activities of the family. Many of the relatives also said that they had never been given the chance to talk about these topics before. The impact of disease on family members of patients is widespread and profound. Consideration of this aspect of QoL will potentially allow for more appropriate care of patients and their families

Adolescents with skin disease have specific Quality of Life issues

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

The development and validation of the Family Reported Outcome Measure (FROM-16)© to assess the impact of disease on the partner or family member

Purpose: The impact of patients’ illness on family members has proven to be both widespread and severe. Currently, there is no generic instrument that can be used to measure the impact of illnesses on the partner or family members of patients. This study describes the development of the Family Reported Outcome Measure (FROM-16)©. Methods: A total of 30 items were generated from the content of previous interviews with family members. Qualitative and quantitative feedback from expert panels was collected. Items were reduced using both Rasch analysis and factor analysis, and full psychometric testing was carried out including construct validity and reliability. Results: Collapsing response categories, removing misfitting items and combining residually correlating items produced a good fit to the Rasch model (n = 240, total χ 2 = 56.6, df = 48, p = 0.18). Factor analysis produced a 16-item measure with two factors. The FROM showed high internal consistency (n = 120, Cronbach’s α = 0.80–0.89), high reproducibility (n = 51, intraclass correlation = 0.85–0.92) and a mean completion time of 2 min. Construct validity was proven through the correlation between the FROM and the WHOQOL-BREF total scores (n = 119, r = −0.53–0.52, p < 0.001), and the correlation between the FROM and the patient’s overall health score (n = 120, r = −0.45–0.48, p < 0.001). Conclusion: 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

Measuring skin disease in adolescence: bridging the gap in quality of life assessment [Abstract]

Adolescence is a unique period of life and teenagers have specific quality of life (QoL) issues that may be different in a number of ways from adults or children. There is a paucity of literature focusing on the impact of skin disease on this particular age group. The aim of this study was to develop and validate a dermatology specific quality of life instrument for adolescents with skin diseases. Semi-structured interviews were conducted with a cohort of 50 adolescents aged 12–19 years recruited from the dermatology out-patient clinic. Interviews were then transcribed verbatim using a standardised technique which resulted in the first version of T-QoL. Content validity was carried out using a pilot study of 20 adolescents and led to a revised second version of T-QoL. This was followed by psychometric evaluation conducted on 153 adolescents including the application of Rasch analysis using RUMM 2030 software to assess the overall fit of the model, the item responses, individual item fit and differential item functioning (DIF). The final validation of the Rasch refined (3rd) version was carried out on a new cohort of adolescents using Classical Test Theory. A total of 33 aspects of adolescents’ QoL were identified from qualitative interviews, leading to a 32-item first version of the T-QoL. 20 adolescents completed the T-QoL and provided feedback on its clarity, focus, relevance, practicality and applicability. Changes were made accordingly resulting in 30-item T-QoL which was then completed by 153 adolescents (M=70, F=83; mean age 16.5, range 13–19). Rasch analysis of the whole scale did not support the validity of the T-QoL as a unidimensional measure of QoL impairment. A factor analysis confirmed the presence of three domains within the scale. Each of the domains was then subjected to Rasch analysis individually. Separately all domains showed adequate fit to the model, good person separation, good internal consistency and no significant differential item bias for gender or age. The final psychometric evaluation of the final (3rd) 18-item version showed promising results. Although there are QoL measures for adults (e.g. DLQI) and children (e.g. CDLQI) with skin conditions it is necessary that a suitable age-specific measure was also available for adolescents, as there are evident differences in the QoL issues faced by adolescents compared to those of adults and children. The results of our study have demonstrated that T-QoL could provide a simple, relevant and valid tool to quantify the impact of ski