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The conceptualisation, development and validation of a generic health-related family quality of life measure

Golics, Catherine 2013. The conceptualisation, development and validation of a generic health-related family quality of life measure. PhD Thesis, Cardiff University.
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Chronic conditions have an impact on the quality of life (QoL) of families as well as patients themselves, and the two are often linked; the greater the effect on the patient, the more the QoL of the family members is reduced. Research into family QoL exists in several medical specialties, but studies have usually been focused on carers or families of patients with one specific disease. 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)©. The aims of this study were to investigate the impact of disease on family members of patients over a wide range of specialties, identify key impact areas and develop a generic family quality of life measure. Semi-structured interviews were carried out with 133 family members of patients from 26 medical specialties. Family members were invited to discuss all the areas of their lives that had been affected by having an unwell relative. Thematic analysis was carried out using NVivo9© software. A preliminary 31-item measure was developed from the content of the interviews with family members. Content validity was assessed using qualitative and quantitative data from expert panels involving clinicians and family members. A separate cohort of 240 family members was recruited for both Rasch analysis and factor analysis to reduce items. A further 120 family members completed the final version of the FROM-16 for full psychometric testing including construct validity and reliability. Most family members interviewed were female (61%), the partner or spouse of the patient (56%) or the parent (22%). The mean age was 56.1 years (range= 21-85) and the mean duration of the patient’s disease was 8.9 years (range= one month to 60 years). 10 key themes of family quality of life were identified from interviews. The median number of themes reported by family members was 6 (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%), support and medical care (61%), work and study (52%), financial impact (51%), social life (37%), and time planning (14%). Relationships between the themes were identified. A 31-item generic family quality of life instrument, the Family Reported Outcome Measure (FROM)©, with a 5-point Likert response scale was developed. The content validity 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 agreement between the panel members' responses. Collapsing response categories, removing misfitting items and combining items with residual correlations produced a good fit to the Rasch model (n=240, Total χ2 = 56.6, df = 48, p = III 0.18). Factor analysis produced a 16-item measure with two factors. The FROM showed high internal consistency (n=120, Cronbach’s α= 0.91), high reproducibility (n=51, ICC=0.93) and a mean completion time of two minutes. Construct validity was proven through the correlation between the FROM and the WHOQOL-BREF total scores (n=119, r=-0.55, p<0.001), and the correlation between the FROM and the patient’s overall health score (n=120, r=-0.51, p<0.001). This large scale multi-specialty study has demonstrated the great, yet similar impact that illness can have on the quality of life of family members of patients. Family quality of life is a previously neglected area of healthcare which needs to be addressed in order to provide better support for the patient and for the family unit. The FROM is both reliable and valid for use in family members of patients. It has a potential for wide use, including clinical (all medical specialties), industrial and social sciences.

Item Type: Thesis (PhD)
Status: Unpublished
Schools: Pharmacy
Subjects: Q Science > Q Science (General)
R Medicine > R Medicine (General)
Uncontrolled Keywords: Health-related ; Family ; Quality of Life ; Analysis
Date of First Compliant Deposit: 30 March 2016
Last Modified: 19 Mar 2016 23:20

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