Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature

Abstract

Background A person’s chronic health condition or disability can have a huge impact on the quality of life (QoL) of the whole family, but this important impact is often ignored. This literature review aims to understand the impact of patients' disease on family members across all medical specialities, and appraise existing generic and disease-specific family quality of life (QoL) measures. Methods The databases Medline, EMBASE, CINHAL, ASSIA, PsycINFO and Scopus were searched for original articles in English measuring the impact of health conditions on patients' family members/partner using a valid instrument. Results Of 114 articles screened, 86 met the inclusion criteria. They explored the impact of a relative's disease on 14,661 family members, mostly 'parents' or 'mothers', using 50 different instruments across 18 specialities including neurology, oncology and dermatology, in 33 countries including the USA, China and Australia. These studies revealed a huge impact of patients' illness on family members. An appraisal of family QoL instruments identified 48 instruments, 42 disease/speciality specific and six generic measures. Five of the six generics are aimed at carers of children, people with disability or restricted to chronic disease. The only generic instrument that measures the impact of any condition on family members across all specialities is the Family Reported Outcome Measure (FROM-16). Although most instruments demonstrated good reliability and validity, only 11 reported responsiveness and only one reported the minimal clinically important difference. Conclusions Family members' QoL is greatly impacted by a relative's condition. To support family members, there is a need for a generic tool that offers flexibility and brevity for use in clinical settings across all areas of medicine. FROM-16 could be the tool of choice, provided its robustness is demonstrated with further validation of its psychometric properties.

Effects of Disability Severity on the Family Burden of Home-Dwelling Uygur and Kazakh Aged in Rural Western China: Family Function as a Mediator

“…The study also confirmed that disability is a personal event and a family event (Shah et al, 2021) and revealed a negative correlation between DS and FF, which is consistent with the relationship found in the study of poststroke patients (Yang et al, 2021). In the present study, 52.5% of families are lineal families whose adult males usually work outside and act as the core family members.…”

Meaning of Family Reported Outcome Measure (FROM-16) severity score bands: a cross-sectional online study in the UK

“…Several instruments have been developed to assess the impact of a person's health condition/ disability on family members/partners to understand this secondary and often unrecognised burden of disease. 19 Although the reliability and validity of several FQoL instruments have been established, they are not yet accepted in clinical practice. The assessment of the meaning of scores of an instrument and the practicality of its use in a clinical setting are more important than just Open access meeting conventional psychometric requirements.…”

Correction to: Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature

“…The original article [ 1 ] contained several typos which were mistakenly incorporated by the production team that handled this article.…”