OBJECTIVES: Illness can have a major impact on the quality of life (QoL) of a patient’s family members: but this is often unrecognized or underestimated. This literature review aims to understand the impact of disease on family members of patients, across all medical specialities, and to appraise existing generic and disease-specific family QoL measures.

METHODS: The electronic 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 validated QoL questionnaire.

RESULTS: Of 114 articles identified, 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, dermatology and cardiology in 29 countries including USA, Canada, China and Australia. These studies revealed a huge impact of patients' illness on family members.

Forty-two family QoL instruments were identified, 36 disease-specific and 6 generic. Five of the six generics are aimed at specific populations of carers (children, people with disability). The only generic instrument that measures the impact of any chronic condition on family members across all specialities is the Family Reported Outcome Measure (FROM-16). Although most instruments demonstrated good internal consistency, reliability and construct validity, only eleven reported responsiveness and only one reported the minimal clinically important difference (MCID).

CONCLUSIONS: Family members’ QoL is greatly impacted by a relative’s condition, but for many specialties in medicine there is little or no quantitative data concerning this. Although there is a need for further validation of the psychometric properties of FROM-16, such a generic tool could be used to meet this need and to allow comparisons across specialities. A generic measure could also be used routinely clinically to identify vulnerable family members and trigger provision of support.