Rubina Shah, MSc MPH;1 Andrew Finlay, FRCP;1 and Sam Salek, PhD RPh FFPM FRPS2

1 Cardiff University, School of Medicine
2 School of Life & Medical Sciences, University of Hertfordshire

The impact of disease on the quality of life of patients’ partners and family members remains largely ignored. A vast burden of disease is therefore unaccounted for, and those affected are often poorly served by health professionals. Although Quality of Life (QOL) scientists have focused on the impact of disease on patients, it is important that their focus should broaden to explore the hidden wider impact of disease on those who live with and care for the patients.

Realising the importance of developing a holistic understanding of the impact of disease, researchers at Cardiff University created the ‘Family Reported Outcome Measure’ (FROM-16) tool which measures the QOL impact on partners and family members of patients. The researchers’ interest in family QOL is driven by their earlier work on understanding how parents’ lives are impacted by having a child with atopic dermatitis. This later led to the development of the Family Dermatology Life Quality Index (FDLQI), a generic dermatology measure. However, it became clear to them that the impact of disease on family QOL is a problem across the whole of medicine, resulting in their development of FROM-16.

The key measurement properties of FROM-16 have already been demonstrated, including through its validation in Germany, Poland, Thailand and Korea. However, it was vital to show that FROM-16 is responsive to change over time if it is to be used in clinical monitoring or assessment of intervention. A follow-up study of patients who had started effective therapy, and of their family members, has demonstrated the responsiveness of FROM-16, both to changes in patient QOL and to changes in disease severity. This unique attribute of FROM-16, as well as its other measurement properties underpinned by its robust development, make it useful in both research and practice. While there are other family QOL tools, only a few have been tested for responsiveness. Without this confirmation, other family QOL measures are unable to be used in clinical monitoring of family members or in assessing the impact of new treatment on family members.

Commercial and academic research into understanding QOL has naturally been focused primarily on the impact on patients. As this still young science matures, it is now time for its broader aspects to be considered and embraced. Now is the time to realize the importance of the concept of Family Reported Outcomes (FROs) in assessing the impact of disease on partners and family members of patients. Perhaps ISOQOL should consider encouraging research practices that use FROs alongside PROs, hence fostering holistic QOL focused research.

The confirmation of the responsiveness of FROM-16 will allow clinicians and researchers to judge the effectiveness of interventions that may influence family member’s QOL. Future research should focus on the appropriateness of the use of FROM-16 in clinical trials, in assessing the impact of health services, of new drugs or of psychosocial interventions on family members.

Abstract will be presented in Thursday Poster Session I on Thursday, 19 October, 10:05 am – 10:45 am. 

This newsletter editorial represents the views of the author and does not necessarily reflect the views of ISOQOL. 

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The International Society for Quality of Life Research (ISOQOL) is a global community of researchers, clinicians, health care professionals, industry professionals, consultants, and patient research partners advancing health related quality of life research (HRQL).

Together, we are creating a future in which patient perspective is integral to health research, care and policy.