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Validation of the FROM-16 in family members of patients receiving advanced therapy medicinal product (ATMP)

Charlie Brilliant, Andrew Y. Finlay, Sam M. Salek, Rubina Shah, Emily Bacon Orcid Logo, Hamish Laing Orcid Logo

Quality of Life Research

Swansea University Authors: Charlie Brilliant, Emily Bacon Orcid Logo, Hamish Laing Orcid Logo

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Abstract

PurposeOutcome-based pricing models which consider domains of value not previously considered in healthcare, such as societal outcomes, are of increasing interest for healthcare systems. Societal outcomes can include family-reported outcome measures (FROMs), which measure the impact of disease upon...

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Published in: Quality of Life Research
ISSN: 0962-9343 1573-2649
Published: Springer Science and Business Media LLC 2025
Online Access: Check full text

URI: https://cronfa.swan.ac.uk/Record/cronfa68517
Abstract: PurposeOutcome-based pricing models which consider domains of value not previously considered in healthcare, such as societal outcomes, are of increasing interest for healthcare systems. Societal outcomes can include family-reported outcome measures (FROMs), which measure the impact of disease upon the patient’s family members. The FROM-16 is a generic and easy-to-use family quality of life tool, but it has never been used in the context of patients undergoing advanced therapy medicinal product (ATMP) treatment. The use of potentially curative ATMPs is limited due their high cost and the low number of eligible patients. Using the FROM-16 to collect the impact on family of disease and treatment in ATMP patients may demonstrate additional value created by an ATMP intervention and strengthen the case for its use.MethodsThis feasibility study aimed to test the validity of the FROM-16 in family members of ATMP patients as a prelude for its use in ATMP value estimation. Patients and family members (n = 24) were recruited from ATMP treatment centres in England and Wales. Family members completed the FROM-16 and were invited to a short debriefing interview.ResultsThe FROM-16 showed high validity demonstrated by strong internal consistency (Cronbach’s alpha = 0.917) and intraclass correlation (0.803, 95%). Interviews identified that whilst the FROM-16 covered most areas of quality-of-life impact experienced by the participants, some explained that they also experienced other impacts upon their personal health and future outlook.ConclusionThis feasibility study provides evidence that the FROM-16 could be used as part of a structured systematic approach to measure family quality of life impact in ATMP patients.
Keywords: FROM-16; Advanced Therapy Medicinal products; Quality of life
College: Faculty of Humanities and Social Sciences
Funders: Welsh Blood Service