Journal article 119 views 20 downloads
Validation of the FROM-16 in family members of patients receiving advanced therapy medicinal product (ATMP)
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Hamish Laing
Quality of Life Research
Swansea University Authors:
Charlie Brilliant, Emily Bacon , Hamish Laing
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© The Author(s) 2024. This article is licensed under a Creative Commons Attribution 4.0 International License.
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DOI (Published version): 10.1007/s11136-024-03880-0
Abstract
Purpose: Outcome-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 upo...
| Published in: | Quality of Life Research |
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| ISSN: | 0962-9343 1573-2649 |
| Published: |
Springer Science and Business Media LLC
2025
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| Online Access: |
Check full text
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| URI: | https://cronfa.swan.ac.uk/Record/cronfa68517 |
| Abstract: |
Purpose: Outcome-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. Methods: This 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. Results: The 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. Conclusion: This 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. |
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| Keywords: |
FROM-16; Advanced Therapy Medicinal products; Quality of life |
| College: |
Faculty of Humanities and Social Sciences |
| Funders: |
Funding from Midlands-Wales Advanced Therapy Treatment Centre (MW-ATTC) which is hosted by Welsh Blood Service. The MW-ATTC is Innovate UK funded. |