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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, Volume: 34, Issue: 4, Pages: 949 - 962

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

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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...

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Published in: Quality of Life Research
ISSN: 0962-9343 1573-2649
Published: Springer Science and Business Media LLC 2025
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URI: https://cronfa.swan.ac.uk/Record/cronfa68517
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Societal outcomes can include family-reported outcome measures (FROMs), which measure the impact of disease upon the patient&#x2019;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&#x2009;=&#x2009;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&#x2019;s alpha&#x2009;=&#x2009;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. 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spelling 2025-04-16T13:54:28.0869711 v2 68517 2024-12-10 Validation of the FROM-16 in family members of patients receiving advanced therapy medicinal product (ATMP) f73e5d79a2915bfec31c4525053fb0ca Charlie Brilliant Charlie Brilliant true false a14bd1b9041528e38772df1b50a59e3b 0000-0001-9933-3902 Emily Bacon Emily Bacon true false be60df55bc8e44cf2aacf7230876588d 0000-0002-5661-7937 Hamish Laing Hamish Laing true false 2024-12-10 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. Journal Article Quality of Life Research 34 4 949 962 Springer Science and Business Media LLC 0962-9343 1573-2649 FROM-16; Advanced Therapy Medicinal products; Quality of life 1 4 2025 2025-04-01 10.1007/s11136-024-03880-0 COLLEGE NANME COLLEGE CODE Swansea University SU Library paid the OA fee (TA Institutional Deal) Funding from Midlands-Wales Advanced Therapy Treatment Centre (MW-ATTC) which is hosted by Welsh Blood Service. The MW-ATTC is Innovate UK funded. 2025-04-16T13:54:28.0869711 2024-12-10T12:11:09.5911956 Faculty of Humanities and Social Sciences School of Management - Business Management Charlie Brilliant 1 Andrew Y. Finlay 2 Sam M. Salek 3 Rubina Shah 4 Emily Bacon 0000-0001-9933-3902 5 Hamish Laing 0000-0002-5661-7937 6 68517__33431__9a5c4c111de4434e878f8b2b4e06a2db.pdf 68517.VoR.pdf 2025-01-29T11:25:39.8130394 Output 2007888 application/pdf Version of Record true © The Author(s) 2024. This article is licensed under a Creative Commons Attribution 4.0 International License. true eng http://creativecommons.org/licenses/by/4.0/
title Validation of the FROM-16 in family members of patients receiving advanced therapy medicinal product (ATMP)
spellingShingle Validation of the FROM-16 in family members of patients receiving advanced therapy medicinal product (ATMP)
Charlie Brilliant
Emily Bacon
Hamish Laing
title_short Validation of the FROM-16 in family members of patients receiving advanced therapy medicinal product (ATMP)
title_full Validation of the FROM-16 in family members of patients receiving advanced therapy medicinal product (ATMP)
title_fullStr Validation of the FROM-16 in family members of patients receiving advanced therapy medicinal product (ATMP)
title_full_unstemmed Validation of the FROM-16 in family members of patients receiving advanced therapy medicinal product (ATMP)
title_sort Validation of the FROM-16 in family members of patients receiving advanced therapy medicinal product (ATMP)
author_id_str_mv f73e5d79a2915bfec31c4525053fb0ca
a14bd1b9041528e38772df1b50a59e3b
be60df55bc8e44cf2aacf7230876588d
author_id_fullname_str_mv f73e5d79a2915bfec31c4525053fb0ca_***_Charlie Brilliant
a14bd1b9041528e38772df1b50a59e3b_***_Emily Bacon
be60df55bc8e44cf2aacf7230876588d_***_Hamish Laing
author Charlie Brilliant
Emily Bacon
Hamish Laing
author2 Charlie Brilliant
Andrew Y. Finlay
Sam M. Salek
Rubina Shah
Emily Bacon
Hamish Laing
format Journal article
container_title Quality of Life Research
container_volume 34
container_issue 4
container_start_page 949
publishDate 2025
institution Swansea University
issn 0962-9343
1573-2649
doi_str_mv 10.1007/s11136-024-03880-0
publisher Springer Science and Business Media LLC
college_str Faculty of Humanities and Social Sciences
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hierarchy_top_id facultyofhumanitiesandsocialsciences
hierarchy_top_title Faculty of Humanities and Social Sciences
hierarchy_parent_id facultyofhumanitiesandsocialsciences
hierarchy_parent_title Faculty of Humanities and Social Sciences
department_str School of Management - Business Management{{{_:::_}}}Faculty of Humanities and Social Sciences{{{_:::_}}}School of Management - Business Management
document_store_str 1
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description 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.
published_date 2025-04-01T05:31:45Z
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