Multiple sclerosis greatly impacts family members/partners: Evidence using the Family Reported Outcome Measure (FROM-16)

Shah, Rubina, Salek, Sam, Ali, Faraz M., Otwombe, Kennedy, Nixon, Stuart J., Nixon, Marie-Elaine, Ingram, Gillian, Ingram, John R. ORCID: https://orcid.org/0000-0002-5257-1142 and Finlay, Andrew Y. ORCID: https://orcid.org/0000-0003-2143-1646 2025. Multiple sclerosis greatly impacts family members/partners: Evidence using the Family Reported Outcome Measure (FROM-16). Multiple Sclerosis Journal - Experimental, Translational and Clinical 11 (2) , 20552173251338762. 10.1177/20552173251338762

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Abstract

Background: Multiple sclerosis (MS) may have a major impact on the physical, social and psychological wellbeing of people with multiple sclerosis (pwMS) and their family members/partners. Aim: To measure the impact of a person's MS on the quality of life of their family members/partner, and the associates of impact among family members, using a validated generic family-specific quality of life instrument, the Family Reported Outcome Measure (FROM-16). Methods: An online cross-sectional study was conducted to recruit family members/partners of pwMS through UK patient support groups. Results: A total of 219 family members/partners (mean age = 49.3 years, SD = 13.7; females = 55.3%) of pwMS (mean age = 50.1, SD = 12.5; females = 56.6%) completed the FROM-16. The FROM-16 mean total score was 16.9 (SD = 7.8), indicating ‘a very large effect’ on family members’ quality of life. The increasing age of pwMS, being a male person with MS, and being a female carer were significant predictors of family impact. 50.7% of family members had FROM-16 scores ≥17. Spouses/partners (170/219) of pwMS reported a significant impact on their sex life compared to other relationships (p < 0.001). Conclusion: MS substantially impacts the quality of life of family members/partners of pwMS, indicating a need to assess this impact routinely. The FROM-16 could be used to measure the MS family impact in routine practice to support family members appropriately and to include this impact in health economic appraisal and therapeutic clinical trials.

Item Type:	Article
Date Type:	Published Online
Status:	In Press
Schools:	Schools > Medicine
Additional Information:	License information from Publisher: LICENSE 1: URL: https://creativecommons.org/licenses/by/4.0/, Start Date: 2025-05-27
Publisher:	SAGE Publications
Date of First Compliant Deposit:	9 June 2025
Date of Acceptance:	11 April 2025
Last Modified:	09 Jun 2025 13:45
URI:	https://orca.cardiff.ac.uk/id/eprint/178922

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