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

IF 2.5 Q2 CLINICAL NEUROLOGY

Multiple Sclerosis Journal - Experimental, Translational and Clinical Pub Date : 2025-05-27 eCollection Date: 2025-04-01 DOI:10.1177/20552173251338762

Rubina Shah, Sam Salek, Faraz M Ali, Kennedy Otwombe, Stuart J Nixon, Marie-Elaine Nixon, Gillian Ingram, John R Ingram, Andrew Y Finlay

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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.

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多发性硬化症对家庭成员/伴侣的影响很大：使用家庭报告结果测量（FROM-16）的证据。

背景：多发性硬化症（MS）可能对多发性硬化症（pwMS）患者及其家庭成员/伴侣的身体、社会和心理健康产生重大影响。目的：测量一个人的多发性硬化症对其家庭成员/伴侣的生活质量的影响，以及家庭成员之间的影响，使用一种经过验证的通用家庭特定生活质量工具，家庭报告结果测量（from16）。方法：通过英国患者支持小组进行一项在线横断面研究，招募pwMS的家庭成员/伴侣。结果：共219名家庭成员/伴侣(平均年龄49.3岁，SD = 13.7；女性= 55.3%)的pwm(平均年龄= 50.1,SD = 12.5;女性= 56.6%)完成了FROM-16。FROM-16的平均总分为16.9 (SD = 7.8)，表明对家庭成员的生活质量有“非常大的影响”。年龄增加、男性多发性硬化症患者和女性照顾者是家庭影响的显著预测因子。50.7%的家庭成员的form -16评分≥17分。与其他关系相比，患有多发性硬化症的配偶/伴侣（170/219）对他们的性生活有显著影响(p结论：多发性硬化症对家庭成员/伴侣的生活质量有显著影响，表明有必要定期评估这种影响。form -16可以用来衡量多发性硬化症家庭在日常实践中的影响，以适当地支持家庭成员，并将这种影响纳入健康经济评估和治疗性临床试验。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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