{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,21]],"date-time":"2026-10-21T19:57:12Z","timestamp":1792612632895,"version":"4.5.0"},"reference-count":29,"publisher":"BMJ","issue":"3","license":[{"start":{"date-parts":[[2023,3,23]],"date-time":"2023-03-23T00:00:00Z","timestamp":1679529600000},"content-version":"unspecified","delay-in-days":22,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2023,2,2]]},"published-print":{"date-parts":[[2023,3]]},"abstract":"<jats:sec>\n                  <jats:title>Objective<\/jats:title>\n                  <jats:p>To assign clinical meanings to the Family Reported Outcome Measure (FROM-16) scores through the development of score bands using the anchor-based approach.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Design and setting<\/jats:title>\n                  <jats:p>A cross-sectional online study recruited participants through UK-based patient support groups, research support platforms (HealthWise Wales, Autism Research Centre-Cambridge University database, Join Dementia Research) and through social service departments in Wales.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Participants<\/jats:title>\n                  <jats:p>Family members\/partners (aged \u226518 years) of patients with different health conditions.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Intervention<\/jats:title>\n                  <jats:p>Family members\/partners of patients completed the FROM-16 questionnaire and a Global Question (GQ).<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Main outcome measure<\/jats:title>\n                  <jats:p>Various FROM-16 band sets were devised as a result of mapping of mean, median and mode of the GQ scores to FROM-16 total score, and receiver operating characteristic-area under the curve cut-off values. The band set with the best agreement with GQ based on weighted kappa was selected.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>A total of 4413 family members\/partners (male=1533, 34.7%; female=2858, 64.8%; Prefer not to say=16, 0.4%; other=6, 0.14%) of people with a health condition (male=1994, 45.2%; female=2400, 54.4%; Prefer not to say=12, 0.3%; other=7, 0.16%) completed the online survey: mean FROM-16 score=15.02 (range 0\u201332, SD=8.08), mean GQ score=2.32 (range 0\u20134, SD=1.08). The proposed FROM-16 score bandings are: 0\u20131=no effect on the quality of life of family member; 2\u20138=small effect on family member; 9\u201316=moderate effect on family member; 17\u201325=very large effect on family member; 26\u201332=extremely large effect on family member (weighted kappa=0.60).<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusion<\/jats:title>\n                  <jats:p>The FROM-16 score descriptor bands provide new information to clinicians about interpreting scores and score changes, allowing better-informed treatment decisions for patients and their families. The score banding of FROM-16, along with a short administration time, demonstrates its potential to support holistic clinical practice.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1136\/bmjopen-2022-066168","type":"journal-article","created":{"date-parts":[[2023,3,23]],"date-time":"2023-03-23T11:35:10Z","timestamp":1679571310000},"page":"e066168","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":18,"title":["Meaning of Family Reported Outcome Measure (FROM-16) severity score bands: a cross-sectional online study in the UK"],"prefix":"10.1136","volume":"13","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8158-712X","authenticated-orcid":false,"given":"Rubina","family":"Shah","sequence":"first","affiliation":[{"name":"Division of Infection and Immunity, Cardiff University, School of Medicine, Cardiff, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2143-1646","authenticated-orcid":false,"given":"Andrew Y","family":"Finlay","sequence":"additional","affiliation":[{"name":"Division of Infection and Immunity, Cardiff University, School of Medicine, Cardiff, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4612-5699","authenticated-orcid":false,"given":"Sam M","family":"Salek","sequence":"additional","affiliation":[{"name":"School of Life & Medical Sciences, University of Hertfordshire, Hatfield, UK"},{"name":"Institute of Medicines Development, Cardiff, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stuart J","family":"Nixon","sequence":"additional","affiliation":[{"name":"Multiple Sclerosis Society, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7433-4383","authenticated-orcid":false,"given":"Kennedy","family":"Otwombe","sequence":"additional","affiliation":[{"name":"Statistics and Data Management Centre, Perinatal HIV Research Unit, Chris Hani Baragwanath Academic Hospital, University of the Witwatersrand, Johannesburg, South Africa"},{"name":"6School of Public Health, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4184-2023","authenticated-orcid":false,"given":"Faraz M","family":"Ali","sequence":"additional","affiliation":[{"name":"Division of Infection and Immunity, Cardiff University, School of Medicine, Cardiff, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5257-1142","authenticated-orcid":false,"given":"John R","family":"Ingram","sequence":"additional","affiliation":[{"name":"Division of Infection and Immunity, Cardiff University, School of Medicine, Cardiff, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2023,3,23]]},"reference":[{"key":"2025101812064517000_13.3.e066168.1","doi-asserted-by":"crossref","first-page":"787","DOI":"10.2147\/IJGM.S45156","article-title":"The impact of patients\u2019 chronic disease on family quality of life: an experience from 26 specialties","volume":"6","author":"Golics","year":"2013","journal-title":"Int J Gen Med"},{"key":"2025101812064517000_13.3.e066168.2","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-013-0457-y"},{"key":"2025101812064517000_13.3.e066168.3","unstructured":"FROM-16 . 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