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dc.contributor.authorShah, Rubina
dc.contributor.authorFinlay, Andrew Y
dc.contributor.authorSalek, Sam M
dc.contributor.authorNixon, Stuart J
dc.contributor.authorOtwombe, Kennedy
dc.contributor.authorAli, Faraz M
dc.contributor.authorIngram, John R
dc.date.accessioned2023-04-03T14:30:09Z
dc.date.available2023-04-03T14:30:09Z
dc.date.issued2023-03-23
dc.identifier.citationShah , R , Finlay , A Y , Salek , S M , Nixon , S J , Otwombe , K , Ali , F M & Ingram , J R 2023 , ' Meaning of Family Reported Outcome Measure (FROM-16) severity score bands: a cross-sectional online study in the UK ' , BMJ Open , vol. 13 , no. 3 , e066168 , pp. 1-11 . https://doi.org/10.1136/bmjopen-2022-066168
dc.identifier.issn2044-6055
dc.identifier.otherPURE: 38859322
dc.identifier.otherPURE UUID: 6c0d999f-c8a2-411c-adcb-5496d9913825
dc.identifier.otherJisc: 989683
dc.identifier.otherpublisher-id: bmjopen-2022-066168
dc.identifier.otherScopus: 85150890125
dc.identifier.otherPubMed: 36958787
dc.identifier.urihttp://hdl.handle.net/2299/26149
dc.description© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. http://creativecommons.org/licenses/by-nc/4.0/
dc.description.abstractObjective: To assign clinical meanings to the Family Reported Outcome Measure (FROM-16) scores through the development of score bands using the anchor-based approach. Design and setting: 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. Participants: Family members/partners (aged ≥18 years) of patients with different health conditions. Intervention: Family members/partners of patients completed the FROM-16 questionnaire and a Global Question (GQ). Main outcome measure: 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. Results: 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 0–32, SD=8.08), mean GQ score=2.32 (range 0–4, SD=1.08). The proposed FROM-16 score bandings are: 0–1=no effect on the quality of life of family member; 2–8=small effect on family member; 9–16=moderate effect on family member; 17–25=very large effect on family member; 26–32=extremely large effect on family member (weighted kappa=0.60). Conclusion: 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.en
dc.format.extent11
dc.language.isoeng
dc.relation.ispartofBMJ Open
dc.subjectHealth services research
dc.subject1506
dc.subject1704
dc.subjectQuality in health care
dc.subjectHEALTH SERVICES ADMINISTRATION & MANAGEMENT
dc.subjectQUALITATIVE RESEARCH
dc.subjectSTATISTICS & RESEARCH METHODS
dc.subjectCross-Sectional Studies
dc.subjectHumans
dc.subjectWales
dc.subjectMale
dc.subjectAdolescent
dc.subjectQuality of Life
dc.subjectAdult
dc.subjectFamily
dc.subjectFemale
dc.subjectPatient Reported Outcome Measures
dc.subjectMedicine(all)
dc.titleMeaning of Family Reported Outcome Measure (FROM-16) severity score bands: a cross-sectional online study in the UKen
dc.contributor.institutionSchool of Life and Medical Sciences
dc.description.statusPeer reviewed
dc.identifier.urlhttp://www.scopus.com/inward/record.url?scp=85150890125&partnerID=8YFLogxK
rioxxterms.versionVoR
rioxxterms.versionofrecordhttps://doi.org/10.1136/bmjopen-2022-066168
rioxxterms.typeJournal Article/Review
herts.preservation.rarelyaccessedtrue


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