Meaning of Family Reported Outcome Measure (FROM-16) severity score bands: a cross-sectional online study in the UK

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

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Objective: 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.
Original languageEnglish
Article numbere066168
Pages (from-to)1-11
Number of pages11
JournalBMJ Open
Issue number3
Early online date23 Mar 2023
Publication statusPublished - 23 Mar 2023


  • Health services research
  • 1506
  • 1704
  • Quality in health care
  • Cross-Sectional Studies
  • Humans
  • Wales
  • Male
  • Adolescent
  • Quality of Life
  • Adult
  • Family
  • Female
  • Patient Reported Outcome Measures


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