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

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.

Automated summary

This study assigns clinical meanings to Family Reported Outcome Measure (FROM-16) scores by developing score bands through an anchor-based approach. The study recruited participants through various sources and devised different score bands based on the Global Question scores. The proposed score bands provide new information for clinicians and support holistic clinical practice. Rating: 8/10