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.

[1]  Y. Shin,et al.  Psychometric Properties of the Korean Family Reported Outcome Measure for Family Members of Patients With Acquired Brain Injury , 2021, The Journal of neuroscience nursing : journal of the American Association of Neuroscience Nurses.

[2]  A. Finlay,et al.  Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature , 2021, Health and Quality of Life Outcomes.

[3]  G. Norman,et al.  The challenges inherent with anchor-based approaches to the interpretation of important change in clinical outcome assessments , 2021, Quality of Life Research.

[4]  A. Finlay,et al.  Validation of the German version of the Family Reported Outcome Measure (FROM-16) to assess the impact of disease on the partner or family member , 2021, Health and Quality of Life Outcomes.

[5]  A. Finlay,et al.  Family Reported Outcome Measure – 16 (FROM-16): Creation, Reliability and Reproducibility of the Polish Language Version , 2020, Acta dermato-venereologica.

[6]  A. Finlay,et al.  DLQI use in skin disease guidelines and registries worldwide. , 2020, Journal of the European Academy of Dermatology and Venereology : JEADV.

[7]  A. Finlay,et al.  Family Reported Outcome Measure , 2020 .

[8]  L. Hurt,et al.  Cohort profile: HealthWise Wales. A research register and population health data platform with linkage to National Health Service data sets in Wales , 2019, BMJ Open.

[9]  S. Salek,et al.  Validation of the Thai version of the family reported outcome measure (FROM-16)© to assess the impact of disease on the partner or family members of patients with cancer , 2019, Health and Quality of Life Outcomes.

[10]  V. Sreenivas,et al.  What do Vitiligo Impact Scale‐22 scores mean? Studying the clinical interpretation of scores using an anchor‐based approach , 2018, The British journal of dermatology.

[11]  Ilker Ünal,et al.  Defining an Optimal Cut-Point Value in ROC Analysis: An Alternative Approach , 2017, Comput. Math. Methods Medicine.

[12]  F. Habibzadeh,et al.  On determining the most appropriate test cut-off value: the case of tests with continuous results , 2016, Biochemia medica.

[13]  S. Riley,et al.  Interpretation of Renal Quality of Life Profile scores in routine clinical practice: an aid to treatment decision-making , 2016, Quality of Life Research.

[14]  E. Simpson,et al.  What the Eczema Area and Severity Index score tells us about the severity of atopic dermatitis: an interpretability study , 2015, The British journal of dermatology.

[15]  A. Finlay,et al.  The development and validation of the Family Reported Outcome Measure (FROM-16)© to assess the impact of disease on the partner or family member , 2014, Quality of Life Research.

[16]  J. Ravenscroft,et al.  Translating Patient-Oriented Eczema Measure (POEM) scores into clinical practice by suggesting severity strata derived using anchor-based methods , 2013, The British journal of dermatology.

[17]  Andrew Yule Finlay,et al.  The impact of patients’ chronic disease on family quality of life: an experience from 26 specialties , 2013, International journal of general medicine.

[18]  Suephy C. Chen,et al.  Clinical meaning in skin-specific quality of life instruments: a comparison of the Dermatology Life Quality Index and Skindex banding systems. , 2012, Dermatologic clinics.

[19]  M. Sprangers,et al.  Health-related quality of life assessment in dermatology: interpretation of Skindex-29 scores using patient-based anchors. , 2010, The Journal of investigative dermatology.

[20]  M. Chren.  Interpretation of quality-of-life scores. , 2010, The Journal of investigative dermatology.

[21]  A. Finlay,et al.  Translating the science of quality of life into practice: What do dermatology life quality index scores mean? , 2005, The Journal of investigative dermatology.

[22]  Ross D Crosby,et al.  Defining clinically meaningful change in health-related quality of life. , 2003, Journal of clinical epidemiology.

[23]  F. Snoek,et al.  Gender Differences in Health-Related Quality of Life Among Asthma Patients , 2003, The Journal of asthma : official journal of the Association for the Care of Asthma.

[24]  Gordon H Guyatt,et al.  Methods to explain the clinical significance of health status measures. , 2002, Mayo Clinic proceedings.

[25]  A. Finlay,et al.  Impaired quality of life of adults with skin disease in primary care , 2000, The British journal of dermatology.

[26]  M. Hyland,et al.  Development of a new type of global quality of life scale, and comparison of performance and preference for 12 global scales , 1996, Quality of Life Research.

[27]  Douglas G. Altman,et al.  Practical statistics for medical research , 1990 .

[28]  Patrick Marquis,et al.  A comprehensive strategy for the interpretation of quality-of-life data based on existing methods. , 2004, Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research.