The development and validation of the Family Reported Outcome Measure (FROM-16)© to assess the impact of disease on the partner or family member
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The impact of patients’ illness on family members has proven to be both widespread and severe. Currently, there is no generic instrument that can be used to measure the impact of illnesses on the partner or family members of patients. This study describes the development of the Family Reported Outcome Measure (FROM-16)©.
A total of 30 items were generated from the content of previous interviews with family members. Qualitative and quantitative feedback from expert panels was collected. Items were reduced using both Rasch analysis and factor analysis, and full psychometric testing was carried out including construct validity and reliability.
Collapsing response categories, removing misfitting items and combining residually correlating items produced a good fit to the Rasch model (n = 240, total χ 2 = 56.6, df = 48, p = 0.18). Factor analysis produced a 16-item measure with two factors. The FROM showed high internal consistency (n = 120, Cronbach’s α = 0.80–0.89), high reproducibility (n = 51, intraclass correlation = 0.85–0.92) and a mean completion time of 2 min. Construct validity was proven through the correlation between the FROM and the WHOQOL-BREF total scores (n = 119, r = −0.53–0.52, p < 0.001), and the correlation between the FROM and the patient’s overall health score (n = 120, r = −0.45–0.48, p < 0.001).
The FROM-16 is both reliable and valid for use. It has a potential for wide use, including clinical (healthcare professionals or researchers in all medical specialties), industrial and social sciences. The FROM can be used to identify areas where family members need further support, as well as identify those individuals most affected by the patient’s illness.
KeywordsFamily Partner Secondary impact of disease Measurement Quality of life FROM-16
We wish to thank the patients and their family members whose participation allowed this research to be carried out. We also wish to thank Mr Mike Horton for his statistical advice. We wish to thank the clinicians who participated in this study: Dr Shakeel Ahmad, Dr Maria Atkins, Professor Angus Clarke, Dr Annabel Borley, Dr Gwilym Bowen, Dr Adeline Cutinha, Mrs Wendy Davies, Dr Andrew Freedman, Dr Lindsay George, Dr John Green, Professor John Gregory, Professor Julian Halcox, Dr Ben Hope-Gill, Dr Sharon Jones, Mr Hrishi Joshi, Dr Manju Kalavala, Dr Sharmila Khot, Professor Malcolm Mason, Mr Philip Matthews, Dr Richard Moore, Professor James Morgan, Ms Elizabeth Mudge, Mr Declan O’Doherty, Professor Neil Robertson, Dr Clare Rowntree, Dr Caroline Scherf, Professor Jonathan Shepherd, Dr Victor Sim, Dr John Staffurth, Mr Alun Tomkinson, Mr Jared Torkington, Dr Amanda Tristram.
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