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Establishment of the measurement properties and clinical interpretation of the Family Reported Outcome Measure (FROM-16)

Shah, Rubina 2023. Establishment of the measurement properties and clinical interpretation of the Family Reported Outcome Measure (FROM-16). PhD Thesis, Cardiff University.
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Chronic diseases impact the quality of life (QoL) of family members as well as patients. The Family Reported Outcome Measure (FROM-16) could be used to measure this family impact. This PhD study aims to validate FROM-16, transforming it into a robust clinical and research tool, that can also inform health economic appraisal of medical interventions. Descriptive score bandings give meaning to QoL assessment, allowing clinicians to make better-informed decisions. The FROM-16 score banding (0-1=no effect on family members; 2-8=small effect; 9-16=moderate effect;17-25=very large effect; 26-32=extremely large effect on family members) was created using an anchor-based method and data from 4,413 family members of UK patients, recruited online. A major obstacle to including family members' impact in health economic evaluation has been the lack of appropriate utility measures comparable to EQ-5D-3L. To address this gap, using data from 4,228 family members, FROM-16 was mapped to EQ-5D-3L to generate utility values using multinomial logistic regression and split-half validation. The algorithm now enables researchers to calculate EQ-5D health utility values from FROM-16 scores. For FROM-16 to measure the impact of a new intervention on family members, its sensitivity to change must be demonstrated. A study including 83 NHS patients and family members confirmed that the FROM-16 was responsive to change (paired samples t-test p < 0.05). The data from 100 family members were used to calculate the Minimal Clinically Important Difference (MCID). This benchmark to evaluate clinically significant improvement was estimated for FROM-16 as a score change of ‘four’ points using anchor and distribution-based methods. The FROM-16 was used in a global COVID-19 study demonstrating that family members of COVID-19 survivors (n=735) experienced a substantial QoL impact of their relative's COVID-19. This study confirmed the value of FROM-16 for use in a pandemic. Major new aspects of FROM-16 have now been successfully validated.

Item Type: Thesis (PhD)
Date Type: Completion
Status: Unpublished
Schools: Medicine
Date of First Compliant Deposit: 16 February 2024
Last Modified: 16 Feb 2024 16:24

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