Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Randomized Controlled Trial
. 2024 Apr;33(4):1107-1119.
doi: 10.1007/s11136-023-03590-z. Epub 2024 Feb 25.

Mapping of Family Reported Outcome Measure (FROM-16) scores to EQ-5D: algorithm to calculate utility values

R Shah  1 , M S Salek  2 , A Y Finlay  3 , R Kay  4 , S J Nixon  5 , K Otwombe  6 , F M Ali  3 , J R Ingram  3
Affiliations
Randomized Controlled Trial

Mapping of Family Reported Outcome Measure (FROM-16) scores to EQ-5D: algorithm to calculate utility values

R Shah et al. Qual Life Res. 2024 Apr.

Abstract

Objective: Although decision scientists and health economists encourage inclusion of family member/informal carer utility in health economic evaluation, there is a lack of suitable utility measures comparable to patient utility measures such those based on the EQ-5D. This study aims to predict EQ-5D-3L utility values from Family Reported Outcome Measure (FROM-16) scores, to allow the use of FROM-16 data in health economic evaluation when EQ-5D data is not available.

Methods: Data from 4228 family members/partners of patients recruited to an online cross-sectional study through 58 UK-based patient support groups, three research support platforms and Welsh social services departments were randomly divided five times into two groups, to derive and test a mapping model. Split-half cross-validation was employed, resulting in a total of ten multinomial logistic regression models. The Monte Carlo simulation procedure was used to generate predicted EQ-5D-3L responses, and utility scores were calculated and compared against observed values. Mean error and mean absolute error were calculated for all ten validation models. The final model algorithm was derived using the entire sample.

Results: The model was highly predictive, and its repeated fitting using multinomial logistic regression demonstrated a stable model. The mean differences between predicted and observed health utility estimates ranged from 0.005 to 0.029 across the ten modelling exercises, with an average overall difference of 0.015 (a 2.2% overestimate, not of clinical importance).

Conclusions: The algorithm developed will enable researchers and decision scientists to calculate EQ-5D health utility estimates from FROM-16 scores, thus allowing the inclusion of the family impact of disease in health economic evaluation of medical interventions when EQ-5D data is not available.

Keywords: EQ-5D; FROM-16; Family member/partner; Health economic evaluation; Health technology; Informal carer; Quality of life; Response mapping; Utility values.

PubMed Disclaimer

Conflict of interest statement

RS, KO, RK and SJN declared no competing interest; FMA is employed by Cardiff University: Cardiff University receives royalties from some uses of FROM-16; AYF reports personal fees from Novartis Lecture honorarium, personal fees from Medscape Podcast honorarium, personal fees from Eli Lilly Lecture honorarium, outside the submitted work; MSS and AYF are joint copyright owner of the FROM-16 for which Cardiff University receives royalties for its commercial use, and they receive a share under standard university policy. JRI receives a stipend as Editor-in-Chief of the British Journal of Dermatology and an authorship honorarium from UpToDate. He is a consultant for Abbvie, Boehringer Ingelheim, ChemoCentryx, Citryll, Novartis and UCB Pharma and has served on advisory boards for Insmed, Kymera Therapeutics and Viela Bio. He is co-copyright holder of HiSQOL, Investigator Global Assessment and Patient Global Assessment instruments for HS. His department receives income from royalties for the use of the Dermatology Life Quality Index (DLQI), Family Reported Outcome Measure (FROM-16) and related instruments.

Figures

Fig. 1
Fig. 1
a Distributions of the EQ-5D-3L utility value; b Distributions of FROM-16 Total Summary Score; c Scatterplot showing the relationship between FROM-16 total summary score and EQ-5D utility value
Fig. 2
Fig. 2
The cumulative percentage of observed EQ-5D-3L utility values vs. simulated values for a typical model (model 4/10)
Fig. 3
Fig. 3
Histogram displaying the difference between predicted and observed health utility estimates for a typical cross validation set 4
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

See all "Cited by" articles

References

    1. Pennington BM. Inclusion of carer health-related quality of life in national institute for health and care excellence appraisals. Value Health. 2020;23(10):1349–1357. doi: 10.1016/j.jval.2020.05.017. - DOI - PubMed
    1. Brouwer WBF. The inclusion of spillover effects in economic evaluations: Not an optional extra. PharmacoEconomics. 2019;37(4):451–456. doi: 10.1007/s40273-018-0730-6. - DOI - PubMed
    1. Basarir H, Brockbank J, Knight C, Wolowacz S. PNS258 the inclusion of the utility values for carers and family members in HTAS: A case study of recent NICE appraisals in the UK. Value in Health. 2019;22:S330. doi: 10.1016/j.jval.2019.04.1613. - DOI
    1. (ICER), I. f. C. a. E. R. (2019). Spinraza® and Zolgensma® for spinal muscular atrophy: Effectiveness and value: Final evidence report. Retrieved September 21, 2023, from https://icer.org/wp-content/uploads/2020/10/ICER_SMA_Final_Evidence_Repo...
    1. Leech AA, Lin PJ, D’Cruz B, Parsons SK, Lavelle TA. Family spillover effects: Are economic evaluations misrepresenting the value of healthcare interventions to society? Applied Health Economics and Health Policy. 2023;21(1):5–10. doi: 10.1007/s40258-022-00755-8. - DOI - PMC - PubMed

Publication types

LinkOut - more resources