Evidence map›Paper›PMID 36958787›Full record

ArticleBMJ open2023

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

Rubina Shah, Andrew Y Finlay, Sam M Salek, Stuart J Nixon, Kennedy Otwombe, Faraz M Ali, John R Ingram

Open access · goldAbstract read
In one paragraph

Article in BMJ open, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers.

0numbers the graph read from it
0cells of the map it votes in
9citing papers in PubMed
4.7field-weighted citation impact, top 5% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

9 citing papers in PubMed, 15 citations in OpenAlex.

  1. Article
  2. Article
  3. Article
  4. Validation of the FROM-16 in family members of patients receiving advanced therapy medicinal product (ATMP).Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025
    Article
  5. Families of adults with idiopathic hypersomnia and narcolepsy: psychosocial impact and contribution to symptom management.Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine · 2025
    Article
  6. Article
  7. Review
  8. Article
  9. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

7 authors at 4 institutions in 4 countries.

Rubina ShahDivision of Infection and Immunity, Cardiff University, School of Medicine, Cardiff, UK ShahR45@cardiff.ac.uk.ORCID 0000-0001-8158-712X
Andrew Y FinlayDivision of Infection and Immunity, Cardiff University, School of Medicine, Cardiff, UK.ORCID 0000-0003-2143-1646
Sam M SalekSchool of Life & Medical Sciences, University of Hertfordshire, Hatfield, UK.ORCID 0000-0002-4612-5699
Stuart J NixonMultiple Sclerosis Society, London, UK.
Kennedy OtwombeStatistics and Data Management Centre, Perinatal HIV Research Unit, Chris Hani Baragwanath Academic Hospital, University of the Witwatersrand, Johannesburg, South Africa.ORCID 0000-0002-7433-4383
Faraz M AliDivision of Infection and Immunity, Cardiff University, School of Medicine, Cardiff, UK.ORCID 0000-0002-4184-2023
John R IngramDivision of Infection and Immunity, Cardiff University, School of Medicine, Cardiff, UK.ORCID 0000-0002-5257-1142
Institute of Infection and Immunity · CAMultiple Sclerosis Society · GBUniversity of Hertfordshire · GBUniversity of the Witwatersrand · ZA

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectiveTo 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

settingA 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.

participantsFamily members/partners (aged ≥18 years) of patients with different health conditions.

interventionFamily members/partners of patients completed the FROM-16 questionnaire and a Global Question (GQ).

main outcome measureVarious 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.

resultsA 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).

conclusionThe 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.

Indexed as

FamilyQuality of LifeAdolescentAdultCross-Sectional StudiesFemaleHumansMalePatient Reported Outcome MeasuresWalesHEALTH SERVICES ADMINISTRATION & MANAGEMENTQUALITATIVE RESEARCHQuality in health careSTATISTICS & RESEARCH METHODS

Identifiers

PMID36958787
PMCPMC10040025
OpenAlexW4360613279

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.