ReviewHealth and quality of life outcomes2021
Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature.
Review in Health and quality of life outcomes, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 15 papers, 1 of them a synthesis that pooled 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.
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.
Who cites it
15 citing papers in PubMed, 1 synthesis or guideline pooled it, 37 citations in OpenAlex.
- Systematic Review of Instruments Assessing Psychosocial Adaptation and Outcomes Among Families of Children With Congenital Heart Disease.Journal of pediatric psychology · 2023Pooled it
- Mapping of Family Reported Outcome Measure (FROM-16) scores to EQ-5D: algorithm to calculate utility values.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Trial
- Beyond the burden: Measuring the quality of life impact of Parkinson's on family members/partners using FROM-16.Journal of Parkinson's disease · 2026Article
- Prioritizing Long-Term Care Services for Disabled Older Adults: A Cross-Sectional Study Using the Kano Model and Entropy-Weighted TOPSIS.Journal of nursing management · 2026Article
- Assessing the correlation between patient and family reported outcome measures and multiple myeloma clinical parameters.Scientific reports · 2025Observational
- Psychometric validation of the Spanish for Ecuador Family Reported Outcome Measure (FROM-16) and its application to measure impact on family members of patients with skin diseases.Journal of patient-reported outcomes · 2025Article
- 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 · 2025Article
- 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 · 2025Article
- Comparison of the impact of type 1 and type 2 diabetes on quality of life of families of patients: A UK cross-sectional study.Diabetes, obesity & metabolism · 2025Article
- Responsiveness and minimal important change of the Family Reported Outcome Measure (FROM-16).Journal of patient-reported outcomes · 2024Article
- Participants' Bias in Disability Research on Family Quality of Life during the 0-6 Years Stage.Behavioral sciences (Basel, Switzerland) · 2023Review
- Meaning of Family Reported Outcome Measure (FROM-16) severity score bands: a cross-sectional online study in the UK.BMJ open · 2023Article
- Using Latent Class Analyses to Examine Health Disparities among Young Children in Socially Disadvantaged Families during the COVID-19 Pandemic.International journal of environmental research and public health · 2022Article
- Correction to: Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature.Health and quality of life outcomes · 2021Article
- Multiple sclerosis greatly impacts family members/partners: Evidence using the Family Reported Outcome Measure (FROM-16).Multiple sclerosis journal - experimental, translational and clinicalArticle
Corrections and comments
- Erratum issued
Authors and funding
4 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundA person's chronic health condition or disability can have a huge impact on the quality of life (QoL) of the whole family, but this important impact is often ignored. This literature review aims to understand the impact of patients' disease on family members across all medical specialities, and appraise existing generic and disease-specific family quality of life (QoL) measures.
methodsThe databases Medline, EMBASE, CINHAL, ASSIA, PsycINFO and Scopus were searched for original articles in English measuring the impact of health conditions on patients' family members/partner using a valid instrument.
resultsOf 114 articles screened, 86 met the inclusion criteria. They explored the impact of a relative's disease on 14,661 family members, mostly 'parents' or 'mothers', using 50 different instruments across 18 specialities including neurology, oncology and dermatology, in 33 countries including the USA, China and Australia. These studies revealed a huge impact of patients' illness on family members. An appraisal of family QoL instruments identified 48 instruments, 42 disease/speciality specific and six generic measures. Five of the six generics are aimed at carers of children, people with disability or restricted to chronic disease. The only generic instrument that measures the impact of any condition on family members across all specialities is the Family Reported Outcome Measure (FROM-16). Although most instruments demonstrated good reliability and validity, only 11 reported responsiveness and only one reported the minimal clinically important difference.
conclusionsFamily members' QoL is greatly impacted by a relative's condition. To support family members, there is a need for a generic tool that offers flexibility and brevity for use in clinical settings across all areas of medicine. FROM-16 could be the tool of choice, provided its robustness is demonstrated with further validation of its psychometric properties.
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What OpenQuestion holds
Registered trials
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.