ArticleJournal of applied research in intellectual disabilities : JARID2021
Piloting the use of global health measures in a Down syndrome clinic.
Article in Journal of applied research in intellectual disabilities : JARID, 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 10 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
10 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Non-disease specific patient-reported outcome measures of health-related quality of life in juvenile idiopathic arthritis: a systematic review of current research and practice.Rheumatology international · 2022Pooled it
- Caregiver Interviews Regarding Health in Down Syndrome.American journal of medical genetics. Part A · 2026Observational
- Building a framework for successful transition from pediatric to adult healthcare in Down syndrome.Frontiers in pediatrics · 2026Article
- Successful (and Unsuccessful) Recruitment Approaches and Participant Loss in a Down Syndrome Survey.American journal on intellectual and developmental disabilities · 2025Article
- Global health measures from a National Down Syndrome Registry.American journal of medical genetics. Part A · 2023Article
- Health in Down syndrome: creating a conceptual model.Journal of intellectual disability research : JIDR · 2023Article
- Indicators of health in Down syndrome: A virtual focus group study with patients and their parents.Journal of applied research in intellectual disabilities : JARID · 2023Article
- Proxy-report in individuals with intellectual disability: A scoping review.Journal of applied research in intellectual disabilities : JARID · 2022Article
- Destination unknown: Parents and healthcare professionals' perspectives on transition from paediatric to adult care in Down syndrome.Journal of applied research in intellectual disabilities : JARID · 2022Article
- Aging with Down Syndrome-Where Are We Now and Where Are We Going?Journal of clinical medicine · 2021Review
Corrections and comments
- Erratum issued
Authors and funding
9 authors.
Funding
Abstract
purposePeople with Down syndrome (DS) have a unique medical profile which may impact views of health. We aimed to explore the use of global health measures in DS.
methodsProspective survey in the Mass General Hospital Down Syndrome Program (MGH DSP) from December 2018 to July 2019 with Patient Reported Outcomes Measurement Information System (PROMIS)® instruments of global health. Analyses included use of scoring manuals, descriptive statistics and dependent samples t test.
resultsSeventeen adolescents, 48 adults with DS and 88 caregivers returned surveys; 137 were complete. Incomplete responses and notes showed limitations of the instruments in this population. Global health T-scores did not differ from the available comparative standardized scores to these measures from PROMIS® reference population (p > 0.05).
conclusionsIn the MGH DSP, pilot global health instruments were completed by some adults with DS and caregivers, with some limitations and scores similar to the PROMIS® reference population.
Indexed as
Identifiers
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.