Observational studyAmerican journal of medical genetics. Part A2026
Caregiver Interviews Regarding Health in Down Syndrome.
Observational study in American journal of medical genetics. Part A, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04631237 (Developing a Down Syndrome Health Instrument), which is not on this map. Cited by 1 paper.
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.
Developing a Down Syndrome Health Instrument
Who cites it
1 citing paper in PubMed.
- Caregivers' Perspectives on Medical Management and Its Helpfulness in Down Syndrome.American journal of medical genetics. Part A · 2026Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
Abstract
Individuals with Down syndrome (DS) have co-occurring medical conditions. Research on how caregivers understand, interpret, and answer questions about the health of their son or daughter with DS is needed to guide the development of a measure of the health status of children and adolescents with DS. We conducted 1-h virtual cognitive interviews of caregivers of individuals aged 0 to 21 with DS about our drafted survey items on physical, mental, and social health using a modified "think-aloud" approach with probes. In addition to using their feedback to iteratively refine our survey, in this manuscript we describe the themes of feedback from caregivers and summarize survey item changes. Four rounds of cognitive interviews for a total of 40 interviews of 42 caregivers of individuals with DS were completed. Cognitive interview themes included: using the easiest phrase possible, focusing on the present, being conversational in terminology, and specifying who items refer to or who comparison groups are, among others. Caregiver interviews were informative and led us to make modifications to our survey items. Themes emerged which hold use to other researchers conducting surveys in populations with genetic syndromes. Trial Registration:NCT04631237.
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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 Socratic graph.