Caregiver-reported barriers to care for children and adults with Williams Syndrome.

Elizabeth W Barnhardt, Marilee Martens, Rebecca Andridge, Jennifer Walton

Abstract read

In one paragraph

Article in Journal of community genetics, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it

0cells of the map it votes in

0citing papers in PubMed

–field-weighted citation impact

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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

4 authors.

Elizabeth W BarnhardtSection of Developmental and Behavioral Pediatrics, Nationwide Children's Hospital, 380 Butterfly Gardens Drive, Columbus, OH, USA. Elizabeth.Barnhardt@nationwidechildrens.org.

Marilee MartensDepartment of Psychology, Nationwide Children's Hospital, 380 Butterfly Gardens Drive, Columbus, OH, USA.

Rebecca AndridgeDivision of Biostatistics, The Ohio State University College of Public Health, 242 Cunz Hall, Columbus, OH, USA.

Jennifer WaltonSection of Developmental and Behavioral Pediatrics, Department of Pediatrics, and Mailman Center for Child Development, University of Miami Miller School of Medicine, and Holtz Children's Hospital, The Ohio State University College of Public Health, Jackson Health System, Miami, FL, USA.

Funding

Research Institute, Nationwide Children's Hospital FP00000456

6 · The paper itself

Abstract

Individuals with Williams syndrome (WS) may experience a variety of medical, behavioral, and educational concerns. The primary objective of this study was to assess barriers to health care for patients with WS, primarily using the Barriers to Care Questionnaire (BCQ), and to assess whether various demographic factors are correlated with these barriers. A REDCap survey was distributed using the Williams Syndrome Association Research Registry. 319 caregivers of individuals with WS in the United States completed the BCQ. On the BCQ, lower scores indicate more barriers to care. Younger age was associated with lower scores for both the pragmatics and the skills subscales while lower income levels and increased distances to providers knowledgeable about WS were consistently associated with lower total BCQ scores.

Indexed as

Barriers to careDevelopmental disabilitiesWilliams syndrome

Identifiers

PMID38776013

DOI10.1007/s12687-024-00707-w

PMCPMC11411038

What OpenQuestion holds

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LicenceCC BY

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Registered trials

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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.