Evidence map›Paper›PMID 42389668›Full record

ArticleMDM policy & practice

Developing and Piloting an Instrument to Prioritize the Worries of Female Youth with a Physical Disability and Mothers during the Transition to Adulthood.

Courtney S Streur, Dalia Elased, Jodi M Kreschmer, Rebecca Parten, Hamoud Alhazmi, Brittany Gay, Ashley Duby, Henrike L Schmalfuss, Jenna Goldstein, Grayson N Holmbeck and 2 more

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Article in MDM policy & practice. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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1 · What the graph read from it

What it found

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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

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3 · Its place in the literature

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4 · The record

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5 · Who and what money

Authors and funding

12 authors.

Courtney S StreurDepartment of Urology, University of Michigan, Ann Arbor, MI, USA.ORCID https://orcid.org/0000-0002-6618-6552
Dalia ElasedDepartment of Biomedical Informatics, The Ohio State University College of Medicine, Columbus, OH, USA.
Jodi M KreschmerDepartment of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA.
Rebecca PartenDepartment of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA.
Hamoud AlhazmiDepartment of Biomedical Informatics, The Ohio State University College of Medicine, Columbus, OH, USA.
Brittany GayDivision of Endocrinology, Department of Medicine, University of Michigan, Ann Arbor, MI, USA.
Ashley DubyDivision of Colorectal Surgery, Department of Surgery, University of Michigan, Ann Arbor, MI, USA.
Henrike L SchmalfussHarvard Medical School, Boston, MA, USA.ORCID https://orcid.org/0000-0003-1176-5247
Jenna GoldsteinDepartment of Urology, University of Michigan, Ann Arbor, MI, USA.
Grayson N HolmbeckDepartment of Psychology, Loyola University Chicago, Chicago, IL, USA.ORCID https://orcid.org/0000-0002-2216-1927
Lisa A ProsserSusan B. Meister Child Health and Evaluation Research Center, Department of Pediatrics, University of Michigan, Ann Arbor, MI, USA.
John F P BridgesDepartment of Biomedical Informatics, The Ohio State University College of Medicine, Columbus, OH, USA.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Background: The transition to adulthood is a worrying time for female youth with a physical disability and their mothers. We sought to develop an instrument to assess which transition-related worries are most (and least) worrisome to youth and mothers to inform transition preparation interventions. Design: A community-centered approach was used to identify and refine the most common transition-related worries of youth and mothers. A novel best-worst scaling (BWS) instrument was created in partnership with an advisory board of female youth with a physical disability and their mothers. BWS is a theory-driven survey method to identify priorities. The instrument was then pretested, refined, and piloted with youth and mothers. Findings were assessed by consultation with stakeholders. Results: After input from youth and mothers, 11 transition-related worries were included in the pilot instrument using an object case experimental design. Pilot testing was conducted with 22 youth and 16 mothers, including 3 mother-daughter dyads. The completion rate was 86% for youth and 100% for mothers. The instrument was sensitive enough to detect differences between youth and mothers at both the aggregate and dyad level. On aggregate, both youth and mothers worried more about health-related compared to social-related worries but differed on the prioritization of independence-related worries. Discussion of results with participants and an advocacy group confirmed the face validity of the findings. Limitations: Male youth and fathers were not included. Conclusions: The novel BWS instrument is feasible for female youth and mothers to complete independently and was valid in prioritizing worries on the aggregate and dyad levels. Implications: A subsequent large-scale study using the instrument may inform transition initiatives, while use among in a clinical setting may guide decision making.

Indexed as

cerebral palsyhealth care transitionpediatric to adult care transitionphysical disabilityspina bifida

Identifiers

PMID42389668
PMCPMC13320067

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