Evidence map›Paper›PMID 33577992›Full record

ArticleAcademic pediatrics2021

Adolescents and Young Adults With Spina Bifida Transitioning to Adulthood: A Comprehensive Community-Based Needs Assessment.

Ashley M Jenkins, Diane Burns, Rhonda Horick, Brittany Spicer, Lisa M Vaughn, Jason Woodward

Open access · greenAbstract read
In one paragraph

Article in Academic pediatrics, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
1.2field-weighted citation impact, top 21% of its field
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

1 citing paper in PubMed, 7 citations in OpenAlex.

  1. Practice-changing publications: Pediatric urology - focus on treatment of spina bifida.Canadian Urological Association journal = Journal de l'Association des urologues du Canada · 2021
    Article
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

6 authors at 5 institutions in 1 country.

Ashley M JenkinsDivision of Hospital Medicine, Cincinnati Children's Hospital Medical Center (AM Jenkins), Cincinnati, Ohio; Department of Internal Medicine, University of Cincinnati College of Medicine (AM Jenkins), Cincinnati, Ohio. Electronic address: ashley_jenkins@urmc.rochester.edu.
Diane BurnsSpina Bifida Coalition of Cincinnati (D Burns and R Horick), Cincinnati, Ohio.
Rhonda HorickSpina Bifida Coalition of Cincinnati (D Burns and R Horick), Cincinnati, Ohio.
Brittany SpicerDivision of Developmental and Behavioral Pediatrics, Cincinnati Children's Hospital Medical Center (B Spicer and J Woodward), Cincinnati, Ohio.
Lisa M VaughnDepartment of Pediatrics, University of Cincinnati College of Medicine (LM Vaughn and J Woodward), Cincinnati, Ohio; Division of Pediatric Emergency Medicine, Cincinnati Children's Hospital Medical Center (LM Vaughn), Cincinnati, Ohio.
Jason WoodwardDivision of Developmental and Behavioral Pediatrics, Cincinnati Children's Hospital Medical Center (B Spicer and J Woodward), Cincinnati, Ohio; Department of Pediatrics, University of Cincinnati College of Medicine (LM Vaughn and J Woodward), Cincinnati, Ohio.
University of Cincinnati Medical Center · USCincinnati Children's Hospital Medical Center · USSpina Bifida Association · USSpina Bifida Resource Network · USWoodward (United States) · US

Funding

LCenter for Clinical and Translational Science and TrainingUL1TR001425 · NCATS · UNIVERSITY OF CINCINNATI · PI MEINZEN-DERR, JAREEN, STRAWN, JEFFREY ROBERT · 2015 to 2024
$37.5M
NCATS NIH HHS UL1 TR001425
6 · The paper itself

Abstract

objectiveDeveloping effective interventions to promote successful transition to adulthood for adolescents and young adults (AYA) with spina bifida (SB) requires input from SB community stakeholders, particularly AYA themselves. The goal of this study was to identify and prioritize facilitators and barriers of successful transition to a healthy adult life for AYA with SB.

methodsWe utilized concept mapping, a community-engaged research methodology. We recruited a purposeful sample of SB community stakeholders: AYA with SB, parents/caregivers, pediatric and adult health care providers, and community organizations. Participants generated ideas to open-ended prompts. A subset of participants sorted responses into groups of similar ideas. Multidimensional scaling and hierarchical cluster analysis were applied to generate cluster maps. The concept map was determined by identifying the optimal cluster number that qualitatively represented meaningful and distinct concepts. Concepts were rated by participants for importance and feasibility.

resultsParticipants generated 90 unique ideas that were then sorted. The research team chose a 10-cluster concept map: coordinated and comprehensive medical care, health and wellness, self-management, self-advocacy, skills to maximize independence, inclusivity and relationship supports, physical accessibility of the environment, employment, finances, and community- and school-based resources. Self-management, self-advocacy, and inclusivity and relationship supports were rated as both highly feasible and important.

conclusionsBy using concept mapping to engage diverse stakeholders, including people with intellectual, development, and physical disabilities, this study prioritized less traditional areas like inclusivity and relationship supports to focus improvement efforts relevant to AYA with SB becoming healthy adults.

Indexed as

Persons with DisabilitiesSelf-ManagementSpinal DysraphismAdolescentAdultChildHumansNeeds AssessmentParentsYoung Adultadolescents and young adultshealth care transitionspina bifida

Identifiers

PMID33577992
PMCPMC8263488
OpenAlexW3128028492

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

None linked

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.