Dataset Information

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

ABSTRACT:

Objective

Developing 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.

Methods

We 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.

Results

Participants 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.

Conclusions

By 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.

SUBMITTER: Jenkins AM

PROVIDER: S-EPMC8263488 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:ImportanceHealth literacy has been shown to play an important role in transitions of care in adult populations, with low health literacy associated with adverse health outcomes. The role of health literacy in the transition from pediatric to adult care has been less well studied. Among adolescents and young adults with spina bifida, high rates of unsuccessful transition have been shown, but how patient health literacy affects transition readiness remains unknown.ObjectiveTo determine whether health literacy is associated with transition readiness in adolescents and young adults with spina bifida.Design, setting, and participantsThis cross-sectional study involved collection of patient-reported questionnaires between June 2019 and March 2020 at a multidisciplinary spina bifida center at a single, free-standing children's hospital. Patient demographic and clinical characteristics were obtained from medical record review. Patients were aged 12 years or older with a diagnosis of spina bifida (myelomeningocele and nonmyelomeningocele) whose primary language was English or Spanish. Data analysis was performed from October 2020 to March 2021.ExposuresHealth literacy as assessed by the Brief Health Literacy Screening Tool.Main outcomes and measuresThe primary outcome was total Transition Readiness Assessment Questionnaire (TRAQ) score, normalized into units of SD. Nested, multivariable linear regression models assessed the association between health literacy and TRAQ scores.ResultsThe TRAQ and Brief Health Literacy Screening Tool were completed by 200 individuals (median [range] age, 17.0 [12.0-31.0] years; 104 female participants [52.0%]). Most of the patients were younger than 18 years (110 participants [55.0%]) and White (136 participants [68.0%]) and had myelomeningocele (125 participants [62.5%]). The mean (SD) TRAQ score was 3.3 (1.1). Sixty-six participants (33.0%) reported inadequate health literacy, 60 participants (30.0%) reported marginal health literacy, and 74 participants (37.0%) reported adequate health literacy. In univariable analysis, health literacy, age, type of spina bifida, level of education, self-administration vs completion of the questionnaires with assistance, ambulatory status, and urinary incontinence were associated with total TRAQ score. In all nested, sequentially adjusted, multivariable models, higher health literacy remained a significant, stepwise, independent variable associated with higher TRAQ score. In the fully adjusted model, having adequate compared with inadequate health literacy was associated with an increase in normalized TRAQ score of 0.49 SD (95% CI, 0.19-0.79).Conclusions and relevancePatient-reported transition readiness is associated with health literacy, even after adjustment for education level and other demographic and clinical factors. Developing and implementing health literacy-sensitive care programs during the transition process may improve patient transition readiness.

Project description:BACKGROUND: Children with the severe form of spina bifida (SBM: spina bifida with myelomeningocele with accompanying hydrocephalus) may manifest attention deficits, and have a similar psychological profile to children with hydrocephalus due to other etiologies. It is unclear to what extent tests to assess attention in SBM are confounded by the accompanying cognitive or visual-motor impairments. The aim of this study was to analyse attention functions by administering two different types of attention tests, one with high and the other with low cognitive and motor requirements. This enabled the possible interaction between attention and cognitive and motor impairment to be assessed. METHODS: The study group comprised 31 children with SBM with shunted hydrocephalus. Twenty children with SB-only formed a closely matched comparison group. Of these, 19 children with SBM and 18 with SB had a full-scale IQ (FSIQ) higher than 70. All had undergone spinal surgery and all children with SBM had been shunted within the first months of life. Between 6 and 15 years of age, the children were assessed on focused and sustained attention, encoding, and distractibility/impulsivity, using both traditional tests and computerized attention tests. RESULTS: Compared to the SB group, attention scores of children with SBM were lower on the traditional tests, but when interfering cognitive and visual-motor requirements were eliminated using the computerised tasks, most differences disappeared. Furthermore, in contrast to traditional attention tasks, computerized tests showed no significant correlations with IQ-scores and visual-motor skills. CONCLUSION: Assessment of attention functions in children with SBM by traditional tests may be misleading, because this paediatric population with complex cerebral malformations has difficulty with the cognitive and visual-motor requirements. To control for these interactions, the use of both traditional and computerized attention tests is recommended.