Evaluating the implementation of self-management skill readiness assessment for adolescents and young adults with spina bifida

Abstract

Background

Spina bifida (SB) is a complex condition affecting brain, bowel, bladder, cognitive, motor, and sensory functions. Evidence shows that adolescents and young adults (AYAs) with SB who master self-management of their complex condition experience better health outcomes. Assessment and support of AYA self-management using tools like the Transition Readiness Assessment Questionnaire Spina Bifida (TRAQ-SB) is recommended by the Spina Bifida Association.

Methods

An explanatory sequential mixed-methods evaluation grounded in the RE-AIM framework investigated reach, effectiveness, adoption, and implementation of the TRAQ-SB into a multi-disciplinary specialty SB clinic. Medical record chart review quantified RE-AIM metrics and informed design of the qualitative strand, focus group sessions for three distinct ‘users’ of the TRAQ-SB: AYAs with SB, their parents, and their clinicians.

Findings

Self-management skill acquisition is a positive step towards AYA independence, but various factors impact this move. While most AYA with SB completed the TRAQ-SB, only 25% of clinicians documented discussion of the tool to inform the AYA plan of care. This indicates inadequate clinician adoption of the TRAQ-SB. Parents of AYA with SB that depend on others for self-care desire a different assessment and indicate reduced effectiveness of the TRAQ-SB. AYA with SB want the ‘gentleness and tenderness’ of the pediatric care system to extend to the adult care system.

Conclusions

Our evaluation provided insight into who completed the TRAQ-SB, how it was or was not used by clinicians, and the impact of internal and external environmental factors, providing support for self-management readiness assessment of AYAs with SB.