A statewide initiative to improve healthcare transition from pediatric to adult care for individuals with neurodevelopmental disabilities: Lessons learned from engaging stakeholders

Abstract

Background

Transition from pediatric to adult healthcare is challenging for patients with Neurodevelopmental Disabilities (NDD). Patients, families, and providers endure systemic barriers. Our objective was convening stakeholders in Massachusetts to identify specific challenges and target solutions for improvement.

Methods

This initiative involved a multistep stakeholder engagement process to improve healthcare transition for individuals with NDD. A steering committee (28 participants) and four task forces (72 participants overall) focused on major improvement themes (e.g., workforce development, practice infrastructure, clinical care, and financing). These groups included multidisciplinary providers, payers, advocacy organizations, state agencies and family partners and met routinely over 18-months to identify barriers and solutions, creating resources to share with key stakeholders. A statewide summit was convened to disseminate results (n = 256 participants). Quality improvement approaches guided initiative efforts and evaluation. Evaluation included interviews with adult providers caring for young adults with NDD, surveys of family members on their satisfaction with the transition process, and surveys of steering committee/taskforce members on their satisfaction with the process and recommendations for future change.

Results

During the 18-month period, the steering committee and taskforce participants created resources and developed and refined a driver diagram that built a foundation for future improvement work. Provider interviews described a lack of adult providers with NDD expertise as a barrier, while availability of care coordination and ability to accommodation patient/family needs were key facilitators. Family surveys indicated low confidence for successful transition prior to transfer to adult providers, but high satisfaction with process once transfer had occurred. Summit participants reported better understanding of healthcare transition needs of the NDD population and an ability to set related goals. When asked to identify change ideas generated at the summit, participants contributed over 100 suggestions, ranging from clinic-level interventions to system-level improvements, reflecting enthusiasm for this work. The majority reported feeling satisfied with the initiative’s process and that it was a good use of time.

Conclusion

This model succeeded in building relationships, developing resources collaboratively and identifying goals and improvements to address healthcare transition for those with NDD. This initiative could serve as a roadmap for convening successful transition improvement efforts.