P2.041: Partnering with Patients and Families to Prioritize Competencies of Physicians Caring for Children with Medical Complexity and Disability

Background: Essential competencies of pediatricians who care for children with medical complexity (CMC) and disability are being defined by educational programs. Patients and families are key stakeholders in defining competencies. We (i) describe a consensus development study grounded in family partnership and (ii) identify high-priority competencies of pediatricians caring for CMC, reflecting the consensus of clinicians, family caregivers and young adults with medical complexity and disability.

Methods: We used consensus development methodology with a study team comprised of two family leaders and two clinician-educators. At study outset, roles, expectations and compensation were discussed. Study conceptualization was supported by (i) formation of a steering committee with family leaders and (ii) engagement with a Research Family Advisory Committee. We recruited participants via an international complex care listserv, family-led organizations and social media, using purposeful sampling to ensure a range of clinical and lived experience in the care of CMC. In Round 1, participants responded to an open-ended prompt about competencies of pediatricians who care for CMC. After refinement of responses by the steering committee, Rounds 2 and 3 involved rating synthesized competencies and identifying 10 essential competencies.

Results: From March-July 2024, an expert panel consisting of 47 clinicians, 41 family caregivers and 9 young adults with medical complexity participated. In Round 1, 131 responses were synthesized into 94 competencies in 5 domains: medical expertise, collaborative care, patient- and family-centered care, partnership in advocacy, and reflective practice. In Round 2, 38 of the 94 competencies were prioritized as very important for all pediatricians in the care of CMC. In Round 3, top identified competencies beyond medical expertise included: values the whole child and demonstrates a humanistic approach to care, demonstrates integrity in clinical practice, collaborates with an interprofessional team outside of healthcare, engages in shared decision-making, recognizes the impact of systemic factors on the family experience, demonstrates curiosity and flexibility, appreciates uncertainty, and recognizes the importance of care coordination. While consensus was achieved, there were subtle but important differences between stakeholder groups.

Conclusion: An international expert panel of clinicians, patients and families identified high-priority competencies for all pediatricians in the care of CMC. The codesign model adopted in this study provides a potential roadmap to others involved in health professional education. The findings can be used to advance a collaborative training agenda that reflects the perspectives of all stakeholders to support optimal care for children with complex health issues and disabilities.