Clinical Management
Nita Chahal, PhD, Pediatrics-NP
Pediatric Nurse Practitioner
The Hospital for Sick Children, Canada
Background: Patient and family engagement is an important component for collaborative care and guiding research priorities. To garner interest in topics specific to patients and families for the International KD Symposium 2024, the Support Committee of Kawasaki Disease Canada developed and distributed an online survey in collaboration with representatives from several countries. Preferences by patients and families were identified through forced-answer responses. Space was left for additional written comments or questions. The raw data and comments were shared with researchers at SickKids Hospital, Toronto, for qualitative analysis to answer the question: What are the priority needs and questions among those experiencing KD?
Methods/ Analysis: Two reviewers independently read the responses multiple times to ascertain predominant expressions. Upon consensus of the reviewers, the data were rank ordered into four categories: long-term effects; lifestyle; psychosocial; and system. Four themes were generated and priority-ranked from the seven categories that were identified from similar terms and expressions. Significant exemplars were selected from written comments.
Results: To date (Jan 25, 2024), there have been 79 survey respondents (92% parent/caregiver) from 11 countries (while for 11 participant countries not identified). The 78 written comments were analyzed for themes. The predominant categories were 1) specification/prediction of the long-term effects of KD; 2) lifestyle issues and strategies for healthy living; 3) psychosocial considerations and need for support mechanisms; and 4) system issues (comments for clinicians, educators, and researchers). System considerations were related to assessment, diagnosis, reproduction concerns, and standardization of care protocols including transition and systems for adult care. Other identified areas were related to learning (e.g., health care provider awareness and expertise) and research (e.g., cause of KD, long-term effects of therapies, risk of recurrence, impact on cognition).
Conclusion: Patients and families identified their priority needs relating to expectations of the future, strategies for healthy living, the need for support mechanisms, and the need to address system issues and efficiencies. Concerns about transition to adult care and the specific expertise of adult care providers were prevalent. The review supported our prior qualitative research identifying the psychosocial realities for KD patients and families. While many of those realities remain, findings from this patient and family group survey and the qualitative analysis are useful in prioritizing the development of information, support, and system strategies as informed by stakeholder engagement.