Perspectives of paediatricians on collecting children’s and caregivers’ preferences for outcomes relevant to patients: a qualitative interview study in China
Ruobing Lei, Janne Estill, Hanxiang Liu, Lu Cheng, Qiu Li, Yaolong Chen, Chen WangObjectives
To explore the experiences and perspectives of paediatricians in China regarding how children and caregivers may be involved in identifying patient-relevant outcomes for core outcome set (COS) development.
Methods
This was a descriptive qualitative study. We conducted semistructured and audio-recorded interviews with paediatricians from China. We used purposive sampling to ensure diversity in terms of gender, geographical region and clinical specialty. Data were obtained as part of the project (Guidance on Children’s and Caregivers’ Participation in the Core Outcome Sets Development). The interviews were conducted in China between August and December 2024.
Results
23 paediatricians (65.2% female; 43.5% with more than 20 years of clinical experience) were interviewed. Participants represented five major geographical regions of China (Northwest, Southwest, Central, East and South) and covered 21 clinical specialties. Respondents broadly acknowledged the importance of children’s and caregivers’ participation in COS development. In addition, drawing on the Chinese context, they put forward perspectives for implementation: respondents proposed that children aged around 7 years and older may be able to provide basic views with appropriate support, whereas those aged around 10 years and older were perceived as particularly suitable for individual interviews when developmentally appropriate and adequately supported. Most respondents cautioned against excluding caregivers with limited health literacy, favouring tailored support over exclusion and recommended engaging patients with acute or critical conditions after clinical stabilisation, alongside narrative interviewing.
Conclusion and relevance
This study provides practice-based insights from paediatricians in China on how children and caregivers may be involved in identifying patient-relevant outcomes, particularly for COS development. The findings should be interpreted as clinicians’ perspectives and complemented by future research that directly involves children and caregivers.