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Research Questions that Matter to Us: priorities of young people with chronic illnesses and their caregivers

Abstract

Aim

The rising number of children carrying chronic disease with them into adulthood presents the research community with an obligation to address their unique needs. Authentic involvement of individuals and communities directly affected by the condition being studied ensures that research answers the questions of those most affected. Our aim was to identify the highest priority research questions of young people living with chronic illness and their caregivers.

Materials and Methods

We conducted a qualitative study using the Research Prioritization by Affected Communities (RPAC) method. Participants were recruited from two hospitals and two community organizations to participate in focus groups.

Results

Twenty three participants developed and prioritized 300 potentially researchable questions. Thematic analysis of the priority research topics revealed three health dimensions of chronic illness (physical health, social-emotional health and navigating the health care system) and two cross-cutting dimensions (living with a chronic illness and future with a chronic illness).

Conclusion

Young people experiencing different chronic conditions were able to achieve consensus on the same set of condition-agnostic research priorities, age and role influenced research priorities. We report these research priorities to inform and influence local and national research agendas and funding priorities.

Impact

  • Patients and caregivers affected by different chronic illnesses were able to achieve consensus on condition-agnostic research priorities. Age and role influenced research priorities.

  • Questions posed by young people experiencing different chronic conditions fell under three themes (physical, social–emotional and health care system) and two cross-cutting dimensions (living with a chronic illness and future with a chronic illness).

  • Use of the Research Prioritization by Affected Communities (RPAC) method, which begins with the patient’s lived experiences, provided nuanced insights into the complexity of living with a chronic illness and surfaced under-studied research topics to guide future research investment.

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Fig. 1: Top three priority research questions for the five focus groups presented in the participant’s own words.
Fig. 2: Ranking of top priority Research Topics by focus group.

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Acknowledgements

Research reported in this publication was funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Award (5134413).

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Contributions

E.v.S. contributed as follows: substantial contributions to conception and design, acquisition of data, analysis and interpretation of data, drafting the article and revising it critically for important intellectual content, and final approval of the version to be published. B.K.N. contributed as follows: substantial contribution to acquisition of data, analysis, and final approval of the version to be published. I.C.C. contributed as follows: substantial contribution to analysis and interpretation of the data, and final approval of the version to be published. R.K. contributed as follows: substantial contribution to analysis and interpretation of the data, and final approval of the version to be published. L.S.F. contributed as follows: substantial contribution to conception and design, acquisition of data, analysis and interpretation of data, drafting the article and revising it critically for important intellectual content, and final approval of the version to be published.

Corresponding author

Correspondence to Emily von Scheven.

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The authors declare no competing interests.

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All participants provided informed consent as per the UCSF Institutional Review Board approved protocol (17-23588).

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von Scheven, E., Nahal, B.K., Cohen, I.C. et al. Research Questions that Matter to Us: priorities of young people with chronic illnesses and their caregivers. Pediatr Res 89, 1659–1663 (2021). https://doi.org/10.1038/s41390-020-01207-6

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