ArticlePediatric research2021
Research Questions that Matter to Us: priorities of young people with chronic illnesses and their caregivers.
Article in Pediatric research, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
13 citing papers in PubMed, 14 citations in OpenAlex.
- Assessing rare disease understanding: a novel disease readiness level framework.Orphanet journal of rare diseases · 2025Article
- Reducing health inequalities in the deaf community: a priority setting exercise.BMC health services research · 2025Article
- Establishing Research Priorities for Children Living With Chronic Health Conditions: A Value-Weighting Study by Australian Caregivers.Journal of paediatrics and child health · 2025Article
- Process Model for Transitioning Care Responsibility to Adolescents and Young Adults with Biliary Atresia: A Secondary and Integrative Analysis.Nursing reports (Pavia, Italy) · 2025Article
- Involving people with lived experience when setting cerebral palsy research priorities: A scoping review.Developmental medicine and child neurology · 2025Article
- Voices of Hope: Leveraging Think-Aloud Cognitive Interviews to Develop a Hope Assessment Tool for Young People Living with Chronic Health Conditions.Children (Basel, Switzerland) · 2024Article
- The academic impact of paediatric research agendas: a descriptive analysis.Research involvement and engagement · 2024Article
- Identifying research priorities with children, youth, and families: A scoping review.Journal of child health care : for professionals working with children in the hospital and community · 2024Article
- A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments.The Cochrane database of systematic reviews · 2023Review
- How do we best engage young people in decision-making about their health? A scoping review of deliberative priority setting methods.International journal for equity in health · 2023Article
- Involving children and young people in paediatric research priority setting: a narrative review.BMJ paediatrics open · 2022Review
- Getting to Hope: Perspectives from Patients and Caregivers Living with Chronic Childhood Illness.Children (Basel, Switzerland) · 2021Article
- Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
aimThe 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
methodsWe 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.
resultsTwenty 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).
conclusionYoung 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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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.