PEDSnet-DBPNet Stakeholder-informed Patient-Centered Research Prioritization for Patients with Intellectual & Development Disabilities (IDD)
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Abstract
Part of a PEDSnet Infrastructure Grant to meaningfully engage patients and families in research and research decision-making, and use stakeholder-informed priorities as a framework for future PEDSnet project funding decisions. This project aimed to develop a prioritized list of research projects to generate new evidence that can have immediate impact on patient health outcomes. The project area of focus is intellectual and developmental disabilities (IDD). This area of focus was selected because it is one of two legislatively mandated PCORI priorities. The IDD prioritization is conducted as a collaboration between PEDSnet and the Developmental-Behavioral Pediatrics Research Network (DBPNet).
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Description
This study, one of a three part PCORI Infrastructure Grant, aims to describe a multi-step process for identifying stakeholder-informed research priorities with the potential to generate new evidence that can have an immediate impact on patient health outcomes. The process involves 5 steps:
- Defining the questions that will elicit research priority areas and recruitment of stakeholders;
- Topic Elicitation;
- Topic Curation;
- Clinician Scientist Group ranking of topics; and
- Parent/Youth Group ranking of topics.
Study Aims
- Generate a list of stakeholder-informed research priorities with the potential to generate new evidence related to IDD that would have immediate impact on patient health outcomes.
- Demonstrate the feasibility of a multistep process for identifying stakeholder informed research priorities that could be used by PEDSnet to identify stakeholder informed research priorities related to PCORI Strategic Priorities for pediatric health research and/or priorities determined by the PEDSnet Steering Committee.
Study Design
This study entails prospective recruitment of youth, parents/caregivers, clinicians, and clinician-researchers to produce stakeholder-informed research priorities. The study team uses crowdsourcing methods to collect responses to study questions from participating youth, parents/caregivers, and clinicians.
Cohort Description
Inclusion Criteria, Youth with IDD
- Male or female, age 13-24 years.
- Youth diagnosed with of one or more of the following IDDs: attention deficit hyperactivity disorder, autism spectrum disorder, communication and language disorders, learning disabilities, and/or intellectual disability (recruiting even numbers of participants across these 5 IDD areas).
- Parental/guardian permission (informed consent) and youth assent.
- Youth able to read questions and respond in writing or parent/caregiver judges that the youth can meaningfully participate with parent/caregiver support.
Exclusion Criteria, Youth with IDD
- Do not read and write in English and/or parents judge that the youth would not be able to state potential research priorities or rank order what is most important to him or her.
Inclusion Criteria, Parent Subject
- Males or females age 18 years or older.
- Parent or caregiver of a child diagnosed with one of the following IDDs: attention deficit hyperactivity disorder, autism spectrum disorder, communication and language disorders, learning disabilities, and/or intellectual disability (recruiting even numbers of participants across these 5 IDD areas).
Exclusion Criteria, Parent Subject
- Do not read and write in English.
- Parent’s or caregiver’s child is participating with parent/caregiver support. A parent of a child who is participating in the study as a patient should not themselves also participate in the study as a parent. This will avoid any potential conflict of interest that may arise as the parents and caregivers of youth participants must be able to effectively advocate for the needs and welfare of the child participant.
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