Patient-Centered Clinical Effectiveness Research Priorities for Transitioning Children with Cancer from Hospital to Home
Emily Mueller, MD
Primary Investigator
Brief description of study
What is the purpose of this study?
The purpose of this study is to study the transition from an inpatient hospital admission to being at home by engaging with caregivers (parents, legal guardians, etc) of children of cancer as well as with healthcare providers that participate in this process with the families. We plan on using qualitative research methods to gather input from these stakeholders to co-design a prioritized research strategy that includes specific caregiver-centered outcomes measures for children with cancer and future intervention directed towards this important process for families, ultimately with the goal if impacting patient and caregiver well-being.
Detailed description of study
What will happen during the study?
The primary objective is to create a comprehensive, prioritized strategy that includes a list of patient-centered research (CER) topics for the transition from hospital to home for children with cancer. Secondary objectives are to create a list of patient-centered outcome measures that could be used to evaluate CER and a plan for how to include caregivers in future proposals.
The aims and specific steps for this project are:
Aim 1. Explore key elements for transitioning children with cancer from hospital settings to home. A human-centered design approach will be used to engage with caregivers to identify the key elements of the transition process. Engagement with HCPs will add the additional layer of clinical experience and perspectives on feasible, actionable CER projects that could address the key elements of transition. This information will be synthesized and presented to the invested partners in the next Aim.
Aim 2. Create and refine a prioritized strategy. Use a structured group discussion technique (Nominal Group Technique) to engage caregivers of children with cancer, clinical providers, and research experts to develop a prioritized strategy for the transition from hospital to home for children with cancer, including a list of patient-centered CER topics and patient-centered outcome measures.
Eligibility of study
You may be eligible for this study if you meet the following criteria:
- Conditions: Cancer, RIley
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Age: 17 years or below
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Gender: All
Inclusion Criteria (Caregiver)
• Participants must be a caregiver (parent, legal guardian, grandparent, etc.) to a child with cancer.
• Caregivers must be English-speaking (study sessions are in English only)
• Caregivers must be at least 18 years old.
• Caregivers must be actively engaged in the care of their child with cancer at both hospital and home settings.
• The child must be between the ages of 0 and 17 years old.
• The child must currently be undergoing therapy (chemotherapy, radiation, etc.)
• The child must be at least 1 month since a diagnosis of cancer.
Exclusion Criteria (Caregiver)
• Not a caregiver (parent, legal guardian, grandparent, etc.) to a child with cancer.
• The caregiver cannot speak, read, or write in English.
• The caregiver is under the age of 18.
• The caregiver does not actively participate in the care of their child at either the hospital, their home, or both.
• The child is age 18 or older.
• The child is currently not undergoing therapy (chemotherapy, radiation, etc.)
• The child has been diagnosed with cancer less than 1 month ago.
Inclusion Criteria Healthcare Provider (HCP)
• Must be employed as a pediatric oncologist, nurse, social worker, discharge navigator, teacher, or patient experience advocate at Riley Hospital for Children.
• Must be involved in the hospital to home transition for children with cancer at Riley Hospital for Children.
Exclusion Criteria (HCP)
• Not employed as a pediatric oncologist, nurse, social worker, discharge navigator, teacher, or patient experience advocate at Riley Hospital for Children.
• Not involved in the hospital to home transition for children with cancer at Riley Hospital for Children.
