An interventional study of REACH for Independence and Transition Consult in Chronic Health Condition and Cognitive Disability, sponsored by Children's Hospital of Philadelphia. Completed at 1 site in United States. Open to participants aged 19 Years and older. Per ClinicalTrials.gov, last updated 2023-10-13.
Sponsored by Children's Hospital of Philadelphia · Not applicable, Interventional, and Supportive care
This study is looking at ways to help young people with chronic health conditions take better care of their health and find an adult doctor.
The purpose of this study is to determine whether providing targeted transition-related skills through interventions with varying degrees of intensity (from the low intensity Basic intervention group, to the mild intensity Group Intervention group, to the high intensity Full Intervention group) results in improved transition readiness and self-care skills and improved successful transition to adult-based services for young adults with chronic health conditions. Secondary objectives include determining if the transition interventions enhance transition-related satisfaction among participants, their caregivers and the involved pediatric and adult providers.
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Young Adult Inclusion Criteria:
Young Adult Exclusion Criteria:
Caregiver Inclusion Criteria:
Caregiver Exclusion Criteria:
Group 1 will be the control group. They will complete questionnaires but will otherwise receive usual care from their Primary Care Provider (PCP). At the end of the study period they will be given the Study Materials for participating.
Other: Study Materials
Group 3 (Group Intervention) will receive the Study Materials at the beginning of the study and will also be invited to attend two REACH for Independence group sessions.
Behavioral: REACH for Independence · Other: Study Materials
Group 4 (Full Intervention) will receive the Study Materials at the beginning of the study, will be invited to attend the REACH for Independence group sessions, and will be invited to a Transition Consult with an MD and social worker.
Behavioral: REACH for Independence · Behavioral: Transition Consult · Other: Study Materials
Group 2 (Basic Intervention) will receive the Study Materials at the beginning of the study but will otherwise continue with their usual PCP care.
Other: Study Materials
REACH for Independence is a transition and self-care skill-building peer support group led by a social worker. It is comprised of two 2.5-hour group sessions where participants participate in activities designed to teach self-care, self-advocacy and improve transition to adulthood skills.
The transition consult is a 1-on-1 visit with an MD and social worker. At the consults, participants will receive individualized information related to their unique medical and psychosocial needs and support related to issues relevant to their gaining healthcare independence and finding an adult doctor, such as accommodations, transportation, insurance and finances. After the consult, this group will have access to a transition coordinator who can help with any transition-related problems that may occur.
The Study Materials include a Care Binder, a Resource list, an Adult Doctor List and a Wallet Card. The Care Binder is an organizational tool to help patients with special healthcare needs manage and track important information related to their health and medical care. The Resource list has information about important community resources. The Adult Doctor List provides information about finding an adult primary care provider. The Wallet Card is a sheet for tracking important medical and personal information.
Successful transition to an adult provider
The primary outcome is successful transition to an adult provider, as evidenced by at least 1 visit with an adult provider within 10 months of the baseline visit.
Time frame: 10 months
Increased self-care and transition related skills
Self-care and transition related skills will be measured pre- and post- intervention with the Transition Readiness Assessment Questionnaire (TRAQ). The TRAQ is a validated 33-item self-administered tool that measures skills needed to progress towards independence in key areas of life like education and work as well as skills needed to successfully transition from pediatric to adult healthcare. The TRAQ will be completed over the phone or via an online survey with young adult participants and their caregivers at baseline and at the 6-month follow-up visit.
Time frame: 6 months
Participant satisfaction with the intervention
Self-reported satisfaction with the intervention will be assessed at 6-months post-baseline via a phone interview or online survey.
Time frame: 6 months
This study is completed, as verified in Oct 2023. You cannot join it, but the record below documents what was studied.
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Children's Hospital of Philadelphia