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Information Needs of Adolescent Transplant Recipients Transitioning to Adult Care

B. Kosmach-Park,1 D. Shellmer,2 C. Nguyen,3 G. Mazariegos.2

1Department of Transplant Surgery, Children's Hospital of Pittsburgh of UPMC, Pittsburgh, PA
2Hillman Center for Pediatric Transplantation, Children's Hospital of Pittsburgh of UPMC, Pittsburgh, PA
3Department of Pediatric Nephrology, Children's Hospital of Pittsburgh of UPMC, Pittsburgh, PA.

Meeting: 2018 American Transplant Congress

Abstract number: 383

Keywords: Pediatric, Psychosocial

Session Information

Session Name: Concurrent Session: Psychosocial and Treatment Adherence

Session Type: Concurrent Session

Date: Monday, June 4, 2018

Session Time: 4:30pm-6:00pm

 Presentation Time: 5:30pm-5:42pm

Location: Room 3AB

Background: As adolescent and young adult (AYA) tx recipients transition to adulthood, a parallel transition in care is essential. The AYA should achieve skills for transfer through a comprehensive transition program with interventions focusing on information that is most important to AYAs for appropriate engagement. Purpose: Assess information needs of AYAs to guide transition program planning. Method: Descriptive observational study; AYAs 11-18 yrs, >1 yr post-tx and caregivers of AYAs < 18 yrs. Instruments: Transition Topics Survey (TTS) & Needs Assessment Survey (NAS). TTS presents 16 transition topics for ranking. NAS assesses provider preference for topic discussion. Frequencies of endorsement & associations between frequencies were analyzed. Demos: AYAs (n=43), caregivers of AYAs <18 yr (n=20) & HCPs (n=25). Most AYAs were OLTx recipients (80.5%) and female (62.7%). Mean age:16.95 yrs (11-21 yr); mean time post-tx: 9.54 yrs (1.08-20 yr). HCPs (RNs/midlevels [68%] & MDs [20%]) had >5 yrs tx experience. Results: AYA/caregiver dyads endorsed ACR, infection, meds & risk-taking behaviors as most important. HCPs endorsed meds, ACR & adherence as most important. AYA mean scores were lower for most topics compared to caregiver and HCP scores. In comparing AYA/caregiver endorsements, AYA scores were significantly lower for ACR (p=0.005), meds (p= 0.001), risk-taking behaviors (p=0.005), infection (p=0.003), reproductive health (p=0.012), nutrition (p=0.002), pharmacy (p=0.013), lifestyle (p= 0.00). The most commonly endorsed topics (>70%) discussed with the AYA by HCP included adherence, school performance, and their future. AYAs preferred the tx team to discuss transition topics, except for risk-taking behaviors (78.6% vs 69%) and repro health (both 47.6%). Conclusions: AYAs and caregivers endorsed ACR, infection, meds, and risk-taking behaviors as most important in transition education, although rankings were significantly different reflecting the AYA's developmental level and maturity. A structured program that takes into consideration the AYA's information needs, which are supported by caregivers and recognized by HCPs, may improve engagement in transition, leading to successful transfer to adult care.

CITATION INFORMATION: Kosmach-Park B., Shellmer D., Nguyen C., Mazariegos G. Information Needs of Adolescent Transplant Recipients Transitioning to Adult Care Am J Transplant. 2017;17 (suppl 3).

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To cite this abstract in AMA style:

Kosmach-Park B, Shellmer D, Nguyen C, Mazariegos G. Information Needs of Adolescent Transplant Recipients Transitioning to Adult Care [abstract]. https://atcmeetingabstracts.com/abstract/information-needs-of-adolescent-transplant-recipients-transitioning-to-adult-care/. Accessed May 9, 2025.

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