# Self-Management of Adolescent and Young Adult Survivors of Childhood Cancer

> **NIH NIH R01** · CHILDREN'S HOSP OF PHILADELPHIA · 2020 · $587,539

## Abstract

Abstract
Because of significant treatment advances, over 80% of children diagnosed with cancer become long-
term survivors; however, 70% develop chronic or life threatening late effects from treatment, and these
often emerge during young adulthood. Detailed survivorship guidelines recommend annual long-term
follow-up care (LTFU) to manage and monitor for late effects and recurrent or new cancer. As risk for late
effects increases, engagement in cancer-related care plummets in young adulthood. Given adolescents
and young adults (AYA) with a history of cancer are understudied and underserved, it is not surprising
that reasons for the decline in LTFU across the transition to adulthood are elusive. Lack of transition
readiness (indicators that patient can begin, continue, and finish the transition process through the
transfer to adult-focused care) and self- management skills (ability to manage health conditions) may be
aspects of self-management related to such decline. To elucidate risk factors for and patterns of AYA
disengagement, we propose a prospective study of AYA survivorship self-management that focuses on
transition readiness, self-management skills, and engagement in LTFU. This study represents an
extension of Dr. Schwartz’s prior R21 (CA141332) developing and validating a social-ecological model of
transition readiness (SMART) and companion measure (TRI). TRI extends extant measures of self-
management and transition readiness, which mostly focus on skills, by also assessing broader social-
ecological components of SMART (e.g., goals, relationships, beliefs). Initial validity and factor structure of
the TRI item pool was established. Our current objectives are to: 1) finalize TRI via rigorous evaluation
and calibration methods employed in the development of PROMIS® measures, and 2) identify
determinants and patterns of survivorship self-management--transition readiness, self-management skills,
and engagement in LTFU--, and test the transactional relationship between these variables, by following
an initial cohort of 600 diverse AYA survivors across 3 sites for 2 years. We hypothesize that indictors of
self- management will be predicted by theoretically-informed and multi-factorial variables, and that
engagement in LTFU will influence, and be influenced by, transition readiness and self-management skills
over time. For those who are transferred to adult care, we will assess their experience at their last
pediatric appointment and whether or not that related to uptake of adult-oriented care. Thus, we will
continue our translational and multidisciplinary program of research by innovatively employing a
prospective design and state-of-the-art methods to finalize TRI and test a model of AYA self-management
related to engagement in LTFU. Results are critical for designing future interventions to enhance self-
management of AYA, ultimately informing best practices for survivorship care to sustain engagement and
well-being of AYA survivors. The s...

## Key facts

- **NIH application ID:** 9843521
- **Project number:** 5R01NR017429-02
- **Recipient organization:** CHILDREN'S HOSP OF PHILADELPHIA
- **Principal Investigator:** Lisa A Schwartz
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $587,539
- **Award type:** 5
- **Project period:** 2018-12-28 → 2023-11-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9843521

## Citation

> US National Institutes of Health, RePORTER application 9843521, Self-Management of Adolescent and Young Adult Survivors of Childhood Cancer (5R01NR017429-02). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/9843521. Licensed CC0.

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