Kudos to Sharron Docherty, associate professor, Gary Maslow from the School of Medicine, and their entire team for the submission of their NIH/NCI U01 multi-PI application entitled: “Peer i-Coaching for Activated Self-Management Optimization in Young Adult Cancer Survivors and their Parents.” This proposal requests funding for a 5-year period with a start date of July 1, 2020.

Abstract

Survivors of adolescent and young adult (AYA) cancer who live in rural areas have higher non-cancer mortality rates than those living in urban areas. The challenges facing AYA survivors in general are magnified by living in a rural area, as the barriers to remaining in care, proximity of providers, availability of family supports, and financial opportunity are greater. These challenges are layered onto the significant biopsychosocial change these rural living AYAs face as they transition from active treatment into maintenance and long-term follow-up. Such changes require adaptation on behalf of the AYA and their parents that brings negotiations of new statuses and abandonment of old ones. Family dependency decreases for AYAs as they gain new freedoms and are expected to accept greater responsibility for management of their cancer survivorship needs. The over-reliance on parents and health care providers for their health management and surveillance of potential negative physical and mental health outcomes associated with long-term cancer survivorship, impedes developing the independence necessary for successful transition into active survivorship. To achieve the goal of developing more autonomous cancer survivorship self-management of AYAs living in rural areas, they must have the opportunity to develop competency in the domains of decision-making, health maintenance, and system navigation. Parents also struggle with altering their role from active decision-making agent to one more closely aligned with support and encouragement, while contending with their own conflicting emotions of joy and anxiety related to their child’s cancer survivorship. Peer support in the form of young adult and parent coaching is well-suited to address challenges theorized as critical to AYA cancer survivors and their parents given the substantial decrease in health care interactions and monitoring and the potential for isolation and distress during this transition. We propose a mixed-methods, 5-year randomized controlled trial that will include 180 AYAs (18-26 years) living in rural areas of the state of NC, who are within three years of completion of active cancer treatment, and their parent, to test the Peer i-Coaching for Activated Self-Management Optimization (PiCASO) intervention versus an attention control group. This novel, dyadic, mobile health technology intervention utilizes a secure interface to allow AYAs and their parents access to the knowledge, experience, and instrumental/emotional support from a trained peer coach (21-30 years) who has already transitioned to post-treatment survivorship and who is an independent, active self-manager, or a parent peer coach who is the parent of a young adult who has transitioned to post treatment survivorship and independent self-management. We will determine the efficacy of PiCASO on self-management and patient activation across 6 months. We will explore whether age, sex, race/ethnicity, cancer condition, and level of rurality moderate the trajectory of PiCASO effects on activated self-management, Lastly, we will explore change in dyadic relationship and mechanisms of the PiCASO impact.