INteractive survivorship program to improve health care REsources [INSPIRE]: A study protocol testing a digital intervention with stepped care telehealth to improve outcomes for adolescent and young adult survivors Journal Article


Authors: Yi, J. C.; Ballard, S.; Walsh, C.; Friedman, D. N.; Ganz, P. A.; Jacobs, L. A.; Partridge, A. H.; Mitchell, S. A.; Leisenring, W. M.; Syrjala, K. L.; Baker, K. S.
Article Title: INteractive survivorship program to improve health care REsources [INSPIRE]: A study protocol testing a digital intervention with stepped care telehealth to improve outcomes for adolescent and young adult survivors
Abstract: Background: Adolescents and young adults with cancer (AYAs, ages 15–39 at the time of diagnosis) experience significant adverse health and psychosocial outcomes. AYAs live with emotional distress and health care demands that exceed those of their healthy peers but can have difficulty accessing care. Digitally delivered interventions are an attractive option for AYA survivors, a population that routinely utilizes online resources when seeking health information and support. Aim: By improving access to survivorship resources and support and strengthening health literacy and self-management skills, the INteractive Survivorship Program to Improve Health care REsources [INSPIRE] is designed to improve adherence to AYA health care guidelines and reduce cancer-related distress. We describe the protocol for a two-arm randomized controlled trial (RCT) testing the AYA-adapted INSPIRE program. Methods/Design: The intervention includes an interactive mobile app, study website, and social media platforms, adding telehealth for those with continued distress, lower survivorship health care literacy, or poor engagement with the digital program at 6 weeks. Participants are randomized to INSPIRE or an active control. In the active control arm, survivors receive access to a study website with links to existing AYA survivor resources followed by delayed access to the INSPIRE program. Participants are not blinded; study staff not providing telehealth are blinded. The primary outcomes are cancer-related distress and health care adherence specific to second cancer and cardiometabolic screenings. Discussion: If effective, the program is positioned for accelerated implementation to improve care for AYA survivors by using a scalable informatics-based administration and largely digital intervention program. © 2024 Elsevier Inc.
Keywords: adolescent; adult; controlled study; leukemia; young adult; major clinical study; hypertension; treatment planning; colorectal cancer; melanoma; breast cancer; randomized controlled trial; radiation exposure; cancer survivor; sarcoma; intervention study; depression; mammography; colonoscopy; heart failure; heart infarction; skin examination; lymphoma; distress syndrome; dyslipidemia; insulin resistance; thyroid cancer; abdominal obesity; clinical practice guideline; anthracycline; information science; health care access; cerebrovascular accident; emotional stress; atherogenesis; self care; health literacy; impaired glucose tolerance; e-mail; health care need; protocol compliance; survivorship care plan; telehealth; social media; human; male; female; article; adolescent and young adult; internet access; personalized cancer therapy; patient engagement; patient health questionnaire 8; digital health; unmet medical need; problem solving therapy; digital intervention; stepped care; adolescent and young adults with cancer; interactive survivorship program to improve health care resources; mouth examination
Journal Title: Contemporary Clinical Trials
Volume: 148
ISSN: 1551-7144
Publisher: Elsevier Inc.  
Date Published: 2025-01-01
Start Page: 107745
Language: English
DOI: 10.1016/j.cct.2024.107745
PROVIDER: scopus
PUBMED: 39561920
PMCID: PMC11700757
DOI/URL:
Notes: Article -- Source: Scopus
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  1. Danielle Novetsky Friedman
    111 Friedman