Education Tools to Support Pediatric Survivor Care

Evaluating Education Tools to Support Pediatric Cancer Survivor Care Across the Lifespan (Administrative Supplement to R01CA218389)

This study aims to evaluate the impact of electronic educational materials on adolescent and young adult ("AYA") survivors' knowledge about late effects, perceived benefits, self-efficacy, and intentions to engage in lifelong survivor care.

Study Overview

• Status: Recruiting
• Conditions: Cancer; Pediatric Cancer
• Intervention / Treatment: Behavioral: Electronic educational material

Detailed Description

Despite increased risk for morbidity and mortality related to cancer treatment, over half of young adult survivors of childhood cancer do not engage in the recommended healthcare designed to detect late effects and secondary cancers. There is a scarcity of data on adherence to survivor-focused healthcare, particularly at the critical transition from pediatrics to adult care. In order to improve transition outcomes, the investigators need to create media to educate survivors about need for adherence to adult survivor healthcare.

This study aims to evaluate the impact of electronic educational materials on AYA survivors' knowledge about late effects, perceived benefits, self-efficacy, and intentions to engage in lifelong survivor care.

• Study Type: Interventional
• Enrollment (Estimated): 58
• Phase: Not Applicable

Contacts and Locations

• Study Contact: Name: Jordan Marchak, PhD; Phone Number: 404-727-2293; Email: jgillel@emory.edu

Study Locations

• United States
  • Georgia
    • Atlanta, Georgia, United States, 30322
      • Recruiting
      • Children's Healthcare of Atlanta
      • Contact: Jordan Marchak, MD; Email: jgillel@emory.edu

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years to 25 years (Adult)
• Accepts Healthy Volunteers: Yes

Description

Inclusion Criteria:

• Patients must be 18-25 years of age,
• Diagnosed with cancer at ≤ 18 years of age,
• ≥ 2 years since the last cancer treatment,
• seen at least once in the Aflac CSP in the past 2 years or transitioned out of the Aflac CSP to adult survivor care since 2013.

Exclusion Criteria:

• Patients and/or parents will be excluded from participation in the study if the participant is non-English speaking.
• Young adult survivors who are cognitively impaired and unable to complete the questionnaires.
• Participants that do not consent to the recording of their interviews.

Study Plan

How is the study designed?

Design Details

• Primary Purpose: Supportive Care
• Allocation: N/A
• Interventional Model: Single Group Assignment
• Masking: None (Open Label)

Number of Arms

1

Arms and Interventions

Participant Group / Arm	Intervention / Treatment
Experimental: Electronic educational material; Participants will complete an online pre-test survey via REDCap. One week after the pre-test survey is completed, AYAs will be sent electronic media via email to review on their own. Study staff will confirm receipt and review of material and schedule a post-test survey to be completed in REDCap two weeks after material is reviewed.	Behavioral: Electronic educational material; Electronic media via email

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Change in knowledge	Knowledge will be assessed at baseline and 2 weeks post-intervention, with the Survivor Care Knowledge scale, that includes 15-item multiple-choice quiz to assess participants' knowledge of the content covered in the electronic educational materials previously provided. Total score ranges from 0-15. Higher score is associated with better outcome.	Baseline, 2 weeks post-intervention

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Change in Champion Benefits Scale for Mammography screening	5-item study adapted Champion Benefits Scale for Mammography Screening. Total score ranges from 5-25. Lower score equals fewer perceived benefits of survivor care	Baseline, 2 weeks post-intervention
Change in Champion Barriers Scale for Mammography Screening	11-item study adapted Champion Barriers Scale for Mammography Screening. Total score ranges from 11-55. Lower score equals fewer perceived barriers to survivor care	Baseline, 2 weeks post-intervention
Change in Champion Susceptibility Scale for Mammography Screening	3-item study adapted Champion Susceptibility Scale for Mammography Screening. Total score ranges from 3-15. Lower score equals less susceptibility to late effects of treatment	Baseline, 2 weeks post-intervention
Change in Intentions for survivor care	2-item study adapted Ajzen's Theory of Planned Behavior- Intentions. Total score ranges from 2-14. Lower score equals greater intention to engage in long-term follow-up care	Baseline, 2 weeks post-intervention
Change in Perceived Health Competence Scale (PHCS)	8-item Perceived Health Competence Scale (PHCS). total score ranges from 8-40. Lower score equals lower perceived health competence	Baseline, 2 weeks post-intervention

Collaborators and Investigators

• Sponsor: Emory University
• Collaborators: National Cancer Institute (NCI)
• Investigators: Principal Investigator: Jordan Marchak, PhD, Emory University

Study record dates

Study Major Dates

• Study Start (Actual): June 7, 2022
• Primary Completion (Estimated): May 1, 2024
• Study Completion (Estimated): May 1, 2024

Study Registration Dates

• First Submitted: February 4, 2020
• First Submitted That Met QC Criteria: February 4, 2020
• First Posted (Actual): February 5, 2020

Study Record Updates

• Last Update Posted (Actual): April 23, 2024
• Last Update Submitted That Met QC Criteria: April 22, 2024
• Last Verified: April 1, 2024

More Information

Terms related to this study

• Keywords: Pediatric cancer; Behavioral study; Social study
• Other Study ID Numbers: IRB00091839; R01CA218389 (U.S. NIH Grant/Contract)

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No