Education Tools to Support Pediatric Survivor Care

Predicting Childhood Cancer Survivors' Transition Readiness & Transfer Outcomes (SURV Transfer Outcomes) (Administrative Supplement to R01CA218389)

Status

Completed

Phases

Study type

Interventional

Source

ClinicalTrials.gov

Registry ID

NCT04257058

Enrollment

Registered

2020-02-05

Start date

2022-06-07

Completion date

2024-04-13

Last updated

2025-05-15

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Cancer, Pediatric Cancer

Keywords

Behavioral study, Social study, Pediatric cancer

Brief summary

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.

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.

Interventions

BEHAVIORALElectronic educational material

Electronic media via email

Study design

Allocation

Intervention model

SINGLE_GROUP

Primary purpose

SUPPORTIVE_CARE

Masking

NONE

Eligibility

Sex/Gender

ALL

Age

18 Years to 25 Years

Healthy volunteers

Yes

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 Cancer Survivor Program (CSP) in the past 2 years or transitioned out of the Aflac CSP to adult survivor care since 2013.

Exclusion criteria

* Patients 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.

Design outcomes

Primary

Measure	Time frame	Description
Survivor Care Knowledge Scale	Baseline, 2 weeks post-intervention	Knowledge was 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.

Secondary

Measure	Time frame	Description
Benefits for Survivor Care	Baseline, 2 weeks post-intervention	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.
Barriers for Survivor Care	Baseline, 2 weeks post-intervention	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.
Perceived Susceptibility for Late Effects	Baseline, 2 weeks post-intervention	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.
Intentions for Survivor Care	Baseline, 2 weeks post-intervention	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.
Change in Perceived Health Competence Scale (PHCS)	Baseline, 2 weeks post-intervention	8-item Perceived Health Competence Scale (PHCS). Total score ranges from 8-40. Lower score equals lower perceived health competence.

Countries

United States

Participant flow

Pre-assignment details

This study and the data presented below only refers to the young adult survivors and does not include parents. Parents were not enrolled in this study. Participants refer to young adult cancer survivors.

Participants by arm

Arm	Count
Electronic Educational Material Participants in the trial included young adult survivors of childhood cancer. Participants completed an online pre-test survey via REDCap. After the pre-test is completed, participants review electronic media in REDCap. Study staff confirmed review of material and scheduled a post-test survey to be competed in REDCap two weeks after material is reviewed.	89
Total	89

Withdrawals & dropouts

Period	Reason	FG000
Overall Study	Lost to Follow-up	31

Baseline characteristics

Characteristic	Electronic Educational Material
Age, Continuous	19.8 years STANDARD_DEVIATION 1.2
Ethnicity (NIH/OMB) Hispanic or Latino	26 Participants
Ethnicity (NIH/OMB) Not Hispanic or Latino	63 Participants
Ethnicity (NIH/OMB) Unknown or Not Reported	0 Participants
Race (NIH/OMB) American Indian or Alaska Native	2 Participants
Race (NIH/OMB) Asian	4 Participants
Race (NIH/OMB) Black or African American	20 Participants
Race (NIH/OMB) More than one race	3 Participants
Race (NIH/OMB) Native Hawaiian or Other Pacific Islander	0 Participants
Race (NIH/OMB) Unknown or Not Reported	4 Participants
Race (NIH/OMB) White	56 Participants
Region of Enrollment United States	89 participants
Sex/Gender, Customized Female	41 Participants
Sex/Gender, Customized Male	45 Participants
Sex/Gender, Customized Non-Binary	3 Participants

Adverse events

Event type	EG000 affected / at risk
deaths Total, all-cause mortality	0 / 89
other Total, other adverse events	0 / 89
serious Total, serious adverse events	2 / 89

Outcome results

Primary

Survivor Care Knowledge Scale

Knowledge was 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.