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The Feasibility and Acceptability of a Data Capture Methodology in Pediatric Cancer Patients Treated with Targeted

Karim Thomas Sadak1, Taiwo Opeyemi Aremu1, Seah Buttar1

  • 1University of Minnesota Masonic Children's Hospital, University of Minnesota Masonic Cancer Center, 420 Delaware St. SE-Mayo MMC 484, Minneapolis, MN 55455, USA.

Current Oncology (Toronto, Ont.)
|February 23, 2024
PubMed

Insights

Developing effective data capture methods is crucial for long-term childhood cancer survivor research. Engaging stakeholders ensures feasible and acceptable research protocols for better participant recruitment and satisfaction.

Area of Science:

  • Oncology
  • Pediatric Oncology
  • Cancer Survivorship Research

Background:

  • Advancements in childhood cancer treatments necessitate improved long-term monitoring.
  • Targeted agents and immunotherapies require evidence-based research methodologies for longitudinal care.
  • Limited research exists on data capture for pediatric, adolescent, and young adult cancer patients receiving novel therapies.

Purpose of the Study:

  • To assess the feasibility and acceptability of a data capture methodology.
  • To inform the delivery of care for pediatric, adolescent, and young adult cancer patients on targeted agents and immunotherapy.
  • To identify key factors influencing research protocol success.

Main Methods:

  • Pilot study involving thirty-two pediatric, adolescent, and young adult cancer patients.
  • Inclusion of two healthcare providers in data collection.
  • Descriptive statistics and thematic analyses were employed.
  • Feasibility assessed by participant attrition rates.
  • Acceptability evaluated through provider communication and participation convenience.

Main Results:

  • Participant attrition was within expected ranges, indicating feasibility.
  • Provider communication clarity and convenient participation were key drivers of acceptability.
  • Stakeholder input is vital for developing successful research protocols.

Conclusions:

  • Long-term follow-up research practices, co-developed with patients, caregivers, and providers, enhance feasibility and acceptability.
  • Optimized research protocols improve participant recruitment and satisfaction.
  • These evidence-based practices can be implemented as program development initiatives in cancer centers.
Keywords:
childhood cancerconsent discussionsurvivor

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