Decision Aid for Nutrition Support in Pediatric Oncology: A Pilot Study

JPEN J Parenter Enteral Nutr. 2017 Nov;41(8):1336-1347. doi: 10.1177/0148607116661840. Epub 2016 Aug 8.

Abstract

Background: Despite the importance of nutrition support in preventing malnutrition in pediatric oncology, the decision to initiate and choose which nutrition support method is most appropriate can be difficult for parents and healthcare professionals. Decision aids are decision-focused patient information materials. They can improve knowledge, reduce decisional conflict, improve patients' risk perception, and increase patient participation in the decision-making process. They have never been evaluated for pediatric oncology nutrition decisions. We aimed to develop and pilot test a decision aid to assist parents making these decisions in collaboration with their healthcare team.

Materials and methods: The decision aid was developed in accordance with the International Patient Decision Aid Standards guidelines and evaluated in a single-center pilot study. The parents and healthcare professionals of pediatric oncology patients were eligible. Participants read the decision aid and completed a questionnaire assessing acceptability, usability, and improvement in understanding.

Results: Thirty-one parents and 15 healthcare professionals participated. Parents found the decision aid balanced, relevant, and satisfactory overall. Some parents reported the decision aid was too long (26%). Healthcare professionals positively rated the development process, usefulness to parents, and content and format of the decision aid. Forty-three percent reported that using the decision aid would save them time. There were no significant associations between health literacy, decisional satisfaction, decisional regret, acceptability, and improvement in understanding.

Conclusion: The decision aid appears acceptable and usable for our target population. Decision aid feedback provided critical data to make modifications before evaluating the decision aid in a randomized controlled trial.

Keywords: child; decision making; decision support techniques; neoplasms; nutrition support.

Publication types

  • Observational Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Child
  • Child, Preschool
  • Decision Making
  • Decision Support Techniques*
  • Female
  • Humans
  • Infant
  • Male
  • Middle Aged
  • Neoplasms / therapy*
  • Nutritional Support*
  • Patient Participation
  • Pediatrics
  • Pilot Projects
  • Surveys and Questionnaires
  • Young Adult