PIH29 - DEVELOPMENT OF A DECISION AID PROTOTYPE FOR PARENTS CONSIDERING TUBE FEEDING FOR THEIR CHILDREN

Abstract

Parents want to be more involved in medical decision-making for their children. However, the way information is provided in clinical practice might not facilitate shared decision-making (SDM) with physicians. We aimed to develop a Patient Decision Aid (PDA) prototype for parents considering enteral tube feeding options for their children to promote SDM. A PDA prototype was generated according to the International Patient Decision Aids Standards (IPDAS): 1) Establishing a steering committee (pediatric gastroenterologists [n=4] and parents [n=2]) to lead the project, 2) Conducting a needs and preferences assessment (literature review and focus groups with pediatricians and parents), and 3) Designing the PDA prototype. Input from healthcare professionals and parents was used to iteratively develop the PDA. The development of the final PDA will undergo two additional phases: pilot-testing (alpha-testing) with users to evaluate acceptability and field tests (beta-testing) in real life conditions. The PDA prototype addresses two feeding options: to start tube feeding (nasogastric or gastrostomy route) and the possibility to change the route of administration (continue with nasogastric or change to gastrostomy). The prototype approaches the main parts of a PDA, and reflects parents’ needs: 1) Information: general information on enteral feeding, comparison of feeding options, an exercise to detect problems in current feeding, frequently asked questions, parent experiences; 2) Preferences: a rating system (10-point scale) for values clarification, including statements to address the concerns and importance attributed to certain nasogastric and gastrostomy feeding issues; and 3) Resume of preferences and questions to be discussed with the physician. We developed a PDA prototype about feeding options following the systematic process proposed by IPDAS. The prototype will undergo two additional phases to check its acceptability and effectiveness. The final PDA will be ready for the use in clinical practice to promote SDM consistent with personal values.