OS02.5.A DEVELOPMENT OF A PATIENT DECISION AID FOR PATIENTS WITH RECURRENT HIGH-GRADE GLIOMA - A CO-CREATION PROCESS

Abstract

Abstract BACKGROUND Patients with high-grade gliomas (HGG) face a difficult decision when the tumor recurs. There are no curable treatments, and all palliative treatment options include risks of complications and adverse effects. In this situation, support is needed for patients to navigate between these trade-offs and make preference-sensitive decisions. Shared decision making (SDM) is an approach where a decision is made in collaboration between a clinician and a patient by combining the clinician’s scientific evidence and knowledge with the patient’s subjective values and preferences. SDM aims to make quality decisions congruent with the individual patient’s informed preferences and to support patients in the decisional process. Patient decision aids (PtDA’s) have proven to be an efficient tool for facilitating SDM. However, there are no PtDA’s available for patients with recurrent HGG. This study aimed to develop a PtDA in a co-creation process with patients with recurrent HGG and family caregivers MATERIAL AND METHODS Based on the International Patient Decision Aids Standards, our team developed a PtDA through an iterative process of drafting and re-drafting. Patients and family caregivers were involved throughout the process as active team members. The PtDA was alpha-tested using structured interviews and the Preparation for Decision Making Scale questionnaire to assess the understandability, acceptability, and perceived usefulness of the PtDA. Data were analyzed using descriptive statistics and a directed content-analysis approach. RESULTS The final draft of the PtDA contained six treatment and care options, including the option of doing nothing. A balanced presentation of benefits and disadvantages was described for each option. In the alpha test, 31 patients with HGG, family caregivers, and clinicians assessed the final draft of the PtDA and found it to be understandable and acceptable. Patients and family caregivers perceived the PtDA to have a higher level of usefulness in supporting and preparing for decision making than did the clinicians (p=0.05). Ten of 11 clinicians were willing to use the PtDA in future consultations. CONCLUSION The PtDA was assessed to be understandable and acceptable by patients, family caregivers, and clinicians. It was perceived to support and prepare patients with recurrent HGG for decision making, and the clinicians were willing to use it in consultations. The involvement of patients and family caregivers as team members added value to the development process and the PtDA. However, the most applicable model of patient involvement in neurooncological research must be further explored to identify the benefits and limitations of approaches.