Endocrine Abstracts

Background: Patients report a variety of persisting symptoms that reduce their quality of life after treatment for non-functioning pituitary adenomas (NFPA). Digital tools have the potential to improve patient-provider communication and patient outcomes by giving opportunities for patients to report their current status, which can be helpful in recognizing symptoms and identifying needs. Mapping patients’ symptoms, needs and preferences prior to the consultation can aid in preparation, set the agenda for the consultation and facilitate involvement in the decision-making processes.

Aim: The aim was to map symptoms, needs and preferences for software features that should be included in the development of a digital communication tool, InvolveMe, to support shared decision making in the follow-up of patients with NFPA.

Method: A combination of interviews with patients and a focus group with health care providers (HCP) was conducted. Participants were recruited from an outpatient clinic at a tertiary referral center with long lasting experience in treating pituitary patients. Data were analyzed using thematic analyses, which informed the content and software development. The development process was supported by more tool development workshops.

Results: Analyses from interviews with patients (n = 5) and a focus group with HCPs (n = 5) generated tree main themes: 1) Making symptoms and challenges visible, 2) Mastering a new life, and 3) Digital opportunities for follow-up. Theme 1 and 2 gave input for content development of the symptom and needs assessment part of the tool. The patients expressed need for a variety of bodily symptoms and psychosocial challenges to be addressed, including pain, fatigue, anxiety and loneliness. The patients described the need for work related support and information related to living a healthy life with the newly established condition. Theme 3 provided input for software development of the InvolveMe tool, including integration with an existing patient portal already in use by patients and providers. The HCPs perspective was in line with and elaborated on the patient perspective. Tool development workshops with patients (n = 3) and HCPs (n = 3) supplemented the development process and ensured that important topics were discussed and further elaborated.

Conclusion: Inclusion of content and software features relevant and meaningful for patients as well as HCPs was ensured by stakeholder involvement, from study initiation through exploration, design and development. To explore usability and potential effects of the InvolveMe tool, a feasibility pilot is currently in progress testing content and software features in clinical practice and context.