Virtual Education Programming for Patients with Acromegaly: A Pilot Study

Access to expert acromegaly knowledge and care is limited, and perceptions between patients and providers differ. This study aims to evaluate patient attitudes, examine if patient-centered educational forums change these attitudes, and determine the role of virtual education as a means to learn about patients’ unmet needs, self-reported outcomes, and educational priorities.

Methods:

The study included 653 total virtual program registrants. Of these, 78 patients with acromegaly were included in the analysis. The programs consisted of patient-centered livestream education by a multidisciplinary team of pituitary experts and patient presenters. Multiple-choice questions were used to assess attitudes before and after the event, and short answer surveys were used to collect care goals and unmet needs related to treatment.

Results:

Attendance included participants from 37 countries. The number of patients who responded that they had no hope for improvement, had no choice in their treatment, and felt alone living with acromegaly each decreased significantly pre- to post-event (p < 0.05). The number of patients who felt anxious about their acromegaly diagnosis remained unchanged. “Quality of Life/Mental Health” was the most common personal care goals concern followed by “Medical Therapies/Tumor Control.” Perceived acromegaly unmet needs were evenly distributed, with five of six categories reported by over 20% of patients.

Discussion/Conclusion:

Our findings indicate that virtual education may have a significant positive effect on acromegaly patients’ perceptions of their disease. The lessons learned from these virtual programs may be used to inform future virtual education programming, not only for acromegaly, but for other rare diseases.