Virtual education programming for patients with acromegaly: a pilot study

in European Journal of Endocrinology
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  • 1 Multidisciplinary Pituitary & Skull Base Tumor Center, Departments of Medicine and Neurosurgery, Memorial Sloan Kettering Cancer Center, New York, New York, USA
  • | 2 Neuroendocrine Unit, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts, USA

Correspondence should be addressed to E B Geer or L B Nachtigall; Email: geere@mskcc.org or lnachtigall@partners.org

*(E B Geer and J L Kilgallon contributed equally to this work)

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Objectives

To assess the impact of virtual education programming for patients with acromegaly.

Design

We conducted a mixed methods study 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.

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 for acromegaly and other rare diseases.

 

     European Society of Endocrinology

Sept 2018 onwards Past Year Past 30 Days
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