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Virtual education programming for patients with acromegaly: a pilot study.

Eliza B Geer1, John L Kilgallon2, Karen J P Liebert2

  • 1Multidisciplinary Pituitary & Skull Base Tumor Center, Departments of Medicine and Neurosurgery, Memorial Sloan Kettering Cancer Center, New York, New York, USA.

European Journal of Endocrinology
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Summary
This summary is machine-generated.

Virtual education significantly improved acromegaly patient outlooks, reducing feelings of hopelessness and isolation. This programming offers valuable insights for future rare disease patient education initiatives.

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Area of Science:

  • Endocrinology
  • Patient Education
  • Digital Health

Background:

  • Acromegaly is a rare hormonal disorder with significant patient impact.
  • Effective patient education is crucial for managing chronic conditions like acromegaly.
  • Virtual platforms offer a scalable solution for patient engagement and education.

Purpose of the Study:

  • To evaluate the impact of virtual education on acromegaly patients' attitudes.
  • To assess patient-centered educational forums' effectiveness in changing attitudes.
  • To identify unmet needs and educational priorities through virtual programs.

Main Methods:

  • Mixed methods study involving 78 acromegaly patients from 653 registrants.
  • Patient-centered, livestreamed education by multidisciplinary experts and patients.
  • Pre- and post-event surveys (multiple-choice and short answer) assessed attitudes, goals, and needs.

Main Results:

  • Significant decrease in patient hopelessness, lack of treatment choice, and feelings of isolation post-event (P < 0.05).
  • Anxiety levels regarding acromegaly diagnosis remained unchanged.
  • 'Quality of life/mental health' and 'medical therapies/tumor control' were key concerns; unmet needs were widespread.

Conclusions:

  • Virtual education positively impacts acromegaly patients' disease perception.
  • Learnings from this study can inform future virtual education for acromegaly and rare diseases.
  • Digital health interventions show promise for improving rare disease patient outcomes.