Endocrine Abstracts

Acromegaly is a rare disease most commonly caused by benign pituitary adenomas producing excess growth hormone. A profound mismatch between biological control and symptom control creates a high disease burden despite optimal disease management. To learn more about the patient experience, Acromegaly Community hosted a virtual Externally Led Patient-Focused Drug Development meeting in January 2021. There were 304 registered attendees, including 128 people with acromegaly and their family members, caregivers, and friends; industry, advocacy, and regulatory representatives; scientists; and healthcare providers. A >90-page report¹ prepared by Acromegaly Community captures participants’ input on acromegaly symptoms and daily impacts and on current and future approaches to treatment, providing a valuable opportunity to learn about acromegaly directly from those most affected by it. We hereby summarize the key findings of the report. Overall acromegaly negatively impacts all aspects of daily living (Table 1). Fatigue/muscle weakness (reported by 92% of respondents) and joint problems/arthritis (90%) are the most commonly experienced and most troublesome symptoms (a top health concern of 63% and 65% of respondents, respectively). Some insightful statements pa include: ‘I struggle with simple tasks… lifting laundry, carrying groceries, or mowing my lawn and doing simple housework’ ‘Living with acromegaly affects patients’ mental health’.‘Mental illness tore apart my family.’ Anxiety/depression is experienced by 75% and is a top concern of 33% of respondents. acrorage and mo relationships. Most patients underwent pituitary surgery (83%) had with a wide range of surgical outcomes. Many require ongoing medical therapy, which is expensive, inconvenient, and frequently painful and can have severe side effects. Most patients have tried medications that reduce growth hormone secretion (71%), block its action (43%), or lower hormone levels (38%). Many patients use other medications to treat secondary symptoms such as diabetes and hypothyroidism (35%) and/or depression or anxiety (37%). Patients fail various combinations of medications before finding the right regimen. In the future, patients aspire more effective treatments for fatigue/muscle weakness and joint issues; more effective, tolerable, and easily administered drugs for biological and symptom control that shrink tumors; and effective treatments for hunger and weight gain, along with dietary advice and physical therapy.1. Acromegaly Community. Voice of the Patient: Living with Acromegaly. 20 October 2021.