"(Patients) felt stronger support from health care providers if they thought the physician cared."
Treatment histories from 10 patients showed that 9 had undergone surgery since diagnosis, 2 had radiotherapy, 3 were treated with one medication, 4 had tried two medications, 1 patient had been treated with three drugs, and 2 patients had gone through four medications. (Patients could report more than one treatment category.)
Because patients felt left out of the treatment decision process, they felt motivated to talk to other patients, and many used online resources for support such as AcromegalyCommunity.com or other disease-specific websites. Patients who were not connected to a patient support group reported feeling lonely and helpless. Many of the patients expressed a desire to help improve knowledge about acromegaly in order to shorten the time to diagnosis for future patients.
Acromegaly typically appears in the fourth decade of life, with an annual incidence of 3 or 4 patients per million and a prevalence of 40-90 cases per million people. People with acromegaly are more likely to develop hypertension and heart disease, cardiovascular events and headaches, arthritis and acral changes, sleep apnea, and insulin-resistant diabetes. The disease is associated with premature death, with a doubling or tripling of mortality risk.
Most patients with acromegaly are treated with surgery. Medical therapies include the somatostatin analogues lanreotide and octreotide, the growth hormone receptor antagonist pegvisomant, or the dopamine agonist cabergoline.
The study was funded by Ipsen Biopharmaceuticals, which makes lanreotide (Somatuline). Ms. Gurel reported having no other financial disclosures.
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