SAN FRANCISCO – Patients with acromegaly struggle with issues that they often don’t share with their physicians, and they have specific suggestions about actions that health care providers can take to help them cope with their disease, a qualitative study of 19 patients found.
Most described a long journey to a correct diagnosis, and other data suggest that an acromegaly diagnosis typically is delayed by 4-10 years. The delay is frustrating for patients but is followed by relief when they finally have a name for their disease, Michelle H. Gurel, R.N., reported at the Endocrine Society’s Annual Meeting.
She and her associates conducted online interviews with 10 patients recruited through AcromegalyCommunity.com and live interviews with 9 patients at the 2012 Acromegaly Community Conference.
Michelle H. Gurel
The patients said they were shocked at the idea of needing "brain surgery" (pituitary surgery) when discussing treatment with their physicians, and that they felt unsatisfied or left out of the treatment decision process.
Acromegaly is a rare chronic disease characterized by abnormal skeletal growth and soft tissue enlargement caused by excessive secretion of growth hormone by a pituitary adenoma.
Patients also hesitated to raise quality-of-life issues with their physicians and said they were concerned that health care providers did not care about quality of life. "Patients said that they were uncomfortable bringing this up; so you have to open the discussion," said Ms. Gurel of the neuroendocrine unit at Massachusetts General Hospital, Boston.
For a successful physician-patient partnership, patients want to feel that they are being listened to and treated as a person first and as someone with a disease second, they said. Health care providers should take the time to explain in detail the disease and treatment options, covering a slew of questions that patients had in four main categories: What is acromegaly? Will I ever feel like myself again? What is treatment like, and what will I experience? How do I survive financially?
Patients want to know why they are experiencing symptoms, feel bad, and no longer look like themselves, they said. They wonder if their levels of growth hormone and insulin-like growth factor 1 will return to normal, if symptoms will resolve, if the pain will stop, and if the disease can be cured. They question whether they will ever look like themselves again, feel energetic, live a normal life, and be able to forget, even for a moment, that they have acromegaly.
When discussing treatment, patients want to know why "brain surgery" is needed and how it will feel, as well as the pros and cons of radiation. They wonder why they have to take medications, and how to cope with side effects. Most of the medical therapies are expensive, raising questions about whether insurance will cover the costs, how to afford copays, and what happens if patients lose or change insurance.
Patients said they do want to be asked detailed questions about their quality of life during follow-up visits. They want health care providers who are educated about acromegaly and up-to-date in their knowledge of treatments, which they found mainly at Centers of Excellence and at pituitary centers, Ms. Gurel said. Patients wanted physicians to be aggressive in treatment without downplaying the patient’s physical, emotional, and psychological pain and suffering. "They felt stronger support from health care providers if they thought the physician cared," she said.
Nonphysician staff also are key to a successful partnership, patients said. Having a well-run office with courteous, friendly, and competent staff who can help patients with financial questions is important, from a patient’s point of view.
Participants in the study had a mean age of 43 years, and 12 of the 19 were female, although acromegaly generally affects men and women at the same rate. Among 10 patients who described their presenting symptoms, the most common were acral changes or changes in height, in six patients (60%). The disease presented with joint or muscle pain, diabetes, weight gain, headaches, and amenorrhea or an irregular menstrual cycle in 30% of patients each, and hypertension or visual changes affected 20% each at presentation. (Some patients had more than one symptom.)
Twelve of the 19 patients were currently being treated with somatostatin analogues (63%) and 3 with growth hormone receptor antagonists (16%), while 4 patients were not receiving medical therapy (21%) because they had been cured after surgery and/or radiation or because they had not yet chosen a medical therapy. Most medical therapies for acromegaly are expensive and are administered through injection, Ms. Gurel noted.