Most patients with acromegaly experience symptoms and significant side effects not only from their condition but also treatment. Now, researchers have developed Acro-TSQ, a new 29-item questionnaire designed to measure treatment-related burden or satisfaction.

Researchers presented data showing that this instrument appears to be beneficial. It is currently being validated in an ongoing study with 79 patients.

“Acro-TSQ, a novel acromegaly-specific treatment satisfaction questionnaire, was found to be comprehensive, clear, and relevant. Patients with acromegaly receiving injectable somatostatin analogs (SSAs) experience symptoms and side effects from their condition and from their treatment, which may impact daily life,” study investigator Maria Fleseriu, MD, professor of medicine and the director of the NW Pituitary Center Medicine at the Oregon Health & Science University in Portland.

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Acromegaly is a rare disease, and only 60 of 1 million people are believed to have from it. With acromegaly, too much growth hormone (GH) causes the liver to produce excessive amounts of insulin-like growth factor I (IGF-I), resulting in the swelling and growth of the soft tissues and organs.

Currently, SSAs are the standard of care. However, they are only administered via intramuscular or subcutaneous injections. The researchers note that an oral SSA formulation is in development, but there are currently no patient-reported outcome instruments. 

The researchers wanted to investigate treatment satisfaction/burden related to route of administration (oral vs injection). To do so, they conducted concept elicitation interviews with patients with acromegaly receiving SSA injections at a stable dose for at least 6 months. The questionnaire was drafted based on the knowledge derived from these interviews.

“The primary clinical benefit of Acro-TSQ is greater understanding of patients’ overall treatment satisfaction and burden related to long-acting injectable SSAs,” Dr Fleseriu told Endocrinology Advisor. “This understanding will help patients and physicians to make informed treatment decisions as alternative treatment options become available. Acro-TSQ also fosters a more comprehensive treatment approach by directing physicians to consider their patients’ quality of life in parallel with biochemical control.”

The researchers conducted combined concept elicitation and cognitive debriefing (CE/CD) interviews to confirm their original findings with the 29-item questionnaire. Dr Fleseriu said 19 patients completed interviews. Among these patients, 15 were treated with Somatuline (lanreotide injection, Ipsen) and 4 with Sandostatin (octreotide acetate for injectable suspension, Novartis).

The researchers found that 84% (16 of 19 patients) had breakthrough symptoms despite stable treatment. The most frequently reported symptoms were fatigue (69%), headaches (69%), joint pain (75%), and excessive sweating (31%). A very high number of patients (95%) reported injection site reactions, including pain, soreness, or tenderness (78%), lumps/nodules (67%), and bleeding (39%).

“Patients with acromegaly experience symptoms and side effects from their condition and treatment, which may impact daily life. There are currently no patient-reported outcome instruments available to assess treatment satisfaction/burden related to route of administration,” said Dr Fleseriu.

The researchers found that 57% reported feeling anxious about future injections. Another major concern were gastrointestinal side effects, with 94% reporting diarrhea, 61% reported abdominal pain/cramping, and 50% reported gas/ flatulence/bloating. About 89% said they had emotional impacts, such as frustration, anxiety, and sadness.

This article originally appeared on as a part of their coverage of the 2016 AACE Annual Scientific and Clinical Congress. 


  1. Fleseriu M, Fogelfeld L, Gordon M, et al. Abstract 1304. A Study to Develop a Novel Patient-Reported (PRO) Instrument to Assess Satisfaction With Acromegaly Treatment: The Acro-TSQ. Presented at: AACE 25th Annual Scientific & Clinical Congress; May 25-29, 2016; Orlando, FL.