Abstract

BackgroundAcromegaly patients managed on Somatostatin receptor ligands (SRLs), the most common first-line pharmacotherapy for acromegaly, may still experience acromegaly symptoms such as headache, sweating, fatigue, soft tissue swelling, and joint pain, even those with normal IGF-1. Additionally, treatment with SRLs may cause injection site reactions and other side effects such as gastro-intestinal (GI) symptoms. This study utilized patient-reported outcome measures to examine the burden associated with acromegaly and its treatment for patients receiving a stable dose of long-acting SRLs in routine clinical practice.MethodsUS acromegaly patients on a stable dose of SRL seen by their treating healthcare provider in the past 12 months completed a one-time online survey including the Acro-TSQ, an acromegaly-specific tool for assessing symptom burden and treatment satisfaction and convenience.ResultsOne hundred five patients were enrolled (mean age 49.9 years, 79.1% female). Patients experienced numerous symptoms, including > 80% who experienced joint pain, acro-fog, swelling of soft tissue, and fatigue/weakness. Many symptoms occurred constantly, while some occurred at the end of the injection cycle, even among those with IGF-1 < = 1.0 ULN. Injection site reactions were common. Patients were moderately satisfied with their current treatment; symptoms and side effects often affected daily activities. On average, patients reported > 3 acromegaly provider visits/year.ConclusionsDespite receiving a stable dose of SRL and regular visits with an acromegaly healthcare provider, US acromegaly patients in routine clinical practice, and even the subgroup with normal IGF-1, report significant burden of disease and treatment.

Highlights

  • Patients managed on Somatostatin receptor ligands (SRLs), the most common first-line pharmacotherapy for acromegaly, may still experience acromegaly symptoms such as headache, sweating, fatigue, soft tissue swelling, and joint pain, even those with normal IGF-1

  • Current treatment options for acromegaly come with limitations: potential side effects associated with SRLs include injection site reactions and gastro-intestinal (GI) symptoms [7, 8], and patients managed on SRLs, even those with normal IGF-1, may still experience acromegaly symptoms that interfere with daily life, leisure, and work [9]

  • To be eligible for the study, patients needed to be currently treated with first generation injectable SRLs including octreotide or lanreotide for ≥12 months with no adjustment in dose during or following their most recent acromegaly health care provider (HCP) office visit, and were required to have been evaluated by their treating acromegaly HCP within the past12 months

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Summary

Introduction

Patients managed on Somatostatin receptor ligands (SRLs), the most common first-line pharmacotherapy for acromegaly, may still experience acromegaly symptoms such as headache, sweating, fatigue, soft tissue swelling, and joint pain, even those with normal IGF-1. Treatment with SRLs may cause injection site reactions and other side effects such as gastro-intestinal (GI) symptoms. Somatostatin receptor ligands (SRLs) are the most common first-line medical therapy [5, 6] and are administered as either intramuscular (octreotide) or deep subcutaneous injections (lanreotide). Current treatment options for acromegaly come with limitations: potential side effects associated with SRLs include injection site reactions and gastro-intestinal (GI) symptoms [7, 8], and patients managed on SRLs, even those with normal IGF-1, may still experience acromegaly symptoms that interfere with daily life, leisure, and work [9].

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