Disease burden, treatment experiences and preferences in patients with acromegaly: a qualitative study

TL;DR

This study explores how acromegaly affects patients' lives and their treatment preferences, finding that patients prefer less frequent treatments and prioritize efficacy and safety.

Contribution

The study provides new insights into patient-reported treatment burdens and preferences in acromegaly, highlighting a preference for less frequent treatment options.

Findings

Patients reported symptoms like swelling, fatigue, and excessive sweating, impacting social life and causing anxiety.

Monthly injectable treatments caused burdens like unpleasant injections and travel, with over half preferring daily oral treatments.

Patients preferred hypothetical 3-monthly injections over monthly ones if equally effective and recommended by doctors.

Abstract

Acromegaly is a rare disease with limited treatment options. Understanding treatment burden and patient preferences is important for evaluating new treatments and optimizing adherence.

Patients with acromegaly (≥18 years) from the United States (US) participated in qualitative semi-structured interviews to explore: 1) the impact of acromegaly on quality of life, 2) patients’ experiences with current treatment, 3) preferences for new treatments.

Fifteen US patients with acromegaly participated, reporting a range of symptoms; physical changes/swelling, fatigue/tiredness and excessive sweating. Frequently reported impacts included limited socializing (n = 6), anxiety (n = 4), embarrassment due to sweating/odor (n = 4) and clothing adaptations due to swelling (n = 4). Frequently reported impacts associated with monthly injectable treatment included unpleasantness of injections/blood tests (n = 6), clinic waiting time (n = 5), travelling to the clinic (n = 3), and treatment frequency (n = 3). Over half of patients preferred daily oral treatment options (n = 8, 53.3%). When asked about preference around hypothetical treatment frequency, 60.0% (n=9) preferred a hypothetical 3-monthly injection compared to a monthly injection if it was as efficacious as the monthly injection or recommended by their doctor.

Patients experience a wide range of symptoms and impacts, with a high burden of treatment associated with monthly injections. Patients demonstrated preferences for less frequent treatments, with a preference for reducing their current monthly injections to three or six monthly. When considering new treatments, the efficacy and safety profile were of most importance to patients with acromegaly.

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