Preference of acromegaly patients for treatment attributes in Spain

Abstract

Objective: Acromegaly is a rare disease caused by increased growth hormone secretion and a subsequent increase in insulin-like growth factor I (IGF-I) levels. Patients display multiple comorbidities that affect their quality of life (QoL). Treatment aims to maintain good biochemical control, tumour control, and reduce the risk of comorbidities; however, their impact on QoL has been overlooked until recently. We interviewed patients to explore their preferences with regard to treatment attributes.Design: Cross-sectional study based on interviews and a discrete choice experiment (DCE) in a Spanish cohort.Methods: Adult patients diagnosed with acromegaly ≥1 year before the start of the study and under treatment were included. Treatment attributes were collected from patient testimony during face-to-face interviews. Then, a DCE was performed to elicit patient preferences for certain treatment attributes.Results: Sixty-seven patients completed the study. QoL improvement was the most important treatment attribute (37%), followed by IGF-I control (20%), blood sugar control (17%), and tumour control (13%). Secondary attributes were pain associated with the route of administration (7%), diarrhoea (2%), administration method (2%), and storage conditions (2%). We then calculated the theoretical share of preference for existing treatments, based on the individual preference utility for each attribute and level. Pegvisomant obtained the highest share of preference overall, and the highest preference as a second-line treatment (53% and 95%, respectively). Conclusions:QoL greatly influences patient treatment preference. Since acromegaly patients are informed and aware of their disease, treatment choice should always be shared with patients.(244/250) SIGNIFICANT STATEMENTAcromegaly is a rare disease that progresses slowly, and diagnosis is usually delayed 2-10 years. Patients will develop physical disfigurement, diabetes, increased risk of cardiovascular pathologies, impaired quality of life (QoL), and shortened life-expectancy.Patient opinion has traditionally been overlooked when choosing treatment, which is mainly focused on improving clinical manifestations irrespective of its impact on QoL. We conducted a series of interviews and a discrete-choice experiment in 67 on-treatment patients to determine their priorities when receiving a treatment. We discovered that QoL improvement is the most important treatment attribute for patients, followed by biochemical control, sugar blood control, and tumour control. Patients showed they are well informed and aware of their disease; therefore, treatment choice should be shared with them.