Preference of acromegaly patients for treatment attributes in Spain

ObjectiveAcromegaly 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.DesignA cross-sectional study based on interviews and a discrete choice experiment (DCE) in a Spanish cohort.MethodsAdult patients diagnosed with acromegaly & GE;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.ResultsSixty-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).ConclusionsQoL greatly influences patient treatment preference. Since acromegaly patients are informed and aware of their disease, treatment choices should always be shared with patients.

Automated summary

This study investigated the preferences of patients with a rare disease for treatment attributes. It found that quality of life improvement was the most important attribute, followed by control of IGF-I levels, blood sugar control, and tumor control. The study also found that secondary attributes such as side effects and treatment method also influenced patients' choices.