Endocrine Abstracts

Background: Acromegaly is a slowly progressive rare disease caused by an increase in growth hormone secretion that causes a subsequent rise in insulin-like growth factor (IGF-1), both contributing to the excessive growth of the extremities, soft tissues and organs, in addition to other comorbidities directly interfering with patient’s quality of life. Acromegaly patients are concerned about their disease and their treatments, however, publications about patient’s opinion towards their disease and treatments are scarce.

Objective: The aim of this study was to gain further insight into the Spanish acromegaly patients’ perspective on their disease, unmet needs and treatment preferences.

Methods: A qualitative study was carried out to determine the attributes and levels of the quantitative. Two-hour-group interviews, comprising 4 and 5 adult patients each, took place in Madrid and Barcelona (September 2019). The group dynamics were conducted by an experienced moderator. The quantitative study was designed as a discrete choice experiment.142 patients were initially invited to complete the online survey; however, only 67 patients completed the questionnaire. Choice-based conjoint analyses were used to estimate the utilities and values for treatment attributes. Subject preferences were estimated at aggregated levels. Using a Bayesian hierarchical modelling, the percentage of levels and attributes were transformed in utilities.

Results: QoL stood out as the most important attribute for respondents (37%), and IGF-1 together with glucose blood level and tumour size control (Table. 1), were the most important attributes according to participants. The pain associated to the treatment administration method was a secondary attribute. Diarrhoea, administration methods and storage conditions were the less important attributes according to participants and were only relevant for the treatment choice.

Conclusion: Despite acromegaly patients showing a high degree of awareness about the importance of IGF1 levels and tumour size control, our results point out the great relevance that patients award to Health-Related Quality of Life. Notably, patients showed great concern about glycemic level alteration, as well as the levels of IGF-1 and the tumor size. Patients’ opinion should be taken in consideration when prescribing a treatment, as these patients show high knowledge and awareness about the management of their condition.