Daily life, needs and expectations of patients with acromegaly in France: An on-line survey

Abstract

Acromegaly can impair quality of life, but impact on patients’ daily life, needs and expectations have been poorly explored. ObjectivesTo better understand the impact of acromegaly on patients’ daily life, and evaluate their needs and expectations. Patients and methodsAn on-line questionnaire survey of acromegaly patient and relative community members was conducted on the Carenity website. ResultsTwenty-five patients and 3 relatives, with a mean age of 48.9 years, responded. Diagnosis of acromegaly was recent (60% within 10 years). Signs at diagnosis were mainly clinical (fatigue, headache) and physical changes (acral enlargement). Reported complications comprised morphological changes (93%), bone and joint symptoms (75%) and metabolic disorders (75%). Pain and fatigue impacted the daily life of 61% and 54% patients, respectively. Acromegaly had strong impact on mood (79%), leisure (75%) and social life (71%). Patients mostly got information from specialized websites (71%), their endocrinologist (61%) and patient associations (54%). The information sought was patient testimony (82%), practical advice (64%), and information on clinical trials (61%) and treatments (50%). Patients wished to have patient-physician discussion groups (25%), and better knowledge of acromegaly on the part of those they were in contact with (25%). ConclusionAcromegaly has a major impact on patients’ daily life and mood. Patients wished their disease to be better known, and advocated setting up discussion groups. This study should encourage acromegaly education programs to adapt the services and information that are needed by acromegalic patients.