Daily life, needs and expectations of patients with acromegaly in France: An on-line survey.
Acromegaly can impair quality of life, but impact on patients' daily life, needs and expectations have been poorly explored.


OBJECTIVES
To better understand the impact of acromegaly on patients' daily life, and evaluate their needs and expectations.


PATIENTS AND METHODS
An on-line questionnaire survey of acromegaly patient and relative community members was conducted on the Carenity website.


RESULTS
Twenty-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%).


CONCLUSION
Acromegaly 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.
['Albarel|Frédérique|F|', 'Elaraki|Fatine|F|', 'Delemer|Brigitte|B|']
D000172:Acromegaly D000203:Activities of Daily Living D000293:Adolescent D000328:Adult D000368:Aged D000369:Aged, 80 and over D017281:Cost of Illness D005260:Female D005602:France D006301:Health Services Needs and Demand D006801:Humans D020407:Internet D008297:Male D008875:Middle Aged D009042:Motivation D011788:Quality of Life D011795:Surveys and Questionnaires D055815:Young Adult
Daily life Needs Expectations Acromegaly Impact Acromégalie Attentes Besoins Enquête internet Retentissement Vie quotidienne e-Survey