Abstract
Objective The complex management of acromegaly has transformed this
disease into a chronic condition, with the risk of patients being lost to
follow-up. The objective of this study was to estimate the proportion of
acromegalic patients lost to follow-up in France and to determine the impact
that abandoning follow-up has on the disease and its management.
Design ACROSPECT was a French national, multicentre, cross-sectional,
observational study.
Methods Acromegalic patients were considered lost to follow-up if no new
information had been entered in their hospital records during the previous 2
years. They were traced where possible, and data were collected by means of
a recall visit or questionnaire.
Results In the study population, 21% of the 2392 acromegalic patients initially
followed in 25 tertiary endocrinology centres were lost to follow-up. At their
last follow-up visit, 30% were uncontrolled, 33% were receiving medical
therapy and 53% had residual tumour. Of the 362 traced, 62 had died and
77% were receiving follow-up elsewhere; the leading reason for abandoning
follow-up was that they had not been informed that it was necessary. Our
analysis of the questionnaires suggests that they were not receiving optimal
follow-up.
Conclusions This study underlines the need to better inform acromegalic
patients of the need for long-term follow-up, the absence of which could be
detrimental to patients' health, and to develop shared care for what must now
be regarded as a chronic disease.