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.
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 acromegalicpatients 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:Acromegalicpatients 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 acromegalicpatients 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 acromegalicpatients 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.
Authors: Roberto Salvatori; Murray B Gordon; Whitney W Woodmansee; Adriana G Ioachimescu; Don W Carver; Beloo Mirakhur; David Cox; Mark E Molitch Journal: Pituitary Date: 2017-12 Impact factor: 4.107
Authors: Adriana G Ioachimescu; Talin Handa; Neevi Goswami; Adlai L Pappy; Emir Veledar; Nelson M Oyesiku Journal: Endocrine Date: 2019-11-01 Impact factor: 3.633
Authors: John D Carmichael; Michael S Broder; Dasha Cherepanov; Eunice Chang; Adam Mamelak; Qayyim Said; Maureen P Neary; Vivien Bonert Journal: BMC Endocr Disord Date: 2017-08-04 Impact factor: 2.763