title: Patients lost to follow-up in acromegaly: results of the ACROSPECT study.
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.
  
  
  METHODS
  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.
authors.affiliation: Service d'Endocrinologie-Diabète-Nutrition, CHU de Reims-Hôpital Robert-Debré, 51092 Reims, France.
authors.forename: B
authors.initials: B
authors.lastname: Delemer
authors.forename: Ph
authors.initials: P
authors.lastname: Chanson
authors.forename: L
authors.initials: L
authors.lastname: Foubert
authors.forename: F
authors.initials: F
authors.lastname: Borson-Chazot
authors.forename: O
authors.initials: O
authors.lastname: Chabre
authors.forename: A
authors.initials: A
authors.lastname: Tabarin
authors.forename: G
authors.initials: G
authors.lastname: Weryha
authors.forename: C
authors.initials: C
authors.lastname: Cortet-Rudelli
authors.forename: I
authors.initials: I
authors.lastname: Raingeard
authors.forename: Y
authors.initials: Y
authors.lastname: Reznik
authors.forename: C
authors.initials: C
authors.lastname: Reines
authors.forename: S
authors.initials: S
authors.lastname: Bisot-Locard
authors.forename: F
authors.initials: F
authors.lastname: Castinetti
mesh_terms: D000172:Acromegaly / Q000209:etiology / Q000517:prevention & control*; D000236:Adenoma / Q000503:physiopathology / Q000517:prevention & control / Q000601:surgery / Q000628:therapy*; D000293:Adolescent; D000328:Adult; D000368:Aged; D002648:Child; D015331:Cohort Studies; D003430:Cross-Sectional Studies; D018450:Disease Progression; D005260:Female; D005602:France / Q000453:epidemiology; D049912:Growth Hormone-Secreting Pituitary Adenoma / Q000503:physiopathology / Q000517:prevention & control / Q000601:surgery / Q000628:therapy*; D006801:Humans; D059012:Lost to Follow-Up; D008297:Male; D008499:Medical Records; D009364:Neoplasm Recurrence, Local / Q000453:epidemiology / Q000517:prevention & control; D012042:Registries; D012189:Retrospective Studies; D062606:Tertiary Care Centers