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Long-term outcomes of patients with acromegaly : a report from the Swedish Pituitary Register

Arnardóttir, Steinunn ; Järås, Jacob ; Burman, Pia LU ; Berinder, Katarina ; Dahlqvist, Per ; Erfurth, Eva Marie LU ; Höybye, Charlotte ; Larsson, Karin LU ; Ragnarsson, Oskar and Ekman, Bertil , et al. (2022) In European Journal of Endocrinology 186(3). p.329-339
Abstract

Objective: To describe the treatment and long-term outcomes of patients with acromegaly from all healthcare regions in Sweden. Design and methods: Analysis of prospectively reported data from the Swedish Pituitary Register of 698 patients (51% females) with acromegaly diagnosed from 1991 to 2011. The latest clinical follow-up date was December 2012, while mortality data were collected for 28.5 years until June 2019. Results: The annual incidence was 3.7/million; 71% of patients had a macroadenoma, 18% had visual field defects, and 25% had at least one pituitary hormone deficiency. Eighty-two percent had pituitary surgery, 10% radiotherapy, and 39% medical treatment. At the 5- and 10-year follow-ups, insulin-like growth factor 1 levels... (More)

Objective: To describe the treatment and long-term outcomes of patients with acromegaly from all healthcare regions in Sweden. Design and methods: Analysis of prospectively reported data from the Swedish Pituitary Register of 698 patients (51% females) with acromegaly diagnosed from 1991 to 2011. The latest clinical follow-up date was December 2012, while mortality data were collected for 28.5 years until June 2019. Results: The annual incidence was 3.7/million; 71% of patients had a macroadenoma, 18% had visual field defects, and 25% had at least one pituitary hormone deficiency. Eighty-two percent had pituitary surgery, 10% radiotherapy, and 39% medical treatment. At the 5- and 10-year follow-ups, insulin-like growth factor 1 levels were within the reference range in 69 and 78% of patients, respectively. In linear regression, the proportion of patients with biochemical control including adjuvant therapy at 10 years follow-up increased over time by 1.23% per year. The standardized mortality ratio (SMR) (95% CI) for all patients was 1.29 (1.11-1.49). For patients with biochemical control at the latest follow-up, SMR was not increased, neither among patients diagnosed between 1991 and 2000, SMR: 1.06 (0.85-1.33) nor between 2001 and2011, SMR: 0.87 (0.61-1.24). In contrast, non-controlled patients at the latest follow-up from both decades had elevated SMR, 1.90 (1.33-2.72) and 1.98 (1.24-3.14), respectively. Conclusions: The proportion of patients with biochemical control increased over time. Patients with biochemically controlled acromegaly have normal life expectancy, while non-controlled patients still have increased mortality. The high rate of macroadenomas and unchanged age at diagnosis illustrates the need for improvements in the management of patients with acromegaly.

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organization
publishing date
type
Contribution to journal
publication status
published
subject
in
European Journal of Endocrinology
volume
186
issue
3
pages
11 pages
publisher
Society of the European Journal of Endocrinology
external identifiers
  • pmid:35007208
  • scopus:85123969482
ISSN
1479-683X
DOI
10.1530/EJE-21-0729
language
English
LU publication?
yes
id
4c14ee64-3c9d-4298-8fff-b7f17e6bc682
date added to LUP
2022-04-07 14:54:23
date last changed
2024-04-26 06:11:24
@article{4c14ee64-3c9d-4298-8fff-b7f17e6bc682,
  abstract     = {{<p>Objective: To describe the treatment and long-term outcomes of patients with acromegaly from all healthcare regions in Sweden. Design and methods: Analysis of prospectively reported data from the Swedish Pituitary Register of 698 patients (51% females) with acromegaly diagnosed from 1991 to 2011. The latest clinical follow-up date was December 2012, while mortality data were collected for 28.5 years until June 2019. Results: The annual incidence was 3.7/million; 71% of patients had a macroadenoma, 18% had visual field defects, and 25% had at least one pituitary hormone deficiency. Eighty-two percent had pituitary surgery, 10% radiotherapy, and 39% medical treatment. At the 5- and 10-year follow-ups, insulin-like growth factor 1 levels were within the reference range in 69 and 78% of patients, respectively. In linear regression, the proportion of patients with biochemical control including adjuvant therapy at 10 years follow-up increased over time by 1.23% per year. The standardized mortality ratio (SMR) (95% CI) for all patients was 1.29 (1.11-1.49). For patients with biochemical control at the latest follow-up, SMR was not increased, neither among patients diagnosed between 1991 and 2000, SMR: 1.06 (0.85-1.33) nor between 2001 and2011, SMR: 0.87 (0.61-1.24). In contrast, non-controlled patients at the latest follow-up from both decades had elevated SMR, 1.90 (1.33-2.72) and 1.98 (1.24-3.14), respectively. Conclusions: The proportion of patients with biochemical control increased over time. Patients with biochemically controlled acromegaly have normal life expectancy, while non-controlled patients still have increased mortality. The high rate of macroadenomas and unchanged age at diagnosis illustrates the need for improvements in the management of patients with acromegaly.</p>}},
  author       = {{Arnardóttir, Steinunn and Järås, Jacob and Burman, Pia and Berinder, Katarina and Dahlqvist, Per and Erfurth, Eva Marie and Höybye, Charlotte and Larsson, Karin and Ragnarsson, Oskar and Ekman, Bertil and Edén Engström, Britt}},
  issn         = {{1479-683X}},
  language     = {{eng}},
  number       = {{3}},
  pages        = {{329--339}},
  publisher    = {{Society of the European Journal of Endocrinology}},
  series       = {{European Journal of Endocrinology}},
  title        = {{Long-term outcomes of patients with acromegaly : a report from the Swedish Pituitary Register}},
  url          = {{http://dx.doi.org/10.1530/EJE-21-0729}},
  doi          = {{10.1530/EJE-21-0729}},
  volume       = {{186}},
  year         = {{2022}},
}