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Pia Burman

Physician

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Development of ACRODAT®, a new software medical device to assess disease activity in patients with acromegaly

Author

  • Aart Jan van der Lely
  • Roy Gomez
  • Andreas Pleil
  • Xavier Badia
  • Thierry Brue
  • Michael Buchfelder
  • Pia Burman
  • David Clemmons
  • Ezio Ghigo
  • Jens Otto Lunde Jørgensen
  • Anton Luger
  • Joli van der Lans-Bussemaker
  • Susan M. Webb
  • Christian J Strasburger

Summary, in English

Purpose: Despite availability of multimodal treatment options for acromegaly, achievement of long-term disease control is suboptimal in a significant number of patients. Furthermore, disease control as defined by biochemical normalization may not always show concordance with disease-related symptoms or patient’s perceived quality of life. We developed and validated a tool to measure disease activity in acromegaly to support decision-making in clinical practice. Methods: An international expert panel (n = 10) convened to define the most critical indicators of disease activity. Patient scenarios were constructed based on these chosen parameters. Subsequently, a panel of 21 renowned endocrinologists at pituitary centers (Europe and Canada) categorized each scenario as stable, mild, or significant disease activity in an online validation study. Results: From expert opinion, five parameters emerged as the best overall indicators to evaluate disease activity: insulin-like growth factor I (IGF-I) level, tumor status, presence of comorbidities (cardiovascular disease, diabetes, sleep apnea), symptoms, and health-related quality of life. In the validation study, IGF-I and tumor status became the predominant parameters selected for classification of patients with moderate or severe disease activity. If IGF-I level was ≤1.2x upper limit of normal and tumor size not significantly increased, the remaining three parameters contributed to the decision in a compensatory manner. Conclusion: The validation study underlined IGF-I and tumor status for routine clinical decision-making, whereas patient-oriented outcome measures received less medical attention. An Acromegaly Disease Activity Tool (ACRODAT) is in development that might assist clinicians towards a more holistic approach to patient management in acromegaly.

Department/s

  • Genomics, Diabetes and Endocrinology

Publishing year

2017-09-08

Language

English

Pages

692-701

Publication/Series

Pituitary

Volume

20

Issue

6

Document type

Journal article

Publisher

Springer

Topic

  • Endocrinology and Diabetes

Keywords

  • ACRODAT
  • Acromegaly
  • AcroQoL
  • Patient-reported outcomes

Status

Published

Research group

  • Genomics, Diabetes and Endocrinology

ISBN/ISSN/Other

  • ISSN: 1386-341X