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Diagnosis and management of acromegaly: the patient’s perspective

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Abstract

Purpose

Early diagnosis is a success factor for the prevention of long-term comorbidity and premature death in patients with acromegaly, but large-scale data on the diagnostic process and disease management are scarce. Therefore, we aimed to evaluate the diagnostic process, implementation of treatment and changes in life situation in patients with acromegaly, focusing on sex-specific differences.

Methods

Non-interventional patient-reported outcome study. 165 patients with clinically and biochemically proven acromegaly were questioned about the diagnostic process and utilization of health care by means of a self-developed standardized postal survey including questions on acromegaly symptoms experienced before diagnosis, number and specialty of consulted doctors, time to diagnosis and aftercare.

Results

The diagnostic process took 2.9 (SD 4.53) years, during which 3.4 (SD 2.99) physicians were consulted. Women waited longer [4.1 (SD 5.53) years] than men [1.6 (SD 2.69) years; p = 0.001] for the correct diagnosis, and consulted more doctors in the process [4.0 (SD 2.99) vs. 2.7 (SD 2.84) doctors, p < 0.001, respectively]. In 48.5 % of patients, acromegaly was diagnosed by an endocrinologist (men: 45.1 %; women: 52.4 %). Overall disease duration from symptom onset until last surgery was 5.5 (SD 6.85) years, with no sex differences. A change in employment status was the most commonly reported event after diagnosis and a quarter of the patients stated that the illness had changed their lives.

Conclusions

Our findings confirm the urgent need to increase awareness of the clinical manifestation of acromegaly to facilitate an earlier diagnosis of the disease and to provide diagnostic equality across the sexes.

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Acknowledgments

This study was performed when the first two authors worked full-time at the Department of Neurosurgery, University of Erlangen-Nuremberg. Some of the data were collected during the time in which J. Kohlmann completed his doctoral thesis.

Funding

The study was supported by an independent investigator-initiated grant from Ipsen, Germany. Editorial support and linguistic corrections were provided by Anna Bagińska MSc and Ashley Cooper BSc (Hons 1)/BJ from Proper Medical Writing Sp. z o.o., Poland, and funded by Ipsen, Germany.

Author information

Authors and Affiliations

  1. Department of Neurosurgery, University of Duisburg-Essen, Hufelandstr. 55, 45147, Essen, Germany

    Ilonka Kreitschmann-Andermahr, Sonja Siegel & Bernadette Kleist

  2. Department of Neurosurgery, Friedrich-Alexander University (FAU) of Erlangen-Nuremberg, Schwabachanlage 6, 91031, Erlangen, Germany

    Ilonka Kreitschmann-Andermahr, Sonja Siegel, Johannes Kohlmann, Daniel Starz & Michael Buchfelder

  3. Institute of Neuropathology, Friedrich-Alexander University (FAU) of Erlangen-Nuremberg, Schwabachanlage 6, 91031, Erlangen, Germany

    Rolf Buslei

  4. Department of Women’s and Children’s Health, Uppsala University, Akademiska Sjukhuset, 751 85, Uppsala, Sweden

    Maria Koltowska-Häggström

  5. Department of Endocrinology, Diabetes and Nutritional Medicine, Charité Universitaetsmedizin, Campus Charité Mitte, Charitéplatz 1, 10117, Berlin, Germany

    Christian J. Strasburger

Authors
  1. Ilonka Kreitschmann-Andermahr
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  2. Sonja Siegel
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  3. Bernadette Kleist
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  4. Johannes Kohlmann
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  5. Daniel Starz
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  6. Rolf Buslei
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  7. Maria Koltowska-Häggström
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  8. Christian J. Strasburger
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  9. Michael Buchfelder
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Corresponding author

Correspondence to Ilonka Kreitschmann-Andermahr.

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Conflict of interest

I. Kreitschmann-Andermahr, S. Siegel, B. Kleist, J. Kohlmann, R. Buslei, C.J. Strasburger, and M. Buchfelder have received speaker honoraria, travel grants, research grants and/or consultancy fees from companies manufacturing acromegaly medications, such as Ipsen, Novartis, CHIASMA and/or Pfizer. M. Koltowska-Häggström is a consultant to StrongBridge Biopharma. D. Starz declares no conflict of interest.

Ethical standards

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

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Kreitschmann-Andermahr, I., Siegel, S., Kleist, B. et al. Diagnosis and management of acromegaly: the patient’s perspective. Pituitary 19, 268–276 (2016). https://doi.org/10.1007/s11102-015-0702-1

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