Diagnosis and management of acromegaly: the patient’s perspective
- 829 Downloads
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.
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.
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.
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.
KeywordsAcromegaly Diagnosis Treatment Impairment Patient’s perspective
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.
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.
Compliance with ethical standards
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.
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 was obtained from all individual participants included in the study.
- 9.Reid TJ, Post KD, Bruce JN, Nabi Kanibir M, Reyes-Vidal CM, Freda PU (2010) Features at diagnosis of 324 patients with acromegaly did not change from 1981 to 2006: acromegaly remains under-recognized and under-diagnosed. Clin Endocrinol (Oxf) 72(2):203–208. doi: 10.1111/j.1365-2265.2009.03626.x CrossRefGoogle Scholar
- 10.Roset M, Merino-Montero S, Luque-Ramirez M, Webb SM, Lopez-Mondejar P, Salinas I, Soto A, Bernal C, Villabona C, De Luis D, Donnay S, Pascual H, Perez-Luis J (2012) Cost of clinical management of acromegaly in Spain. Clin Drug Investig 32(4):235–245. doi: 10.2165/11599680-000000000-00000 CrossRefPubMedGoogle Scholar
- 16.Sucunza N, Barahona MJ, Resmini E, Fernandez-Real JM, Farrerons J, Lluch P, Puig T, Wagner AM, Ricart W, Webb SM (2008) Gender dimorphism in body composition abnormalities in acromegaly: males are more affected than females. Eur J Endocrinol 159(6):773–779. doi: 10.1530/eje-08-0449 CrossRefPubMedGoogle Scholar
- 21.Mercado M, Gonzalez B, Vargas G, Ramirez C, de los Monteros AL, Sosa E, Jervis P, Roldan P, Mendoza V, Lopez-Felix B, Guinto G (2014) Successful mortality reduction and control of comorbidities in patients with acromegaly followed at a highly specialized multidisciplinary clinic. J Clin Endocrinol Metab 99(12):4438–4446. doi: 10.1210/jc.2014-2670 CrossRefPubMedGoogle Scholar
- 28.Kreitschmann-Andermahr I, Psaras T, Tsiogka M, Starz D, Kleist B, Siegel S, Milian M, Kohlmann J, Menzel C, Fuhrer-Sakel D, Honegger J, Sure U, Muller O, Buchfelder M (2015) From first symptoms to final diagnosis of Cushing’s disease: experiences of 176 patients. Eur J Endocrinol 172(3):285–289. doi: 10.1530/eje-14-0766 CrossRefPubMedGoogle Scholar