Signs and symptoms of acromegaly at diagnosis: the physician\u2019s and the patient\u2019s perspectives in the ACRO-POLIS study

Philippe Caron,Philippe Chanson,Brigitte Delemer,Aude Houchard,Antoine Tabarin,Gérald Raverot,Fatine Elaraki,Thierry Brue,Peggy Pierre Renoult,Anne Cailleux

doi:10.1007/s12020-018-1764-4

Abstract

PurposeAcromegaly is characterized by a broad range of manifestations. Early diagnosis is key to treatment success, but is often delayed as symptomatology overlaps with common disorders. We investigated sign-and-symptom associations, demographics, and clinical characteristics at acromegaly diagnosis.MethodsObservational, cross-sectional, multicenter non-interventional study conducted at 25 hospital departments in France that treat acromegaly (ClinicalTrials.gov: NCT02012127). Adults diagnosed with acromegaly < 5 years were enrolled. Demographic and clinical data were obtained from medical reports and patient questionnaires. Sign-and-symptom associations were assessed by multiple correspondence analysis (MCA).ResultsOverall, 472 patients were included in the analyses. MCA was unsuccessful in identifying sign-and-symptom associations at diagnosis. Endocrinologists (29.5% patients) and other clinical specialists (37.2% patients) were commonly first to suspect acromegaly. Morphologic manifestations (83.7–87.9% patients), snoring syndrome (81.4% patients), and asthenia (79.2% patients) were frequently present at diagnosis; differences were found between sexes for specific manifestations. Rates of discrepancy between patient- and physician-reported manifestations were highest for functional signs. Earliest manifestations prior to diagnosis, according to how they were detected, were enlarged hands and feet (6.4 ± 6.8 and 6.2 ± 6.9 years, functional signs), hypertension (6.6 ± 7.5 years, complementary examination) and carpal/cubital tunnel syndrome (5.7 ± 6.7 years, functional signs with complementary examination).ConclusionsResults confirm the broad range of manifestations at diagnosis and delay in recognizing the disease. We identified early manifestations and sex differences that may aid physicians in diagnosing acromegaly. Discrepancy rates suggest physicians should obtain the patient’s perspective and seek functional signs during diagnosis.

Highlights

Electronic supplementary material The online version of this article contains supplementary material, which is available to authorized users.Hôpital Larrey, Toulouse, France 2 Aix-Marseille University, INSERM, MMG, AP-HM, Hôpital de la Conception, CRMR HYPO, Marseille, France 3 Groupement Hospitalier Est, Lyon, France 4 Hôpital Haut Lévêque-CHU de Bordeaux, Bordeaux, France 5 Rouen University Hospital, Endocrinology Unit, Inserm CIC-CRBAcromegaly is a rare [1], chronic, multisystem disease characterized by excessive growth hormone (GH) secretion and elevated insulin-like growth factor-1 (IGF-1) levels
More recent data suggest that the delay to acromegaly diagnosis is reduced to 3–6 years, a reduction that may be attributed to improved GH and IGF-1 assays, increased use of magnetic resonance imaging for the assessment of head-related complaints, increased acromegaly awareness among endocrinologists, and the increased availability of information to patients in the internet era [14,15,16,17]
BMI body mass index, CRF case report form, GH growth hormone, IGF-1 insulin-like growth factor-1, standard deviations (SDs) standard deviation, ULN upper limit of normal either did not initiate a visit or recruit a patient; two withdrew from the study before sending the patient questionnaire; and data were missing for one physician

Summary

Introduction

More recent data suggest that the delay to acromegaly diagnosis is reduced to 3–6 years, a reduction that may be attributed to improved GH and IGF-1 assays, increased use of magnetic resonance imaging for the assessment of head-related complaints, increased acromegaly awareness among endocrinologists, and the increased availability of information to patients in the internet era [14,15,16,17] Despite these improvements, difficulties in diagnosis still exist due to the insidious onset of clinical features, overlap of these with other common conditions, and lack of disease awareness among other medical specialists. Improving physician awareness of the signs, symptoms, and comorbidities of acromegaly remains key to early diagnosis [19]

Methods

Results

Conclusion