Perceptions of Acromegaly Severity, Symptoms Differ Between Providers and Patients

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Researchers found several discrepancies in perception of disease outcomes between patients with acromegaly and their providers.

Although medical providers are aware that their patients with acromegaly regularly experience symptoms, there are discrepancies between patient and provider perceptions concerning the frequency, severity, and pattern of symptoms and injection site reactions during treatment, according to study results published in Pituitary.

The cross-sectional United States-based study consisted of adult patients aged 18 to <95 years with acromegaly recruited from members of the Acromegaly Community, Inc online group. Eligible patients were required to be on a stable dose of injectable somatostatin receptor ligands (octreotide or lanreotide) and have seen an endocrinologist for acromegaly within the past year. Patients completed an online survey and the Acromegaly Treatment Satisfaction Questionnaire (Acro-TSQ). Their medical providers were interviewed about the perception of their patient’s symptoms and general health and also completed relevant portions of the questionnaire. Data were then examined for concordance between patients and medical providers.

The final analysis looked at data from 47 patient-medical provider pairs. Overall, 80% of patients were women with a mean age of 49±12.3 years and a mean disease duration of 10±8.1 years. Researchers determined that concordance between patients and medical providers was generally low when discussing patient symptomology. For example, patients reported each type of injection-site reaction more often than providers, with the largest discrepancies in pain during the injection (90% vs 66%, respectively) and nodules (68% vs 43%, respectively).

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Prevalence of symptoms themselves also differed, with 87% of patients reporting general forgetfulness or short-term memory loss (acro-fog), followed by 81% reporting fatigue, weakness, or tiredness and 75% reporting snoring. However, providers reported that fatigue/weakness/tiredness was most prevalent in their patients (92%), followed by joint pain (75%), and headache (62%). Furthermore, patients could specify that their symptoms occurred constantly or at the end of their cycle, whereas their providers commonly reported that they were not sure when their patients’ symptoms occurred.

Perceptions of symptom control also differed between patients and providers. Most notably, 43% of patients reported that their symptoms were partially controlled compared with 64% of the providers. Overall, patients rated their general health as slightly worse than medical providers did.

The study was limited by the self-reported nature of the patient data, which was given by a cohort of volunteers recruited using social media who were receiving stable somatostatin receptor ligand treatment. The results may not be reflective of other patient populations with acromegaly.

“The data presented in our study provide a platform for the [experience of patients with acromegaly] living with this chronic condition, hopefully raising awareness about the discrepancies between the medical providers’ and patients’ assessment of disease outcomes,” wrote the researchers. “Our findings show that management of patients with acromegaly should incorporate regular open communication between doctor and patient, and [highlight] the need to incorporate patient reported outcomes in the management of acromegaly.”

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Geer EB, Sisco J, Adelman DT, et al. Observed discordance between outcomes reported by acromegaly patients and their treating endocrinology medical provider [published online December 5, 2019]. Pituitary. doi:10.1007/s11102-019-01013-2