Patients and Doctors on Different Pages for Acromegaly Symptoms

Nancy A. Melville

January 07, 2020

Clinicians who treat patients with acromegaly commonly show a lack of awareness of the severity and pattern of patient symptoms that can occur even when treatment suggests the condition is under control, according to new research.

"Compared with patients, medical providers tended to report fewer acromegaly symptoms and injection site reactions, and rated general health higher [than patient reports]," write the authors of the study, recently published in the journal Pituitary.

Acromegaly, an endocrine disorder characterized by changes in facial appearance and enlargement of the hands and feet, is typically treated with somatostatin receptor ligands (SRLs).

However, even when the over-production of growth hormone and insulin-like growth factor (IGF-1) that cause the disorder are brought to normal levels with the medication, patients may continue to experience symptoms.

In the first study of its kind to evaluate concordance regarding symptoms, treatment satisfaction, and general health between clinicians and patients with acromegaly, Eliza B. Geer, MD, Memorial Sloan Kettering Cancer Center, New York City, and colleagues, conducted an online survey with 47 pairs of patients with acromegaly — who were on a stable dose of SRLs — and their medical providers. Patient self-reports were compared with those of their physician.  

The patients and clinicians in the cross-sectional study were recruited by the US-based Acromegaly Community, a patient support group, through social media and at clinical practices in the United States. The study was funded by Chiasma, which is developing an oral formulation of maintenance therapy for adults with acromegaly.

Nicholas Tritos, MD, DSc, who was not involved in the study, told Medscape Medical News the new research points to the need for a heightened focus on communication in the treatment of acromegaly.

"The findings of the present study are intriguing and suggest that there may be lack of sufficient communication between patients with acromegaly and their healthcare professionals — at least in some cases," said Tritos, an associate professor in the Neuroendocrine and Pituitary Clinical Center and Neuroendocrine Unit at Massachusetts General Hospital, Harvard Medical School, in Boston.

"Larger studies are needed to confirm these findings, however," he said. "The use of validated symptom scores may help improve communication between patients with acromegaly and their healthcare professionals."

Most Common Symptom Reported by Patients Is "Acro-Fog"

In acromegaly, a rare but severe disease that is often diagnosed late, morbidity and mortality rates are high, particularly as a result of associated cardiovascular, cerebrovascular, and respiratory disorders and malignancies.

Of the adult patients surveyed, 83% were women and the mean age was 49 years. Patients had a mean duration of acromegaly of 10 years, and 47% were being treated with octreotide and 53% with lanreotide, with most receiving low to middle doses.

Their mean medical provider-reported IGF-1 level was 0.85 upper limit of normal (ULN), with 79% of patients having an IGF-1 level of 1 ULN or lower.

For the online survey, patients were asked about disease characteristics and management, and they also completed the Acromegaly Treatment Satisfaction Questionnaire (Acro-TSQ). The latter is an acromegaly-specific patient-reported outcomes assessment of symptoms and gastrointestinal interference, treatment satisfaction, injection site interference, emotional reaction, and treatment convenience.

The medical providers were interviewed about their practices and perceptions of the patients' symptoms, level of control, and general health, and they also completed relevant sections of the Acro-TSQ.

The most common symptoms reported by patients were "acro-fog," described as a general forgetfulness or short-term memory loss, and joint pain (81% for both), soft tissue swelling (79%), fatigue/weakness/tiredness (77%), and headache (72%).

However, the most common patient symptoms reported by medical providers differed, led by fatigue/weakness/tired (92%) followed by joint pain (75%) and headache (62%).

Symptoms most often viewed by patients as severe were joint pain (described as severe by 34%), headache (29%), fatigue/weakness/tired (28%), and acro-fog (26%).

With the exception of carpal tunnel syndrome, clinicians were less likely than patients to rate any of the other symptoms as severe.

In addition, although patients specified a worsening of multiple symptoms toward the end of the treatment cycle, clinicians commonly reporting being "not sure" of when patients experienced symptoms.

Findings Suggest an "Unmet Need"

Patients and clinicians both reported various injection site reactions; however, the medical providers reported fewer injection site reactions than patients and were often unaware of the severity of the reactions.

The largest discrepancies involved nodules (43% reported by medical providers vs 68% by patients) and pain during injection (66% vs 90%).

When asked about their general perception of symptom control, 38% of patients indicated their symptoms were "well controlled," 43% reported they were "partially controlled," and 17% reported they were "not controlled."

Comparatively, 28% of medical providers indicated their patient's symptoms were well-controlled, 64% said they were "partially controlled," and 6% said they were "not controlled."

Although the patient and clinician differences were not evaluated for statistical significance, the authors note that "the low kappa statistics reflect the generally poor agreement between medical providers' and patients' responses of symptom frequency, severity, and pattern."

Current treatment guidelines recommend that when patients receiving SRLs achieve IGF-1 levels of 1 ULN or less, adjustments to treatment are not necessary, and data are lacking on whether SRL dose titration can reduce symptom burden when IGF-1 levels are 1 ULN or less.

However, the new results suggest "these patients are still symptomatic and that the frequency and severity of symptoms is often unrecognized by their treating physician," the authors write.

"This suggests an unmet need," they state.

Efforts to Prevent Symptoms Early in Disease Course Could Be Beneficial

Tritos told Medscape Medical News the current study has some limitations. In addition to the relatively small sample size, he cited the use of social media in patient selection.

"These observations may limit the external validity (generalizability) of the findings reported in the present study," he noted. "Larger studies in unselected populations of patients with acromegaly would be helpful to confirm and extend these findings."

In the meantime, efforts to prevent symptoms early on could be beneficial, he said.

"Earlier detection and treatment of acromegaly before complications ensue may be helpful in mitigating the development of such symptomatology," he said.

"Clinicians should spend sufficient time eliciting the extent and severity of patient symptomatology," Tritos added.

"Use of validated symptom scores in patient care and clinical research (including clinical trials) may improve both routine care and the evaluation of investigational therapies," he concluded.

Pituitary. Published December 5, 2019. Full text

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