Acromegalic patients lost to follow-up: a pilot study
Leandro Kasuki1, Nelma Verônica Marques, Maria José Braga La Nuez
1Endocrinology Unit, Clementino Fraga Filho University Hospital, Federal University of Rio de Janeiro, Rio de Janeiro, Brazil.
Insights
Many acromegaly patients require lifelong treatment. A study found 17.6% were lost to follow-up, often due to symptom absence, highlighting the need for active patient outreach to ensure treatment adherence and improve outcomes.
Area of Science:
- Endocrinology
- Internal Medicine
- Clinical Research
Background:
- Acromegaly necessitates lifelong treatment for approximately 50% of patients to normalize mortality and reduce morbidity.
- Therapeutic adherence is critical for achieving treatment objectives in acromegaly management.
- Limited data exists on the frequency and underlying reasons for loss to follow-up among acromegaly patients.
Purpose of the Study:
- To determine the frequency of loss to follow-up in acromegaly patients across three specialized centers.
- To identify the primary reasons contributing to poor treatment compliance in this population.
- To assess the feasibility of re-engaging lost patients and resuming their treatment.
Main Methods:
- Retrospective review of patient files from three acromegaly reference centers.
- Identification of patients with no hospital contact for over one year.
- Contacting lost patients via phone/mail for interviews and sample collection.
Main Results:
- Out of 239 reviewed files, 42 patients (17.6%) were identified as lost to follow-up.
- Contact was established with 27 lost patients; 17 agreed to participate.
- Among participating patients, 15 (88.2%) had active disease, and all resumed treatment.
- The primary reason cited for loss to follow-up was the absence of symptoms.
Conclusions:
- A significant proportion of acromegaly patients are lost to follow-up, often due to perceived lack of symptoms.
- Active patient tracing and re-engagement strategies can lead to treatment resumption in a substantial number of cases.
- Effective follow-up care is crucial for managing acromegaly, reducing long-term morbidity, and improving mortality rates.
Abstract:
Approximately 50 % of all acromegalic patients will require lifelong medical treatment to normalize mortality rates and reduce morbidity. Thus, adherence to therapy is essential to achieve treatment goals. To date, no study has evaluated the frequency and reasons for loss to follow-up in the acromegalic population. The current study aimed at evaluating the frequency of acromegalic patient loss to follow-up in three reference centers and the reasons responsible for their low compliance with treatment. All of the files for the acromegalic patients in the three centers were reviewed. Those patients, who had not followed up with the hospital for more than a year, were contacted via phone and/or mail and invited to participate. Patients who agreed to participate were interviewed, and blood samples were collected. A total of 239 files were reviewed; from these 42 patients (17.6 %) were identified who were lost to follow-up. It was possible to contact 27 of these patients, 10 of whom did not attend the appointments for more than one time and 17 of whom agreed to participate in the study. Fifteen of these 17 patients had active disease (88.2 %), and all of the patients restarted treatment in the original centers. The main reason for loss to follow-up was an absence of symptoms. High-quality follow-up is important in acromegaly to successfully achieve the aims of the treatment. An active search for patients may allow the resumption of treatment in a significant proportion of these cases, contributing to reduced morbidity and mortality in this patient population.
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