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.
Pituitary
|July 24, 2012
Summary
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.
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