Abstract and Introduction
Objective: Even if treated, acromegaly has a considerable impact on patient quality of life (QoL); despite this, the exact clinical determinants of QoL in acromegaly are unknown. This study retrospectively examines a cohort of treated patients with acromegaly, with the aim of identifying these determinants.
Methods: Retrospective survey analysis, with 165 patients included in the study. All patients completed a survey, which included demographic data and the clinical details of their disease, the Short Form-36 Health Survey (SF-36), the revised Beck Depression Inventory (BDI-II), and the Bern Embitterment Inventory (BEI). Stepwise regression was used to identify predictors of QoL.
Results: The strongest predictors of the physical component score of the SF-36 were (in order of declining strength of association): Delay between first presentation of the disease and diagnosis, body mass index (BMI), number of doctors visited before the diagnosis of acromegaly, and age at diagnosis. For the mental component score, the strongest predictors were: number of doctors visited, previous radiotherapy, and age at study entry; and, for the BDI-II score: number of doctors visited, previous radiotherapy, age at study entry, and employment status at the time of diagnosis. The following were predictors of the BEI score: number of doctors visited, and age at study entry.
Conclusion: Diagnostic delay and lack of diagnostic acumen in medical care provision are strong predictors of poor QoL in patients with acromegaly. Other identified parameters are radiotherapy, age, BMI, and employment status. An efficient acromegaly service should address these aspects when devising disease management plans.
Acromegaly is a rare, adult endocrine disorder arising from excessive growth hormone (GH) secretion after the closure of the epiphyseal plates at puberty. It has a prevalence of approximately 6 per 100,000 persons and is caused by a pituitary adenoma of somatotrophic origin in more than 90% of cases. Patients gradually develop a characteristic acromegalic phenotype, which includes acral overgrowth, macrognathia, and soft-tissue swelling. Far from being a purely cosmetic problem, acromegaly affects multiple organ systems and leads to a reduction of life expectancy if untreated.[1,2]
The impact of acromegaly and its chronic multisystem morbidity on a patient's life is becoming increasingly recognized. As part of the paradigm shift towards patient-centered medicine, it is more often perceived as a complex illness that extends well beyond the physical characteristics and affects most aspects of everyday life and its overall quality. To scientifically address the problem of quality of life (QoL), and psychosocial impairment in general, self-reported questionnaires are frequently used. Many such tools have been devised, both for general use, and specifically for acromegaly. Using these methods, a number of predictors of poor QoL in acromegaly patients have been identified, such as: more advanced disease, musculoskeletal pain, female sex, presence of headache, previous radiotherapy, older age, higher body mass index (BMI), and diabetes mellitus.[4–6]
Both generic and disease-specific QoL measures often fail to capture treatment-related changes in QoL, which raises the obvious question: Is QoL influenced by other, previously unidentified, factors? Recently, our group showed, in a small number of patients with acromegaly, that a prolonged diagnostic process was a major determinant of psychological impairment and speculated that this could be explained by embitterment in the affected patients. The psychological concept of posttraumatic embitterment disorder (PTED), introduced by Linden in 2003, is defined as a pathologic reaction to an adverse life event, and is characterized by experiences of injustice, humiliation, and violation of basic beliefs, leading to a specific psychopathologic profile of embitterment and intrusions. The concept was studied further by Dobricki and Maercker, who concluded that PTED should be classified as a subtype of adjustment disorders.
In the present study, we aimed to more precisely define the determinants of psychosocial impairment in a large cohort of patients with acromegaly and to test the hypothesis derived from our previous study: specifically, that a prolonged diagnostic process is associated with embitterment in affected patients. This would improve identification of patients at risk of a poor outcome and allow for future targeting of appropriate interventions. For this purpose, we analyzed QoL, depression, and embitterment in relation to sociodemographic and acromegaly-related clinical parameters.
Endocr Pract. 2017;23(1):79-88. © 2017 American Association of Clinical Endocrinologists