Endocrine Abstracts

Background: For chronic diseases, adherence to treatment remains a major clinical challenge. For men with long-term hypogonadism, there is scant data regarding adherence to treatment. Congenital hypogonadotropic hypogonadism (CHH) is a rare, genetic, endocrine disorder characterized by incomplete/absent puberty and infertility. Little is known about adherence in this patient population or the psychosocial implications of living with this rare disorder. Therefore, we aimed to evaluate illness perceptions, depressive symptoms, and patterns of adherence to treatment in men with CHH.

Methods: An online, web-based patient survey was used to examine how patients perceive CHH (Revised Illness Perception Questionnaire), assess their depressive symptoms (Zung Self-Rating Depression Scale), and measure their treatment adherence (Morisky Medication Adherence Scale). Comparisons were made to normative reference populations and other chronic endocrine disorders (Cushing’s and acromegaly).

Results: 83 CHH men completed the survey and reported often lengthy gaps in treatment (27% with pauses >1 year) and discontinuity of care (41% without healthcare >1 year). These men exhibit significantly increased rates of mild (subclinical), moderate, and severe depression compared to controls (all P<0.001). Patients suffer significant physical, psychological and social consequences as a result of CHH and the negative emotional impact of having CHH is correlated with depressive symptoms (P<0.001). Poor medication adherence was associated with more perceived negative consequences and more depression symptoms (both P<0.05). Higher illness coherence (making sense of CHH) appeared to be a protecting factor for depressive symptoms (P<0.001).

Conclusions: CHH patients report significant psychosocial burdens that are associated with gaps and discontinuity in care. These data highlight the importance of examining the psychological and emotional impact of living with a chronic condition as these factors can affect adherence to treatment and subsequent morbidity (i.e. metabolic and skeletal health sequelae). A follow-up study is currently underway to identify specific targets for patient-centered e-health interventions to promote better health outcomes and enhanced quality of life in these dispersed patients.