Adherence to treatment in men with hypogonadotropic hypogonadism

Summary

Objective

Men with congenital hypogonadotropic hypogonadism (CHH) typically require lifelong hormonal therapy and discontinuing treatment can have negative health consequences. Little is known about adherence to treatment or the psychosocial impact of CHH.

Design

A sequential, multiple methods approach was used. A quantitative online survey assessed adherence to treatment, depressive symptoms, and illness perceptions. Subsequently, qualitative focus groups explored patient-reported factors for adherence.

Patients

Adult men with CHH on at least one year of treatment were recruited internationally.

Measurements

Adherence (Morisky medication adherence scale), depressive symptoms (Zung self-rating depression scale), and patient perception of CHH (revised illness perception questionnaire) were assessed in an online survey and comparisons were made to reference groups. Patient focus group discussions were conducted and thematic analysis was employed to identify patient-reported factors for adherence.

Results

In total, 101 men on long-term treatment were included (mean age 37±11 yrs). More than half 58/101 (57%) exhibited low medication-adherence and a significantly elevated prevalence of mild, moderate, or severe depressive symptoms (27%, 17%, 20% respectively, all p<0.001 vs. reference population). Patients reported negative illness perceptions and significant psychosocial consequences. Focus group discussions (n=3, 26 total patients) identified patient-, health professional- and healthcare system- related barriers as targets for improving adherence.

Conclusions

CHH men are challenged to adhere to long-term treatment. Poor adherence may contribute to adverse effects on bone, sexual and psychological health. The psychosocial morbidity of CHH is significant and appears to be underappreciated by healthcare providers.

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