Idiopathic hypogonadotropic hypogonadism in China: A network investigation, "Beyond the Abstract," by Xiaolong Zhao

BERKELEY, CA ( - In the study, we mainly focused on two aspects, one being the methodology used in the research. Because idiopathic hypogonadotropic hypogonadism (IHH) is a rare disease, it is difficult for a single clinical center to perform a comprehensive assessment due to the limited number of patients in any one geographical area. The low incidence of IHH prevented us from gaining a deeper understanding the disease. With information technology and the soaring numbers of Internet users, we did the first network-based investigation of IHH through an online questionnaire and the review of patients’ medical records. The results extracted from the investigation were of high quality and were comparable to conventional studies. The approach may hold potential for broader applicability in medical research for rare diseases.

The second aspect of our study was the satisfaction of patients. We used a simple standard quantization table to survey how satisfied IHH patients were with their disease progress and medical care. A 0-10 scoring system was used to investigate the physical strength, appetite, sleep, libido, and sense of happiness of IHH patients, by self-assessment. As the sense of happiness is usually low, it is necessary to provide psychosocial support to IHH patients. Unfortunately, there is a lack of such studies in China as well as other countries. We want to appeal for more attention to the care of IHH patients worldwide.

From the Internet-based questionnaire survey, a total of 74 male IHH patients were recruited from the largest Chinese IHH network social group. The clinical symptoms before treatment mainly included small testis, underdeveloped secondary sexual characteristics, and sexual dysfunction. The IHH patients were treated with different therapeutic protocols by different combinations of androgen, gonadotropin, and luteinizing hormone-releasing hormone (LHRH). After treatment, the penis length, testicular volume, external genital organ development, pubic hair, beard, laryngeal prominence, erection, and spermatorrhea were improved significantly (P < 0.001). 18.9% of the patients completed fertility, however, more than half of the patients still complained of low levels of happiness and low physical strength. In addition, improvements in penis and pubic hair development, testosterone normalization, and the physical strength in IHH patients who received gonadotropin and androgen replacement therapy were better than in those who received single gonadotropin therapy (P < 0.05 for all). The effectiveness of hormone replacement therapy for IHH implied that gonadotropin and androgen replacement therapy might be superior to gonadotropin treatment alone.

Written by:
Xiaolong Zhao as part of Beyond the Abstract on This initiative offers a method of publishing for the professional urology community. Authors are given an opportunity to expand on the circumstances, limitations etc... of their research by referencing the published abstract.

Department of Endocrinology and Metabolism, Huashan Hospital, Fudan University, Shanghai 200040, China

A network investigation on idiopathic hypogonadotropic hypogonadism in China - Abstract

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