Health Needs of Patients With Kallmann Syndrome

Vaud University Hospital Center

Status: Completed

Conditions: Congenital Hypogonadotropic Hypogonadism; Kallmann Syndrome; Idiopathic Hypogonadotropic Hypogonadism

Treatments: Other: online questionairres

Study type: Observational

Funder types: Other

Identifiers

NCT01914172

233/13 (Other Identifier)

Details and patient eligibility

About

Kallmann syndrome (KS), also known as congenital hypogonadotropic hypogonadism (CHH), is a rare endocrine disorder that is characterized by failure to undergo puberty combined with infertility. KS/CHH patients face a number of psychosocial burdens related to delays in diagnosis, inadequate access to expert care, and lack of information about the condition. As such, there is some evidence to suggest that KS/CHH patients have unmet health needs. This study aims to identify the needs of patients and understand the issues that must be overcome to achieve improved health and quality of life.

Full description

This study aims to examine the experiences of patients diagnosed with Kallmann syndrome (KS)/congenital hypogonadotropic hypogonadism (CHH).

The study includes two parts:

• online survey (less than 30 minutes to complete)
• focus groups with KS/CHH patients

The aim of this project is to better understand what health needs are not presently being met for these patients and to identify targets for improving the care of patients diagnosed with KS/CHH

Enrollment: 249 patients

Sex: All

Ages: 18 to 75 years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• Diagnosed with congenital hypogonadotropic hypogonadism: i.e. Kallmann syndrome or idiopathic hypogonadotropic hypogonadism
• Primary language is English/capable of responding to a written questionnaire in English
• Consenting to participate in the study

Exclusion criteria

• other diagnosis of hypogonadism: i.e. hypergonadotropic hypogonadism (Klinefelter syndrome), adult onset hypogonadism, etc.

Trial design

249 participants in 3 patient groups

Online web-based questionnaire

Description:

Up to 200 patients with KS/CHH will be recruited to complete an online web-based questionnaire (less than 30 minutes to complete)

Treatment:

Other: online questionairres

Patient focus group

Description:

Focus groups (90-120 minutes in duration) with 6-12 patients. Up to 36 patients total

Online web-based evaluation of patient education materials

Description:

Up to 100 patients with KS/CHH will be recruited to complete an online web-based questionnaire to evaluate patient education materials (less than 15 minutes to complete)

Treatment:

Other: online questionairres