Health Needs of Patients With Kallmann Syndrome

N/ACompletedNCT01914172

Centre Hospitalier Universitaire Vaudois249 enrolled

Overview

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.

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

Study Type

OBSERVATIONAL

Enrollment

249

Conditions

Kallmann Syndrome Congenital Hypogonadotropic Hypogonadism Idiopathic Hypogonadotropic Hypogonadism

Interventions

Eligibility

Sex: ALLMin age: 18 YearsMax age: 75 Years

Medical Language ↔ Plain English

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.

Outcomes

Primary Outcomes

illness perception

subjective self-assessment questionnaire of how KS/CHH impacts a patient's life

Time frame: baseline

depression symptoms

self-rated questionnaire of depression symptoms

Time frame: baseline

adherence to treatment

self-report of adherence to medication treatment and periods without treatment or healthcare

Time frame: baseline

understandability and actionability of patient education materials

completion of Patient Education Materials Assessment Tool (PEMAT)

Time frame: baeline

Secondary Outcomes

coping

Focus groups will be conducted to evaluate how KS/CHH impacts patients quality of life, the barriers to better health/quality of life, and how patients cope with living with KS/CHH

Time frame: baseline

Interactions wth healthcare

A questionnaire reporting the quality and type of interactions with healthcare providers and the healthcare system

Time frame: baseline

Health Needs of Patients With Kallmann Syndrome

Overview

Conditions

Interventions

Eligibility

Locations (1)

Outcomes

Primary Outcomes

Secondary Outcomes