Clinical Trial: Health Needs of Patients With Kallmann Syndrome

Study Status: Active, not recruiting
Recruit Status: Active, not recruiting
Study Type: Observational

Official Title: Factors Affecting Health Promoting Behavior in Rare Disease Patients: A Mixed Methods Study of Men With Congenital Hypogonadotropic Hypogonadism (CHH)

Brief Summary: 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.

Detailed Summary:

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


Sponsor: Centre Hospitalier Universitaire Vaudois

Current Primary Outcome:

  • illness perception [ Time Frame: baseline ]
    subjective self-assessment questionnaire of how KS/CHH impacts a patient's life
  • depression symptoms [ Time Frame: baseline ]
    self-rated questionnaire of depression symptoms
  • adherence to treatment [ Time Frame: baseline ]
    self-report of adherence to medication treatment and periods without treatment or healthcare


Original Primary Outcome: Same as current

Current Secondary Outcome:

  • coping [ Time Frame: baseline ]
    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
  • Interactions wth healthcare [ Time Frame: baseline ]
    A questionnaire reporting the quality and type of interactions with healthcare providers and the healthcare system


Original Secondary Outcome: Same as current

Information By: Centre Hospitalier Universitaire Vaudois

Dates:
Date Received: July 31, 2013
Date Started: July 2013
Date Completion: December 2018
Last Updated: July 6, 2016
Last Verified: July 2016