Congenital Hypogonadotropic Hypogonadism, Idiopathic Hypogonadotropic Hypogonadism, Kallmann Syndrome
Conditions
Keywords
rare disease, community-based participatory research, health promotion, quantitative research, qualitative research, focus group
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 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
Interventions
OTHERonline questionairres
see group descriptions
Sponsors
University of Lausanne
Centre Hospitalier Universitaire Vaudois
Study design
Observational model
COHORT
Time perspective
CROSS_SECTIONAL
Eligibility
Sex/Gender
ALL
Age
18 Years to 75 Years
Healthy volunteers
No
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.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| illness perception | baseline | subjective self-assessment questionnaire of how KS/CHH impacts a patient's life |
| depression symptoms | baseline | self-rated questionnaire of depression symptoms |
| adherence to treatment | baseline | self-report of adherence to medication treatment and periods without treatment or healthcare |
| understandability and actionability of patient education materials | baeline | completion of Patient Education Materials Assessment Tool (PEMAT) |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| coping | 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 | baseline | A questionnaire reporting the quality and type of interactions with healthcare providers and the healthcare system |
Countries
Switzerland
Outcome results
None listed