SEEKS Study: Exploring the Experiences of Klinefelter's Syndrome
Research type
Research Study
Full title
SEEKS Study: Exploring the Experience of Klinefelters Syndrome
IRAS ID
212565
Contact name
Scott Wilkes
Contact email
Sponsor organisation
University of Sunderland
Duration of Study in the UK
0 years, 8 months, 31 days
Research summary
The purpose of this study is to interview an appropriately identified cohort of men diagnosed with Klinefelter’s Syndrome (KS) to explore what effect the diagnosis may have on life experiences in order to determine whether those diagnosed early in life have different life experiences from those diagnosed in adulthood.
The prevalence of KS in the UK is common, but frequently under-recognised and under-diagnosed. The condition has the capacity to impact on all areas of development including cognitive, social and reproductive function and may go undetected for many years resulting in a multitude of problems for the person effected, family and friends. This study will aim to gain insight into the impact of diagnosis at different ages, therefore two adult cohorts will be selected; those diagnosed in childhood <18 years of age and those diagnosed in adulthood >18 years of age.
By gaining better understanding of the impact of the diagnosis from the perspective of those affected and by understanding if differences exist at the age of diagnosis, it is intended that awareness of the condition will be increased with the emphasis being on improving diagnosis and support for patients and their families.
The study will gather data from qualitative in-depth interviews with participants who have volunteered to be part of the project. In order to be eligible to volunteer potential participants need to be males with a diagnosis of KS. Each interview will last from 45 minutes to 1 hour long. The interviews will be conducted in venues suitable to the participant where privacy and comfort can be maintained.
The interviews will be audio-taped, transcribed verbatim and analysed using thematic coding techniques. Once the data has been transcribed themes and trends will be sorted and coded with a view to finding (or not) commonalities in the responses from the cohorts.REC name
East Midlands - Leicester South Research Ethics Committee
REC reference
16/EM/0504
Date of REC Opinion
31 Jan 2017
REC opinion
Further Information Favourable Opinion