Development and validation of a short version of QoL-DSD
Research type
Research Study
Full title
Development and validation of a short version of the Quality of Life DSD questionnaire (QoL-DSD) for parents and carers of young children with disorders/differences of sex development
IRAS ID
277884
Contact name
Salma Ali
Contact email
Sponsor organisation
Greater Glasgow & Clyde NHS Board
Duration of Study in the UK
2 years, 0 months, 0 days
Research summary
Title of Study: Development and validation of a short version of the Quality of Life DSD questionnaire (QoL-DSD) for parents and carers of young children with disorders/differences of sex development
Background:
Disorders of Sex Development (DSD) are a group of conditions that can impose a high degree of stress on children and their families with a wide range of effects on social and psychosexual adjustment, mental health, quality of life and social participation. Currently, there is little research on the experience of patients and caregivers of young children with DSD and a lack of tools that can be routinely used in a busy clinic setting to assess the extent of psychosocial adaptation in these individuals.Objectives of this study:
The development and validation of brief questionnaires that can be completed by parents of young children with DSD will provide insight into patient and caregiver experiences and enable identification of specific areas of need for these patients, enabling opportunities for provision of targeted interventions such as psychology input. A clearer understanding of the psychosocial needs and challenges faced by these families will also facilitate a standardised approach to the management of those affected by DSD.Recruitment:
Parents of children under the age of 7 years with DSD attending DSD and urology clinics at the Royal Hospital for Children will be approached, over an 18 month period, to take part in this study over which will involve completion of questionnaires assessing quality of life.The study has received funding from the Glasgow Children's Hospital Charity.
REC name
West of Scotland REC 3
REC reference
20/WS/0099
Date of REC Opinion
28 Jul 2020
REC opinion
Favourable Opinion