The PRO-CSD© instruments are health-related quality of life (HRQoL) questionnaires for parents and caregivers of young children with conditions affecting sex development.
These instruments can be used in a routine clinical setting. They are also currently being used as part of a multicentre, cross-sectional study evaluating HRQoL in children with conditions affecting sex development (PRO-CSD Global).
Instruments
The PRO-CSD instruments are short, validated, condition-specific instruments for assessing Health-Related Quality of Life (HRQoL) in young children with condition affecting sex development. They explore a range of themes including: decision making, role-functioning and family activities, gender concerns, socioemotional functioning, future concerns, healthcare communication & information, talking to others, medications, surgery, doctor’s visits, earliest experiences and physical functioning, gender concerns, socio-emotional functioning, medical care.
The instruments consist of:
PRO-CSD Parent Self-Report (PSR)
- completed by parents or caregivers of children aged from newborn to 7 years
- refers to the caregivers perceptions on their child’s condition
- has 18 items within 11 scales
- takes under 5 minutes to complete
PRO-CSD Parent-Proxy Report (PPR)
- completed by parents or caregivers of children aged 2 to 7 years
- refers to what the caregiver thinks that their child’s perceptions are regarding their condition
- has 10 items within 5 scales
- takes under 5 minutes to complete
Scoring
Please contact the study team for a scoring guide.
Language versions
For instructions regarding the translation of PRO-CSD into another language, please contact us and refer to our guidance below.
PRO-CSD linguistic validation guidance
Summary of translation process
Translation reports
The reports below will be completed by centres involved in translating PRO-CSD from English into another language.
Terms of usage
The use of the PRO-CSD is free of charge for academic research (funded or not funded), non-commercial research, i.e. non-profit organisations (e.g. governmental institutions such as universities, hospitals) as well as for commercial studies (companies or profit organizations, e.g. pharmaceutical industry, also pharma-funded).
Please pay attention to our Copyright and use the following reference in all publications:
- Tseretopoulou X, et al. Validation of a parent-reported outcome measure for young boys with a condition affecting sex development (PRO-CSD). Arch Dis Child. 2025 Jun 8:archdischild-2024-328377. doi: 10.1136/archdischild-2024-328377.
Related Publications
- Ali SR, Tseretopoulou X, Sandberg DE. Assessment of patient-centered outcomes in young children with differences of sex development. Best Pract Res Clin Endocrinol Metab. 2025 Jul;39:102030. doi: 10.1016/j.beem.2025.102030.
- Ali SR, et al. Development and validation of a short version of the quality of life-DSD questionnaire for parents of young children with conditions affecting sex development. Endocr Connect. 2024 Oct 7;13:e240300. doi: 10.1530/EC-24-0300.
- Alpern AN, et al. Development of health-related quality of life instruments for young children with disorders of sex development (DSD) and their parents. J Pediatr Psychol. 2017;42:544-558. doi: 10.1093/jpepsy/jsw02.
Contact
If you have any questions about the PRO-CSD instruments, please contact us and we will be happy to assist you.
Contact details:
Dr Salma Rashid Ali
Clinical Lecturer in Child Health
Office Block, Zone 0.01, Ground Floor
Royal Hospital for Children and Queen Elizabeth University Hospital Campus
1345 Govan Road, Glasgow, G51 4TF
Email: salma.ali@glasgow.ac.uk
Last revised