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Health-related quality of life experiences in children with bladder exstrophy-epispadias complex: a Swedish focus
Ulrika Svenninghed1,2, Elin Öst3,4, Gundela Holmdahl3,4
1Department of Pediatrics, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden. ulrika.svenninghed@gu.se.
Insights
Children with bladder exstrophy-epispadias complex (BEEC) face significant physical, psychological, and social challenges. Understanding these health-related quality of life (HRQoL) impacts is crucial for developing targeted support and a disease-specific questionnaire.
Area of Science:
- Pediatric Urology
- Quality of Life Research
- Congenital Malformations
Background:
- Bladder exstrophy-epispadias complex (BEEC) is a rare congenital condition affecting the genitourinary system.
- Children with BEEC are at risk for long-term urinary and genital dysfunction, impacting their overall well-being.
Purpose of the Study:
- To explore and describe the health-related quality of life (HRQoL) experiences of children diagnosed with BEEC.
- To gather insights that will inform the development of a disease-specific HRQoL questionnaire for BEEC patients.
Main Methods:
- Conducted ten focus groups in Sweden, stratified by child age and sex.
- Included 15 children (aged 8-18) and 23 parents (of children aged 2-17).
- Analyzed 1713 transcribed statements from participants into seven distinct HRQoL categories.
Main Results:
- Identified seven key HRQoL categories: somatic experiences, decisions about disclosure, social relationships, adaptation to bladder dysfunction, functioning in external environments, psychological impact, and growing up with BEEC.
- Somatic impacts included urgency, leakage, odor, pain, and body image concerns.
- Psychological and social impacts highlighted emotional well-being, social vulnerability, and future concerns regarding independence and sexuality.
Conclusions:
- This study provides the first focus group insights into the multifaceted HRQoL experiences of children with BEEC.
- The findings confirm the need for a disease-specific HRQoL instrument for this population.
- The identified categories provide a foundation for developing a comprehensive and relevant BEEC-specific HRQoL questionnaire.
Purpose:
Bladder exstrophy-epispadias complex (BEEC) is a rare urogenital malformation. Children risk long-term urinary and genital dysfunction. The study aimed to describe health-related quality of life (HRQoL) experiences among children with BEEC and ultimately guide the development of a BEEC-specific HRQoL questionnaire.
Methods:
Ten focus groups stratified by child age and sex were conducted in Sweden with 15 children aged 8-18, and 23 parents of children aged 2-17. Sessions were moderated, audio-recorded and transcribed verbatim. Reports of children's BEEC-related HRQoL were extracted and content analyzed into categories sharing a common feature.
Results:
1713 statements of the child's HRQoL (1076 from parents, 637 from children) were identified and grouped into seven HRQoL categories. Somatic experiences/Physical consequences due to BEEC reflected experiences of urgency, leakage, smell, infections, pain/discomfort and bodily variations. Living with the choice of whether or not to be open described children's decision-making about revealing BEEC to others. Social relationships highlighted the importance of peers and articulated social vulnerability. Adaptational needs due to bladder dysfunction included special needs in relation to the night-time, time schedules and clothing. Functioning in environments outside home included experiences with public toilets, school and leisure activities. Psychological impact encompassed emotional consequences and perceptions of different appearance. Growing up with BEEC included thoughts about sexuality, parenthood, the future and independence.
Conclusion:
This first-reported focus group study in children with BEEC reveals physical, psychological, and social impacts across life domains. These findings justify and enable development of a disease-specific HRQoL questionnaire for children with BEEC.
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