Health-related quality of life experiences in children with bladder exstrophy-epispadias complex: a Swedish focus group study

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.