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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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Ten focus groups stratified by child age and sex were conducted in Sweden with 15 children aged 8\u201318, and 23 parents of children aged 2\u201317. Sessions were moderated, audio-recorded and transcribed verbatim. Reports of children\u2019s BEEC-related HRQoL were extracted and content analyzed into categories sharing a common feature.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      1713 statements of the child\u2019s HRQoL (1076 from parents, 637 from children) were identified and grouped into seven HRQoL categories.\n                      <jats:italic>Somatic experiences\/Physical consequences due to BEEC<\/jats:italic>\n                      reflected experiences of urgency, leakage, smell, infections, pain\/discomfort and bodily variations.\n                      <jats:italic>Living with the choice of whether or not to be open<\/jats:italic>\n                      described children\u2019s decision-making about revealing BEEC to others.\n                      <jats:italic>Social relationships<\/jats:italic>\n                      highlighted the importance of peers and articulated social vulnerability.\n                      <jats:italic>Adaptational needs due to bladder dysfunction<\/jats:italic>\n                      included special needs in relation to the night-time, time schedules and clothing.\n                      <jats:italic>Functioning in environments outside home<\/jats:italic>\n                      included experiences with public toilets, school and leisure activities.\n                      <jats:italic>Psychological impact<\/jats:italic>\n                      encompassed emotional consequences and perceptions of different appearance.\n                      <jats:italic>Growing up with BEEC<\/jats:italic>\n                      included thoughts about sexuality, parenthood, the future and independence.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1007\/s11136-026-04316-7","type":"journal-article","created":{"date-parts":[[2026,6,19]],"date-time":"2026-06-19T12:44:25Z","timestamp":1781873065000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Health-related quality of life experiences in children with bladder exstrophy-epispadias complex: a Swedish focus group study"],"prefix":"10.1007","volume":"35","author":[{"given":"Ulrika","family":"Svenninghed","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elin","family":"\u00d6st","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gundela","family":"Holmdahl","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lisa","family":"\u00d6rtqvist","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Magdalena","family":"Boije","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sofia","family":"Sj\u00f6str\u00f6m","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michaela Dellenmark-","family":"Blom","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2026,6,19]]},"reference":[{"issue":"23","key":"4316_CR1","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1186\/1750-1172-4-23","volume":"4","author":"AK Ebert","year":"2009","unstructured":"Ebert, A. 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