Adolescents and young adults (AYAs) with childhood-onset lower urinary tract symptoms (LUTS) face unique challenges transitioning from paediatric to adult urological care. This transition is a vulnerable period associated with disruptions in care continuity, reduced treatment adherence, and emotional burden.(1) Despite growing evidence on the added value of a structured transitional care program, little is known about their lived experiences during transition trajectories from pediatric to adult urological care. Current frameworks are clinician-driven and may not fully address patient needs. Understanding how adolescents navigate this transition is essential to improve service design and ensure patient-centred care. Therefore, STREAMWAY holds the research question: ‘What are the needs of AYAS with LUTS transitioning from pediatric to adult care?’

A monocentric qualitative in-depth interview study was carried out. Participants were recruited from July 2025 until March 2026 in secondary and tertiary care setting in Flanders (Belgium), via selective sampling from pediatric and adult uro-nephrology services. Participants aged 16–25 years with childhood-onset LUTS were included. Study inclusion required completion of, or active engagement in respectively pediatric and adult urological care. Exclusion criteria were neurological disorders and insufficient language proficiency. Data collection involves: (a) personalized timeline documenting urological care from birth to present, (b) semi-structured interview examining healthcare experiences, symptom impact and transition care needs and (c) standardized questionnaires at the moment of interview, measuring LUTS (ICIQ-M/FLUTS, ICIQ-LUTSqol), quality of life (EQ-5D-5L), sleep quality (PSQI), constipation (CCCS), genitourinary pain (GUPI) and adverse childhood experiences (ACE-IQ). Interviews were recorded, pseudonymised, transcribed. Interpretative thematic analysis was performed using Braun and Clarke’s six-phase approach.(2)

A total of 14 AYAs with LUTS were included, encompassing 2 males (14,3%) and 12 females (85,7%). Median age was 21 years (IQR 17–24). Patient demographics and questionnaire data are demonstrated in Figure 1. These data reveal a substantial burden of adverse childhood experiences and moderate storage LUTS and incontinence scores.

Thematic analysis identified two overarching themes regarding their needs in relation to their experienced LUTS: (A) the need for holistic, person-focused accessible and continuous healthcare system; (B) the need for an empathetic, condition-focused support system.(Figure 2) . Different subthemes were identified: (A) a trust relationship with their healthcare professionals, age-adapted communication, a need for accessible and continuous care; (B) a supportive school system, working environment, hobbies and societal infrastructure. Underlying mechanisms of these needs were experienced are related to (A) a mutual respect between patient and healthcare professionals, the importance of parental involvement and the desire for autonomy; (B) the profound  need for being understood across multiple life domains.

A transversal theme was also identified across both themes, namely patients with LUTS highlighted (C) the  need for empathetic actors facilitating participation in a "normal life". Underlying mechanisms of why they feel such needs are related to feelings of (C) insecurity, shame, stigma and the fear of being potentially excluded from society.

Findings reveal that AYAs with LUTS navigate a maze of complex healthcare, developmental, and psychosocial needs during their transition trajectories. Moreover, these results indicate that transitional care should also incorporate psycho-existential (support) needs of this patient population, for example, by including psychosocial care into standard urological care, thus moving beyond their medical and/or healthcare needs. It is therefore recommended to integrate their healthcare pathways with other life domains in order to meet all the needs of this population.

Preliminary results from the STREAMWAY study suggest that transitional care practices might benefit from including psychosocial care in order to fully meet the holistic needs of AYAs with LUTS. Our findings might offer actionable, patient-centred guidance for clinicians, healthcare systems, and policymakers to improve the quality and outcomes of transitional urological care for AYAs.

Van den Ende M, Joinson C, Sinha S, Verbakel I, Ochoa DC, Lazar J, Baird A, Selai C, Van Huele A, Bou Kheir G, Spinoit AF, Abrams P, Everaert K, Hervé F. Navigating the waters of LUTS from childhood to puberty - NOPIA meeting (ICI-RS 2024). J Pediatr Urol. 2025 Dec;21(6):1477-1485. doi: 10.1016/j.jpurol.2025.07.011. Epub 2025 Aug 18. PMID: 40829984.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa

Continence 19S (2026) 102610
DOI: 10.1016/j.cont.2026.102610