With this study, we would like to interview 16-25-year-olds who have experienced urinary problems since childhood and who are still experiencing symptoms in young adulthood. The transition from childhood, through puberty, to young adulthood is a time period marked by many psychological ans physiological changes, during which it can be difficult to properly monitor certain symptoms. With this study, we aim to gather opinions and experiences of adolescents and young adults in order to improve urological care for other patients in the future.
This study investigates the experiences of adolescents with urinary symptoms during the transition from pediatric to adult urological care. This transition is a complex, multidisciplinary process that impacts their well-being and treatment. Gaining insight into the perceptions of and barriers within this transition is crucial for improving care and guidance for future patients. This mix-method study uses in-depth interviews and standardized questionnaires and focuses on adolescents (16-25 years) with a history of urinary symptoms who are currently being followed for these complaints. Data collection includes a timeline completion of the urological care pathway from birth untill the moment of the interview, semi-structured interviews, and questionnaires. Twenty participants will be included, with the possibility of expanding the sample or terminating recruitment early depending on interim results. Participants will be recruited via healthcare providers at Ghent University Hospital (UZ Gent) from various departments: urology, pediatric urology, pediatric nephrology, and general practice, as well as through lecture evenings organized by UZ Gent for healthcare providers from peripheral settings (outside UZ Gent) involved in the care of adolescents with urinary symptoms. The informed consent form (ICF) will be provided first-signed by the participant in the case of adults, and, in the case of minors, through an informed assent form (IAF) completed by the participant and an informed consent form (ICF) signed by a parent or legal guardian. Subsequently, appointments for an introductory meeting and interview will be scheduled. After the introductory meeting, participants will complete a timeline of their urological care pathway from birth to date and will independently collect their childhood growth curves, following instructions provided by the research team. The subsequent interview-if approved by the participant-will be audio-recorded, questionnaires will be completed, and all data will later be pseudonymized in accordance with GDPR guidelines. Interviews may take place at UZ Gent, at a preferred location, or via video consultation.
Study Type
OBSERVATIONAL
Enrollment
20
Interviews utilize a semi-structured format, with one researcher conducting all interviews to ensure consistency. A piloted, multidisciplinary-approved interview guide is used to ask open-ended questions exploring adolescent transition experiences.
Participants complete a blank timeline representing their urological care pathway from birth to the moment of the in-depth interview.
Ghent University Hospital
Ghent, East-Flanders, Belgium
Perceptions, Attitudes, and Experiences Regarding Transition from Pediatric to Adult Urological Care
Assessment of adolescents' perceptions, attitudes, and experiences related to the transition from pediatric to adult urological care, as measured using a semi-structured in-depth interview after or during completion of the transition process, depending of the age of the included participant.
Time frame: Baseline (single assessment)
Persisting LUTS in adolescence
Assessment of LUTS at the moment of the in-depth interview (cross-sectional) potentially being linked to the primary outcome. The ICIQ-M+FLUTS symptom items are scored on a 0-4 Likert scale, and associated bother items are scored on a 0-10 numeric rating scale, with higher scores indicating greater symptom severity or impact.
Time frame: Baseline (single assessment)
Constipation complaints
Assessment of constipation complaints at the moment of the in-depth interview (cross-sectional) potentially being linked to the primary outcome. The Cleveland Clinic Constipation Score (CCCS) consists of 8 items scored on a 0-4 Likert scale, yielding a total score ranging from 0 to 30, with higher scores indicating more severe constipation symptoms.
Time frame: Baseline (single assessment)
Sleep quality
Assessment of sleep quality at the moment of the interview (cross-sectional), potentially linked to the primary outcome. The Pittsburgh Sleep Quality Index (PSQI) yields seven component scores (each scored 0-3) that are summed to produce a global score ranging from 0 to 21, with higher scores indicating poorer sleep quality.
Time frame: Baseline (single assessment)
Quality of Life reporting
Assessment of general quality of life at the moment of the interview (cross-sectional), potentially linked to the primary outcome. The EQ-5D-5L assesses health-related quality of life across five dimensions, each scored on a 5-level categorical scale. Responses are converted into a country-specific index score (typically ranging from \<0 to 1.0) and a visual analogue scale (VAS) score ranging from 0 to 100, with higher scores indicating better health status.
Time frame: Baseline (single assessment)
Quality of Life - LUTS related
Assessment of LUTS-related Quality of life at the moment of the interview (cross-sectional), potentially linked to the primary outcome. The ICIQ-LUTSqol consists of 19 items scored on a 4-point Likert scale (1-4), yielding a total score ranging from 19 to 76, with higher scores indicating greater quality-of-life impairment related to lower urinary tract symptoms.
Time frame: Baseline (single assessment)
Adverse Childhood Experiences (ACE's)
Assessment of adverse childhood experiences (ACE's) at the moment of the interview collected (cross-sectional), reporting from birth untill present, potentially linked to the primary outcome.
Time frame: Baseline (single assessment)
Genitourinary Pain
Assessment of genitourinary pain at the moment of the in-depth interview (cross-sectional) potentially being linked to the primary outcome. The Female/Male Genitourinary Pain Index (GUPI) consists of 15 items across pain, urinary symptoms, and quality-of-life domains, yielding a total score ranging from 0 to 45, with higher scores indicating greater symptom severity.
Time frame: Basline (Single assessment)
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