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临床试验/NCT07339865
NCT07339865Enrolling By Invitation不适用

Perceptions and Barriers of Transition in Care Among Patients on Pediatric and Adult Urology Services - STREAMWAY: Study of Transition in Real-life Experiences Affecting Micturition and Well-being in Adolescent Years

University Hospital, Ghent1 个研究点 分布在 1 个国家目标入组 20 人开始时间: 2025年2月28日最近更新:
适应症
干预措施

试验速览

阶段
不适用
状态
Enrolling By Invitation
入组人数
20
试验地点
1
主要终点
Perceptions, Attitudes, and Experiences Regarding Transition from Pediatric to Adult Urological Care

研究概览

简要总结

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.

详细描述

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.

研究设计

研究类型
Observational
观察模型
Case Only
时间视角
Prospective

入排标准

年龄范围
16 Years 至 25 Years(Child, Adult)
性别
All
接受健康志愿者

入选标准

  • LUTS (according to ICCS definition) present during childhood
  • Participants receiving follow-up care for LUTS from a general practitioner, urologist, paediatric urologist, or paediatric nephrologist.
  • Individuals aged 16-25 years who have recently transitioned to adult care or are currently undergoing the transition process.

排除标准

  • Patients not comfortable conducting interviews and completing questionnaires in Dutch
  • Participants with neurological conditions or congenital anatomical anomalies that may cause LUTS, as these individuals are already followed in established transition pathways and cannot be compared to the target population
  • Individuals with cognitive impairments that impair their capacity to independently participate in interviews or complete questionnaires.

研究组 & 干预措施

Adolescents and young adults (AYA)

Adolescents and young adults (AYA) with persisting childhood LUTS, none related to a congenital or neurological disorder.

干预措施: Semi-structured in-depth interviews with standardized validated questionnaires (Other)

Adolescents and young adults (AYA)

Adolescents and young adults (AYA) with persisting childhood LUTS, none related to a congenital or neurological disorder.

干预措施: Completion of a urological time-line (Other)

结局指标

主要结局

Perceptions, Attitudes, and Experiences Regarding Transition from Pediatric to Adult Urological Care

时间窗: Baseline (single assessment)

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.

次要结局

  • Persisting LUTS in adolescence(Baseline (single assessment))
  • Constipation complaints(Baseline (single assessment))
  • Sleep quality(Baseline (single assessment))
  • Quality of Life reporting(Baseline (single assessment))
  • Quality of Life - LUTS related(Baseline (single assessment))
  • Adverse Childhood Experiences (ACE's)(Baseline (single assessment))
  • Genitourinary Pain(Basline (Single assessment))

研究者

申办方类型
Other
责任方
Sponsor

研究点 (1)

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