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使用经过验证的问卷对青少年过渡性泌尿外科诊所的引入情况进行评估。

Assessment of the introduction of an adolescent transition urology clinic using a validated questionnaire.

作者信息

Shalaby Mohamed Sameh, Gibson Anthony, Granitsiotis Paraskeve, Conn Graeme, Cascio Salvatore

机构信息

Department of Paediatric Surgery, Royal Hospital for Sick Children, Glasgow, UK; Department of Paediatric Surgery, Ain Shams University, Abbassia, Cairo, Egypt.

Department of Paediatric Surgery, Royal Hospital for Sick Children, Glasgow, UK.

出版信息

J Pediatr Urol. 2015 Apr;11(2):89.e1-5. doi: 10.1016/j.jpurol.2014.11.024. Epub 2015 Mar 6.

Abstract

BACKGROUND

Adolescents with complex urological conditions are at risk of bladder dysfunction, metabolic disturbances, neoplastic changes and deterioration in renal function. Hence they require appropriate transition to the adult service to ensure lifelong urological care is adequately provided.

OBJECTIVE

Barriers and difficulties to the transition process have been identified in the literature. To overcome these difficulties an Adolescent Transition Urology Clinic (ATUC) was established in 2009 where the patients are seen by a paediatric and an adult urologist, a urology nurse and if needed an adolescent gynaecologist. Our aim was to assess the ATUC and present the patient's perspective to this new service using a validated questionnaire.

MATERIALS AND METHODS

Data of all patients seen at the ATUC over the study period were prospectively recorded. Patients who completed the transition were contacted and asked to complete two online urological transition questionnaires: 1) The Care Transition Measure 15 (CTM-15) which is a validated questionnaire to assess the quality of care during transition from the patients' perspective. 2) The Transition Care Experience (TCE) which was created for the purpose of this study.

RESULTS

Thirty patients attended the ATUC over 4.5 years, with 26 (87%) completing the transition to the adult urological care. Of the 26 patients there were 14 (54%) males with a mean age of 18 years. The most common underlying urological condition was neurogenic bladder (85%). Nineteen (73%) patients completed the questionnaires. Only 1 (5%) patient thought that attending the ATUC was not beneficial, 17 (89%) would recommend the ATUC to other adolescents and 9 (47%) patients considered 18 as the appropriate transition age. Overall, 74% thought that written information would have been useful and 21% considered the adult hospital as an inappropriate environment for young adults. After attending the ATUC, 2 (11%) patients thought their preferences were not met and 3 (16%) patients were not confident that they can take care of their health.

DISCUSSION

Transition of patients with complex urological conditions should aim to facilitate transferring the care from the parent to the patient and preparing the adolescent to adult life by addressing their sexual and reproductive functions. Inadequate transition can have serious health consequences. On-going communication between the paediatric and the adult urologist facilitates the transition process even after the transfer of care has occurred. The CTM-15 has been considered as "the only available measure of quality of care during transition from the patients' perspective". Our study suggests that the large majority of adolescent attending the clinic are confident in looking after their complex urological condition. In addition one patient in 5 found the adult hospital environment an inappropriate place for adolescents and they would have preferred longer follow up in a children's hospital. The value of written information after clinic consultation seems to be a useful adjunct that might facilitate the complex transition process.

CONCLUSION

This is the first report evaluating the transition of adolescents with complex urological conditions using a validated transition questionnaire. The combined paediatric/adult urology clinic is beneficial in addressing the patients' needs and allowing smooth transition of these complex patients to the adult service.

摘要

背景

患有复杂泌尿系统疾病的青少年存在膀胱功能障碍、代谢紊乱、肿瘤性病变及肾功能恶化的风险。因此,他们需要顺利过渡到成人医疗服务体系,以确保能获得充分的终身泌尿系统护理。

目的

文献中已明确了过渡过程中的障碍和困难。为克服这些困难,2009年设立了青少年过渡泌尿外科诊所(ATUC),由一名儿科泌尿外科医生、一名成人泌尿外科医生、一名泌尿外科护士,必要时还有一名青少年妇科医生为患者提供诊疗服务。我们的目的是评估ATUC,并使用经过验证的问卷呈现患者对这项新服务的看法。

材料与方法

前瞻性记录研究期间在ATUC就诊的所有患者的数据。联系已完成过渡的患者,要求他们完成两份在线泌尿外科过渡问卷:1)护理过渡量表15(CTM - 15),这是一份经过验证的问卷,用于从患者角度评估过渡期间的护理质量。2)过渡护理体验(TCE),该问卷为本研究专门设计。

结果

4.5年间有30名患者就诊于ATUC,其中26名(87%)完成了向成人泌尿外科护理的过渡。在这26名患者中,有14名(54%)为男性,平均年龄18岁。最常见的潜在泌尿系统疾病是神经源性膀胱(85%)。19名(73%)患者完成了问卷。只有1名(5%)患者认为就诊于ATUC没有益处,17名(89%)会向其他青少年推荐ATUC,9名(47%)患者认为18岁是合适的过渡年龄。总体而言,74%的患者认为书面信息会有所帮助,21%的患者认为成人医院对年轻人来说是不合适的环境。在就诊于ATUC后,2名(11%)患者认为他们的偏好未得到满足,3名(16%)患者对自己照顾自身健康没有信心。

讨论

患有复杂泌尿系统疾病患者的过渡应旨在促进护理从家长向患者的转移,并通过关注青少年的性和生殖功能,使其为成年生活做好准备。过渡不充分可能会导致严重的健康后果。即使在护理交接之后,儿科和成人泌尿外科医生之间持续的沟通也有助于过渡过程的顺利进行。CTM - 15被认为是“从患者角度衡量过渡期间护理质量的唯一可用指标”。我们的研究表明,就诊于该诊所的绝大多数青少年对照顾自己复杂的泌尿系统疾病充满信心。此外,五分之一的患者认为成人医院环境对青少年不合适,他们更希望在儿童医院接受更长时间的随访。诊所咨询后的书面信息似乎是一个有用的辅助手段,可能有助于这一复杂的过渡过程。

结论

这是第一份使用经过验证的过渡问卷评估患有复杂泌尿系统疾病青少年过渡情况的报告。儿科/成人联合泌尿外科诊所有助于满足患者需求,并使这些复杂患者顺利过渡到成人医疗服务体系。

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