Cybulsky Andrey V, Cercena Leonor, Goodyer Paul R, Suri Rita S
Department of Medicine, McGill University Health Centre Research Institute, McGill University, Montreal, QC, Canada.
Department of Pediatrics, McGill University Health Centre Research Institute, McGill University, Montreal, QC, Canada.
Can J Kidney Health Dis. 2023 Aug 8;10:20543581231191836. doi: 10.1177/20543581231191836. eCollection 2023.
Adolescents and young adults with chronic disease face many personal and systemic barriers that may impede their successful transition from pediatric to adult care, putting them at risk for treatment nonadherence, loss to follow-up, and poor health outcomes. Such barriers include impaired socioemotional functioning, overreliance on adult caregivers, lack of disease-specific knowledge, and poor coordination between pediatric and adult health care services. In 2007, we established a specialized youth to adult nephrology transition clinic at a tertiary care center to address these barriers and provide adolescents and young adults with renal disease followed at the affiliated children's hospital with a seamless transition to adult care.
The attending clinic nephrologist collected data prospectively for this quality improvement report.
The features of this specialized clinic included (1) single point of entry and single triage adult nephrologist, (2) ongoing follow-up with a single adult nephrologist who communicated with the pediatric nephrologists, and (3) a single specialized clinic nurse who provided disease-specific education and helped to ensure ongoing patient engagement and follow-up. Importantly, the transition patients were booked into regular appointment slots in the adult nephrologist's general clinic, which facilitated regular follow-up without additional resources. The salary of the transition clinic nurse was covered by an unrestricted grant. Patient visits were in-person, except between 2020 and 2021 when visits were by telephone due to the pandemic.
A total of 213 patients were referred and assessed in the transition clinic from February 2007 until October 2022. Most referrals were from pediatric nephrologists. Among the patients, 29% had a hereditary kidney disease; in 71%, the disease was acquired. The most common disease was glomerulonephritis and ~30% of the patients suffered from a "rare" disease. Of the 213 patients, 123 (58%) continue to be followed up (mean follow-up: 4.8 years), 27 (13%) were transferred to other physicians, in part to accommodate treatment closer to patients' homes, and 29 (14%) without ongoing care needs were discharged. Only 33 (15%) were lost to follow-up. There were several advantages to the clinic, including the maintenance of accurate records, a process to minimize loss to follow-up, and a "critical mass" of patients with rare diseases, which facilitated development of special expertise in rare disease pathogenesis, diagnosis, treatment, and management of complications. Patients with glomerulonephritis demonstrated a stable serum creatinine over 3 to 15 years, and morbidity (as reflected by emergency room visits and hospitalizations) was low.
Due to the relatively small numbers of patients in the disease categories, it was not possible to determine conclusively whether attendance of patients in the transition clinic reduced the rate of progression of kidney disease or morbidity.
A dedicated referral, triage, and follow-up process post-transition with only modest financial resources and personnel can result in accurate tracking of clinic data, as well as consistent and reliable follow-up and expert patient care.
患有慢性病的青少年和青年面临许多个人和系统性障碍，这些障碍可能会阻碍他们从儿科护理顺利过渡到成人护理，使他们面临治疗依从性差、失访以及健康状况不佳的风险。此类障碍包括社会情感功能受损、过度依赖成人照顾者、缺乏特定疾病知识以及儿科和成人医疗服务之间协调不佳。2007年，我们在一家三级医疗中心设立了一家专门的青少年到成人肾脏病过渡诊所，以解决这些障碍，并为在附属儿童医院接受治疗的患有肾脏疾病的青少年和青年提供无缝过渡到成人护理的服务。
主治诊所的肾脏病医生为这份质量改进报告前瞻性地收集了数据。
这家专门诊所的特点包括：（1）单一入口点和单一分诊成人肾脏病医生；（2）由同一位与儿科肾脏病医生沟通的成人肾脏病医生进行持续随访；（3）一名专门的诊所护士，提供特定疾病教育，并帮助确保患者持续参与和随访。重要的是，过渡患者被安排在成人肾脏病医生普通诊所的常规预约时段，这便于在无需额外资源的情况下进行定期随访。过渡诊所护士的薪水由一笔无限制拨款支付。除了2020年至2021年因疫情通过电话就诊外，患者就诊均为面对面。
从2007年2月到2022年10月，共有213名患者被转诊到过渡诊所并接受评估。大多数转诊来自儿科肾脏病医生。在这些患者中，29%患有遗传性肾脏疾病；71%的疾病是后天获得的。最常见的疾病是肾小球肾炎，约30%的患者患有“罕见”疾病。在213名患者中，123名（58%）继续接受随访（平均随访时间：4.8年），27名（13%）被转至其他医生处，部分原因是为了在离患者家更近的地方接受治疗，29名（14%）不再有持续护理需求的患者出院。只有33名（15%）失访。该诊所具有多个优势，包括维护准确的记录、尽量减少失访的流程，以及患有罕见疾病的患者“临界数量”，这有助于在罕见疾病发病机制、诊断、治疗和并发症管理方面发展特殊专业知识。患有肾小球肾炎的患者在3至15年期间血清肌酐保持稳定，发病率（以急诊室就诊和住院次数反映）较低。
由于疾病类别中的患者数量相对较少，无法最终确定过渡诊所的患者就诊是否降低了肾脏疾病的进展速度或发病率。
在过渡后仅需适度的财力和人力进行专门的转诊、分诊和随访流程，就能实现对诊所数据的准确跟踪，以及持续、可靠的随访和专业的患者护理。
