脊柱裂(SB)是一种复杂的先天性疾病,其特征是神经管的不完全闭合,导致不同程度的身体和神经损伤。尽管通常由多学科儿科诊所管理,大部分SB患者现在生活到成年,需要从儿科医疗过渡到成人医疗。这种转变为与SB及其家人一起生活的个人带来了无数挑战。先前对SB过渡计划的研究已经证明了轶事的成功;然而,关于过渡后早期健康结局和对医学建议的遵从性的研究很少发表.这项质量改进研究评估了过渡后早期对医疗建议的依从性,不良健康事件,获得医疗用品/设备,以及患者报告的健康结果和对医疗服务提供者的信心。
作者儿科机构脊柱裂过渡诊所的成年参与者被邀请在过渡到成人护理后完成电话调查。自过渡以来的平均时间(SEM)为1.21(0.11)年。调查评估了成人提供者的利用率,医疗用品和设备的可及性,不良医疗事件,遵守睡眠研究获取,患者报告的健康状况,以及对供应商的满意度。
在52名符合条件的参与者中,49人(94%)完成了电话调查。在队列中,82%患有开放性SB(脊髓膜膨出),其余有隐匿性SB(脂膜膜膨出)。过渡时的平均年龄为26.0岁。过渡以来,78%的人至少参加过一次初级保健访问,76%的人寻求至少一名成人护理专家的护理(69%寻求泌尿科医生的护理)。45%的人报告了不良医疗事件:31%的人需要急诊就诊,22%住院,18%接受了手术,24%的人皮肤破裂。获得医疗用品的途径多种多样,患者最难获得轮椅和辅助行走设备。患者对儿科提供者的参与度和SB知识的评分明显高于成人提供者(平均3.92vs3.32,p<0.001)。
这项质量改进研究评估了脊柱裂过渡诊所在过渡后早期的有效性。虽然患者使用了初级和专科护理(泌尿科),他们经历了许多不良事件,并且对睡眠研究的依从性较低.需要对过渡计划进行持续评估,以优化与SB一起生活的人的结果。
Spina bifida (SB) is a complex congenital condition characterized by incomplete closure of the neural tube, resulting in varying degrees of physical and neurological impairment. Although commonly managed by multidisciplinary pediatric clinics, a substantial proportion of SB patients are now living into adulthood, necessitating the transition from pediatric to adult healthcare. This transition introduces a myriad of challenges for individuals living with SB and their families. Prior research on SB transition programs has demonstrated anecdotal success; however, minimal research has been published on early posttransition health outcomes and compliance with medical recommendations. This quality improvement study assessed early posttransition compliance with medical recommendations, adverse health events, access to medical supplies/equipment, and patient-reported health outcome and confidence in medical providers.
Adult participants in the Spina Bifida Transition Clinic at the authors\' pediatric institution were invited to complete a telephone survey after transition to adult care. The mean (SEM) elapsed time since transition was 1.21 (0.11) years. The survey evaluated adult provider utilization, accessibility of medical supplies and equipment, adverse medical events, compliance with sleep study acquisition, patient-reported health status, and satisfaction with providers.
Of 52 eligible participants, 49 (94%) completed a telephone survey. Within the cohort, 82% had open SB (
myelomeningocele), with the remaining having occult SB (lipomyelomeningocele). The mean age at transition was 26.0 years. Since transition, 78% have attended at least one primary care visit, with 76% seeking care from at least one adult care specialist (69% sought care with urologists). Forty-five percent reported an adverse medical event: 31% required an emergency department visit, 22% were hospitalized, 18% underwent surgery, and 24% had skin breakdown. Access to medical supplies varied, with patients experiencing the most difficulty obtaining wheelchairs and assistive walking devices. Patients rated pediatric provider engagement and knowledge of SB significantly higher than adult providers (mean 3.92 vs 3.32, p < 0.001).
This quality improvement study evaluated the effectiveness of our Spina Bifida Transition Clinic in the early post transition period. While patients have used primary and specialty care (urology), they have experienced many adverse events and low compliance with sleep study acquisition. Continued evaluation of transition programs is required to optimize the outcome of those living with SB.