Neurosurg Focus. 2024 Aug 1;57(2):E9. doi: 10.3171/2024.5.FOCUS24264.
The transition from pediatric to adult care is challenging for patients and families with spina bifida (SB). Lifelong care relationships yield to new care environments that are typically larger, less personal, and less engaged with the nuances of SB care. Adolescence and young adulthood are often characterized by personal and psychological stresses due to factors independent of illness or chronic medical complexity. Surveys have demonstrated that transition is associated with uncertainty, anxiety, and elevated risk of adverse events for many SB patients. To help mitigate this, the authors developed a trial mentorship program between teen patients with SB and undergraduate/medical students. This study analyzes and presents the initial outcomes from this program.
The authors created the Join, Unite, Motivate, and Prepare (JUMP) program to improve readiness for the transition process. The mentee target population was patients aged 13-19 years receiving care at the authors' SB clinic. Mentors were screened/approved undergraduate/medical students who volunteered to participate and successfully completed online training in mentorship. Upon enrollment, each patient set a combination of clinical, self, and parent/guardian goals using the individualized transition plan. These goals were shared with the mentor, mentee, parent/guardian, and physician. To monitor success, the SB program director routinely met with each mentor to discuss progress made and areas of growth. These included continuous quantitative and qualitative goal setting and failures that needed to be addressed for each agenda.
Thirteen mentor-mentee matches were created over 9 months. Of the 13 matches, 6 had more than 5 communications after the initial meeting, and 1 mentor-mentee match is still in contact today. Noted success in the program has been through mentees gaining employment, applying for scholarships, starting college, and connecting with others who are going through similar circumstances. Challenges have arisen through failure to follow-up after the initial office visit, risk with using the virtual platform, and wide geographic dispersion of both mentors and mentees across the authors' state.
Transition from pediatric to adult care for adolescents with SB has proven to be a large hurdle. Easing this process through well-thought-out, interactive processes has the potential to improve readiness, increase patient autonomy, and provide exposure to the adult healthcare community. However, the mentorship model, in the SB setting, has not proven to be the remedy.
对于患有脊柱裂（SB）的患者及其家庭来说，从儿科护理过渡到成人护理具有挑战性。长期的护理关系让位于新的护理环境，这些环境通常更大、更不人性化，对 SB 护理的细微差别也参与度较低。青少年和青年时期通常由于与疾病或慢性医疗复杂性无关的因素而导致个人和心理压力。调查表明，对于许多 SB 患者来说，过渡与不确定性、焦虑和不良事件风险增加有关。为了帮助减轻这种情况，作者在患有 SB 的青少年患者和本科生/医学生之间开发了一项试验性导师计划。本研究分析并介绍了该计划的初步结果。
作者创建了“加入、团结、激励和准备（JUMP）”计划，以提高过渡过程的准备程度。学员的目标人群是在作者的 SB 诊所接受护理的 13-19 岁患者。导师是经过筛选/批准的本科生/医学生，他们自愿参与并成功完成了在线导师培训。入学后，每位患者使用个性化的过渡计划设定了一系列临床、自我和家长/监护人目标。这些目标与导师、学员、家长/监护人以及医生共享。为了监测成功，SB 项目主任定期与每位导师会面，讨论进展情况和成长领域。这些包括不断的定量和定性目标设定以及需要解决的每个议程中的失败。
在 9 个月的时间里，创建了 13 个导师-学员配对。在 13 个匹配中，有 6 个在初次会议后进行了超过 5 次沟通，并且 1 个导师-学员配对仍在保持联系。该计划取得的显著成功是学员获得了就业机会、申请奖学金、开始上大学以及与正在经历类似情况的其他人建立联系。挑战来自于初次就诊后的随访失败、使用虚拟平台的风险以及导师和学员在作者所在州的广泛地理分布。
对于患有 SB 的青少年来说，从儿科护理过渡到成人护理已被证明是一个巨大的障碍。通过深思熟虑、互动的过程来缓解这一过程，有可能提高准备程度、增加患者的自主权，并让他们接触到成人医疗保健社区。然而，在 SB 环境中，导师模式并未被证明是有效的解决方案。
