Showalter Victor C, Salazar Angela C, Wilson Jason M, Ming Jessica M
University of New Mexico, USA.
Health Care Transit. 2024 Jul 9;2:100062. doi: 10.1016/j.hctj.2024.100062. eCollection 2024.
To evaluate the readiness of pediatric spina bifida (SB) patients to transition from pediatric to adult urologic care. Since 1975 the survival rate of SB has increased from less than 50 % to 85 %. Adult SB patients have increased urologic needs due to their increased risk of complications including: 7-11 times risk of renal failure, 2 times risk of bladder cancer, and 46 times risk likely of UTIs. These SB complications resulted in 37,000 hospitalization from 2004-2005 with one third of those being deemed preventable. Research has shown that adult SB patients who have successfully transitioned to adult care utilize less care 5.33 annual ambulatory visits compared to 7.25 in the non-transitioned counterparts. Our goal is to evaluate barriers, concerns, and comfort in skills deemed necessary for an SB patient's successful transition to adult care in a resource poor state.
All SB patients between the ages of 12-18 who participate in the multidisciplinary clinic and are seen by urology at UNM were eligible and offered to complete a questionnaire prior to their clinic visit. The questionnaire addressed awareness, fears and desire to learn about transitioning.
Of the SB patients that were eligible for the study 10 have filled out the survey. The average age is 17.7. While 70 % know the meaning of transition, only 40 % have thought about the process. 70 % of patients believe the best age to transition is 19-21. The most prominent fears about transition included leaving current urologist (60 %), increasing responsibility for their own care (50 %), and the new urologist not knowing their past medical history (50 %) (Fig 1). Questions evaluating preferred method transition education 60 % preferred talking with the pediatric urologist, and marked they would like to meet with the pediatric urologist and adult urologist simultaneously.
评估小儿脊柱裂（SB）患者从儿科过渡到成人泌尿外科护理的准备情况。自1975年以来，SB患者的生存率已从不到50%提高到85%。成年SB患者的泌尿外科需求增加，因为他们出现并发症的风险增加，包括：肾衰竭风险增加7至11倍、膀胱癌风险增加2倍、尿路感染风险可能增加46倍。这些SB并发症在2004年至2005年期间导致37000人次住院，其中三分之一被认为是可预防的。研究表明，成功过渡到成人护理的成年SB患者每年的门诊就诊次数较少（5.33次），而未过渡的患者为7.25次。我们的目标是评估资源匮乏地区SB患者成功过渡到成人护理所需技能方面的障碍、担忧和舒适度。
所有年龄在12至18岁之间、参加多学科诊所且在新墨西哥大学接受泌尿外科诊治的SB患者均符合条件，并在诊所就诊前被邀请填写一份问卷。该问卷涉及对过渡的认知、恐惧以及了解过渡的愿望。
符合该研究条件的SB患者中有10人填写了调查问卷。平均年龄为17.7岁。虽然70%的人知道过渡的含义，但只有40%的人考虑过这个过程。70%的患者认为最佳过渡年龄是19至21岁。对过渡最突出的担忧包括离开现任泌尿外科医生（60%）、对自己的护理责任增加（50%）以及新的泌尿外科医生不了解他们过去的病史（50%）（图1）。评估首选过渡教育方法的问题中，60%的人更喜欢与儿科泌尿外科医生交谈，并表示希望同时与儿科泌尿外科医生和成人泌尿外科医生会面。
