对于患有脊柱裂(SB)等复杂疾病的个人,跨学科护理和儿科到成人的过渡计划始终显示出医学和社会价值。这种跨学科诊所在儿科中很常见,但很少为成年人提供。这项基于调查的研究报告了与转型相关的信息,日常疼痛负担,以及对成人SB诊所护理服务的满意度。
根据成人SB诊所的经验观察,进行了23个问题的调查,IRB批准,分发给成年患者。许多受访者之前曾在该机构的儿科SB诊所接受过护理,并完成了向成人计划的过渡。回应被取消识别,分类,分类存储在安全数据库中,并使用SPSS进行统计分析。
在接受治疗的245名患者中,完成并分析了116项(47%)调查。那些从儿科到成人诊所直接过渡(定义为不到24个月的护理间隔)的人包括44%(n=51)的响应者。56%的替代组(n=65)有更长的差距,无组织或无过渡,或者在其他地方接受过儿科护理。研究人群的平均年龄为36岁,大多在作者机构接受过儿童保育,无论他们是直接过渡还是在护理方面存在差距(68%),并诊断为开放性脊髓膜膨出(78%)。对临床经验的总体满意度较高(主观10分平均得分为9.04)。基于过渡状态的日常生活活动独立性差异不显著,但是在多变量分析中,报告日常生活活动独立的患者发生每日疼痛的几率几乎高出4倍(p=0.024;OR3.86,95%CI1.19~12.5).最常见的改进领域包括改善获得护理和疼痛控制的机会。
儿科过渡过程和跨学科诊所可能有助于在综合环境中改善患者感知的结果和对SB护理的满意度。有必要进一步阐明疼痛控制的障碍,除了全面和纵向护理可以改善他们的方式。
Interdisciplinary care and pediatric to adult transitional programs have consistently shown medical and social value for individuals with complex medical conditions such as spina bifida (SB). Such interdisciplinary clinics are common in pediatrics but are rarely offered for adults. This survey-based study reports information related to transition, daily pain burden, and satisfaction with care delivery in an adult SB clinic.
A 23-question survey that was based on empirical observations from the adult SB clinic was formulated, IRB approved, and distributed to adult patients. Many respondents had previously received care at the institution\'s pediatric SB clinic and completed transition to the adult program. Responses were de-identified, categorized, stored in a secure database, and statistically analyzed using SPSS.
Of 245 patients approached, 116 (47%) surveys were completed and analyzed. Those who had a direct transition (defined as a less than 24-month gap in care) from the pediatric to the adult clinic comprised 44% (n = 51) of responders. The alternative group of 56% (n = 65) had a longer gap, disorganized or absent transition, or had pediatric care elsewhere. The study population had an average age of 36 years, had mostly received childhood care at the authors\' institution, regardless of whether they made a direct transition or had a gap in care (68%), and held the diagnosis of open myelomeningocele (78%). Overall satisfaction with the clinic experience was high (mean score 9.04 on a 10-point subjective scale). Differences regarding independence in activities of daily living based on transition status were not significant, but on multivariate analysis, those who reported independence in activities of daily living had an almost 4-fold higher odds of daily pain (p = 0.024; OR 3.86, 95% CI 1.19-12.5). The most frequently identified areas for improvement included improved access to care and pain control.
Pediatric transitional processes and interdisciplinary clinics may contribute to improved patient-perceived outcomes and satisfaction with their SB care in comprehensive settings. Further elucidation of barriers to pain control is warranted, in addition to ways in which comprehensive and longitudinal care can improve them.