Gracia J, González N, Gómez P, Guillén L, Domínguez J, Alba J
Servicio de Cirugía Pediátrica, Hospital Infantil Miguel Servet, Zaragoza.
Cir Pediatr. 1994 Jul;7(3):132-6.
We have analyzed some factors which can show the special health care given to spina bifida patients in two periods, from 1971, when the set Hospital was set up, to 1985 and from 1985 to 1991. In 1985 the position of medical coordinator for spina bifida was created, and at the same time, a spina bifida consultancy was set up. This consultancy was created to improve this coordination and to analyze urological problems. In the first period, there were 54 affected in our Hospital. Now there are 68 patients. The most important goal achieved with this coordination is the improvement in the relationship between the patient, family and doctor, based on a personalized attention, even though this is a difficult subject to quantify. Since 1985 we have seen a lower number of visits to the consultancies in general, but mainly in neurosurgery, urology and orthopedics, a mean of 119 in first period and 45 in the second period. The number of consultancy visits has been the same since the consultancy was set up (46 per year). The number of patients admitted to in hospital was also decreasing. The spina bifida consultancy involves only an hours work a week, the urology ward has been integrated into this, and this avoids the handicapped having to attend other specialized wards so often. The consultancy structure lets us send urine analyses results by post or recover the test results on the same day they are done. Analysing the number of X-ray examinations performed on those patients, the coordinators value is evident: we got a lower number of X-ray examinations, especially invasive, e.g. cystographies and urographies, the latter because they have been replaced by echographies.
我们分析了一些因素，这些因素能够体现1971年设立指定医院至1985年以及1985年至1991年这两个时期给予脊柱裂患者的特殊医疗护理情况。1985年设立了脊柱裂医疗协调员职位，同时还设立了一个脊柱裂咨询机构。设立这个咨询机构是为了加强这种协调并分析泌尿系统问题。在第一个时期，我们医院有54名患者受到影响。现在有68名患者。通过这种协调实现的最重要目标是，基于个性化护理改善患者、家庭和医生之间的关系，尽管这是一个难以量化的问题。自1985年以来，我们总体上看到咨询门诊的就诊次数有所减少，但主要是神经外科、泌尿外科和骨科，第一个时期平均为119次，第二个时期为45次。自咨询机构设立以来，咨询门诊的就诊次数一直保持不变（每年46次）。住院患者的数量也在减少。脊柱裂咨询机构每周只需要一个小时的工作时间，泌尿外科病房已并入其中，这避免了残障患者经常前往其他专科病房。咨询机构的架构使我们能够通过邮寄方式发送尿液分析结果，或者在检测结果出来的当天取回。分析对这些患者进行的X光检查数量，协调员的价值显而易见：我们进行的X光检查数量减少了，尤其是侵入性检查，如膀胱造影和静脉肾盂造影，后者减少是因为已被超声检查所取代。
