Operative Unit of Neurosurgery, Spedali Civili di Brescia Hospital, Department of Medical and Surgical Specialties, Radiological Sciences and Public Health, University of Brescia, P.le Spedali Civili, 1, 25123, Brescia, Italy.
Operative Unit of Neurosurgery, Fondazione Poliambulanza Hospital, Brescia, Italy.
Acta Neurochir (Wien). 2022 Nov;164(11):2855-2866. doi: 10.1007/s00701-022-05275-x. Epub 2022 Jul 2.
Idiopathic normal pressure hydrocephalus (iNPH) is a potentially reversible disease. Surgical results have been well described in the literature, but only a few studies investigated the subjective outcome. This study aimed to investigate the patient's expectations about surgery, the perceived improvement after treatment, and its impact on the quality of life (QoL).
A new dedicated survey was created to investigate subjectively different aspects of the treatment pathway of iNPH (diagnosis, symptoms, expectations from surgery, surgical operation, surgical results, and postoperative QoL), together with the SF-12 and EQ-5D as validated, standardized tools.
Forty-five patients were included. Forty-three percent of cases received the diagnosis after at least 1 year, with symptoms worsening in 73%, and frustration in 93%. Reaching a diagnosis was important for 100% of patients, with high expectations from surgery; 86% of them hoped to return to a normal life. Seventy-two percent of patients reported a significant postoperative improvement (walking 68%, mood 57%). Memory and incontinence did not improve in 64% of cases. Subjectively, QoL improved in 72% of cases. The SF-12 score is comparable to controls >75 years, but lower than the 65-75 years group. The EQ-5D index was 0.66 (lower than those of the 65-75 years group = 0.823, and >75 years group = 0.724). Pain and discomfort, instead, were lower compared to the healthy population (43% vs 56%). The idea of having an implanted device and of long-term follow-up is not worrying for 80% of patients; approximately two-thirds of them reported a regained control of their lives.
The importance of early diagnosis and patients' perspective, alongside clinical evaluation, is highlighted. The self-reported evaluations on symptoms and QoL, along with the balance between postoperative worries and benefits, should be discussed preoperatively with patients and relatives, and included postoperatively to comprehensively assess the surgical outcome.
特发性正常压力脑积水（iNPH）是一种潜在可逆转的疾病。手术结果在文献中有很好的描述，但只有少数研究调查了主观结果。本研究旨在调查患者对手术的期望、治疗后的感知改善及其对生活质量（QoL）的影响。
创建了一个新的专用调查，以调查 iNPH 治疗途径的主观方面（诊断、症状、对手术的期望、手术操作、手术结果和术后 QoL），同时使用经过验证的标准化工具 SF-12 和 EQ-5D。
共纳入 45 例患者。43%的病例在至少 1 年后得到诊断，73%的病例症状加重，93%的病例感到沮丧。对 100%的患者来说，获得诊断很重要，他们对手术抱有很高的期望；其中 86%的患者希望恢复正常生活。72%的患者报告术后有显著改善（行走 68%，情绪 57%）。64%的患者记忆和尿失禁没有改善。72%的患者主观上认为 QoL 有所提高。SF-12 评分与>75 岁的对照组相当，但低于 65-75 岁组。EQ-5D 指数为 0.66（低于 65-75 岁组=0.823，高于 75 岁组=0.724）。相反，疼痛和不适程度低于健康人群（43%比 56%）。80%的患者对植入设备和长期随访的想法并不担心；大约三分之二的患者报告说他们重新掌控了自己的生活。
强调了早期诊断和患者观点的重要性，以及临床评估。应在术前与患者及其家属讨论症状和 QoL 的自我报告评估，以及术后对手术结果的担忧和益处之间的平衡，并在术后进行评估，以全面评估手术结果。
