Tran Peter, Nguyen Christopher Q, Huang Melissa, Pham Judy, Ly Catthi, Shah Ishan, Sahyouni Ronald, Poole Cassie, Tran Kieu, Chen Jefferson W
Neurosurgery, University of California, Irvine Medical Center, Orange, USA.
Neurosurgery, University of California, Irvine School of Medicine, Orange, USA.
Cureus. 2019 Jun 26;11(6):e5007. doi: 10.7759/cureus.5007.
Normal pressure hydrocephalus (NPH) is a debilitating, neurological condition that can lead to mental deterioration. With the diagnosis and treatment of NPH constantly evolving and its symptoms worsening with age, education for patients and their families is crucial. In this study, we aim to explore the potential educational benefits of a physician-led NPH support group.
Between December 2015 and November 2018, six semiannual NPH support group meetings were held for patients and their families. Attendees, ages 20-90, completed a Likert scale-based survey designed to assess the support group's educational benefits using the following primary outcome variables: (1) subjective knowledge, (2) perceived utility/efficacy, and (3) patient satisfaction.
Our survey data suggests that patients and their family members agree on the efficacy of the support group in learning about NPH. They felt that the support group served its purpose and improved their comfort/knowledge regarding NPH. There was consensus about sustaining and maintaining the support group for the future. Of 65 survey responses, the composite average score of questions pertaining to subjective knowledge, perceived utility/efficacy, and patient satisfaction was 4.5 out of 5.0.
We demonstrated that support groups are effective in educating the adult NPH population and their family/friends about NPH onset and treatment. Enhanced educational awareness for patients and families can help patients cope with their neurological condition and improve patient adherence to follow-up and physician recommendations.
正常压力脑积水（NPH）是一种使人衰弱的神经系统疾病，可导致智力衰退。随着NPH诊断和治疗方法不断发展，且其症状会随着年龄增长而恶化，对患者及其家属进行教育至关重要。在本研究中，我们旨在探讨由医生主导的NPH支持小组可能带来的教育益处。
在2015年12月至2018年11月期间，为患者及其家属举办了六次半年一次的NPH支持小组会议。年龄在20 - 90岁之间的与会者完成了一项基于李克特量表的调查，该调查旨在使用以下主要结果变量评估支持小组的教育益处：（1）主观知识，（2）感知效用/功效，以及（3）患者满意度。
我们的调查数据表明，患者及其家属一致认为支持小组在了解NPH方面是有效的。他们觉得支持小组达到了目的，并提高了他们对NPH的舒适度/知识水平。对于在未来维持和保留该支持小组存在共识。在65份调查回复中，与主观知识、感知效用/功效和患者满意度相关问题的综合平均得分是5.0分中的4.5分。
我们证明了支持小组在对成年NPH患者及其家人/朋友进行NPH发病和治疗教育方面是有效的。提高患者及其家属的教育意识可以帮助患者应对其神经系统疾病，并提高患者对后续治疗和医生建议的依从性。
