Munce Sarah Ep, Fehlings Michael G, Straus Sharon E, Nugaeva Natalia, Jang Eunice, Webster Fiona, Jaglal Susan B
Institute of Health, Policy, Management and Evaluation, University of Toronto, 160-500 University Ave, Toronto M5G 1 V7, Ontario, Canada.
BMC Neurol. 2014 Oct 21;14:209. doi: 10.1186/s12883-014-0209-9.
Given the increasing emphasis on the community management of spinal cord injury (SCI), strategies that could be developed and implemented in order to empower and engage individuals with SCI in promoting their health and minimizing the risk of health conditions are required. A self-management program could be one approach to address these complex needs, including secondary complications. Thus, the objective of this study was to determine the importance attributed to the components of a self-management program by individuals with traumatic SCI and explore their views/opinions about the delivery of such a program.
Individuals with SCI were recruited by email via the Rick Hansen Institute (Vancouver, British Columbia, Canada) as well as an outpatient hospital spinal clinic. Data were collected by self-report using an on-line survey.
The final sample size was 99 individuals with traumatic SCI. The components of a self-management program that were rated as "very important" by the greatest proportion of participants included: exercise (n= 53; 53.5%), nutrition (n= 51; 51.5%), pain management (n= 44; 44.4%), information/education on aging with a SCI (n= 42; 42.4%), communicating with health care professionals (n= 40; 40.4%), problem solving (n= 40; 40.4%), transitioning from rehabilitation to the community (n= 40; 40.4%), and confidence (n= 40; 40.4%). Overall, 74.7% (n= 74) of the sample rated the overall importance of the development of a self-management program for individuals with traumatic SCI as "very important" or "important". Almost 40% (n= 39) of the sample indicated that an internet-based self-management program would be the best delivery format. The highest proportion of participants indicated that the program should have individuals of a similar level of injury (n= 74; 74.7%); having individuals of a similar age (n= 40; 40.4%) was also noted. Over one-quarter of the sample (n= 24) had a depression score consistent with significant symptoms of depression.
Future research is needed to further evaluate how the views of people with traumatic SCI change over time. Our findings could be used to develop and pilot test a self-management program for individuals with traumatic SCI.
鉴于对脊髓损伤（SCI）社区管理的日益重视，需要制定和实施一些策略，以便使SCI患者能够积极参与并自主管理自身健康，降低健康问题风险。自我管理计划可能是满足这些复杂需求（包括继发性并发症）的一种方法。因此，本研究的目的是确定创伤性SCI患者对自我管理计划各组成部分的重视程度，并探讨他们对实施此类计划的看法和意见。
通过电子邮件从里克·汉森研究所（加拿大不列颠哥伦比亚省温哥华）以及一家门诊医院的脊髓诊所招募SCI患者。使用在线调查问卷通过自我报告收集数据。
最终样本量为99名创伤性SCI患者。被最大比例参与者评为“非常重要”的自我管理计划组成部分包括：运动（n = 53；53.5%）、营养（n = 51；51.5%）、疼痛管理（n = 44；44.4%）、SCI患者衰老相关信息/教育（n = 42；42.4%）、与医护人员沟通（n = 40；40.4%）、解决问题（n = 40；40.4%）、从康复过渡到社区（n = 40；40.4%）以及信心（n = 40；40.4%）。总体而言，74.7%（n = 74）的样本认为为创伤性SCI患者制定自我管理计划的总体重要性为“非常重要”或“重要”。近40%（n = 39）的样本表示基于互联网的自我管理计划将是最佳实施形式。最高比例的参与者表示该计划应由损伤程度相似的个体组成（n = 74；74.7%）；也有一定比例的参与者提到应由年龄相似的个体组成（n = 40；40.4%）。超过四分之一的样本（n = 24）的抑郁评分与明显的抑郁症状相符。
需要进一步研究以评估创伤性SCI患者的观点如何随时间变化。我们的研究结果可用于为创伤性SCI患者制定和试行自我管理计划。
