对国家研究登记处的同意程度与创伤性脊髓损伤后的患者预后相关吗？一项基于人群的研究，来自里克·汉森脊髓损伤登记处。
Is the Level of Consent to a National Research Registry Associated With Patient Outcomes After Traumatic Spinal Cord Injury? A Population-Based Study From the Rick Hansen Spinal Cord Injury Registry.
作者信息
Dionne Antoine, Mac-Thiong Jean-Marc, Hong Heather A, Kurban Dilnur, Xu Jijie, Humphreys Suzanne, Bailey Chris, Barthélemy Dorothy, Christie Sean, Fourney Daryl, Linassi Gary, Loyola-Sanchez Adalberto, Paquet Jérôme, Sreenivasan Vidya, Townson Andrea, Tsai Eve, Noonan Vanessa, Richard-Denis Andréane
机构信息
From the Faculty of Medicine, University of Montreal, Montreal, QC, Canada (AD, J-MM-T, AR-D); Hôpital du Sacré-Cœur de Montréal, Montreal, QC, Canada (AD, J-MM-T, AR-D); Sainte-Justine University Hospital Research Center, Montréal, QC, Canada (J-MM-T); Praxis Spinal Cord Institute, Vancouver, BC, Canada (HAH, DK, JX, SH, VKN); Division of Orthopaedics, Department of Surgery, Schulich School of Medicine, Western University, London, ON, Canada (CB); École de réadaptation, Université de Montréal, Montreal, QC, Canada (DB); Centre de recherche interdisciplinaire en réadaptation, Institut universitaire sur la réadaptation en déficience physique de Montréal, Montréal, QC, Canada (DB); Department of Surgery (Neurosurgery), Dalhousie University, Halifax, NS, Canada (SC); Division of Neurosurgery, University of Saskatchewan, Royal University Hospital, Saskatoon, SK, Canada (DF); Department of Physical Medicine and Rehabilitation, University of Saskatchewan, The Rehabiliation Centre, Saskatoon, SK, Canada (AGL); Department of Medicine, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, AL, Canada (AL-S); CHU de Québec, Quebec, QC, Canada (JP); The Ottawa Hospital Rehabilitation Centre, Ottawa, ON, Canada (VS); Division of Physical Medicine and Rehabilitation, University of British Columbia, Vancouver, BC, Canada (AT); and The Ottawa Hospital, Ottawa Hospital Research Institute, University of Ottawa, Ottawa, ON, Canada (ET).
出版信息
Am J Phys Med Rehabil. 2025 Feb 1;104(2):130-137. doi: 10.1097/PHM.0000000000002549. Epub 2024 Dec 16.
OBJECTIVE
We examined the impact of consenting to the Rick Hansen Spinal Cord Injury Registry on outcomes: acute length of stay, in-hospital mortality, medical complications (pressure injuries and pneumonia), and the final discharge destination following a spinal cord injury using the national Rick Hansen Spinal Cord Injury Registry dataset.
DESIGN
A retrospective cohort study was conducted using Rick Hansen Spinal Cord Injury Registry participant data from 2014 to 2019. Participants approached for enrollment were grouped into 1) PC: provided full consent including community follow-up interviews, 2) DWC: declined community follow-up interviews but accepted minimal data collection that may include initial/final interviews and/or those who later withdrew consent, and 3) DC: declined consent to any participation. As no data was collected for the DC group, descriptive, bivariate, and multivariable regression analysis was limited to the PC and DWC groups.
RESULTS
Of 2811 participants, 2101 (74.7%) were PC, 553 (19.7%) were DWC, and 157 (5.6%) were DC. DWC participants had significantly longer acute length of stay, more acute pneumonias/pressure injuries, and were less likely to be discharged home than PC participants. All these associations-except pneumonia-remained significant in the multivariable analyses.
CONCLUSIONS
Not participating fully in Rick Hansen Spinal Cord Injury Registry was associated with more complications and longer hospital stays.
目的
我们利用全国性的瑞克·汉森脊髓损伤登记数据集，研究了同意加入瑞克·汉森脊髓损伤登记对脊髓损伤后结局的影响，这些结局包括急性住院时长、院内死亡率、医疗并发症（压疮和肺炎）以及最终出院去向。
设计
采用回顾性队列研究，使用2014年至2019年瑞克·汉森脊髓损伤登记参与者的数据。被邀请入组的参与者被分为三组：1）PC组：提供了包括社区随访访谈在内的完全同意；2）DWC组：拒绝社区随访访谈，但接受可能包括初次/末次访谈和/或后来撤回同意者的最少数据收集；3）DC组：拒绝任何参与的同意。由于未为DC组收集数据，描述性、双变量和多变量回归分析仅限于PC组和DWC组。
结果
在2811名参与者中，2101名（74.7%）为PC组，553名（19.7%）为DWC组，157名（5.6%）为DC组。与PC组参与者相比，DWC组参与者的急性住院时长显著更长，急性肺炎/压疮更多，出院回家的可能性更小。在多变量分析中，除肺炎外，所有这些关联均仍具有显著性。
结论
未充分参与瑞克·汉森脊髓损伤登记与更多并发症和更长住院时间相关。
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