The International Spinal Cord Injury Pediatric Activity and Participation Basic Data Set.,Spinal Cord Series and Cases

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The International Spinal Cord Injury Pediatric Activity and Participation Basic Data Set.
Spinal Cord Series and Cases ( IF 0.7 ) Pub Date : 2019-10-31 , DOI: 10.1038/s41394-019-0230-8
Miriam Hwang ₁ , Marika Augutis ₂ , Cristina Sadowsky ₃ , Wiebke Höfers ₄ , Lawrence C Vogel ₁ , Marcel Post ₅ , Susan Charlifue ₆ , Peter Wayne New _{7,

8,

9} , Rhona Fisher ₁₀ , Joan Carney ₃ , Kathryn Dent ₁₁ , M J Mulcahey ₁₁

Affiliation

1Research Department, Shriners Hospitals for Children, Chicago, IL USA.
2Department of Neurobiology, Core Sciences and Society, Karolinska Institute, Stockholm, Sweden.
Rehabilitation Department, Kennedy Krieger Rehabilitation Institute, Baltimore, MD USA.
4Physiotherapy Department, Sunnaas Hospital, Akershus, Norway.
5Center of Excellence for Rehabilitation Medicine, Brain Center Rudolf Magnus, University Utrecht and De Hoogstraat Rehabilitation, Utrecht, Netherlands.
6Research Department, Craig Hospital, Englewood, CO USA.
7Spinal Rehabilitation Service, Caulfield Hospital, Melbourne, VIC Australia.
8Epworth-Monash Rehabilitation Unit, Monash University, Melbourne, VIC Australia.
9Department of Epidemiology and Preventitive Medicine, School of Public Health and Preventiative Medicine, Monash University, Melbourne, VIC Australia.
Fisher Association, Baltimore, MD USA.
Department of Occupational Therapy, Center for Outcomes and Measurement, Jefferson College of Rehabilitation Sciences, Jefferson (Philadelphia University+Thomas Jefferson University), Philadelphia, PA USA.

Study design

International focus groups.

Objectives

The objective of this project was to develop the International Spinal Cord Injury (SCI) Pediatric Activity and Participation (A&P) Basic Data Set.

Methods

A focus group of experts in pediatric and adult SCI, and contributors of the existing adult International SCI Adult A&P Basic Data Set convened to develop an initial draft of the data set, which was iteratively refined over a 12 month period based on relevant literature and existing outcome measures that evaluate pediatric activity and participation. The draft was reviewed and approved by the larger project working group and then distributed to the International Spinal Cord Society (ISCoS), American Spinal Injury Association (ASIA), and relevant expert groups for review. Feedback received was considered before the final data set was approved.

Results

The International SCI Pediatric A&P Basic Data Set is comprised of 13 variables: administration date, mobility, dressing, feeding, toileting, communication, family outings, spending time with friends, being out with friends, participating in team or club activity, paid work, dating, and physical activity. It is intended for children between 6 and 17 years of age, who have been discharged from initial rehabilitation/hospitalization for a minimum of 3 months.

Conclusion

The International SCI Pediatric A&P Basic Data Set was developed to standardize the recording of a minimal amount of information about activities and participation in children with SCI. Further work on reliability and cultural validation is needed.

Sponsorship

This study was funded by the Rick Hansen Institute, Research Award #G2015-27 (Mulcahey, PI).

中文翻译：

国际脊髓损伤儿科活动和参与基本数据集。

研究设计

国际焦点小组。

目标

该项目的目标是开发国际脊髓损伤 (SCI) 儿科活动和参与 (A&P) 基本数据集。

方法

由儿科和成人 SCI 专家以及现有成人国际 SCI 成人 A&P 基本数据集的贡献者组成的焦点小组召开会议，制定了数据集的初稿，并根据相关文献和现有数据在 12 个月的时间内进行了迭代完善。评估儿科活动和参与的结果指标。该草案经过较大项目工作组的审查和批准，然后分发给国际脊髓学会（ISCoS）、美国脊柱损伤协会（ASIA）和相关专家组进行审查。在最终数据集获得批准之前，会考虑收到的反馈。