GerSCI research project

Study on the living and care situation of people with spinal cord injuries in Germany

Man in a wheelchair
Copyright: Steve Buissinne, Pixabay

Project description

How do people with spinal cord injury assess their quality of life and health? Which healthcare providers are used most frequently? How satisfied are those affected with their life situation and what problems still need to be addressed at a social level? To date, there have been no satisfactory scientific answers to these and other questions. As such answers are also of international interest, for example in order to compare healthcare systems with each other and, if necessary, to derive political measures from them, the World Health Organization (WHO) is also calling on nation states to collect internationally comparable data on people with disabilities. In response to these demands, Swiss Paraplegic Research (SPF) initiated the International Spinal Cord Injury (InSCI) project in cooperation with the International Society of Physical and Rehabilitation Medicine (ISPRM) and the International Spinal Cord Society (ISCoS). The aim of this study is to collect global and reliable data on people with spinal cord injuries. Germany participated in this study with the German Spinal Cord Injury project (GerSCI). The project is based at the Clinical Department for Rehabilitation Medicine at Hannover Medical School (MHH), works closely with the German-speaking Medical Society for Paraplegia (DMGP) and is funded by the Manfred Sauer Foundation (MSS).
In the prospective cross-sectional study, data was collected between March and December 2017 using a questionnaire survey with a paper or online questionnaire in eight special centers for paraplegia that are institutional members of the DMGP. The results are listed below.

 

Key data

Sponsor: Manfred Sauer Foundation | Funding volume: €185,000
Project management: Prof. Dr. med. Christoph Gutenbrunner
Duration: 01.01.2016 to 31.12.2021

 

Project team

Melanie Blumenthal (until 2018)
Andrea Bökel
Dr. phil. Christoph Egen
Veronika Geng (Manfred Sauer Foundation)
Prof. Dr. med. Christoph Gutenbrunner
Prof. Dr. med. Christian Sturm

 

Project results and general publications

 

Scientific publications from the national study (GerSCI)

  • Blumenthal M, Geng V, Egen C, Gutenbrunner C. Paraplegia in Germany - Research data on the health, care and life situation of people with spinal cord injury. Phys Med Rehab Kuror 2016; 26: 303-308; DOI: https://doi.org/10.1055/s-0042-119073
  • Blumenthal M, Geng V, Egen C, Gutenbrunner C. People with Spinal Cord Injury in Germany. Am J Phys Med Rehabil 2017; 96 (Suppl): S66-S70; DOI: https://doi.org/10.1097/PHM.0000000000000584
  • Bökel A, Egen C, Gutenbrunner C, Weidner N, Moosburger J, Abel FR, Rupp R, Kalke YB, Liebscher T, Kurze I, Saur M, Geng V, Sturm C. Review article: Paraplegia in Germany - a survey on the living and care situation of people with spinal cord injury in Germany. Rehabilitation 2020; 59: 205-213. DOI: https: //doi.org/10.1055/a-1071-593
  • Bökel A, Dierks ML, Gutenbrunner C, Weidner N, Geng V, Kalke YB, Liebscher T, Abel FR, Sturm C. Perceived environmental barriers for people with spinal cord injury in Germany and their influence on quality of life. J Rehabil Med 2020. DOI: https: //doi.org/10.2340/16501977-2717
  • Gutenbrunner C, Blumenthal M, Geng V, Egen C. Rehabilitation Services Provision and Payment. Am J Phys Med Rehabil 2017; 96 (Suppl): S35-S40; DOI: https://doi.org/10.1097/PHM.0000000000000668
  • Martini L, Maus U, Bökel A, Geng V, Kalke Y-B, Liebscher T, Weidner N, Hoffmann F. Utilization of outpatient physical and occupational therapy in people with spinal cord injury in Germany: Results of the German Spinal Cord Injury (GerSCI) Survey. 2019. American Journal of Physical and Rehabilitation Medicine. 99(6):532-539. DOI: https://doi.org/10.1097/PHM.0000000000001366
  • Sturm C, Bökel A, Korallus C, Geng V, Kalke YB, Abel R, Kurze I, Gutenbrunner C. Promoting factors and barriers to participation in working life for people with spinal cord injury. J Occup Med Toxicol 2020; 15: 37. DOI https://doi.org/10.1186/s12995-020-00288-7

 

Scientific publications from the international study (InSCI)

  • Bickenbach J, Batistella L, Gutenbrunner C, Middleton J, Post MW; InSCI, Stucki G. The International Spinal Cord Injury Survey: The Way Forward. Arch Phys Med Rehabil 2020; 101 (12): 2227-2232. DOI: https://doi.org/10.1016/j.apmr.2020.06.011
  • Fekete C, Brach M, Ehrmann C, Post MWM; InSCI, Stucki G. Cohort Profile of the International Spinal Cord Injury Community Survey Implemented in 22 Countries. Arch Phys Med Rehabil 2020; 101(12): 2103-2111. DOI: https://doi.org/10.1016/j.apmr.2020.01.022
  • Fekete C, Post MW, Bickenbach J, Middleton J, Prodinger B, Selb M, Stucki G. International Spinal Cord Injury Community Survey (InSCI) group. A Structured Approach to Capture the Lived Experience of Spinal Cord Injury: Data Model and Questionnaire of the International Spinal Cord Injury Community Survey. Am J Phys Med Rehabil 2017; 96 (2 Suppl 1): S5-S16. DOI: https://doi.org/10.1097/PHM.0000000000000622
  • Fekete C, Arora M, Reinhardt JD, Gross-Hemmi M, Kyriakides A, Le Fort M, Patrick Engkasan J, Tough H. Partnership Status and Living Situation in Persons Experiencing Physical Disability in 22 Countries: Are There Patterns According to Individual and Country-Level Characteristics? Int J Environ Res Public Health 2020; 17(19): 7002. DOI: https:///doi.org/10.3390/ijerph17197002
  • Gross-Hemmi MH, Post MW, Ehrmann C, Fekete C, Hasnan N, Middleton JW, Reinhardt JD, Strøm V, Stucki G; International Spinal Cord Injury Community Survey (InSCI) Group. Study Protocol of the International Spinal Cord Injury (InSCI) Community Survey. Am J Phys Med Rehabil. 2017 Feb;96(2 Suppl 1):S23-S34. DOI: https://doi.org/10.1097/PHM.0000000000000647
  • Pacheco Barzallo D, Gross-Hemmi M, Bickenbach J, Juocevičius A, Popa D, Wahyuni LK; InSCI, Strøm V. Quality of Life and the Health System: A 22-Country Comparison of the Situation of People With Spinal Cord Injury. Arch Phys Med Rehabil 2020; 101(12): 2167-2176. DOI: https://doi.org/10.1016/j.apmr.2020.04.030
  • Reinhardt JD, Middleton J, Bökel A, Kovindha A, Kyriakides A, Hajjioui A, Kouda K; InSCI, Kujawa J. Environmental Barriers Experienced by People With Spinal Cord Injury Across 22 Countries: Results From a Cross-Sectional Survey. Arch Phys Med Rehabil 2020; 101(12): 2144-2156. DOI: https://doi.org/10.1016/j.apmr.2020.04.027
  • Stucki G, Bickenbach J. The Implementation Challenge and the Learning Health System for SCI Initiative. Am J Phys Med Rehabil 2017; 96 (2 Suppl 1): S55-S60. DOI: https://doi.org/10.1097/PHM.0000000000000672

 

Presentations and posters from the national study (GerSCI)

  • Bökel A, Blumenthal M, Egen C, Geng V, Gutenbrunner C. Living and care situation of people with spinal cord injury in Germany. Berlin: DRV publications 2019; 117: 321.
  • Bökel A, Sturm C, Kalke Y-B, Gutenbrunner C & GerSCI-Study-group. Labor market Participation of People with Spinal Cord Injury in Germany - Results of the German Spinal Cord Injury Survey. 14th International Society of Physical and Rehabilitation Medicine World Congress. Orlando: March 6th, 2020. Am J Phys Med Rehabil 2020; 99 (3S Suppl 1): a74; DOI: https://doi.org/10.1097/PHM.0000000000001387
  • Bökel A, Sturm C, Gutenbrunner C. Perceived environmental barriers of people with spinal cord injury in Germany. DRV publications 2020; 120: 87-88
  • Bökel A, GerSCI-Study-group, Gutenbrunner C. German Spinal Cord Injury Survey - Main results of lived experience of the German population with Spinal Cord Injury. 13th International Society of Physical and Rehabilitation Medicine World Congress. Kobe: 2019; 13. http://www.isprm2019.com/abstract/data/pdf/ISPRM2019_Program-en.pdf; p.129
  • Kalke Y-B, Bökel A, Gutenbrunner C & GerSCI-Study-group. The German Spinal Cord Injury Survey leads to a policy brief to the Ministry of health in Berlin on the World SCI Day 2019. 14th International Society of Physical and Rehabilitation Medicine World Congress. Orlando: March 8th, 2020. Am J Phys Med Rehabil 2020; 99 (3S Suppl 1): a362. DOI: https://doi.org/10.1097/PHM.0000000000001387
  • Gutenbrunner C, Egen C, Bökel A. Paraplegia in Germany - A national survey (German Spinal Cord Injury Survey (GerSCI)) A sub-project of the International Spinal Cord Community Survey (InSCI). 32nd Annual Conference of the German-speaking Medical Society for Paraplegiology e. V.. Koblenz: 2019; 32: 38.
  • Sturm C, Bökel A, Gutenbrunner C. Living and care situation of people with spinal cord injury in Germany. 124th Annual Congress of the German Society for Physical and Rehabilitative Medicine. 2019; 24.

 

Contact

Ms. Andrea Bökel, MSc.
Clinical Department for Rehabilitation Medicine (MHH)
Carl-Neuberg-Str. 1
30625 Hannover
Phone: +49 (0)511 532 4125
Mail: boekel.andrea@mh-hannover.de