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SwiSCI

SwiSCI - InSCI

„SwiSCI goes international“ – Über 10.000 querschnittgelähmte Menschen werden weltweit zu einer Umfrage eingeladen

Teilnehmende Länder der InSCI Studie

Aufgrund der erfolgreichen Umfrage im Jahr 2012 steht die neue SwiSCI Befragung im Jahr 2017 nun auch in einem internationalen Rahmen. Nicht nur in der Schweiz, sondern in 27 weiteren Ländern nehmen Menschen mit Querschnittlähmung an der Datenerhebung teil. Doch was ist eigentlich das Ziel der weltweiten „InSCI“ Studie und welchen Nutzen hat sie für die Betroffenen?

Was ist InSCI?

InSCI steht für „International Spinal Cord Injury Survey“ und ist eine internationale Befragung von Menschen mit einer Rückenmarksverletzung. Sie wird nach dem Vorbild der schweizweiten SwiSCI Studie durchgeführt. Genau wie in der Schweiz werden Informationen z.B. zur Gesundheitsversorgung, den Lebensbedingungen und Umweltfaktoren gesammelt. Die teilnehmenden Länder koordinieren die Studie im eigenen Land selbständig. Die Gesamtkoordination und Datenauswertung obliegt der Schweizer Paraplegiker-Forschung.

A Structured Approach to Capture the Lived Experience of Spinal Cord Injury

Fekete C, Post M, Bickenbach J, Middleton J, Prodinger B, Selb M, Stucki G: A Structured Approach to Capture the Lived Experience of Spinal Cord Injury. Data Model and Questionnaire of the International Spinal Cord Injury Community Survey. American Journal of Physical Medicine & Rehabilitation, Volume 96, Number 2 (Suppl), February 2017. 

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Gesundheit für alle? Ein Einblick in die Versorgung querschnittgelähmter Menschen in Norwegen, Südafrika und China

Mann im Rollstuhl fährt durch überfluteten Markt.

Das Gesundheitssystem dreier Länder zeigt, wie unterschiedlich Menschen mit Querschnittlähmung rehabilitiert werden. Genauso unterschiedlich sind auch die Hürden, die überwunden werden müssen, damit die InSCI-Umfrage überhaupt stattfinden kann.

Norwegen: Bis zu 70% der Betroffenen sind wieder erwerbstätig

Südafrika: Gewaltverbrechen sind häufigste Ursache für Rückenmarksverletzungen

China: Kaum Kontrolluntersuchungen nach der Rehabilitation

Nottwiler Studie ist internationales Vorbild

Die SwiSCI-Studie wurde zum ersten Mal auch international durchgeführt. Es beteiligten sich rund 12.500 Personen in 22 Ländern. Jetzt liegen erste Ergebnisse vor. 

Lesen Sie dazu den Artikel im Paraplegie, dem Gönnermagazin der Schweizer Paraplegiker-Stiftung (Ausgabe 01/2020)!

People with Spinal Cord Injury in China

Reinhardt J, Zheng Y, Xu G, Lu X, Yin Y, Liu S, Gao Q, Xiong X, He C, Li H, Li J: People with Spinal Cord Injury in China. American Journal of Physical Medicine & Rehabilitation, Volume 96, Number 2 (Suppl), February 2017. 

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People with Spinal Cord Injury in Germany

Blumenthal M, Geng V, Egen C, Gutenbrunner C: People with Spinal Cord Injury in Germany. American Journal of Physical Medicine & Rehabilitation, Volume 96, Number 2 (Suppl), February 2017.

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People with Spinal Cord Injury in Indonesia

Tulaar A, Karyana M, Wahyuni L, Paulus A, Tinduh D, Anestherita F, Wangge G: People with Spinal Cord Injury in Indonesia. American Journal of Physical Medicine & Rehabilitation, Volume 96, Number 2 (Suppl), February 2017.

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People with Spinal Cord Injury in Israel

Zwecker M, Wolff J, Shaoul T, Zeilig G, Treger I: People with Spinal Cord Injury in Israel. American Journal of Physical Medicine & Rehabilitation, Volume 96, Number 2 (Suppl), February 2017.

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People with Spinal Cord Injury in Italy

Baricich A, Amico A, Zampolini M, Gimigliano F, Cisari C, Fiore P: People with Spinal Cord Injury in Italy. American Journal of Physical Medicine & Rehabilitation, Volume 96, Number 2 (Suppl), February 2017.

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People with Spinal Cord Injury in Korea

Han Z, Lee B, Kim W, Lee S, Im H, Kim C, Song K, Ko H, Bang M, Park C: People with Spinal Cord Injury in Korea. American Journal of Physical Medicine & Rehabilitation, Volume 96, Number 2 (Suppl), February 2017.

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People with Spinal Cord Injury in Lithuania

Juocevicius A, Jamontaite I, Adomaviciene A: People with Spinal Cord Injury in Lithuania. American Journal of Physical Medicine & Rehabilitation, Volume 96, Number 2 (Suppl), February 2017.

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People with Spinal Cord Injury in Malaysia

Engkasan J, Hasnan N, Yusuf Y, Latif L: People with Spinal Cord Injury in Malaysia. American Journal of Physical Medicine & Rehabilitation, Volume 96, Number 2 (Suppl), February 2017.

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People with Spinal Cord Injury in New Zealand

Van den Heuvel M, Jansz L, Xiong X, Singhal B: People with Spinal Cord Injury in New Zealand. American Journal of Physical Medicine & Rehabilitation, Volume 96, Number 2 (Suppl), February 2017.

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People with Spinal Cord Injury in Norway

Strøm V, Månum G, Leiulfsrud A, Wedege P, Rekand T, Halvorsen A, Fjellheim L, Stanghelle J: People with Spinal Cord Injury in Norway.American Journal of Physical Medicine & Rehabilitation, Volume 96, Number 2 (Suppl), February 2017. 

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People with Spinal Cord Injury in Poland

Tederko P, Jagodziński R, Krasuski M, Tarnacka B: People with Spinal Cord Injury in Poland. American Journal of Physical Medicine & Rehabilitation, Volume 96, Number 2 (Suppl), February 2017.

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People with Spinal Cord Injury in Portugal

Campos I, Margalho P, Lopes A, Branco C, Faria F, Caldas J, Cunha M, Andrade M, Lains J: People with Spinal Cord Injury in Portugal. American Journal of Physical Medicine & Rehabilitation, Volume 96, Number 2 (Suppl), February 2017.

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People with Spinal Cord Injury in South Africa

 Joseph C, Scriba D, Wilson V, Mothabeng J, Theron F: People with Spinal Cord Injury in South Africa. American Journal of Physical Medicine & Rehabilitation, Volume 96, Number 2 (Suppl), February 2017.

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People with Spinal Cord Injury in Spain

Avellanet M, Gonzalez-Viejo M: People with Spinal Cord Injury in Spain. American Journal of Physical Medicine & Rehabilitation, Volume 96, Number 2 (Suppl), February 2017.

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People with Spinal Cord Injury in Switzerland

Gross-Hemmi M, Pacheco Barzallo D: People with Spinal Cord Injury in Switzerland. American Journal of Physical Medicine & Rehabilitation, Volume 96, Number 2 (Suppl), February 2017. 

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People with Spinal Cord Injury in Thailand

Kovindha A: People with Spinal Cord Injury in Thailand. American Journal of Physical Medicine & Rehabilitation, Volume 96, Number 2 (Suppl), February 2017.

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People with Spinal Cord Injury in the Netherlands

Post M, Nooijen C, Postma K, Dekkers J, Penninx F, van den Berg-Emons R, Stam H: People with Spinal Cord Injury in the Netherlands. American Journal of Physical Medicine & Rehabilitation, Volume 96, Number 2 (Suppl), February 2017.

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People with Spinal Cord Injury in the United States

Richards C, MacKenzie N, Roberts S, Escorpizo R: People with Spinal Cord Injury in the United States. American Journal of Physical Medicine & Rehabilitation, Volume 96, Number 2 (Suppl), February 2017.

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Rehabilitation Services Provision and Payment

Gutenbrunner C, Blumenthal M, Geng V, Egen C: Rehabilitation Services Provision and Payment. American Journal of Physical Medicine & Rehabilitation, Volume 96, Number 2 (Suppl), February 2017. 

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The Cross-Cultural Societal Response to SCI

Pacheco Barzallo D, Gross-Hemmi M: The Cross-Cultural Societal Response to SCI. American Journal of Physical Medicine & Rehabilitation, Volume 96, Number 2 (Suppl), February 2017. 

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The International Spinal Cord Injury Survey - InSCI

InSCI is the first national-level, health condition-specific survey, entirely structured and linked to the ICF and implemented across a variety of countries.

InSCI is an international community survey, initiated by Swiss Paraplegic Research in Switzerland. The survey was conducted in 2017 and 2018 in 22 countries, across 6 regions of the World Health Organization (WHO). The survey is grounded in the International Classification of Functioning, Disability and Health (ICF), both in terms of the dimensions of the experience of SCI and in terms of the underlying conceptualization of functioning.

World map INSCI

Please click on the map: Participating countries in the InSCI survey 2017

The overall objective of InSCI is to identify the factors that explain functioning and well-being of people living with SCI in the context of health, health-related, and other social and political systems, policies, services, and care provision. The survey will provide comprehensive and comparable information about the lived experience of disability.

Next to the international module, the survey contains so called "national modules", specified for each participating country. They are focused more in detail for example in employment, the level of social integration and acceptance, and social participation like sports activities.

The InSCI survey will be operazionalized at 5-year intervals. The next survey is planned for 2022.

The international spinal cord injury survey and the learning health system for SCI

The special issue, published in the American Journal of Physical Medicine and Rehabilitation, is about the learning health system for spinal cord injury initiative, and in particular the international Spinal Cord Injury Survey (InSCI) that is the essential data platform for this initiative. 

The special issue begins by introducing the components of the learning health system for SCI, focusing primarily on the technical aspects of the InSCI survey and its implementation. For context, an introduction of the learning health system approach as well as the implementation strategy of stakeholder dialogues, is also included. The second part of the issue provides a sample of the participating countries. Each country profile contains a baseline of the SCI experience in the country, a review of the understanding of the societal response, and a description of the own survey strategy. 

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Über 12.500 Personen nahmen teil! Die erste internationale Befragung nach dem Vorbild von SwiSCI ist abgeschlossen

Weltkarte

InSCI steht für „International Spinal Cord Injury Survey“ und ist die erste weltweite Befragung von Menschen mit Rückenmarksverletzungen. Ziel ist eine internationale „Bestandsaufnahme“ der Lebensbedingungen und der Gesundheitsversorgung querschnittgelähmter Menschen. Dabei liegt der Fokus nicht nur auf den drängendsten Probleme im Alltag der Betroffenen, sondern auch auf den länderspezifischen Rehabilitationsmassnahmen und Mechanismen der Gesundheitsversorgung.

Die InSCI Befragung bildet somit ein Instrument, international vergleichbare Daten zu generieren, auf dessen Grundlage praxistaugliche Lösungen entwickelt werden können. 

Die internationale Befragung unter Koordination der Schweizer Paraplegiker-Forschung fand zwischen März 2017 und März 2019 statt. 22 Länder nahmen mit insgesamt 12.500 Personen teil. Erste ländervergleichende Ergebnisse werden 2020 veröffentlicht. 

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