TY - JOUR
T1 - Quality of life and the health system
T2 - A 22-country comparison of the situation of people with spinal cord injury
AU - InSCI
AU - Barzallo, Diana Pacheco
AU - Gross-Hemmi, Mirja
AU - Bickenbach, Jerome
AU - Juocevičius, Alvydas
AU - Popa, Daiana
AU - Wahyuni, Luh Karunia
AU - Strøm, Vegard
AU - Middleton, James W.
AU - Battistella, Linamara
AU - Li, Jianan
AU - Gutenbrunner, Christoph
AU - Rapidi, Christina Anastasia
AU - Saitoh, Eiichi
AU - Lee, Bum Suk
AU - Hajjioui, Abderrazak
AU - Stanghelle, Johan K.
AU - Baumberger, Michael
AU - Kovindha, Apichana
AU - Middleton, James W.
AU - Brach, Mirjam
AU - Fekete, Christine
AU - Thyrian, Christine
AU - Perrouin-Verbe, Brigitte
AU - Zampolini, Mauro
AU - Hasnan, Nazirah
AU - Tederko, Piotr
AU - Joseph, Conran
AU - Avellanet, Mercè
AU - Escorpizo, Reuben
AU - Engkasan, Julia Patrick
AU - Stucki, Gerold
AU - Post, Marcel W.M.
N1 - Funding Information:
This study is part of the InSCI Community Survey. InSCI provides the evidence for the Learning Health System for Spinal Cord Injury (LHS-SCI). See also Am J Phys Med Rehabil 2017;96(Suppl):S23-34). InSCI and the LHS-SCI are efforts to implement the recommendations of international perspectives on spinal cord injury (IPSCI) (Bickenbach JE, Officer A, Shakespeare T, von Groote P, editors. IPSCI. Geneva: WHO Press; 2013). The members of the InSCI Steering Committee are Julia Patrick Engkasan (ISPRM representative), James Middleton (ISCoS representative, member scientific committee, Australia), Gerold Stucki (chair scientific committee), Mirjam Brach (representative coordinating institute), Jerome Bickenbach (member scientific committee), Christine Fekete (member scientific committee), Christine Thyrian (representative study center), Linamara Battistella (Brazil), Jianan Li (China), Brigitte Perrouin-Verbe (France), Christoph Gutenbrunner (member scientific committee, Germany), Christina-Anastasia Rapidi (Greece), Luh Karunia Wahyuni (Indonesia), Mauro Zampolini (Italy), Eiichi Saitoh (Japan), Bum Suk Lee (Korea), Alvydas Juocevicius (Lithuania), Nazirah Hasnan (Malaysia), Abderrazak Hajjioui (Morocco), Marcel W.M. Post (member scientific committee, The Netherlands), Johan K. Stanghelle (Norway), Piotr Tederko (Poland), Daiana Popa (Romania), Conran Joseph (South Africa), Mercè Avellanet (Spain), Michael Baumberger (Switzerland), Apichana Kovindha (Thailand), and Reuben Escorpizo (Member Scientific Committee, United States).
Publisher Copyright:
© 2020 American Congress of Rehabilitation Medicine
PY - 2020/12
Y1 - 2020/12
N2 - Objective: To analyze and compare how performance of the health system are linked to the self-reported quality of life (QOL) of people with spinal cord injury (SCI) in 22 countries participating in the International Spinal Cord (InSCI) community survey. Design: Cross-sectional survey. Setting: Twenty-two countries representing all 6 World Health Organization regions, community setting. Participants: Persons (N=12,591) with traumatic or nontraumatic SCI aged ≥18 years. Interventions: Not applicable. Main outcomes: Self-reported satisfaction on several indicators that include: health, ability to perform daily activities, oneself, personal relationships, and living conditions. A total score of QOL was calculated using these 5 definitions. Results: The most important indicators for self-reported QOL of persons with SCI were social attitudes and access to health care services, followed by nursing care, access to public spaces, the provision of vocational rehabilitation, transportation, medication, and assistive devices. In general, persons with SCI living in higher-income countries reported a higher QOL than people in lower-income countries, with some exceptions. The top performing country was The Netherlands with an estimated median QOL of 66% (on a 0%-100% scale). Conclusions: The living situation of people with SCI is highly influenced by the performance of the health system. Measuring and comparing health systems give accountability to a country's citizens, but it also helps to determine areas for improvement.
AB - Objective: To analyze and compare how performance of the health system are linked to the self-reported quality of life (QOL) of people with spinal cord injury (SCI) in 22 countries participating in the International Spinal Cord (InSCI) community survey. Design: Cross-sectional survey. Setting: Twenty-two countries representing all 6 World Health Organization regions, community setting. Participants: Persons (N=12,591) with traumatic or nontraumatic SCI aged ≥18 years. Interventions: Not applicable. Main outcomes: Self-reported satisfaction on several indicators that include: health, ability to perform daily activities, oneself, personal relationships, and living conditions. A total score of QOL was calculated using these 5 definitions. Results: The most important indicators for self-reported QOL of persons with SCI were social attitudes and access to health care services, followed by nursing care, access to public spaces, the provision of vocational rehabilitation, transportation, medication, and assistive devices. In general, persons with SCI living in higher-income countries reported a higher QOL than people in lower-income countries, with some exceptions. The top performing country was The Netherlands with an estimated median QOL of 66% (on a 0%-100% scale). Conclusions: The living situation of people with SCI is highly influenced by the performance of the health system. Measuring and comparing health systems give accountability to a country's citizens, but it also helps to determine areas for improvement.
KW - Health care access
KW - Health care systems
KW - Health policy
KW - Quality of life
KW - Rehabilitation
UR - http://www.scopus.com/inward/record.url?scp=85087958110&partnerID=8YFLogxK
U2 - 10.1016/j.apmr.2020.04.030
DO - 10.1016/j.apmr.2020.04.030
M3 - Article
C2 - 32533934
AN - SCOPUS:85087958110
SN - 0003-9993
VL - 101
SP - 2167
EP - 2176
JO - Archives of Physical Medicine and Rehabilitation
JF - Archives of Physical Medicine and Rehabilitation
IS - 12
ER -
