Participation and quality of life in persons living with spinal cord injury in Norway
DOI:
https://doi.org/10.2340/16501977-2858Keywords:
spinal cord injuries, participation, quality of life, NorwayAbstract
Objectives: To describe the association between sociodemographic and spinal cord injury characteristics, of people living with spinal cord injury, and participation and quality of life, and to study the association between participation and quality of life in this group of people.
Design: Persons registered in the Norwegian Spinal Cord Injury Registry after post-acute rehabilitation between 2011 and 2017 were invited to participate in a survey in 2019 when they were in a community setting.
Subjects: A total of 339 people living with spinal cord injury.
Methods: The Frequency scale and Restrictions scale of the Utrecht Scale for Evaluation of Rehabilitation-Participation were used to measure participation. Quality of life was measured as life satisfaction with the World Health Organization Quality of life assessment (WHOQoL-5) and mental health was measured using the Mental Health subscale (MHI-5).
Results: Overall, sociodemographic characteristics were more prominently associated with quality of life and participation than were spinal cord injury characteristics. Currently working as main activity and having a family income in the highest quartile were associated with higher scores on all 4 measures of participation and quality of life. There was a strong gradient between higher level of participation (frequency and restrictions) and better quality of life.
Conclusion: Participation was strongly associated with life satisfaction and mental health in people living with spinal cord injury. This indicates that participation issues should be given greater priority during post-acute rehabilitation, follow-up and subsequent care efforts provided in the community.
Lay Abstract
Having paid work, leisure-time activities and good relationships with other people is important for one’s quality of life. For people living with spinal cord injury, it may be more difficult to participate in such activities than it is for people without health problems. A survey on participation problems was carried out among Norwegians living with spinal cord injury. Sociodemographic factors, such as family income and education, were found to have a greater impact on quality of life and participation, than the severity of the injury itself. Participation was strongly associated with life satisfaction and mental health. This indicates that participation issues should be given greater priority.
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Fekete C, Siegrist J, Post MWM, Brinkhof MWG, Swi SCISG. Productive activities, mental health and quality of life in disability: exploring the role enhancement and the role strain hypotheses. BMC Psychol 2019; 7: 1. https://doi.org/10.1186/s40359-018-0276-6
Gupta S, Jaiswal A, Norman K, DePaul V. Heterogeneity and its impact on rehabilitation outcomes and interventions for community reintegration in people with spinal cord injuries: an integrative review. Top Spinal Cord Inj Rehabil 2019; 25: 164-185. https://doi.org/10.1310/sci2502-164
Barclay L, McDonald R, Lentin P. Social and community participation following spinal cord injury: a critical review. Int J Rehabil Res 2015; 38: 1-19. https://doi.org/10.1097/MRR.0000000000000085
Perenboom RJ, Chorus AM. Measuring participation according to the International Classification of Functioning, Disability and Health (ICF). Disabil Rehabil 2003; 25: 577-587. https://doi.org/10.1080/0963828031000137081
Whiteneck G, Dijkers MPJAopm, rehabilitation. Difficult to measure constructs: conceptual and methodological issues concerning participation and environmental factors. 2009; 90: S22-S35. https://doi.org/10.1016/j.apmr.2009.06.009
Piskur B, Daniels R, Jongmans MJ, Ketelaar M, Smeets RJ, Norton M, et al. Participation and social participation: are they distinct concepts? Clin Rehabil 2014; 28: 211-220. https://doi.org/10.1177/0269215513499029
The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med 1995; 41: 1403-1409. https://doi.org/10.1016/0277-9536(95)00112-K
van Leeuwen CM, Kraaijeveld S, Lindeman E, Post MW. Associations between psychological factors and quality of life ratings in persons with spinal cord injury: a systematic review. Spinal Cord 2012; 50: 174-187. https://doi.org/10.1038/sc.2011.120
Post MW, van Leeuwen CM. Psychosocial issues in spinal cord injury: a review. Spinal Cord 2012; 50: 382-389. https://doi.org/10.1038/sc.2011.182
Carrard V, Kunz S, Peter C. Mental health, quality of life, self-efficacy, and social support of individuals living with spinal cord injury in Switzerland compared to that of the general population. Spinal Cord 2020; 10.1038/s41393-020-00582-5. https://doi.org/10.1038/s41393-020-00582-5
van Koppenhagen CF, Post MW, van der Woude LH, de Witte LP, van Asbeck FW, de Groot S, et al. Changes and determinants of life satisfaction after spinal cord injury: a cohort study in the Netherlands. Arch Phys Med Rehabil 2008; 89: 1733-1740. https://doi.org/10.1016/j.apmr.2007.12.042
Putzke JD, Richards JS, Hicken BL, DeVivo MJ. Predictors of life satisfaction: a spinal cord injury cohort study. Arch Phys Med Rehabil 2002; 83: 555-561. https://doi.org/10.1053/apmr.2002.31173
Muller R, Landmann G, Bechir M, Hinrichs T, Arnet U, Jordan X, et al. Chronic pain, depression and quality of life in individuals with spinal cord injury: mediating role of participation. J Rehabil Med 2017; 49: 489-496. https://doi.org/10.2340/16501977-2241
Kent M, Dorstyn DJSC. Psychological variables associated with employment following spinal cord injury: a meta-analysis. 2014; 52: 722-728.
https://doi.org/10.1038/sc.2014.92
van Leeuwen CM, Post MW, van Asbeck FW, Bongers-Janssen HM, van der Woude LH, de Groot S, et al. Life satisfaction in people with spinal cord injury during the first five years after discharge from inpatient rehabilitation. Disabil Rehabil 2012; 34: 76-83. https://doi.org/10.3109/09638288.2011.587089
Aaby A, Ravn SL, Kasch H, Andersen TE. The associations of acceptance with quality of life and mental health following spinal cord injury: a systematic review. Spinal Cord 2020; 58: 130-148. https://doi.org/10.1038/s41393-019-0379-9
Tate DG, Kalpakjian CZ, Forchheimer MB. Quality of life issues in individuals with spinal cord injury. Arch Phys Med Rehabil 2002; 83: S18-25. https://doi.org/10.1053/apmr.2002.36835
van Leeuwen CM, Post MW, Westers P, van der Woude LH, de Groot S, Sluis T, et al. Relationships between activities, participation, personal factors, mental health, and life satisfaction in persons with spinal cord injury. Arch Phys Med Rehabil 2012; 93: 82-89.
https://doi.org/10.1016/j.apmr.2011.07.203
Post MW, van der Zee CH, Hennink J, Schafrat CG, Visser-Meily JM, van Berlekom SB. Validity of the Utrecht Scale for Evaluation of Rehabilitation-Participation. Disabil Rehabil 2012; 34: 478-485. https://doi.org/10.3109/09638288.2011.608148
Mader L, Post MW, Ballert CS, Michel G, Stucki G, Brinkhof MW. Metric properties of the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation) in persons with spinal cord injury living in Switzerland. J Rehabil Med 2016; 48: 165-174. https://doi.org/10.2340/16501977-2010
Geyh S, Fellinghauer BA, Kirchberger I, Post MW. Cross-cultural validity of four quality of life scales in persons with spinal cord injury. Health Qual Life Outcomes 2010; 8: 94. https://doi.org/10.1186/1477-7525-8-94
Van Leeuwen C, Van Der Woude L, Post MJSC. Validity of the mental health subscale of the SF-36 in persons with spinal cord injury. Spinal Cord 2012; 50: 707-710. https://doi.org/10.1038/sc.2012.33
Charlifue S, Post M, Biering-Sørensen F, Catz A, Dijkers M, Geyh S, et al. International spinal cord injury quality of life basic data set. J Spinal Cord 2012; 50: 672-675. https://doi.org/10.1038/sc.2012.27
Biering-Sorensen F, DeVivo MJ, Charlifue S, Chen Y, New PW, Noonan V, et al. International Spinal Cord Injury Core Data Set (version 2.0)-including standardization of reporting. Spinal Cord 2017; 55: 759-764. https://doi.org/10.1038/sc.2017.59
DeVivo M, Biering-Sorensen F, Charlifue S, Noonan V, Post M, Stripling T, et al. International Spinal Cord Injury Core Data Set. Spinal Cord 2006; 44: 535-540. https://doi.org/10.1038/sj.sc.3101958
Kirshblum SC, Burns SP, Biering-Sorensen F, Donovan W, Graves DE, Jha A, et al. International standards for neurological classification of spinal cord injury (revised 2011). J Spinal Cord Med 2011; 34: 535-546. https://doi.org/10.1179/204577211X13207446293695
Fekete C, Eriks-Hoogland I, Baumberger M, Catz A, Itzkovich M, Luthi H, et al. Development and validation of a self-report version of the Spinal Cord Independence Measure (SCIM III). Spinal Cord 2013; 51: 40-47. https://doi.org/10.1038/sc.2012.87
DeVivo MJ, Biering-Sorensen F, New P, Chen Y. Standardization of data analysis and reporting of results from the International Spinal Cord Injury Core Data Set. Spinal Cord 2011; 49: 596-599. https://doi.org/10.1038/sc.2010.172
Zurcher C, Tough H, Fekete C, Swi SCISG. Mental health in individuals with spinal cord injury: the role of socioeconomic conditions and social relationships. PLoS One 2019; 14: e0206069. https://doi.org/10.1371/journal.pone.0206069
Lund ML, Lexell J. Relationship between participation in life situations and life satisfaction in persons with late effects of polio. Disabil Rehabil 2009; 31: 1592-1597. https://doi.org/10.1080/09638280802638881
van Leeuwen CM, Hoekstra T, van Koppenhagen CF, de Groot S, Post MW. Trajectories and predictors of the course of mental health after spinal cord injury. Arch Phys Med Rehabil 2012; 93: 2170-2176. https://doi.org/10.1016/j.apmr.2012.07.006
Rivers CS, Fallah N, Noonan VK, Whitehurst DG, Schwartz CE, Finkelstein JA, et al. Health conditions: effect on function, health-related quality of life, and life satisfaction after traumatic spinal cord injury. A prospective observational registry cohort study. Arch Phys Med Rehabil 2018; 99: 443-451. https://doi.org/10.1016/j.apmr.2017.06.012
Post MW, Reinhardt JD, Avellanet M, Escorpizo R, Engkasan JP, Schwegler U, et al. Employment among people with spinal cord injury in 22 countries across the world: results from the International Spinal Cord Injury Community Survey. Arch Phys Med Rehabil 2020; 101: 2157-2166. https://doi.org/10.1016/j.apmr.2020.05.027
Roels EH, Reneman MF, New PW, Kiekens C, Van Roey L, Townson A, et al. International comparison of vocational rehabilitation for persons with spinal cord injury: systems, practices, and barriers. Topics Spinal Cord Inj Rehabil 2020; 26: 21-35. https://doi.org/10.1310/sci2601-21
Gross-Hemmi MH, Post MWM, Bienert S, Chamberlain JD, Hug K, Jordan X, et al. Participation in people living with spinal cord injury in Switzerland: degree and associated factors. Arch Phys Med Rehabil 2019; 100: 1894-1906. https://doi.org/10.1016/j.apmr.2019.03.018
Edgerton JD, Roberts LW, von Below S. Education and quality of life. In: Land KC, Michalos AC, Sirgy MJ, editors. Handbook of social indicators and quality of life research. Dordrecht: Springer Netherlands; 2012, p. 265-296. https://doi.org/10.1007/978-94-007-2421-1_12
Fekete C, Tough H, Arora M, Hasnan N, Joseph C, Popa D, et al. Are social relationships an underestimated resource for mental health in persons experiencing physical disability? Observational evidence from 22 countries. Int J Public Health 2021; 66. https://doi.org/10.3389/ijph.2021.619823
Fekete C, Siegrist J, Reinhardt JD, Brinkhof MW, Swi SCISG. Is financial hardship associated with reduced health in disability? The case of spinal cord injury in Switzerland. PLoS One 2014; 9: e90130. https://doi.org/10.1371/journal.pone.0090130
Income and wealth statistics for households. [Internet]. 2021 11.03.21 [cited 2021 May 23]. Available from: https://www.ssb.no/en/inntekt-og-forbruk/statistikker/ifhus
Educational attainment of the population. [Internet]. 2020 12.08.2020 [cited 2021 May 27]. Available from: https://www.ssb.no/en/utdanning/statistikker/utniv.
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Copyright (c) 2021 Annette Halvorsen, Kristine Pape, Marcel W.M. Post, Fin Biering-Sørensen, Steinar Mikalsen, Anders Nupen Hansen, Aslak Steinsbekk
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