Methodology and study population of the second Swiss national community survey of functioning after spinal cord injury.


Journal

Spinal cord
ISSN: 1476-5624
Titre abrégé: Spinal Cord
Pays: England
ID NLM: 9609749

Informations de publication

Date de publication:
Apr 2021
Historique:
received: 28 02 2020
accepted: 29 10 2020
revised: 29 10 2020
pubmed: 19 11 2020
medline: 16 10 2021
entrez: 18 11 2020
Statut: ppublish

Résumé

Descriptive study of the second community survey of the Swiss Spinal Cord Injury Cohort Study (Survey 2017) conducted between 03/2017 and 03/2018. To describe the methodology, recruitment results, characteristics of participants and non-participants, and non-response of the Survey 2017. Community. Description of the sampling strategy and sampling frame. Recruitment results and characteristics of participants and non-participants of the two Survey 2017 questionnaire modules were analyzed using descriptive statistics. Determinants of survey participation were examined using multivariable logistic regression, and the impact of non-response bias on survey results was evaluated using inverse-probability weighting. Out of 3959 persons who met the eligibility criteria, 1530 responded to module 1 (response rate 38.6%) and 1294 to module 2 (response rate 32.7%) of the Survey 2017. Of the 4493 invited persons, 1549 had participated in the first SwiSCI community survey conducted in 2012/2013. Of these, 1332 were invited to the Survey 2017 and 761 participated in module 1 (response rate 58.9%) and 685 in module 2 (response rate 53.1%). The majority of module 1 participants were male (71.2%, 95% CI: 68.9, 73.5), with a median age of 57 (IQR: 46.0, 67.0) years and incomplete paraplegia (41.9%, 95% CI: 39.3, 44.5). Survey non-response was higher in the oldest age group, among females, and those with tetraplegia. The design of the Survey 2017 was successful in recruiting a substantial proportion of the SCI source population in Switzerland. To counteract survey non-response, survey weights may be applied to subsequent analyses. none.

Identifiants

pubmed: 33204031
doi: 10.1038/s41393-020-00584-3
pii: 10.1038/s41393-020-00584-3
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

363-372

Références

Bach M, Jordan S, Hartung S, Santos-Hovener C, Wright MT. Participatory epidemiology: the contribution of participatory research to epidemiology. Emerg Themes Epidemiol. 2017;14:2.
doi: 10.1186/s12982-017-0056-4
Noreau L, Noonan VK, Cobb J, Leblond J, Dumont FS. Spinal cord injury community survey: a national, comprehensive study to portray the lives of Canadians with spinal cord injury. Top Spinal Cord Inj Rehabil. 2014;20:249–64.
doi: 10.1310/sci2004-249
Savic G, Charlifue S, Glass C, Soni B, Gerhart K, Jamous A. British ageing with SCI study: changes in physical and psychosocial outcomes over time. Top Spinal Cord Inj Rehabil. 2010;15:41–53.
doi: 10.1310/sci1503-41
Chen Y, DeVivo MJ, Richards JS, SanAgustin TB. Spinal cord injury model systems: review of program and national database from 1970 to 2015. Arch Phys Med Rehabil. 2016;97:1797–804.
doi: 10.1016/j.apmr.2016.02.027
Post MW, Brinkhof MW, von Elm E, Boldt C, Brach M, Fekete C, et al. Design of the Swiss Spinal Cord Injury Cohort Study. Am J Phys Med Rehabil. 2011;90:S5–16.
doi: 10.1097/PHM.0b013e318230fd41
Brinkhof MW, Fekete C, Chamberlain JD, Post MW, Gemperli A. Swiss national community survey on functioning after spinal cord injury: Protocol, characteristics of participants and determinants of non-response. J Rehabil Med. 2016;48:120–30.
doi: 10.2340/16501977-2050
Paneth N, Monk C. The importance of cohort research starting early in life to understanding child health. Curr Opin Pediatr. 2018;30:292–6.
doi: 10.1097/MOP.0000000000000596
Mitchell S, Ciemnecki A, CyBulski K, Markesich J (editors). Removing barriers to survey participation for persons with disabilities. 1st ed. Rehabilitation Research and Training Center on Disability Demographics and Statistics, Ithaca, NY: Cornell University; 2006.
Parsons JA, Baum S, Johnson TP, Hendershot G. Inclusion of disabled populations in interview surveys: review and recommendations. In: Barnartt SN, Altman BM, editors. Exploring theories and expanding methodologies: Where we are and where we need to go, vol. 2. Bingley: Research in Social Science and Disability, Emerald Group Publishing Limited; 2001. p. 167–84.
doi: 10.1016/S1479-3547(01)80025-7
Eisner NL, Murray AL, Eisner M, Ribeaud D. A practical guide to the analysis of non-response and attrition in longitudinal research using a real data example. Int J Behav Dev. 2019;43:24–34.
doi: 10.1177/0165025418797004
Galea S, Tracy M. Participation rates in epidemiologic studies. Ann Epidemiol. 2007;17:643–53.
doi: 10.1016/j.annepidem.2007.03.013
von Elm E, Altman DG, Egger M, Pocock SJ, Gotzsche PC, Vandenbroucke JP. The strengthening the reporting of observational studies in epidemiology (STROBE) statement: guidelines for reporting observational studies. PLoS Med. 2007;4:e296.
doi: 10.1371/journal.pmed.0040296
Cieza A, Kirchberger I, Biering-Sorensen F, Baumberger M, Charlifue S, Post MW, et al. ICF Core Sets for individuals with spinal cord injury in the long-term context. Spinal Cord. 2010;48:305–12.
doi: 10.1038/sc.2009.183
Prodinger B, Cieza A, Oberhauser C, Bickenbach J, Ustun TB, Chatterji S, et al. Toward the International Classification of Functioning, Disability and Health (ICF) Rehabilitation Set: a minimal generic set of domains for rehabilitation as a health strategy. Arch Phys Med Rehabil. 2016;97:875–84.
doi: 10.1016/j.apmr.2015.12.030
Geyh S, Muller R, Peter C, Bickenbach JE, Post MW, Stucki G, et al. Capturing the psychologic-personal perspective in spinal cord injury. Am J Phys Med Rehabil. 2011;90:S79–96.
doi: 10.1097/PHM.0b013e318230fb68
Fekete C, Brach M, Ehrmann C, Post M, InSCI, Stucki G. Cohort profile of the International Spinal Cord Injury (InSCI) Community Survey implemented in 22 countries. Arch Phys Med Rehabil. 2020. https://doi.org/10.1016/j.apmr.2020.01.022 .
The SwiSCI Community Survey. 2017. https://swisci.ch/en/research-projects-home/study-design/community-survey .
Fekete C, Segerer W, Gemperli A, Brinkhof MW. Participation rates, response bias and response behaviours in the community survey of the Swiss Spinal Cord Injury Cohort Study (SwiSCI). BMC Med Res Methodol. 2015;15:80.
doi: 10.1186/s12874-015-0076-0
Epstein J, Osborne RH, Elsworth GR, Beaton DE, Guillemin F. Cross-cultural adaptation of the Health Education Impact Questionnaire: experimental study showed expert committee, not back-translation, added value. J Clin Epidemiol. 2015;68:360–9.
doi: 10.1016/j.jclinepi.2013.07.013
The American Association for Public Opinion Research. 2016. Standard definitions: final dispositions of case codes and outcome rates for surveys. 9th ed. AAPOR. https://www.aapor.org/Publications-Media/AAPOR-Publications.aspx .
Hinrichs T, Prodinger B, Brinkhof MW, Gemperli A. Subgroups in epidemiological studies on spinal cord injury: evaluation of international recommendations in the Swiss Spinal Cord Injury Cohort Study. J Rehabil Med. 2016;48:141–8.
doi: 10.2340/16501977-2029
Prodinger B, Ballert CS, Brach M, Brinkhof MW, Cieza A, Hug K, et al. Toward standardized reporting for a cohort study on functioning: the Swiss Spinal Cord Injury Cohort Study. J Rehabil Med. 2016;48:189–96.
doi: 10.2340/16501977-2026
Harrod LA, Lesser V. The use of propensity scores to adjust for nonignorable nonresponse bias. Proc Am Stat Assoc. 2006: 3109–12.
Peress M. Correcting for survey nonresponse using variable response propensity. J Am Stat Assoc. 2010;105:1418–30.
doi: 10.1198/jasa.2010.ap09485
Stekhoven DJ, Buhlmann P. MissForest–non-parametric missing value imputation for mixed-type data. Bioinformatics. 2012;28:112–8.
doi: 10.1093/bioinformatics/btr597
Pedersen MJ, Nielsen CV. Improving survey response rates in online panels: effects of low-cost incentives and cost-free text appeal interventions. Soc Sci Comput Rev. 2016;34:229–43.
doi: 10.1177/0894439314563916
Dutwin D, Loft JD, Darling JE, Holbrook AL, Johnson TP, Langley RE, et al. Current knowledge and considerations regarding survey refusals: executive summary of the AAPOR Task Force Report on survey refusals. Public Opin Q. 2015;79:411–9.
doi: 10.1093/poq/nfv025
Edwards PJ, Roberts I, Clarke MJ, Diguiseppi C, Wentz R, Kwan I, et al. Methods to increase response to postal and electronic questionnaires. Cochrane Database Syst Rev. 2009:MR000008.
Nohr EA, Liew Z. How to investigate and adjust for selection bias in cohort studies. Acta Obstet Gynecol Scand. 2018;97:407–16.
doi: 10.1111/aogs.13319
Rodgers WL, Herzog R. Collecting data about the oldest old: problems and procedures. In: Suzman RM, Willis DP, Manton KG, editors. The oldest old. New York: Oxford University Press; 1992. p. 135–56.
National Spinal Cord Injury Statistical Center. 2019 annual statistical report for the spinal cord injury model systems. Birmingham, Alabama: University of Alabama at Birmingham; 2019. https://www.nscisc.uab.edu .

Auteurs

Mirja H Gross-Hemmi (MH)

Swiss Paraplegic Research, Guido A. Zäch Institute, Nottwil, Switzerland. mirja.gross@paraplegie.ch.

Armin Gemperli (A)

Swiss Paraplegic Research, Guido A. Zäch Institute, Nottwil, Switzerland.
Department of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland.

Christine Fekete (C)

Swiss Paraplegic Research, Guido A. Zäch Institute, Nottwil, Switzerland.
Department of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland.

Mirjam Brach (M)

Swiss Paraplegic Research, Guido A. Zäch Institute, Nottwil, Switzerland.

Urban Schwegler (U)

Swiss Paraplegic Research, Guido A. Zäch Institute, Nottwil, Switzerland.
Department of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland.

Gerold Stucki (G)

Swiss Paraplegic Research, Guido A. Zäch Institute, Nottwil, Switzerland.
Department of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland.
Center for Rehabilitation in Global Health Systems, WHO Collaborating Center, Department of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland.

Articles similaires

[Redispensing of expensive oral anticancer medicines: a practical application].

Lisanne N van Merendonk, Kübra Akgöl, Bastiaan Nuijen
1.00
Humans Antineoplastic Agents Administration, Oral Drug Costs Counterfeit Drugs

Smoking Cessation and Incident Cardiovascular Disease.

Jun Hwan Cho, Seung Yong Shin, Hoseob Kim et al.
1.00
Humans Male Smoking Cessation Cardiovascular Diseases Female
Humans United States Aged Cross-Sectional Studies Medicare Part C
1.00
Humans Yoga Low Back Pain Female Male

Classifications MeSH