Non-adherence to follow-up care in persons with spinal cord injury within 10 years after initial rehabilitation
DOI:
https://doi.org/10.2340/jrm.v56.41083Keywords:
follow-up care, secondary health conditions, secondary prevention, spinal cord injuryAbstract
Objective: This study aimed to describe the temporal dynamics of and risk factors for non-adherence to outpatient follow-up care in the first 10 years after spinal cord injury.
Design: Retrospective single-centre cohort study using data from medical records and municipal resident registers.
Subjects/Patients: Patients admitted to a specialized spinal cord injury centre in Switzerland discharged between 1 January 2010 and 31 December 2012 (n = 225). Time-to-event analysis was used to investigate the timing of the first non-adherence event, its association with spinal cord injury, and sociodemographic characteristics.
Results: 36% of patients were adherent to annual follow-up appointments; 2% formally transferred to another SCI centre; 44% were non-adherent for general reasons (patient’s will to discontinue care [12%] or unknown reasons [32%]); and 18% were non-adherent due to death. Risk factors for non-adherence included older age, lack of long-term partner, and more than 2 h of travel time to the clinic. In the youngest age group (18–30 years), 55% were non-adherent after 10 years.
Conclusion: A relevant proportion of individuals with spinal cord injury were lost to annual follow-up care. A holistic approach to patient engagement integrating solutions such as telemedicine and involvement of support networks could reduce the risk of non-adherence.
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References
Eriks-Hoogland I, Baumberger M, Crone A, Huber B, Jordan X, Michel F, et al. S2k-Leitlinie Lebenslange Nachsorge für Menschen mit Querschnittlähmung; 2022. Available from: https://register.awmf.org/assets/guidelines/179-014l_S2k_Lebenslange-Nachsorge-fuer-Menschen-mit-Querschnittlaehmung_2022-12.pdf.
Bloemen-Vrencken JH, de Witte LP, Post MW. Follow-up care for persons with spinal cord injury living in the community: a systematic review of interventions and their evaluation. Spinal Cord 2005; 43: 462-475.
https://doi.org/10.1038/sj.sc.3101750 DOI: https://doi.org/10.1038/sj.sc.3101750
Spreyermann R, Lüthi H, Michel F, Baumberger M, Wirz M, Mäder M. Long-term follow-up of patients with spinal cord injury with a new ICF-based tool. Spinal Cord 2011; 49: 230-235.
https://doi.org/10.1038/sc.2010.93 DOI: https://doi.org/10.1038/sc.2010.93
Tijsse Klasen J, van Diemen T, Langerak NG, van Nes IJW. Effects of adaptations in an interdisciplinary follow-up clinic for people with spinal cord injury in the chronic phase: a prospective cohort study. J Clin Med 2023; 12: 7572.
https://doi.org/10.3390/jcm12247572 DOI: https://doi.org/10.3390/jcm12247572
Haynes RB, McDonald H, Garg AX, Montague P. Interventions for helping patients to follow prescriptions for medications. Cochrane Database Syst Rev 2002: Cd000011.
https://doi.org/10.1002/14651858.CD000011 DOI: https://doi.org/10.1002/14651858.CD000011
Irgens I, Hoff JM, Jelnes R, Alexander M, Stanghelle JK, Thoresen M, et al. Spinal cord injury and development of pressure injury during acute rehabilitation in Norway: a national retrospective cross-sectional study. Spinal Cord 2020; 58: 1069-1079.
https://doi.org/10.1038/s41393-020-0465-z DOI: https://doi.org/10.1038/s41393-020-0465-z
Skelton F, Salemi JL, Akpati L, Silva S, Dongarwar D, Trautner BW, et al. Genitourinary complications are a leading and expensive cause of emergency department and inpatient encounters for persons with spinal cord injury. Arch Phys Med Rehabil 2019; 100: 1614-1621.
https://doi.org/10.1016/j.apmr.2019.02.013 DOI: https://doi.org/10.1016/j.apmr.2019.02.013
Dorton MC, Lucci VM, de Groot S, Loughin TM, Cragg JJ, Kramer JK, et al. Evaluation of cardiovascular disease risk in individuals with chronic spinal cord injury. Spinal Cord 2021; 59: 716-729.
https://doi.org/10.1038/s41393-020-00566-5 DOI: https://doi.org/10.1038/s41393-020-00566-5
Chamberlain JD, Eriks-Hoogland IE, Hug K, Jordan X, Schubert M, Brinkhof MWG. Attrition from specialised rehabilitation associated with an elevated mortality risk: results from a vital status tracing study in Swiss spinal cord injured patients. BMJ Open 2020; 10: e035752.
https://doi.org/10.1136/bmjopen-2019-035752 DOI: https://doi.org/10.1136/bmjopen-2019-035752
Gemperli A, Ronca E, Scheel-Sailer A, Koch H, Brach M, Trezzini B. Health care utilization in persons with spinal cord injury: part 1 - outpatient services. Spinal Cord 2017; 55: 823-827.
https://doi.org/10.1038/sc.2017.44 DOI: https://doi.org/10.1038/sc.2017.44
Ronca E, Scheel-Sailer A, Koch HG, Gemperli A. Health care utilization in persons with spinal cord injury: part 2 - determinants, geographic variation and comparison with the general population. Spinal Cord 2017; 55: 828-833.
https://doi.org/10.1038/sc.2017.38 DOI: https://doi.org/10.1038/sc.2017.38
Xu X, Mann JR, Hardin JW, Gustafson E, McDermott SW, Deroche CB. Adherence to US Preventive Services Task Force recommendations for breast and cervical cancer screening for women who have a spinal cord injury. J Spinal Cord Med 2017; 40: 76-84.
https://doi.org/10.1080/10790268.2016.1153293 DOI: https://doi.org/10.1080/10790268.2016.1153293
Ronca E, Scheel-Sailer A, Eriks-Hoogland I, Brach M, Debecker I, Gemperli A. Factors influencing specialized health care utilization by individuals with spinal cord injury: a cross-sectional survey. Spinal Cord 2021; 59: 381-388.
https://doi.org/10.1038/s41393-020-00581-6 DOI: https://doi.org/10.1038/s41393-020-00581-6
MDCalc. Charlson Comorbidity Index (CCI). 2017 [cited February 27, 2023] Available from: https://www.mdcalc.com/
Austin PC, Fine JP. Practical recommendations for reporting Fine-Gray model analyses for competing risk data. Stat Med 2017; 36: 4391-4400.
https://doi.org/10.1002/sim.7501 DOI: https://doi.org/10.1002/sim.7501
Fine JP, Gray RJ. A proportional hazards model for the subdistribution of a competing risk. J Am Stat Assoc 1999; 94: 496-509.
https://doi.org/10.1080/01621459.1999.10474144 DOI: https://doi.org/10.1080/01621459.1999.10474144
DeVivo MJ, Biering-Sørensen 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 DOI: https://doi.org/10.1038/sc.2010.172
Sterne JA, White IR, Carlin JB, Spratt M, Royston P, Kenward MG, et al. Multiple imputation for missing data in epidemiological and clinical research: potential and pitfalls. BMJ 2009; 338: b2393.
https://doi.org/10.1136/bmj.b2393 DOI: https://doi.org/10.1136/bmj.b2393
Spratt M, Carpenter J, Sterne JA, Carlin JB, Heron J, Henderson J, et al. Strategies for multiple imputation in longitudinal studies. Am J Epidemiol 2010; 172: 478-487.
https://doi.org/10.1093/aje/kwq137 DOI: https://doi.org/10.1093/aje/kwq137
Coviello V. STCOMPET: Stata module to generate cumulative incidence in presence of competing events; 2003. Available from: https://ideas.repec.org/c/boc/bocode/s431301.html
Crowther M. merlin - a unified modeling framework for data analysis and methods development in Stata. Stata J 2020; 20: 763-784.
https://doi.org/10.1177/1536867X20976311 DOI: https://doi.org/10.1177/1536867X20976311
Crowther MJ, Lambert P. MULTISTATE: State module to perform multi-state survival analysis, Statistical Software Components S458207; 2016. Boston: Boston College Department of Economics; 2016.
Tong CYM, Koh RYV, Lee ES. A scoping review on the factors associated with the lost to follow-up (LTFU) amongst patients with chronic disease in ambulatory care of high-income countries (HIC). BMC Health Serv Res 2023; 23: 883.
https://doi.org/10.1186/s12913-023-09863-0 DOI: https://doi.org/10.1186/s12913-023-09863-0
Ghajarzadeh M, Rahimi Foroushani A, Nedjat S, Sheikhrezaei A, Saberi H. Survival analysis in patients with chronic traumatic spinal cord injury. Iran J Public Health 2019; 48: 2260-2269.
https://doi.org/10.18502/ijph.v48i12.3559 DOI: https://doi.org/10.18502/ijph.v48i12.3559
National Spinal Cord Injury Statistical Center. Spinal cord injury facts and figures at a glance. J Spinal Cord Med 2013; 36: 1-2.
https://doi.org/10.1179/1079026813Z.000000000136 DOI: https://doi.org/10.1179/1079026813Z.000000000136
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