Introduction: In recent decades, following the upward trend of aging, one out of three people in the world need rehabilitation services during the period of illness or injury. Considering the long-term complications and high costs of treatment, the need to follow up and review the evidence to find the best care programs and extensive planning in this field seems mandatory. Registry systems (registration) in this area can provide the necessary evidence for strategic decisions in this field. Of course, launching and developing these systems comes with challenges. Therefore, the purpose of this comprehensive literature review is to examine the challenges and benefits of developing a rehabilitation registration system.
Materials and Method: A systematic review, in studies published in English, without time limit and by searching for keywords in the keywords, title and abstract of reliable scientific databases Web of Science, Scopus, PubMed and Science Direct, as well as searching the title of studies in the database Cochrane data was accessed on March 31, 2021. Studies that were a possible answer to the researched question based on the title and content were examined. A total of 1924 related studies were identified; And finally, 32 qualified articles were included in this review.
Results: One of the most important challenges investigated was the limitation of rehabilitation comprehensive registration systems. Other challenges include the lack of support for ensuring the quality of registration data, insufficient funds for investment, privacy and data security, the unclear purpose of registration system development, access to hardware infrastructure, lack of binding laws and regulations related to registration systems, lack of access to sufficient information. To implement information registration systems, continuous monitoring and holding training courses.Conclusion: The most important challenge investigated was that currently the health care and rehabilitation registration systems around the world are focused on single diseases (single discipline rehabilitation), which does not meet the needs of patients due to the multifactorial nature of rehabilitation services and chronic diseases. Therefore, it seems that the connection between the data registration systems with the help of a comprehensive guideline or model or the creation of a national integrated central database in the form of integration with other health information systems and based on electronic health records will be very efficient.
Cieza A, Causey K, Kamenov K, Hanson SW, Chatterji S, Vos T. Global estimates of the need for rehabilitation based on the Global Burden of Disease study 2019: A systematic analysis for the Global Burden of Disease Study 2019. Lancet. 2021; 396(10267): 2006-17. PMID: 33275908 DOI: 10.1016/S0140-6736(20)32340-0
Ayanian JZ, Weissman JS, Schneider EC, Ginsburg JA, Zaslavsky AM. Unmet health needs of uninsured adults in the United States. JAMA. 2000; 284(16): 2061-9. PMID: 11042754 DOI: 10.1001/jama.284.16.2061
Pinto M, Gimigliano F, De Simone S, Costa M, Bianchi AAM, Iolascon G. Post-acute COVID-19 rehabilitation network proposal: From intensive to extensive and home-based IT supported services. Int J Environ Res Public Health. 2020; 17(24): 9335. PMID: 33327384 DOI: 10.3390/ijerph17249335
Rehabilitation in health systems. Geneva: World Health Organization; 2017.
Ajami S, Maghsoudlorad AA. The role of information systems to manage cerebral palsy. Iran J Child Neurol. 2016; 10(2): 1-9. PMID: 27247578
Gliklich RE, Dreyer NA, Leavy MB. Registries for evaluating patient outcomes: A user's guide [Internet]. 3rd ed. Agency for Healthcare Research and Quality (US); 2014.
Egger M, Smith GD, Altman D. Systematic reviews in health care: Meta-analysis in context. John Wiley & Sons; 2008.
Noonan VK, Kwon BK, Soril L, Fehlings MG, Hurlbert RJ, Townson A, Johnson M, Dvorak MF, et al. The Rick Hansen Spinal Cord Injury Registry (RHSCIR): A national patient-registry. Spinal Cord. 2012; 50(1): 22-7. PMID: 22042297 DOI: 10.1038/sc.2011.109
Gridnev VI, Kiselev AR, Posnenkova OM, Popova YV, Dmitriev VA, Prokhorov MD, et al. Objectives and design of the Russian Acute Coronary Syndrome Registry (RusACSR). Clin Cardiol. 2016; 39(1): 1-8. PMID: 26695366 DOI: 10.1002/clc.22495
Takasaki M, Momosaki R, Wakabayashi H, Nishioka S. Construction and quality evaluation of the Japanese rehabilitation nutrition database. J Nutr Sci Vitaminol (Tokyo). 2018; 64(4): 251-7. PMID: 30175787 DOI: 10.3177/jnsv.64.251
Barnett K, Mercer SW, Norbury M, Watt G, Wyke S, Guthrie B. Epidemiology of multimorbidity and implications for health care, research, and medical education: a cross-sectional study. Lancet. 2012; 380(9836): 37-43. PMID: 22579043 DOI: 10.1016/S0140-6736(12)60240-2
Britt HC, Harrison CM, Miller GC, Knox SA. Prevalence and patterns of multimorbidity in Australia. Med J Aust. 2008; 189(2): 72-7. PMID: 18637770 DOI: 10.5694/j.1326-5377.2008.tb01919.x
Passchier E, Stuiver MM, van der Molen L, Kerkhof SI, van den Brekel MW, Hilgers FJ. Feasibility and impact of a dedicated multidisciplinary rehabilitation program on health-related quality of life in advanced head and neck cancer patients. Eur Arch Otorhinolaryngol. 2016; 273(6): 1577-87. PMID: 26024692 DOI: 10.1007/s00405-015-3648-z
Leclerc AF, Foidart-Dessalle M, Tomasella M, Coucke P, Devos M, Bruyère O, et al. Multidisciplinary rehabilitation program after breast cancer: benefits on physical function, anthropometry and quality of life. Eur J Phys Rehabil Med. 2017; 53(5): 633-42. PMID: 28322035 DOI: 10.23736/S1973-9087.17.04551-8
Khan F, Amatya B, Drummond K, Galea M. Effectiveness of integrated multidisciplinary rehabilitation in primary brain cancer survivors in an Australian community cohort: A controlled clinical trial. J Rehabil Med. 2014; 46(8): 754-60. PMID: 24940656 DOI: 10.2340/16501977-1840
van Weert E, Hoekstra-Weebers J, Grol B, Otter R, Arendzen HJ, Postema K, et al. A multidimensional cancer rehabilitation program for cancer survivors: effectiveness on health-related quality of life. J Psychosom Res. 2005; 58(6): 485-96. PMID: 16125515 DOI: 10.1016/j.jpsychores.2005.02.008
Ng L, Khan F, Mathers S. Multidisciplinary care for adults with amyotrophic lateral sclerosis or motor neuron disease. Cochrane Database Syst Rev. 2009; 4: CD007425. PMID: 19821416 DOI: 10.1002/14651858.CD007425.pub2
Kamper SJ, Apeldoorn AT, Chiarotto A, Smeets RJ, Ostelo RW, Guzman J, et al. Multidisciplinary biopsychosocial rehabilitation for chronic low back pain: Cochrane systematic review and meta-analysis. BMJ. 2015; 350: h444. PMID: 25694111 DOI: 10.1136/bmj.h444
Antypas K, Wangberg SC. E-Rehabilitation– an Internet and mobile phone based tailored intervention to enhance self-management of cardiovascular disease: Study protocol for a randomized controlled trial. BMC Cardiovasc Disord. 2012; 12: 50. PMID: 22776554 DOI: 10.1186/1471-2261-12-50
Barker K, Holland AE, Lee AL, Haines T, Ritchie K, Boote C, et al. Multimorbidity rehabilitation versus disease-specific rehabilitation in people with chronic diseases: a pilot randomized controlled trial. Pilot Feasibility Stud. 2018; 4: 181. PMID: 30519483 DOI: 10.1186/s40814-018-0369-2
Wu J, Faux SG, Harris I, Poulos CJ, Alexander T. Record linkage is feasible with non‐identifiable trauma and rehabilitation datasets. Aust N Z J Public Health. 2016; 40(3): 245-9. PMID: 27028098 DOI: 10.1111/1753-6405.12510
Afzali M, Etemad K, Kazemi A, Rabiei R. Cerebral palsy information system with an approach to information architecture: A systematic review. BMJ Health Care Inform. 2019; 26(1): e100055. PMID: 31892529 DOI: 10.1136/bmjhci-2019-100055
Nachtegaal J, van Langeveld SA, Slootman H, Post MWM, Dutch-Flemish Spinal Cord Society. Implementation of a standardized dataset for collecting information on patients with spinal cord injury. Top Spinal Cord Inj Rehabil. 2018; 24(2): 133-40. PMID: 29706757 DOI: 10.1310/sci2402-133
Kumar RG, Wang ZS, Kesinger MR, Newman M, Huynh TT, Niemeier JP, et al. Probabilistic matching of deidentified data from a trauma registry and a traumatic brain injury model system center: A follow-up validation study. Am J Phys Med Rehabil. 2018; 97(4): 236-41. PMID: 29557888 DOI: 10.1097/PHM.0000000000000838
Jette N, Johnston M, Pringsheim T, Korngut L. The case for neurological registry best practice guidelines in Canada. Can J Neurol Sci. 2013; 40(4 Suppl 2): S1-3. PMID: 23787261 DOI: 10.1017/s031716710001711x
DiMasi JA, Hansen RW, Grabowski HG. The price of innovation: new estimates of drug development costs. J Health Econ. 2003; 22(2): 151-85. PMID: 12606142 DOI: 10.1016/S0167-6296(02)00126-1
Benzer W, Rauch B, Schmid JP, Zwisler AD, Dendale P, Davos CH, et al. Exercise-based cardiac rehabilitation in twelve European countries results of the European cardiac rehabilitation registry. Int J Cardiol. 2017; 228: 58-67. PMID: 27863363 DOI: 10.1016/j.ijcard.2016.11.059
Domensino AF, Winkens I, van Haastregt JCM, van Bennekom CAM, Heugten CMV. Defining the content of a minimal dataset for acquired brain injury using a Delphi procedure. Health Qual Life Outcomes. 2020; 18(1): 30. PMID: 32066447 DOI: 10.1186/s12955-020-01286-3
Egholm CL, Helmark C, Doherty P, Nilsen P, Zwisler AD, Bunkenborg G. “Struggling with practices”– A qualitative study of factors influencing the implementation of clinical quality registries for cardiac rehabilitation in England and Denmark. BMC Health Serv Res. 2019; 19(1): 102. PMID: 30728028 DOI: 10.1186/s12913-019-3940-5
Ali M, Bath P, Brady M, Davis S, Diener HC, Donnan G, et al. Development, expansion, and use of a stroke clinical trials resource for novel exploratory analyses. Int J Stroke. 2012; 7(2): 133-8. PMID: 22264365 DOI: 10.1111/j.1747-4949.2011.00735.x
Korngut L, MacKean G, Casselman L, Johnston M, Day L, Lam D, et al. Perspectives on neurological patient registries: A literature review and focus group study. BMC Med Res Methodol. 2013; 13: 135. PMID: 24209392 DOI: 10.1186/1471-2288-13-135
Braa J, Hanseth O, Heywood A, Mohammed W, Shaw V. Developing health information systems in developing countries: The flexible standards strategy. MIS Quarterly. 2007; 31(2): 381-402.
Ajami S, Ahmadi G, Saghaeiannejad-Isfahani S, Etemadifar M. A comparative study on iMed© and European database for multiple sclerosis to propose a common language of multiple sclerosis data elements. J Educ Health Promot. 2014; 3: 107. PMID: 25540780 DOI: 10.4103/2277-9531.145894
Ajami S, Bagheri-Tadi T. Barriers for adopting electronic health records (EHRs) by physicians. Acta Inform Med. 2013; 21(2): 129-34. PMID: 24058254 DOI: 10.5455/aim.2013.21.129-134
Kuptniratsaikul V, Kovindha A, Suethanapornkul S, Manimmanakorn N, Archongka Y. Long-term morbidities in stroke survivors: A prospective multicenter study of Thai stroke rehabilitation registry. BMC Geriatr. 2013; 13: 33. PMID: 23586971 DOI: 10.1186/1471-2318-13-33
Baigi SF, Sarbaz M, Ghaddaripouri K, Noori N, Kimiafar K. The effect of tele-rehabilitation on improving physical activity in patients with chronic obstructive pulmonary disease: A systematic review of randomized controlled clinical trials. Frontiers in Health Informatics. 2022; 11(1): 113.
Baigi SF, Mousavi AS, Kimiafar K, Sarbaz M. Evaluating the cost effectiveness of tele-rehabilitation: A systematic review of randomized clinical trials. Frontiers in Health Informatics. 2022; 11(1): 118.
Mousavi Baigi SF, Raei Mehneh M, Sarbaz M, Norouzi Aval R, Kimiafar K. Telerehabilitation in response to critical coronavirus: A systematic review based on current evidence. Journal of Isfahan Medical School. 2022; 40(678): 498-508.
Sarbaz M, Monazah FM, Eslami S, Kimiafar K, Baigi SF. Effect of mobile health interventions for side effects management in patients undergoing chemotherapy: A systematic review. Health Policy and Technology. 2022; 11(4): 100680.
Sarbaz M, Baigi SF, Marouzi P, Hasani SM, Kimiafar K. Type and number of errors of the Iranian Electronic Health Record (SEPAS) in hospitals affiliated with Mashhad university of medical sciences. Stud Health Technol Inform. 2022; 295: 354-7. PMID: 35773882 DOI: 10.3233/SHTI220736