the role of information systems to manage cerebral palsy

how to cite this article : ajami s, maghsoudlorad aa. the role of information systems to manage cerebral palsy. iran j child neurol.spring 2016; 10(2): 1-9. abstract objective in healthcare system, it is necessary to have exact and accurate information in order to address health care needs and requirements of society members as well as expectations of policy makers, planners and decision makers. the aim of this narrative review article was to explain the role of information systems in cerebral palsy management and identify the advantages and barriers to the development of cerebral palsy registry system. data were collected using databases such as of science direct, pubmed, proquest, springer, and sid (scientific information database). overall, 65 sources were selected. one of the biggest challenges for children with physical and motor disabilities in rehabilitation center is access to a system, which provides a comprehensive data set reflecting all information on a patient’s care. thus, data and information management in children with physical and motor disability such as cerebral palsy facilitates access to data and cerebral palsy data comparison as well as the monitoring incidence rate of cerebral palsy, enhancing health care quality; however, there are always numerous barriers to establish the system. one of the ways to overcome these problems is the establishment of a standard framework of minimum data sets and exact definition of its data components. reliable standards in the use of applications as well as user-friendly software will ensure patients’ data extraction and registration.   references 1. ajami s, maghsodlorad aa. national cerebral palsy minimum data set. journal of research in medical sciences. j res med sci 2015 apr;20(4):321-2. 2. sankar c, mundkur n. cerebral palsy-definition, classification, etiology and early diagnosis. indian j pediatr 2005 ;72:865-8. 3. bax m, goldstein m, rosenbaum p, leviton a, paneth n, dan b, et al. proposed definition and classification of cerebral palsy, april 2005. dev med child neurol 2005;47:571-6. 4. prudente com, barbosa ma, porto cc. relation between quality of life of mothers of children with cerebral palsy and the children’s motor functioning, after ten months of rehabilitation. rev lat am enfermagem 2010;18:149-55. 5. cans c. surveillance of cerebral palsy in europe: a collaboration of cerebral palsy surveys and registers. dev med child neurol 2000;42:816-24. 6. krägeloh-mann i, cans c. cerebral palsy update. brain dev 2009;31:537-44. 7. stanley fj, blair e. why have we failed to reduce the frequency of cerebral palsy? med j aust 1991;154:623-6. 8. nelson kb, ellenberg jh. children who outgrew cerebral palsy. pediatrics 1982;69:529-36. 9. reddihough ds, king j, coleman g, catanese t. efficacy of programmes based on conductive education for young children with cerebral palsy. dev med child neurol 1998;40:763-70. 10. zad hosseini f, zarbakhsh mr, hosseinkhanzadeh aa. effectiveness of strengthening eye-hand coordination in improving hand motor growth in infants who suffer from cerebral palsy and are aged 8-12. j. basic appl sci res 2013; 3:196-200. 11. shukla py, mann s, braun sv, gholve pa. unilateral hip reconstruction in children with cerebral palsy: predictors for failure. j pediatr orthop 2013;33:175-81. doi: 10.1097/bpo.0b013e31827d0b73. 12. bhatia m, joseph b. rehabilitation of cerebral palsy in a developing country: the need for comprehensive assessment. pediatr rehabil 2000;4:83-6. 13. ajami s, ahmadi g, etemadifar m. the role of information system in multiple sclerosis management. j res med sci 2014; 19(12):1175-84. 14. nanan dj, white f. capture-recapture: reconnaissance of a demographic technique in epidemiology. chronic dis can 1997;18:144-8. 15. byrne md, jordan tr, welle t. comparison of manual versus automated data collection method for an evidencebased nursing practice study. appl clin inform 2013;4:61-74. doi: 10.4338/aci-2012-09-ra-0037. 16. bali rk. editor. clinical knowledge management: opportunities and challenges. coventry university. uk: igi global; 2005.p.200-9. 17. latour km, maki se. health information management: concepts, principles, and practice. third ed. chicago, usa: american health information management association; 2010: p. 90-100. 18. ajami s, askarianzadeh m, saghaeiannejad-isfahani s, mortazavi m, ehteshami a. comparative study on the national renal disease registry (nrdr) in america, england, and iran. j educ health promot 2014, 3:56. 19. ajami s, lamoochi p. comparative study on national burn registry in america, england, australia, and iran. j educ health promot 2014;3:84. 20. christine c1, dolk h, platt mj, colver a, prasauskiene a, krageloh-mann i. recommendations from the scpe collaborative group for defining and classifying cerebral palsy. dev med child neurol suppl 2007;109:35-8. 21. cans c, surman g, mcmanus v, coghlan d, hensey o, johnson a. cerebral palsy registries. semin pediatr neurol 2004;11:18-23. 22. carter j, evans j, tuttle m, weida t, white t, harvell j, et al. making the minimum data set compliant with health information technology standards. washington, d.c., usa: u.s. department of health and human services, assistant secretary for planning and evaluation office of disability, aging and long-term care policy 2006:1-58. available: http://aspe.hhs.gov/daltcp/reports/2006/mdshit.htm. 23. 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. 24. chilundo b, sundby j, aanestad m. analysing the quality of routine malaria data in mozambique. malar j 2004; 3:3. 25. berg m, aarts j, van der lei j. ict in health care: sociotechnical approaches. methods inform med 2003;42:297–301. 26. pratt w, unruh k, civan a, skeels mm. communications of the acm, personal health information management. cacm 2006;49:51-5. 27. bakken s, cashen ms, mendonca ea, o’brien a, zieniewicz j. representing nursing activities within a concept-oriented terminological system evaluation of a type definition. j am med inform assoc 2000;7:81-90. 28. coenen a, mcneil b, bakken s, bickford c, warren j. toward comparable nursing data: american nurses association criteria for data sets, classification systems, and nomenclatures. comput nurs 2000;19:240-6; quiz 6-8. 29. mcneil a, evans sue m, clissold b, cameron p. guidelines for the establishment and management of clinical registries. proceedings of the australian commission on safety and quality in health care. 2009. 30. davis n, la cour m. introduction to health information technology first version. philadelphia, usa: elsevier -health sciences division; 2001. 31. johns ml. health information management technology: an applied approach. chicago, illinois, etats-unis, usa: american health information management association; 2002:p.250. 32. goossen wt, epping pj, feuth t, dassen tw, hasman a, van den heuvel wj. a comparison of nursing minimal data sets. j am med inform assoc 1998;5:152-63. 33. abdelhak m, grostick s, hanken ma, jaccobs e. health information: management of a strategic resource. 2nd ed. philadelphia: w.b. saunders;2001: p.155. 34. werley hh, devine ec, zorn cr, ryan p, westra bl. the nursing minimum data set: abstraction tool for standardized, comparable, essential data. am j public health 1991;81:421-6. 35. ahmadi m, mohammadi a, chraghbaigi r, fathi t, shojaee baghini m. developing a minimum data set of the information management system for orthopedic injuries in iran. iran red crescent med j 2014; 16: e17020. 36. boyd rn, jordan r, pareezer l, moodie a, finn c, luther b, et al. australian cerebral palsy child study: protocol of a prospective population based study of motor and brain development of preschool aged children with cerebral palsy. bmc neurol 2013; 13:57 doi:10.1186/1471-2377-13-57. 37. uldall p, michelsen si, topp m, madsen m. the danish cerebral palsy registry. a registry on a specific impairment. dan med bull 2001;48:161-3. 38. murphy j. nursing informatics: the intersection of nursing, computer, and information sciences. nurs econ 2010;28:204-7. 39. guilbert jj. the world health report 2002 – reducing risks, promoting healthy life. educ health (abingdon) 2003;16:230. 40. lyons ra, jones kh, john g, brooks cj, verplancke jp, ford dv, et al. the sail databank: linking multiple health and social care datasets. bmc med inform decis mak 2009;9:3. 41. trojano m. can databasing optimise patient care? j neurol 2004;251 suppl 5:v79-v82. 42. renner a, swart j. patient core data set. standard for a longitudinal health/medical record. comput nurs 1996;15(2 suppl):s7-13. 43. molnar ge. rehabilitation in cerebral palsy. west j med 1991; 154: 569–572. 44. anderson b, hannah kj. a canadian nursing minimum data set: a major priority. can j nurs adm 1992;6:7-13. 45. rosenbaum p, paneth n, leviton a, goldstein m, bax m, damiano d, et al. a report: the definition and classification of cerebral palsy april 2006. dev med child neurol suppl 2007;109:8-14. 46. ajami s, fatahi m.the role of earthquake information management systems (eimss) in reducing destruction: a comparative study of japan, turkey and iran. dpm 2009;18:150-161. doi. 10.1108/09653560910953225. 47. detmer d, bloomrosen m, raymond b, tang p. integrated personal health records: transformative tools for consumer-centric care. bmc med inform decis mak 2008;8:45. 48. werley hh, zorn c. the nursing minimum data set: benefits and implications. in: proceedings of the 18th nln biennial convention: nln publication, 41–2199. ; 1988:105–114. 49. quinn l, gordon j. documentation for rehabilitation: a guide to clinical decision making. 2nd ed. usa: saunders; 2010:p.58. 50. staltari cf, baft-neff a, marra lj, rentschler gj. supervision: formative feedback for clinical documentation in a university speech-language pathology program. sig 11 perspectives on administration and supervision 2010;20:117-23. 51. ajami s. a comparative study on earthquake information management systems (eims) in india, afghanistan and iran. j educ health promot 2012;1:27-34. 52. ajami s, bagheri-tadi t. barriers for adopting electronic health records (ehrs) by physicians. acta inform med 2013; 21: 129-134. 53. lober w, zierler b, herbaugh a, shinstrom s, stolyar a, kim e, et al., editors. barriers to the use of a personal health record by an elderly population. proceeding uahci’13 proceedings of the 7th international conference on universal access in human-computer interaction: applications and services for quality of life, amia annu symp proc 2006:514-8. 54. masić i. use of information technology in the 21st century in the medical sciences. med arh 2000;54:59-61. 55. ajami s, arab-chadegani r. barriers to implement electronic health records (ehrs). mater sociomed 2013; 25: 213–215. 56. on ml, bennett v, whittaker m. issues and challenges for health information systems in the pacific. pac health dialog 2012;18:20-4. 57. braa j, hanseth o, heywood a, mohammed w, shaw v. developing health information systems in developing countries: the flexible standards strategy. mis quarterly 2007:381-402. 58. jacucci e, shaw v, braa j. standardization of health information systems in south africa: the challenge of local sustainability. inform techno dev 2006;12:225-39. 59. kaye r, kokia e, shalev v, idar d, chinitz d. barriers and success factors in health information technology: a practitioner’s perspective. j manag marketing healthc 2010;3:163-75. 60. price cp, kricka lj. improving healthcare accessibility through point-of-care technologies. clin chem 2007;53:1665-75. 61. boonstra a, broekhuis m. barriers to the acceptance of electronic medical records by physicians from systematic review to taxonomy and interventions. bmc health serv res 2010;10:231. 62. farah sks. bjune ga, damtew za, abdelaziz ao.challenges and opportunities of integrating primary health care information system: northern state, sudan. sudanese j public health 2011;6:105-109. 63. mlenzana nb, frantz jm, rhoda aj, eide ah. barriers to and facilitators of rehabilitation services for people with physical disabilities: a systematic review. afr j disabil 2013;2:6. 64. hersh w. health care information technology: progress and barriers. jama 2004;292:2273-4. 65. adel mehraban m, hassanpour m, yazdannik a, ajami s. technology user’s training is a waif. iran red cres med 2013;15:1-7.