Introduction: The personal health record of patient with autism has not been adequately addressed. While, these records play an important role to provide a good perspective on how to diagnose autism, negotiating, coordinating and designing services and interventions by families and physicians during delivery of multiple services. The present study is aimed to present a conceptual model of electronic personal health record for patients with autism.
Material and Methods: This study was conducted on six psychiatric practitioners and six pediatricians from Raoul-e-Akram Hospital and Ali Asghar Hospital with purposeful sampling. A questionnaire has been used for data gathering and identifying information needs. The content validity was measured using expert panel method and test-retest method (r=0.79) was used to perform the reliability test.
Results: According to the findings, the most important data elements of the conceptual model of the personal health record for patients with autism from the viewpoint of physicians are divided into two demographic data segments including first name, father's name, national code, Age, gender, marital status, address and telephone, and clinical data including maternal gestational age, family history, parental relationship, history of developmental delay, name of patient's drug use, test results, age of the first diagnosis of autism , seizure, mental retardation, early diagnosis, treatment history and individual function level (based on valid clinical scales) such as a general clinical measure .Conclusion: Since autism patients’ long life clinical information that recorded in their electronic health records system plays an important role in diagnosis and management of patients' clinical problems, the conceptual model of personal health record for patients with autism could have a significant effect in managing and integrating patient clinical information, increasing the quality of care, and reducing the cost of treatment and diagnosis.
.Baio J. Prevalence of autism spectrum disorders: Autism and developmental disabilities monitoring network, 14 sites, united states, 2008. Morbidity and mortality weekly report. Surveillance summaries. Volume 61, number 3. Centers for Disease Control and Prevention. 2012.
Yiping Shen KAD, Ingrid A. Holm,et al. Clinical genetic testing for patients with autism spectrum disorders. Pediatrics. 2010;125(4):1
Health NCCfM, editor Autism: Recognition, referral, diagnosis and management of adults on the autism spectrum2012: British Psychological Society.
Kim SK. Recent update of autism spectrum disorders. Korean journal of pediatrics. 2015;58(1):8-14.
Bauer NS, Carroll AE, Saha CK, Downs SM. Computer decision support changes physician practice but not knowledge regarding autism spectrum disorders. 2015.
McPartland J, Volkmar FR. Autism and related disorders. Handbook of clinical neurology. 2012;106.
Autism spectrum disorders: World Health Organization (WHO); 2016 [cited 2016]. Available from: http://www.who.int/mediacentre/factsheets/autism-spectrum-disorders/en/.
Samadi SA, McConkey R. Autism in developing countries: Lessons from iran. Autism Research and Treatment. 2011;2011:11. [In Persian]
Mohammadi MR, Salmanian M, Akhondzadeh S. Autism spectrum disorders in iran. Iranian Journal of Child Neurology. 2011;5(4):1-9. [In Persian]
Anagnostou E, Zwaigenbaum L, Szatmari P, Fombonne E, Fernandez BA, Woodbury-Smith M, et al. Autism spectrum disorder: Advances in evidence-based practice. Canadian Medical Association Journal. 2014;186(7):509-19.
Reed P, Picton L, Grainger N, Osborne LA. Impact of diagnostic practices on the self-reported health of mothers of recently diagnosed children with asd. International Journal of Environmental Research and Public Health. 2016;13(9):888.
Statistics NCoVaH. Letter report to the secretary of health and human services on personal health record systems 2005 [cited 2008 May]. Available from: www.ncvhs.hhs.gov/0509091t.htm.
Cimino JJ, Patel VL, Kushniruk AW. What do patients do with access to their medical records? Studies in health technology and informatics. 2001(2):1440-4.
Samadpour H, Sadoughi F. Data set of electronic personal health records for iranian students of medical sciences. Health Information Management. 2015;12(4):425. [In Persian]
Angier H, Gold, R., Crawford, C. et al. Linkage methods for connecting children with parents in electronic health record and state public health insurance data. Maternal and Child Health Journal. 2014;18(9):2025-33.
Angell AM, Solomon O. The social life of health records: Understanding families' experiences of autism. Social Science & Medicine. 2014;117:50-7.
Sadoghi F SM, Ehteshmi A,Aminpor F,Rezaee P. Health information management. Tehran: Jafaripublication; 2011. [In Persian]
Babol havaeji F EZ, Shahrokhi R. Evaluating the information requirements of the electronic health record of diabetic patients from the point of view of endocrinologists. journal of healthcare management. 2014;5(2):13-24. [In Persian]
Scott JT, Thompson DR. Assessing the information needs of post-myocardial infarction patients: A systematic review. Patient education and counseling. 2014;50(2):167-77.
G S. Hospital management 2009. Available from: https://www.scribd.com/doc/2909442/uml-diagrams-of-hospital-managments.