Document Type : Original Article

Authors

1 Department of Health Information Technology, School of Allied Medical Sciences, Tehran University of Medical Sciences, Tehran, Iran

2 Department of Health Information Management, School of Allied Medical Sciences, Tehran University of Medical Sciences, Tehran, Iran

3 Iranian Center of Neurological Research, Neuroscience Institute, Tehran University of Medical Sciences, Tehran, Iran Department of Neurology, Imam Khomeini Hospital Complex, Tehran University of Medical Sciences, Tehran, Iran

Abstract

Background: Failure in early diagnosis of myasthenia gravis (MG) and the risks of taking certain medications and undergoing surgery and anesthesia can lead to severe respiratory disorders and death. However, there are therapeutic measures that significantly control the disease and improve individual’s functionality.
Methods: First, an expert panel was formed, and a needs assessment questionnaire was prepared for the information elements and the capabilities required for the application and provided to neurologists with a subspecialty fellowship in neuromuscular diseases. Then, based on the analyzed results, the application was designed and created in 2 versions (physician and patient), and in 2 languages (Persian and English). Eventually, a questionnaire for user interaction and satisfaction was provided to 5 relevant physicians to evaluate the application.
Results: The results showed that neurologists considered all items of the needs assessment questionnaire to be 100% essential. The capabilities of the application included registering the medication name and dose, recording symptoms and complaints by the patient, completing standard questionnaires, online chat, medication reminder, sending alerts to the doctor when the patient is unwell, and providing a variety of reports. The usability evaluation showed that neurologists evaluated the application at a good level with the average score of 8.23 ± 0.47 (out of 9 points).
Conclusion: In the long run, using this technology can reduce costs, improve patients’ quality of life (QOL) and health care, change health behaviors, and ultimately, improve individual’s health.

Keywords

  1. Abdel-Maboud NF, Elbagoury M, Roushdy M, Salem AB. EMGNEU: Mobile health application for neuromuscular disorders diagnosis. International Journal "Information Technologies and Knowledge" 2015; 9(1): 11-24.
  2. Hughes T. The early history of myasthenia gravis. Neuromuscul Disord 2005; 15(12): 878-86.
  3. Jameson JL, Fauci AS, Kasper DL, Hauser SL, Longo DL, Loscalzo J. Harrison's principles of internal medicine. 20th New York, NY: McGraw-Hill Education; 2018. p. 3790.
  4. Phillips LH. The epidemiology of myasthenia gravis. Ann N Y Acad Sci 2003; 998: 407-12.
  5. Conti-Fine BM, Milani M, Kaminski HJ. Myasthenia gravis: past, present, and future. J Clin Invest 2006; 116(11): 2843-54.
  6. Gold R, Schneider-Gold C. Current and future standards in treatment of myasthenia gravis. Neurotherapeutics 2008; 5(4): 535-41.
  7. Roberts RG. Dystrophin, its gene, and the dystrophinopathies. In: Hall JC, Dunlap JC, Friedmann T, Giannelli F, editors. Advances in genetics (vol. 33). San Diego, CA: Academic Press; 1995. p. 177-231.
  8. Kasper DL, Fauci AS, Hauser SL, Longo DL, Jameson JL, Loscalzo J. Harrison's principles of internal medicine. 19th New York, NY: McGraw-Hill Education; 2015.
  9. Aghajanzadeh M, Roudbari SA, Khadem S, Sakhabakhsh M, Emami D, Masahnia S. The role of thymectomy in remission of myasthenia gravis patients with or without Thymoma. Iran South Med J 2011; 14(3): 179-84. [In Persian].
  10. Ebrahimi Meymand H, Chegin M, Ebrahimi Meymand F. Evaluation of myasthenia gravis in Kerman since 2007 to 2009. J Med Counc I R Iran 2016; 34(1): 62-8. [In Persian].
  11. Carr AS, Cardwell CR, McCarron PO, McConville J. A systematic review of population based epidemiological studies in Myasthenia Gravis. BMC Neurol 2010; 10: 46.
  12. Mao ZF, Mo XA, Qin C, Lai YR, Olde Hartman TC. Course and prognosis of myasthenia gravis: A systematic review. Eur J Neurol 2010; 17(7): 913-21.
  13. Bershad EM, Feen ES, Suarez JI. Myasthenia gravis crisis. South Med J 2008; 101(1): 63-9.
  14. Kellermann AL, Jones SS. what it will take to achieve the as-yet-unfulfilled promises of health information technology. Health Affairs 2013; 32(1): 63-8.
  15. van HA, Tomlinson M, Swartz L. Point of care in your pocket: a research agenda for the field of m-health. Bull World Health Organ 2012; 90(5): 393-4.
  16. Chung C, Huang CY, Wang C, Lin M. Bluetooth-based android interactive applications for smart living. Proceedings of 2nd International Conference on Innovations in Bio-inspired Computing and Applications 2011 Dec 16-18; henzhen, Guangdong, China. IEEE; p. 309-12.
  17. Devi BR, Syed-Abdul S, Kumar A, Iqbal U, Nguyen PA, Li YC, et al. mHealth: An updated systematic review with a focus on HIV/AIDS and tuberculosis long term management using mobile phones. Comput Methods Programs Biomed 2015; 122(2): 257-65.
  18. Benlamri R, Docksteader L. MORF: A mobile health-monitoring platform. IT Prof 2010; 12(3): 18-25.
  19. Estrin D, Sim I. Health care delivery. Open mHealth architecture: An engine for health care innovation. Science 2010; 330(6005): 759-60.
  20. Alessa T, Abdi S, Hawley MS, de WL. Mobile apps to support the self-management of hypertension: systematic review of effectiveness, usability, and user satisfaction. JMIR Mhealth Uhealth 2018; 6(7): e10723.
  21. Jaretzki A, III, Barohn RJ, Ernstoff RM, Kaminski HJ, Keesey JC, Penn AS, et al. Myasthenia gravis: Recommendations for clinical research standards. Task Force of the Medical Scientific Advisory Board of the Myasthenia Gravis Foundation of America. Neurology 2000; 55(1): 16-23.
  22. Ramos-Fransi A, Rojas-Garcia R, Segovia S, Marquez-Infante C, Pardo J, Coll-Canti J, et al. Myasthenia gravis: descriptive analysis of life-threatening events in a recent nationwide registry. Eur J Neurol 2015; 22(7): 1056-61.
  23. Modi D, Vyas J, Shah P. Android based patient monitoring system. Int J Technol Res Eng 2014; 1(9): 790-3.
  24. Peeters JM, Wiegers TA, Friele RD. How technology in care at home affects patient self-care and self-management: A scoping review. Int J Environ Res Public Health 2013; 10(11): 5541-64.
  25. Mehdizadeh H, Fadaizadeh L. Mehdizadeh H, FadaeeZadeh L. Re-designing and evaluation of tele-dermatology software for skin diseases. Journal of Health and Biomedical Informatics 2018; 4(4): 279-90. [In Persian].
  26. Mehdizadeh H. Developing a teledermatology system in a nursing home [MSc Thesis]. Tehran, Iran: Tehran University of Medical Science; 2013. [In Persian].
  27. Shahin S, Eskandarieh S, Moghadasi AN, Razazian N, Baghbanian SM, Ashtari F, et al. Multiple sclerosis national registry system in Iran: Validity and reliability of a minimum data set. Mult Scler Relat Disord 2019; 33: 158-61.
  28. Razazian N, Siabani S, Afshari D, Rezaei M, Fakhri N, Khamooshian K, et al. Multiple sclerosis registry in Kermanshah Province, Iran 2018. J Mazand Univ Med Sci 2020; 30(189): 147-52. [In Persian].
  29. Klumpp P, Janu T, Arias-Vergara T, Vasquez-Correa JC, Orozco-Arroyave JR, Noth E. Apkinson-a mobile monitoring solution for parkinson's disease. Proceedings of the 18th Annual Conference of the International Speech Communication Association (INTERSPEECH 2017); 2017 Aug 20-24; Stockholm, Sweden. p. 1839-43.
  30. Fruhauf J, Schwantzer G, Ambros-Rudolph CM, Weger W, Ahlgrimm-Siess V, Salmhofer W, et al. Acceptance of a mobile patient-support system for the home monitoring of high-need psoriasis patients. In: Schreier, G; Hayn, D; Ammenwerth, E; editors. eHealth 2009. Vienna, Austria: Österreichische Computer Gesellschaft; 2009. p. 107-14.
  31. Blalock ALFR, Harvey AM, Ford FR, Lilienthal JL. The treatment of myasthenia gravis by removal of the thymus gland: Preliminary report. JAMA 1941; 117(18): 1529-33.
  32. Park HS, Cho H, Kim HS. Development of a multi-agent m-health application based on various protocols for chronic disease self-management. J Med Syst 2016; 40(1): 36.