An Overview of Digital Health in the Transition of Pediatric to Adult Epilepsy Care

Abstract

Children with epilepsy often have impairments in cognitive and behavioral functioning which may hinder socio-occupational well-being as they reach adulthood. Adolescents with epilepsy have the added worry of health problems while starting the transition from family-centered pediatric care into largely autonomous adult care. If this transition is not appropriately planned and resourced, it may result in medical mistrust, nonadherence, and worsening biopsychosocial health as an adult. In recent years, there has been increased availability of digital health solutions that may be used during this stark change in care and treating teams. The digital health landscape includes a wide variety of technologies meant to address challenges faced by patients, caregivers, medical professionals, and health care systems. These technologies include mobile health products and wearable devices (e.g., seizure monitors and trackers, smartphone passive data collection), digital therapeutics (e.g., cognitive/behavioral health management; digital speech–language therapy), telehealth services (e.g., teleneurology visits), and health information technology (e.g., electronic medical records with patient portals). Such digital health solutions may empower patients in their journey toward optimal brain health during the vulnerable period of pediatric to adult care transition. Further research is needed to validate and measure their impact on clinical outcomes, health economics, and quality of life.

Keywords

care transition - digital health - technology

Publication History

Received: 26 July 2020

Accepted: 06 August 2020

Article published online:
23 September 2020

• References

• 1 Knupp K, Koh S, Park K. Pediatric epilepsy: five new things. Neurol Clin Pract 2012; 2 (01) 40-47
• 2 Hauser WA. The prevalence and incidence of convulsive disorders in children. Epilepsia 1994; 35 (Suppl. 02) S1-S6
• 3 Rajendran S, Iyer A. Epilepsy: addressing the transition from pediatric to adult care. Adolesc Health Med Ther 2016; 7: 77-87
• 4 Andrade DM, Bassett AS, Bercovici E. et al. Epilepsy: transition from pediatric to adult care. Recommendations of the Ontario epilepsy implementation task force. Epilepsia 2017; 58 (09) 1502-1517
• 5 Thomson L, Fayed N, Sedarous F, Ronen GM. Life quality and health in adolescents and emerging adults with epilepsy during the years of transition: a scoping review. Dev Med Child Neurol 2014; 56 (05) 421-433
• 6 Transition Tools, Adolescents, American Epilepsy Society. 2014 . Available at: https://www.aesnet.org/clinical_resources/practice_tools/transition_tools_adolescents . Accessed May 14, 2020
• 7 Camfield P, Camfield C, Pohlmann-Eden B. Transition from pediatric to adult epilepsy care: a difficult process marked by medical and social crisis. Epilepsy Curr 2012; 12 (Suppl. 03) 13-21
• 8 Snowdon A. HIMSS Defines Digital Health for the Global Healthcare Industry, Healthcare Information and Management Systems Society, Inc. 2020 . Available at: https://www.himss.org/news/himss-defines-digital-health-global-healthcare-industry . Accessed May 14, 2020
• 9 Center for Devices and Radiological Health, Digital Health, U.S. Food and Drug Administration. 2020 . Available at: https://www.fda.gov/medical-devices/digital-health . Accessed May 14, 2020
• 10 Chang E, West M. Digital ecosystems a next generation of the collaborative environment. In: Proceedings of the Eighth International Conference on Information Integration and Web-based Applications Services. 2006: 3-24
• 11 Rowlands D. What is digital health? And why does it matter? Health Informatics Society of Australia. 2019 . Available at: https://www.hisa.org.au/wp-content/uploads/2019/12/What_is_Digital_Health.pdf?x97063 . Accessed: May 15, 2020
• 12 Clement J. Worldwide digital population as of April 2020. Statista. 2020 Available at: https://www.statista.com/statistics/617136/digital-population-worldwide/ . Accessed May 21, 2020
• 13 Accenture Consulting. Accenture 2019 Digital Health Consumer Survey US Results. Accenture. 2019 . Available at: https://www.accenture.com/_acnmedia/pdf-94/accenture-2019-digital-health-consumer-survey.pdf . Accessed: May 15, 2019
• 14 Park S, Garcia-Palacios J, Cohen A, Varga Z. From treatment to prevention: the evolution of digital healthcare. Nature 2019. Available at: https://www.nature.com/articles/d42473-019-00274-6
• 15 Steinhubl SR, Topol EJ. Digital medicine, on its way to being just plain medicine. NPJ Digit Med 2018; 1: 20175
• 16 Shegog R, Braverman L, Hixson JD. Digital and technological opportunities in epilepsy: toward a digital ecosystem for enhanced epilepsy management. Epilepsy Behav 2020; 102: 106663
• 17 Harding AC, Shegog R, Begley CE. Biomedical informatics applications for epilepsy management: a systematic review [dissertation]. Houston, TX: The University of Texas; 2011
• 18 PRNewswire. DEARhealth Announces Collaboration with UCB to Improve Care Delivery Through New Technology for Patients Living with Epilepsy. Cision. 2019 . Available at: https://www.prnewswire.com/news-releases/dearhealth-announces-collaboration-with-ucb-to-improve-care-delivery-through-new-technology-for-patients-living-with-epilepsy-300879032.html . Accessed May 26, 2020
• 19 Glynn P, Eom S, Zelko F, Koh S. Feasibility of a mobile cognitive intervention in childhood absence epilepsy. Front Hum Neurosci 2016; 10: 575
• 20 Naganur VD, Kusmakar S, Chen Z, Palaniswami MS, Kwan P, O'Brien TJ. The utility of an automated and ambulatory device for detecting and differentiating epileptic and psychogenic non-epileptic seizures. Epilepsia Open 2019; 4 (02) 309-317
• 21 Whitmire L, Cardenas D, Malloy K. Using surface electromyography to differentiate between generalized tonic-clonic seizures and psychogenic non-epileptic seizures. Clin Neurophysiol 2018; 129: 211 . Available at: https://www.sciencedirect.com/science/article/pii/S1388245718308447.
• 22 Ulate-Campos A, Coughlin F, Gaínza-Lein M, Fernández IS, Pearl PL, Loddenkemper T. Automated seizure detection systems and their effectiveness for each type of seizure. Seizure 2016; 40: 88-101
• 23 Hixson JD, Braverman L. Digital tools for epilepsy: opportunities and barriers. Epilepsy Res 2020; 162: 106233
• 24 Kotwas I, McGonigal A, Bastien-Toniazzo M, Bartolomei F, Micoulaud-Franchi JA. Stress regulation in drug-resistant epilepsy. Epilepsy Behav 2017; 71 (Pt A): 39-50
• 25 Kanner AM, Schachter SC, Barry JJ. et al. Depression and epilepsy: epidemiologic and neurobiologic perspectives that may explain their high comorbid occurrence. Epilepsy Behav 2012; 24 (02) 156-168
• 26 Choi MJ, Kim H, Nah HW, Kang DW. Digital therapeutics: emerging new therapy for neurologic deficits after stroke. J Stroke 2019; 21 (03) 242-258
• 27 Leeman-Markowski BA, Schachter SC. Cognitive and behavioral interventions in epilepsy. Curr Neurol Neurosci Rep 2017; 17 (05) 42
• 28 UCB-USA. UCB and DEARhealth Collaborate on New Software to Improve Patient Care. Union Chimique Belge. 2019 . Available at: https://ucb-usa.com/stories-media/UCB-U-S-News/detail/article/UCB-and-DEARhealth-collaborate-on-new-software-to-improve-patient . Accessed May 26, 2020
• 29 Chandrashekar P. Do mental health mobile apps work: evidence and recommendations for designing high-efficacy mental health mobile apps. mHealth 2018; 4: 6
• 30 van Rijckevorsel K. Cognitive problems related to epilepsy syndromes, especially malignant epilepsies. Seizure 2006; 15 (04) 227-234
• 31 McIntyre RS, Cha DS, Soczynska JK. et al. Cognitive deficits and functional outcomes in major depressive disorder: determinants, substrates, and treatment interventions. Depress Anxiety 2013; 30 (06) 515-527
• 32 Meyer B, Weiss M, Holtkamp M. et al. Effects of an epilepsy-specific Internet intervention (Emyna) on depression: results of the ENCODE randomized controlled trial. Epilepsia 2019; 60 (04) 656-668
• 33 Afra P, Bruggers CS, Sweney M. et al. Mobile software as a Medical Device (SaMD) for the treatment of epilepsy: development of digital therapeutics comprising behavioral and music-based interventions for neurological disorders. Front Hum Neurosci 2018; 12: 171
• 34 AMA Digital Health Research. Physicians motivations and requirements for adopting digital health, Adoption and attitudinal shifts from 2016 to 2019. American Medical Association. 2020 . Available at: https://www.ama-assn.org/system/files/2020-02/ama-digital-health-study.pdf . Accessed July 7, 2020
• 35 Esteva A, Robicquet A, Ramsundar B. et al. A guide to deep learning in healthcare. Nat Med 2019; 25 (01) 24-29
• 36 LeCun Y, Bengio Y, Hinton G. Deep learning. Nature 2015; 521 (7553): 436-444
• 37 Muniasamy A, Tabassam S, Hussain MA, Sultana H, Muniasamy V, Bhatnagar R. Deep Learning for Predictive Analytics in Healthcare. In: The International Conference on Advanced Machine Learning Technologies and Applications (AMLTA2019). Cham: Springer International Publishing; 2020. 921. 32-42
• 38 Nyce C. Predictive analytics white paper. American Institute for CPCU/Insurance Institute of America. 2007 . Available at: http://www.theinstitutes.org/doc/predictivemodelingwhitepaper.pdf . Accessed: May 25, 2019
• 39 Abbasi B, Goldenholz DM. Machine learning applications in epilepsy. Epilepsia 2019; 60 (10) 2037-2047
• 40 Poh MZ, Loddenkemper T, Reinsberger C. et al. Convulsive seizure detection using a wrist-worn electrodermal activity and accelerometry biosensor. Epilepsia 2012; 53 (05) e93-e97
• 41 Velez M, Fisher RS, Bartlett V, Le S. Tracking generalized tonic-clonic seizures with a wrist accelerometer linked to an online database. Seizure 2016; 39: 13-18
• 42 Lockman J, Fisher RS, Olson DM. Detection of seizure-like movements using a wrist accelerometer. Epilepsy Behav 2011; 20 (04) 638-641
• 43 Halford JJ, Sperling MR, Nair DR. et al. Detection of generalized tonic-clonic seizures using surface electromyographic monitoring. Epilepsia 2017; 58 (11) 1861-1869
• 44 Caller TA, Ferguson RJ, Roth RM. et al. A cognitive behavioral intervention (HOBSCOTCH) improves quality of life and attention in epilepsy. Epilepsy Behav 2016; 57 (Pt A): 111-117
• 45 Begley C, Shegog R, Harding A, Goldsmith C, Hope O, Newmark M. Longitudinal feasibility of MINDSET: a clinic decision aid for epilepsy self-management. Epilepsy Behav 2015; 44: 143-150
• 46 Sajatovic M, Colon-Zimmermann K, Kahriman M. et al. A 6-month prospective randomized controlled trial of remotely delivered group format epilepsy self-management versus waitlist control for high-risk people with epilepsy. Epilepsia 2018; 59 (09) 1684-1695
• 47 Thompson NJ, Walker ER, Obolensky N. et al. Distance delivery of mindfulness-based cognitive therapy for depression: project UPLIFT. Epilepsy Behav 2010; 19 (03) 247-254
• 48 DiIorio C, Bamps Y, Walker ER, Escoffery C. Results of a research study evaluating WebEase, an online epilepsy self-management program. Epilepsy Behav 2011; 22 (03) 469-474