Transition from Pediatric to Adult Specialty Care for Adolescents and Young Adults with Refractory Epilepsy: A Quality Improvement Approach

Journal of Pediatric Nursing

Volumn 30, Issue 5, 2015, Pages e37-e45

  Disabato, Jennifer A ^a   Cook, Paul F ^a   Hutton, Laura ^b   Dinkel, Tristen ^b   Levisohn, Paul M ^c  

^a UNIVERSITY OF COLORADO   (United States)

^b CHILDREN S HOSPITAL COLORADO   (United States)

^c UNIVERSITY OF COLORADO SCHOOL OF MEDICINE   (United States)

Author keywords

Adolescents; Clinical decision support; Epilepsy; Self management; Transition

Indexed keywords

ADOLESCENT; ADULT; CHILD; COHORT ANALYSIS; DRUG RESISTANT EPILEPSY; FEMALE; HUMAN; MALE; ORGANIZATION AND MANAGEMENT; PATIENT CARE; PATIENT EDUCATION; PATIENT SAFETY; PEDIATRICS; PROCEDURES; RISK ASSESSMENT; SELF CARE; TOTAL QUALITY MANAGEMENT; TRANSITION TO ADULT CARE; TREATMENT OUTCOME; UNITED STATES; UNIVERSITY HOSPITAL; YOUNG ADULT;

ACADEMIC MEDICAL CENTERS; ADOLESCENT; ADULT; CHILD; COHORT STUDIES; DRUG RESISTANT EPILEPSY; FEMALE; HUMANS; MALE; PATIENT CARE TEAM; PATIENT EDUCATION AS TOPIC; PATIENT SAFETY; PEDIATRICS; QUALITY IMPROVEMENT; RISK ASSESSMENT; SELF CARE; TRANSITION TO ADULT CARE; TREATMENT OUTCOME; UNITED STATES; YOUNG ADULT;

EID: 84940895533     PISSN: 08825963     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.pedn.2015.06.014     Document Type: Article

References (37)

1. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 2002, 110:1304-1306.
2. Bellini B., Arruda M., Cescut A., Saulle C., Persico A., Carotenuto M., et al. Headache and comorbidity in children and adolescents. The Journal of Headache and Pain 2013, 14:1-11. 10.1186/1129-2377-14-79.
3. Berg A.T. Defining intractable epilepsy. Advances in neurology 2005, 97:5-10.
4. Betz C.L. Facilitating the transition of adolescents with chronic conditions form pediatric to adult health care and community settings. Issues in Comprehensive Pediatric Nursing 1998, 21:97-115. 10.1080/014608698265528.
5. Betz C.L., Ferris M.E., Woodward J.F., xOkumura J.F., Jan S., Wood D.L. The health care transition research consortium health care transition model: A framework for research and practice. Journal of Pediatric Rehabilitation Medicine 2014, 7:3-15. 10.3233/PRM-140277.
6. Betz C.L., Redcay G. Creating healthy futures: An innovative nurse-managed transition clinic for adolescents and young adults with special health care needs. Pediatric Nursing 2003, 29:25-30.
7. Betz C.L., Redcay G. Dimensions of the transition service coordinator role. Journal for Specialists in Pediatric Nursing 2005, 10:49-59. 10.1111/j.1744-6155.2005.00010.x.
8. Callaghan B.C., Anand K., Hesdorffer D., Hauser W.A., French J.A. Likelihood of seizure remission in an adult population with refractory epilepsy. Annals of Neurology 2007, 62:382-389. 10.1002/ana.21166.
9. Camfield Peter, Camfield Carol, Pohlman-Eden Bernd Transition from pediatric to adult epilepsy care: A difficult process marked by medical and social crisis. Epilepsy Currents 2012, 12:13-21. 10.5698/1535-7511-12.4s.13.
10. Carrizosa J., An I., Appleton R., Camfield P., Von Moers A. Models for transition clinics. Epilepsia 2014, 55:46-51. 10.1111/epi.12716.
11. Cascino G.D. When drugs and surgery don't work. Epilepsia 2008, 49:79-84. 10.1111/j.1528-1167.2008.01930.x.
12. Centers for Disease Control and Prevention Epilepsy basics and frequently asked questions Retrieved from. http://www.cdc.gov/epilepsy/basics/faqs.htm.
13. Chiron C., An I. Pharmacology aspects during transition and at transfer in patients with epilepsy. Epilepsia 2014, 55:8-11. 10.1111/epi.12708.
14. Cooley W.C., Sagerman P.J., American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, Transitions Clinical Report Authoring Group Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 2011, 128:182-200. 10.1542/peds.2011-0969.
15. Devinsky Orrin Transition to adult care for children with epilepsy-A call for action. Epilepsia 2014, 55:54-55. 10.1111/epi.12630.
16. England M.J., Liverman C.T., Schultz A.M., Strawbridge L.M. Epilepsy across the spectrum: Promoting health and understanding. A summary of the Institute of Medicine report. Epilepsy & Behavior 2012, 25:266-276. 10.1016/j.yebeh.2012.06.016.
17. Epilepsy Foundation About epilepsy and seizures Retrieved from. http://www.epilepsy.com/learn/epilepsy-statistics.
18. Hamiwka L.D., Wirrell E.C. Comorbidities in pediatric epilepsy: Beyond "just" treating the seizures. Journal of Child Neurology 2009, 24:734-742. 10.1177/0883073808329527.
19. Hibbard J.H., Mahoney E.R., Stockard J., Tusler M. Development and testing of a short form of the Patient Activation Measure. Health Services Research 2005, 40:1918-1930. 10.1111/j.1475-6773.2005.00438.x.
20. Institute for Healthcare Improvement Tools: Cause and effect diagram Retrieved from. http://www.ihi.org/resources/Pages/Tools/CauseandEffectDiagram.aspx.
21. Jurasek L., Ray L., Quigley D. Development and implementation of an adolescent epilepsy transition clinic. Journal of Neuroscience Nursing 2010, 42:181-189. 10.1097/JNN.0b013e3181e26be6.
22. Kelly A.M., Kratz B., Bielski M., Reinhart P.M. Implementing transition for youth with complex chronic conditions using the medical home model. Pediatrics 2002, 110:1322-1327.
23. Kirk S. Transitions in the lives of young people with complex healthcare needs. Child: Care, Health and Development 2008, 34:567-575.
24. Kwan P., Brodie M.J. Early identification of refractory epilepsy. The New England Journal of Medicine 2000, 342:314-319. 10.1056/NEJM200002033420503.
25. Modi A.C., Rausch J.R., Glauser T.A. Early pediatric antiepileptic drug nonadherence is related to lower long-term seizure freedom. Neurology 2014, 82:671-673. 10.1212/WNL.0000000000000147.
26. Nashef L., Capovilla G., Camfield C., Camfield P., Nabbout R. Transition: Driving and exercise. Epilepsia 2014, 55:41-45. 10.1111/epi.12717.
27. Nordli D.R. Special needs of the adolescent with epilepsy. Epilepsia 2001, 42:10-17. 10.1046/j.1528-1157.42.s8.6.x.
28. Patel A. Lost in transition? A practice tool for finding your way to adulthood. Epilepsy Currents 2013, 13:186-187. 10.5698/1535-7597-13.4.186.
29. Rearick E. Enhancing success in transition service coordinators: Use of transformational leadership. Professional Case Management 2007, 12:283-287. 10.1097/01.PCAMA.0000291427.99728.4b.
30. Reiss J. Health care transition for emerging adults with chronic health conditions and disabilities. Pediatric Annals 2012, 41:429-435. 10.3928/00904481-20120924-16.
31. Reiss J.G., Gibson R.W., Walker L.R. Health care transition: Youth, family, and provider perspectives. Pediatrics 2005, 115:112-120. 10.1542/peds.2004-1321.
32. Robert Wood Johnson Foundation The chronic care model: Improving chronic illness care Retrieved from. http://www.improvingchroniccare.org.
33. Sawyer S.M., Aroni R.A. Self-management in adolescents with chronic illness. What does it mean and how can it be achieved?. Medical Journal of Australia 2005, 183:405-409.
34. Sinha S., Siddiqui K.A. Definition of intractable epilepsy. Neurosciences 2011, 16:3-9.
35. Smith K., Siddarth P., Zima B., Sankar R., Mitchell W., Gowrinathan R., et al. Unmet mental health needs in pediatric epilepsy: Insights from providers. Epilepsy & Behavior 2007, 11:401-408. 10.1016/j.yebeh.2007.05.009.
36. Soria C., Escolano S., El Sabbagh S., Chmura S., Bulteau C., Chiron C., et al. Behavioral problems, cognitive difficulties and quality of life in children with epilepsy: An analysis of parental concerns. Child Neuropsychology 2011, 18:209-227. 10.1080/09297049.2011.602012.
37. U.S.Department of Health and Human Services Health information privacy Retrieved from. http://www.hhs.gov/ocr/privacy/index.html.