Transition of Care from Pediatric to Adult Care in Eosinophilic Esophagitis: Insights From a Patient Perspective Survey

被引:5
作者
Robinson, Jane [1 ]
Furuta, Glenn T. [1 ]
Hadker, Nandini [2 ]
Kolev, Irana [2 ]
Williams, James [3 ]
Juethner, Salome [4 ]
Falk, Gary W. [5 ]
机构
[1] Univ Colorado, Sch Med, Gastrointestinal Eosinophil Dis Program, Dept Pediat,Digest Hlth Inst,Childrens Hosp Color, Aurora, CO USA
[2] Trinity Partners LLC, Waltham, MA USA
[3] Shire Human Genet Therapies Inc, Cambridge, MA USA
[4] Takeda Pharmaceut USA Inc, Lexington, MA USA
[5] Univ Penn, Hosp Univ Penn, Dept Internal Med, Div Gastroenterol,Perelman Sch Med, Philadelphia, PA 19104 USA
关键词
care coordination; eosinophil; esophagus; gastrointestinal disease; healthcare; HEALTH-CARE; MANAGEMENT; DIAGNOSIS;
D O I
10.1097/MPG.0000000000003303
中图分类号
R57 [消化系及腹部疾病];
学科分类号
摘要
Eosinophilic esophagitis (EoE) is a chronic immune-mediated disease. Patients with a childhood diagnosis require ongoing disease management in adulthood; however, knowledge of the patient experience during pediatric to adult healthcare transition is lacking. Here, an online survey captured patient perceptions of the challenges faced by patients with EoE in the United States during transition to adult healthcare, and which resources, if implemented, could better support transition. Of 67 respondents, 91% (n = 61) were under adult care at the time of survey completion. Aspects that respondents struggled with most included meal planning, food shopping, cooking/finding foods that did not exacerbate their condition, and knowledge of insurance coverage. Although most respondents reported confidence in having the knowledge to manage their EoE, almost half of the respondents worried about managing their condition in the future. Resources detailing diet, medication and insurance management strategies could support the transition to adult healthcare for patients with EoE.
引用
收藏
页码:722 / 726
页数:5
相关论文
共 11 条
[1]   TRANSITION FROM CHILD-CENTERED TO ADULT HEALTH-CARE SYSTEMS FOR ADOLESCENTS WITH CHRONIC CONDITIONS - A POSITION PAPER OF THE SOCIETY FOR ADOLESCENT MEDICINE [J].
BLUM, RW ;
GARELL, D ;
HODGMAN, CH ;
JORISSEN, TW ;
OKINOW, NA ;
ORR, DP ;
SLAP, GB .
JOURNAL OF ADOLESCENT HEALTH, 1993, 14 (07) :570-576
[2]   Transition from pediatric to adult-oriented health care: a challenge for patients with chronic disease [J].
Callahan, ST ;
Feinstein, R ;
Keenan, P .
CURRENT OPINION IN PEDIATRICS, 2001, 13 (04) :310-316
[3]   Health-care transition from pediatric to adult-focused gastroenterology in patients with eosinophilic esophagitis [J].
Dellon, E. S. ;
Jones, P. D. ;
Martin, N. B. ;
Kelly, M. ;
Kim, S. C. ;
Freeman, K. L. ;
Dellon, E. P. ;
Ferris, M. E. ;
Shaheen, N. J. .
DISEASES OF THE ESOPHAGUS, 2013, 26 (01) :7-13
[4]   Epidemiology and Natural History of Eosinophilic Esophagitis [J].
Dellon, Evan S. ;
Hirano, Ikuo .
GASTROENTEROLOGY, 2018, 154 (02) :319-+
[5]   Advances in Clinical Management of Eosinophilic Esophagitis [J].
Dellon, Evan S. ;
Liacouras, Chris A. .
GASTROENTEROLOGY, 2014, 147 (06) :1238-1254
[6]   Prevalence of Eosinophilic Esophagitis in the United States [J].
Dellon, Evan S. ;
Jensen, Elizabeth T. ;
Martin, Christopher F. ;
Shaheen, Nicholas J. ;
Kappelman, Michael D. .
CLINICAL GASTROENTEROLOGY AND HEPATOLOGY, 2014, 12 (04) :589-+
[7]   Lack of Knowledge and Low Readiness for Health Care Transition in Eosinophilic Esophagitis and Eosinophilic Gastroenteritis [J].
Eluri, Swathi ;
Book, Wendy M. ;
Kodroff, Ellyn ;
Strobel, Mary Jo ;
Gebhart, Jessica H. ;
Jones, Patricia D. ;
Menard-Katcher, Paul ;
Ferris, Maria E. ;
Dellon, Evan S. .
JOURNAL OF PEDIATRIC GASTROENTEROLOGY AND NUTRITION, 2017, 65 (01) :53-57
[8]   Eosinophilic esophagitis in children and adults: A systematic review and consensus recommendations for diagnosis and treatment [J].
Furuta, Glenn T. ;
Liacouras, Chris A. ;
Collins, Margaret H. ;
Gupta, Sandeep K. ;
Justinich, Chris ;
Putnam, Phil E. ;
Bonis, Peter ;
Hassall, Eric ;
Straumann, Alex ;
Rothenberg, Marc E. .
GASTROENTEROLOGY, 2007, 133 (04) :1342-1363
[9]   Lost in the transition from pediatric to adult healthcare? Experiences of young adults with severe asthma [J].
Odling, Maria ;
Jonsson, Marina ;
Janson, Christer ;
Melen, Erik ;
Bergstrom, Anna ;
Kull, Inger .
JOURNAL OF ASTHMA, 2020, 57 (10) :1119-1127
[10]   Eosinophilic Esophagitis [J].
Reed, Craig C. ;
Dellon, Evan S. .
MEDICAL CLINICS OF NORTH AMERICA, 2019, 103 (01) :29-+