Pediatric-to-Adult Transfer of Care in Patients With Pancreas Disease: Recommendations for Care and Research Opportunities.
Journal
The American journal of gastroenterology
ISSN: 1572-0241
Titre abrégé: Am J Gastroenterol
Pays: United States
ID NLM: 0421030
Informations de publication
Date de publication:
01 03 2023
01 03 2023
Historique:
received:
23
12
2020
accepted:
15
07
2022
pubmed:
22
7
2022
medline:
7
3
2023
entrez:
21
7
2022
Statut:
ppublish
Résumé
Young adults who have experienced recurrent acute pancreatitis and chronic pancreatitis as children or adolescents are vulnerable to poor follow-up and disease management during the transfer from the pediatric to adult healthcare system. Although formalized transition programs for young adults have been developed and described for other disease conditions, no such program has been described for young adults with pancreatic disease. This document is the first expert opinion outlining the important aspects of a transitional care and transfer program tailored to youth with recurrent acute and chronic pancreatitis. We emphasize the unique needs of these patients as they transfer to adult health care and the need for further research. The goal of improved transitional care and transfer is to enhance the services provided to adolescents/young adults with pancreatic disease in both healthcare settings and improve continuity of follow-up care.
Identifiants
pubmed: 35862827
doi: 10.14309/ajg.0000000000001910
pii: 00000434-202303000-00020
pmc: PMC10147498
mid: NIHMS1891965
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
443-451Subventions
Organisme : NIDDK NIH HHS
ID : U01 DK108323
Pays : United States
Organisme : NIDDK NIH HHS
ID : U01 DK108334
Pays : United States
Informations de copyright
Copyright © 2022 by The American College of Gastroenterology.
Références
Reiss J, Gibson R. Health care transition: Destinations unknown. Pediatrics 2002;110:1307–14.
Wysocki T, Hough BS, Ward KM, Green LB. Diabetes mellitus in the transition to adulthood: Adjustment, self-care, and health status. J Dev Behav Pediatr 1992;13:194–201.
Watson AR. Non-compliance and transfer from paediatric to adult transplant unit. Pediatr Nephrol 2000;14:469–72.
Yeung E, Kay J, Roosevelt GE, et al. Lapse of care as a predictor for morbidity in adults with congenital heart disease. Int J Cardiol 2008;125:62–5.
White PH, Cooley WC. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 2018;142:e20182587.
Morinville VD, Barmada MM, Lowe ME. Increasing incidence of acute pancreatitis at an American pediatric tertiary care center: Is greater awareness among physicians responsible? Pancreas 2010;39:5–8.
Sellers ZM, MacIsaac D, Yu H, et al. Nationwide trends in acute and chronic pancreatitis among privately insured children and non-elderly adults in the United States, 2007-2014. Gastroenterology 2018;155:469–78.
Kumar S, Ooi CY, Werlin S, et al. Risk factors associated with pediatric acute recurrent and chronic pancreatitis: Lessons from INSPPIRE. JAMA Pediatr 2016;170:562–9.
Pant C, Sferra TJ. Emergency department visits and hospitalizations in children with chronic pancreatitis in the United States. J Pediatr Gastroenterol Nutr 2015;61:568–70.
Schwarzenberg SJ, Bellin M, Husain SZ, et al. Pediatric chronic pancreatitis is associated with genetic risk factors and substantial disease burden. J Pediatr 2015;166:890–6.
Liu QY, Abu-El-Haija M, Husain SZ, et al. Risk factors for rapid progression from acute recurrent to chronic pancreatitis in children: Report from INSPPIRE. J Pediatr Gastroenterol Nutr 2019;69:206–11.
Transition G. ( GotTransition.org ). Accessed December 10, 2020.
Whitcomb DC, Frulloni L, Garg P, et al. Chronic pancreatitis: An international draft consensus proposal for a new mechanistic definition. Pancreatology 2016;16:218–24.
Hegyi P, Parniczky A, Lerch MM, et al. International consensus guidelines for risk factors in chronic pancreatitis. Recommendations from the working group for the international consensus guidelines for chronic pancreatitis in collaboration with the international association of Pancreatology, the American pancreatic association, the Japan pancreas society, and European pancreatic club. Pancreatology 2020;20:579–85.
Gardner TB, Adler DG, Forsmark CE, et al. ACG clinical guideline: Chronic pancreatitis. Am J Gastroenterol 2020;115:322–39.
Ellison MA, Spagnolo DM, Shelton C, et al. Complex genetics in pancreatitis: Insights gained from a new candidate locus panel. Pancreas 2020;49:983–98.
Joergensen MT, Brusgaard K, Cruger DG, et al. Genetic, epidemiological, and clinical aspects of hereditary pancreatitis: A population-based cohort study in Denmark. Am J Gastroenterol 2010;105:1876–83.
Saito N, Suzuki M, Sakurai Y, et al. Genetic analysis of Japanese children with acute recurrent and chronic pancreatitis. J Pediatr Gastroenterol Nutr 2016;63:431–6.
Wejnarska K, Kolodziejczyk E, Wertheim-Tysarowska K, et al. The etiology and clinical course of chronic pancreatitis in children with early onset of the disease. J Pediatr Gastroenterol Nutr 2016;63:665–70.
Schwarzenberg SJ, Uc A, Zimmerman B, et al. Chronic pancreatitis: Pediatric and adult cohorts show similarities in disease progress despite different risk factors. J Pediatr Gastroenterol Nutr 2019;68:566–73.
Conwell DL, Banks PA, Sandhu BS, et al. Validation of demographics, etiology, and risk factors for chronic pancreatitis in the USA: A report of the North American pancreas study (NAPS) group. Dig Dis Sci 2017;62:2133–40.
Cote GA, Yadav D, Slivka A, et al. Alcohol and smoking as risk factors in an epidemiology study of patients with chronic pancreatitis. Clin Gastroenterol Hepatol 2011;9:266–73.
Romagnuolo J, Talluri J, Kennard E, et al. Clinical profile, etiology, and treatment of chronic pancreatitis in North American women: Analysis of a large multicenter cohort. Pancreas 2016;45:934–40.
Yadav D, Timmons L, Benson JT, et al. Incidence, prevalence, and survival of chronic pancreatitis: A population-based study. Am J Gastroenterol 2011;106:2192–9.
Giefer MJ, Lowe ME, Werlin SL, et al. Early-onset acute recurrent and chronic pancreatitis is associated with PRSS1 or CTRC gene mutations. J Pediatr 2017;186:95–100.
Baldwin C, Zerofsky M, Sathe M, et al. Acute recurrent and chronic pancreatitis as initial manifestations of cystic fibrosis and cystic fibrosis transmembrane conductance regulator-related disorders. Pancreas 2019;48:888–93.
Pfützer RH, Barmada MM, Brunskill AP, et al. SPINK1/PSTI polymorphisms act as disease modifiers in familial and idiopathic chronic pancreatitis. Gastroenterology 2000;119:615–23.
Di Leo M, Bianco M, Zuppardo RA, et al. Meta-analysis of the impact of SPINK1 p.N34S gene variation in Caucasic patients with chronic pancreatitis. An update. Dig Liver Dis 2017;49:847–53.
Ting J, Wilson L, Schwarzenberg SJ, et al. Direct costs of acute recurrent and chronic pancreatitis in children in the INSPPIRE registry. J Pediatr Gastroenterol Nutr 2016;62:443–9.
Witt H, Beer S, Rosendahl J, et al. Variants in CPA1 are strongly associated with early onset chronic pancreatitis. Nat Genet 2013;45:1216–20.
Fjeld K, Weiss FU, Lasher D, et al. A recombined allele of the lipase gene CEL and its pseudogene CELP confers susceptibility to chronic pancreatitis. Nat Genet 2015;47:518–22.
Ragvin A, Fjeld K, Weiss FU, et al. The number of tandem repeats in the carboxyl-ester lipase (CEL) gene as a risk factor in alcoholic and idiopathic chronic pancreatitis. Pancreatology 2013;13:29–32.
Gariepy CE, Heyman MB, Lowe ME, et al. Causal evaluation of acute recurrent and chronic pancreatitis in children: Consensus from the INSPPIRE group. J Pediatr Gastroenterol Nutr 2017;64:95–103.
Johns JD, Rowe SM. The effect of CFTR modulators on a cystic fibrosis patient presenting with recurrent pancreatitis in the absence of respiratory symptoms: A case report. BMC Gastroenterol 2019;19:123.
Bellin MD, Abu-El-Haija M, Morgan K, et al. A multicenter study of total pancreatectomy with islet autotransplantation (TPIAT): POST (prospective observational study of TPIAT). Pancreatology 2018;18:286–90.
Lasher D, Szabó A, Masamune A, et al. Protease-sensitive pancreatic lipase variants are associated with early onset chronic pancreatitis. Am J Gastroenterol 2019;114:974–83.
Masamune A, Kotani H, Sörgel FL, et al. Variants that affect function of calcium channel TRPV6 are associated with early-onset chronic pancreatitis. Gastroenterology 2020;158:1626–41. e8.
Hegyi E, Tóth AZ, Vincze Á, et al. Alcohol-dependent effect of PRSS1-PRSS2 haplotype in chronic pancreatitis. Gut 2020;69:1–2.
Derikx MH, Kovacs P, Scholz M, et al. Polymorphisms at PRSS1-PRSS2 and CLDN2-MORC4 loci associate with alcoholic and non-alcoholic chronic pancreatitis in a European replication study. Gut 2015;64:1426–33.
Abu-El-Haija M, Uc A, Werlin SL, et al. Nutritional considerations in pediatric pancreatitis: A position paper from the NASPGHAN pancreas committee and ESPGHAN cystic fibrosis/pancreas working group. J Pediatr Gastroenterol Nutr 2018;67:131–43.
Freeman AJ, Maqbool A, Bellin MD, et al. Medical management of chronic pancreatitis in children: A position paper by the NASPGHAN pancreas committee. J Pediatr Gastroenterol Nutr 2020;72(2):324-340.
Duggan SN, Smyth ND, O'Sullivan M, et al. The prevalence of malnutrition and fat-soluble vitamin deficiencies in chronic pancreatitis. Nutr Clin Pract 2014;29:348–54.
Girish BN, Rajesh G, Vaidyanathan K, Balakrishnan V. Zinc status in chronic pancreatitis and its relationship with exocrine and endocrine insufficiency. JOP 2009;10:651–6.
Sheth SG, Conwell DL, Whitcomb DC, et al. Academic pancreas centers of excellence: Guidance from a multidisciplinary chronic pancreatitis working group at PancreasFest. Pancreatology 2017;17:419–30.
Rickels MR, Bellin M, Toledo FGS, et al. Detection, evaluation and treatment of diabetes mellitus in chronic pancreatitis: Recommendations from PancreasFest 2012. Pancreatology 2013;13:336–42.
Hart PA, Bellin MD, Andersen DK, et al. Type 3c (pancreatogenic) diabetes mellitus secondary to chronic pancreatitis and pancreatic cancer. Lancet Gastroenterol Hepatol 2016;1:226–37.
Aslam M, Jagtap N, Karyampudi A, et al. Risk factors for development of endocrine insufficiency in chronic pancreatitis. Pancreatology 2021;21:15–20.
Borowitz DS, Grand RJ, Durie PR. Use of pancreatic enzyme supplements for patients with cystic fibrosis in the context of fibrosing colonopathy. Consensus Committee. J Pediatr 1995;127:681–4.
Perbtani Y, Forsmark CE. Update on the diagnosis and management of exocrine pancreatic insufficiency. 2019;8:F1000Res.
Golden NH, Abrams SA, Committee on N. Optimizing bone health in children and adolescents. Pediatrics 2014;134:e1229–43.
Srivastava A, Saini N, Mathias A, et al. Prevalence and predictive factors of undernutrition and low bone mineral density in children with chronic pancreatitis. Pancreatology 2021;21:74–80.
Duggan SN, Smyth ND, Murphy A, et al. High prevalence of osteoporosis in patients with chronic pancreatitis: A systematic review and meta-analysis. Clin Gastroenterol Hepatol 2014;12:219–28.
Munigala S, Agarwal B, Gelrud A, Conwell DL. Chronic pancreatitis and fracture: A retrospective, population-based veterans administration study. Pancreas 2016;45:355–61.
Wisk LE, Sharma N. Inequalities in young adult health insurance coverage post-federal health reform. J Gen Intern Med 2019;34:65–74.
Thompson L, Ford HL, Stroud A, Madill A. Managing the (In)visibility of chronic illness at work: Dialogism, parody, and reported speech. Qual Health Res 2019;29:1213–26.
Kaushansky D, Cox J, Dodson C, et al. Living a secret: Disclosure among adolescents and young adults with chronic illnesses. Chronic Illn 2017;13:49–61.
Palermo TM. Impact of recurrent and chronic pain on child and family daily functioning: A critical review of the literature. J Dev Behav Pediatr 2000;21:58–69.
Rich KL, Abu-El-Haija M, Nathan JD, Lynch-Jordan A. The role of psychology in the care of children with pancreatitis. Pancreas 2020;49:887–90.
Keller CE, Wilcox CM, Gudleski GD, et al. Beyond abdominal pain: Pain beliefs, pain affect, and distress as determinants of quality of life in patients with chronic pancreatitis. J Clin Gastroenterol 2018;52:563–8.
Pohl JF, Limbers CA, Kay M, et al. Health-related quality of life in pediatric patients with long-standing pancreatitis. J Pediatr Gastroenterol Nutr 2012;54:657–63.
Cote GA, Yadav D, Abberbock JA, et al. Recurrent acute pancreatitis significantly reduces quality of life even in the absence of overt chronic pancreatitis. Am J Gastroenterol 2018;113:906–12.
Leeb RT, Danielson ML, Bitsko RH, et al. Support for transition from adolescent to adult health care among adolescents with and without mental, behavioral, and developmental disorders - United States, 2016-2017. MMWR Morb Mortal Wkly Rep 2020;69:1156–60.
Gatchel RJ, McGeary DD, McGeary CA, Lippe B. Interdisciplinary chronic pain management: Past, present, and future. Am Psychol 2014;69:119–30.
Anderson MA, Akshintala V, Albers KM, et al. Mechanism, assessment and management of pain in chronic pancreatitis: Recommendations of a multidisciplinary study group. Pancreatology 2016;16:83–94.
Madan A, Borckardt JJ, Barth KS, et al. Interprofessional collaborative care reduces excess service utilization among individuals with chronic pancreatitis. J Healthc Qual 2013;35:41–6.
Muthulingam JA, Hansen TM, Olesen SS, et al. Altered brain morphology in chronic pancreatitis patients and its association with pain and other disease characteristics. Eur J Gastroenterol Hepatol 2019;31:1092–8.
Perito ER, Palermo TM, Pohl JF, et al. Factors associated with frequent opioid use in children with acute recurrent and chronic pancreatitis. J Pediatr Gastroenterol Nutr 2020;70:106–14.
Barth KS, Balliet W, Pelic CM, et al. Screening for current opioid misuse and associated risk factors among patients with chronic nonalcoholic pancreatitis pain. Pain Med 2014;15:1359–64.
Fortuna RJ, Robbins BW, Caiola E, et al. Prescribing of controlled medications to adolescents and young adults in the United States. Pediatrics 2010;126:1108–16.
Hudgins JD, Porter JJ, Monuteaux MC, Bourgeois FT. Trends in opioid prescribing for adolescents and young adults in ambulatory care settings. Pediatrics 2019;143:e20181578.
Drewes AM, Bouwense SAW, Campbell CM, et al. Guidelines for the understanding and management of pain in chronic pancreatitis. Pancreatology 2017;17:720–31.
Dart RC, Surratt HL, Cicero TJ, et al. Trends in opioid analgesic abuse and mortality in the United States. New Engl J Med 2015;372:241–8.
Tick H, Nielsen A, Pelletier KR, et al. Evidence-based nonpharmacologic strategies for comprehensive pain care: The Consortium pain task force white paper. Explore (NY) 2018;14:177–211.
Palermo TM, Murray C, Aalfs H, et al. Web-based cognitive-behavioral intervention for pain in pediatric acute recurrent and chronic pancreatitis: Protocol of a multicenter randomized controlled trial from the study of chronic pancreatitis, diabetes and pancreatic cancer (CPDPC). Contemp Clin Trials 2020;88:105898.
Boersma K, Södermark M, Hesser H, et al. Efficacy of a transdiagnostic emotion-focused exposure treatment for chronic pain patients with comorbid anxiety and depression: A randomized controlled trial. Pain 2019;160:1708–18.
Weissman S, Takakura K, Eibl G, et al. The diverse involvement of cigarette smoking in pancreatic cancer development and prognosis. Pancreas 2020;49:612–20.
CDC. Reducing the Health Consequences of Smoking: 25 Years of Progress-Aa Report of the Surgeon General. US Department of Health and Human Services, Public Health Service: Rockville, Maryland, 1989.
Cullen KA, Gentzke AS, Sawdey MD, et al. e-Cigarette Use Among Youth in the United States, 2019.JAMA 2019;322(21):2095-103.
National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Population Health and Public Health Practice; Committee on the Review of the Health Effects of Electronic Nicotine Delivery Systems; Eaton DL, Kwan LY, Stratton K, editors. Public Health Consequences of E-Cigarettes. Washington (DC): National Academies Press (US); 2018 Jan 23. 16, Combustible Tobacco Cigarette Smoking Among Youth and Young Adults. ( https://www.ncbi.nlm.nih.gov/books/NBK507169/ )
Centers for Disease Control and Prevention. Youth Risk Behavior Surveillance — United States, 2019. MMWR Suppl, 2020;69(1):1‐83.
Wood DL, Sawicki GS, Miller MD, et al. The transition readiness assessment questionnaire (TRAQ): Its factor structure, reliability, and validity. Acad Pediatr 2014;14:415–22.
Sawicki GS, Lukens-Bull K, Yin X, et al. Measuring the transition readiness of youth with special healthcare needs: Validation of the TRAQ--transition readiness assessment questionnaire. J Pediatr Psychol 2011;36:160–71.
National Pancreas Foundation. (https://pancreasfoundation.org/npf-centers-info/pancreatitis-centers/) . Accessed August 16, 2022
Serrano J, Andersen DK, Forsmark CE, et al. Consortium for the study of chronic pancreatitis, diabetes, and pancreatic cancer: From concept to reality. Pancreas 2018;47:1208–12.
McManus M, White P, Barbour A, et al. Pediatric to adult transition: A quality improvement model for primary care. J Adolesc Health 2015;56:73–8.
Olayiwola JN, Magana C, Harmon A, et al. Telehealth as a bright spot of the COVID-19 pandemic: Recommendations from the virtual frontlines ("Frontweb"). JMIR Public Health Surveill 2020;6:e19045.
Montero AM, Jones S. Roles and impact of psychologists in interdisciplinary gastroenterology care. Clin Gastroenterol Hepatol 2020;18:290–3.
Uc A, Husain SZ. Pancreatitis in children. Gastroenterology 2019;156:1969–78.
Philpott JR, Kurowski JA. Challenges in transitional care in inflammatory bowel disease: A review of the current literature in transition readiness and outcomes. Inflamm Bowel Dis 2019;25:45–55.
Gray WN, Resmini AR, Baker KD, et al. Concerns, barriers, and recommendations to improve transition from pediatric to adult IBD care: Perspectives of patients, parents, and health professionals. Inflamm Bowel Dis 2015;21:1641–51.
Shapiro JM, El-Serag HB, Gandle C, et al. Recommendations for successful transition of adolescents with inflammatory bowel diseases to adult care. Clin Gastroenterol Hepatol 2020;18:276–89.
Hart LC, Patel-Nguyen SV, Merkley MG, Jonas DE. An evidence map for interventions addressing transition from pediatric to adult care: A systematic review of systematic reviews. J Pediatr Nurs 2019;48:18–34.