804 A Personalized Health Passport or Summary Document for the Patient The patient should also receive a copy of their health summary in an easy to understand format, commensurate with their health li[.]
804 Personalized Health Passport or A Summary Document for the Patient The patient should also receive a copy of their health summary in an easy-to-understand format, commensurate with their health literacy Providing this a few years before transfer (and regularly updating it) can help empower the patient and assist them in learning about their health condition A health passport is also useful; an excellent prototype can be found on the Good Go Transition website, from the SickKids Hospital in Toronto [69] A variety of passports are available on this site from a drop-down list, including one specifically for kidney disease These passports are very comprehensive and once created can be printed into a wallet size card They include the patient’s medical conditions, past procedures, treatments, medications, allergies, and other health-related information Healthcare providers or parents can assist the patient in completing their passport online, as needed pen Bidirectional Communication O Between the Pediatric and Adult Teams Both the pediatric and adult nephrology teams need to appreciate each other’s approaches to care This can enhance the pediatric team’s preparation of their patients for transfer and the adult team’s understanding of the expectations of the adolescents and young adults For complex patients, like those on dialysis or with advanced CKD, it is very helpful for the healthcare professionals at each site to communicate by phone or in person, not just in writing For patients with kidney diseases seen primarily in pediatric practice, a condition fact sheet can be very helpful for the adult care provider This is particularly relevant for genetic conditions and congenital anomalies It is also useful for the adult and pediatric teams to give each other feedback on how each patient’s transition process went, in order to facilitate continuous improvement Things to consider are how well the pediatric team prepared L E Bell and D Bethe the patient for the adult model of care, the patient’s attendance at follow-up visits, avoidable complications, and the patient and family’s satisfaction and ideas for improvement ecognition by the Adult Team R of the Young Adult’s Developmental Needs Many patients who transfer at the younger end of the transition age spectrum need ongoing support to achieve their potential In Canada, a number of European countries, Australia, and New Zealand, the required age to transfer is at around 18 years of age, sometimes with little flexibility During this vulnerable age, extra services are often needed by the patient to help address psychosocial issues, education, and the development of autonomy in their medical care [39, 70] Continuation of the Transition Process After Transfer to Adult Care, Until the Young Person Is Fully Integrated and Able to Function in the Adult System Following transfer to adult care, communication and collaboration between the pediatric and adult teams remains important Transition does not end with transfer – it continues until the young person is fully integrated into adult care Preparing the setting for the young person’s entry to the adult site can make a substantial difference to the likelihood of success Recommendations are for the adult site to have a welcome package that orients the young person to the new hospital and clinic [71] For dialysis patients, this could include the following: the names and contact information for all the relevant healthcare professionals the patient will interact with in the dialysis unit (e.g., the nephrologists, dialysis nurses, nutritionist, social worker, psychologist, and administrative support staff), other relevant clinic information (e.g., the pretransplant evaluation clinic staff names and contact information), who (and how) to contact adult care providers for an 41 Transition and Transfer to Adult Care for Adolescents and Young Adults with Advanced Chronic… emergency outside of dialysis hours, location and contact information for medical imaging, the blood procurement center, the emergency department, and other logistics A welcome tour of the new facility and hospital is also important, as is an intake meeting with the young person during which time issues important to them are discussed Confidentiality and communication of information also needs to be addressed; whereas in the pediatric center the parent is often contacted to receive their child’s test results or to set up appointments, the patient will almost always be the person contacted in the adult program Many adolescents and young adults with kidney failure have additional health problems and are followed by other specialty services There is a need to facilitate continuity of care for all of the patient’s healthcare issues This is particularly important because of the known risks of losses to follow-up in many different disease groups after transfer to adult care [9] A system to help patients coordinate all of their care is important As on the pediatric side, it is recommended to have a mechanism to track patients who have been transferred to adult care [13]; it should continue throughout the high-risk period of emotional development, until the mid-20s Attention to changes in financial or social circumstances and psychological well-being is also important A navigator or coordinator can play an important role in all of these spheres and ideally continues to work with that patient after transfer to adult care Education and Training for Healthcare Professionals There are educational gaps regarding transition challenges, barriers, and best practices in both pediatric and adult healthcare, and this pertains to physicians, nurses, and allied health professionals It is essential for adult clinicians to learn about pediatric-onset diseases, as well as adolescent and young adult development Pediatricians need to understand the adult model of care and the current resource limitations in the adult system Emerging adults comprise a very small number of adult patients, in a system overburdened 805 with an ever-expanding population of elderly patient with multiple comorbidities Some specialty societies have developed healthcare transition training modules for residents, but more is needed, both during training and as part of continuing professional development In nephrology, there should be bidirectional training opportunities for both adult and pediatric residents in pediatric, adolescent, and young adult nephrology Pediatric nephrologists can also assist the education process by developing condition fact sheets for pediatric-onset kidney diseases, as mentioned in section “Open Bidirectional Communication Between the Pediatric and Adult Teams” above Financial Considerations There are only a few published studies that have addressed the costs of transition An evaluation of the financial impact requires assessment at several levels – cost to the individual clinic program, to the hospital, to the overall healthcare system, to the national economy, and to the individual patient’s health The Triple Aim, elaborated by the Institute for Health Improvement (IHI), is a framework to optimize health system performance in three dimensions: improvement of the individual experience of care (including quality and satisfaction), improvement of the health of populations, and reduction of the per capita costs associated with healthcare [72] A recent systematic review used the Triple Aim Framework to evaluate transition interventions and found that better adherence (population health) was the most frequently reported benefit, with improvements also seen in the experience of care and health service use [73] Effective transition interventions included disease-specific education, generic self-skills management, inclusion of a designated transition coordinator, explicit communication between pediatric and adult providers, a separate young adult clinic, a joint pediatric adult clinic, out of hours support, and enhanced follow-up Individual transition programs that looked at the financial implications of transition interventions (costs of care) demonstrated either cost savings or cost neutrality, as well as improved L E Bell and D Bethe 806 clinical outcomes [74–77] This is an area for further research The quality of transition also has an impact on the long-term health of adolescents and young adults with chronic conditions and fiscal issues Since their health status has an effect on their ability to work and pay taxes, or become dependent on public social security agencies, the positive impact of effective transition of adolescents and young adults on the national economy needs to be included in cost evaluation Reimbursement of physicians for work related to transition of care also needs to be taken into account In the USA, there are billing options that permit reimbursement for the extra time involved in the coordination of care of complex patients, including some specific aspects pertaining to transition of care [9, 78] A roundtable report from transition experts makes explicit recommendations regarding payment for transition- specific activities, which are useful for the advocacy of policy change [79] Healthcare providers in other countries can evaluate their available reimbursement possibilities using these recommendations as a guide need to further define outcome measures and ensure that they include the patients’ perspectives High-quality research is required to develop and assess interventions and inform future evidence-based practices Public Policy Appropriate transition to adult care is central to the health and well-being of adolescents and young adults with chronic health conditions and/ or social complexity and needs to be integrated into social and healthcare policies This includes recognition that the transition process continues after moving to adult care and that continuing support is needed for several years post-transfer (at least until the age of 25 years) [81] Adolescents and young adults with chronic health conditions may also need support in the social system, e.g., those with educational or vocational challenges, mental health issues, and minimal family support or who are aging out of foster care Youth with chronic kidney disease are particularly vulnerable Determined advocacy has led to recognition Quality Improvement and Research of the complex and ongoing needs of vulnerable young adults by the National Academies of The Got Transition “Six Core Elements of Health Science in the USA and by the National Health Care Transition” provides adaptable templates Service (NHS) in Great Britain [12, 35, 82] for assessment of transition quality improvement Although some progress has occurred, there is initiatives at the individual clinic and institutional still much to achieve, in particular ongoing advolevels [71] These facilitate progressive process cacy for policy change to improve transition to improvement using a “Plan, Do, Study, Assess” adult care and to take into account the special (PDSA) approach needs of emerging adults [81] Within the healthThere has been an exponential increase in care system, examples include the provision of publications related to transition over the past appropriate reimbursement of healthcare providdecade, but evidence-based research remains ers for the extra time involved in preparing and scarce Most transition research has focused on supporting youth in transition [79], the integrathe quality of interventions for transition prepara- tion of knowledge and practice of transition to tion [80] There is also a plethora of published adult care into the required competencies of pedidescriptions of problems related to transition atric and adult healthcare training, and the incorStudies on the integration of adolescents and poration of expectations of appropriate systems young adults into adult medicine and their long- of transition to adult care into the standards of term outcomes are largely lacking There is a accreditation of healthcare institutions 41 Transition and Transfer to Adult Care for Adolescents and Young Adults with Advanced Chronic… PEDIATRIC CARE g sin rea c In Begin to develop autonomy of adolescent Preparation of child and family for transition ADULT CARE Transition clinic Young adult clinic y om ton au Adapt care to needs of emerging adult Further develop autonomy of adolescent Regular adult clinic Fully autonomous adult TRANSFER Regular pediatric clinic 807 TRANSITION PERIOD Fig 41.4 The Transition Journey (Image reproduced from Foster and Bell 2015, [63] with permission of Springer Nature) Summary Transition to adult care is a multifaceted, longitudinal process involving multiple stakeholders It begins in childhood and ends in young adulthood and requires communication and collaboration among all the participants Figure 41.4 summarizes the transition journey Adolescents and young adults with chronic kidney disease are especially vulnerable because their lives depend on their adherence to treatment Excellent general guidelines and tools exist to help improve the process, and implementation is facilitated by institutional resources and support Advocacy, health, and social policy change and high-quality research are essential to further improve systems and outcomes References 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(6 Pt 2):1304–6 Tong A, Wong G, Hodson E, Walker RG, Tjaden L, Craig JC. Adolescent views on transition in diabetes and nephrology Eur J Pediatr 2013;172(3):293–304 Gray WN, Schaefer MR, Resmini-Rawlinson A, Wagoner ST. Barriers to transition from pediatric to adult care: a systematic review J Pediatr Psychol 2018;43(5):488–502 van Staa A, Sattoe JNT. Young Adults’ experiences and satisfaction with the transfer of care J Adolesc Health 2014;55(6):796–803 Okumura MJ, Kerr EA, Cabana MD, Davis MM, Demonner S, Heisler M. Physician views on barriers 808 to primary care for young adults with childhood-onset chronic disease Pediatrics 2010;125(4):e748–54 van Staa AL, Jedeloo S, van Meeteren J, Latour JM. Crossing the transition chasm: experiences and recommendations for improving transitional care of young adults, parents and providers Child Care Health Dev 2011;37(6):821–32 Canadian Association of Pediatric Health Centres (CAPHC), National Transitions Community of Practice A guideline for transition from Paediatric to Adult Health Care for Youth with Special Health Care Needs: a national approach 2016; Available at https:// ken.caphc.org/xwiki/bin/view/Transitioning+from+P aediatric+to+Adult+Care/A+Guideline+for+Transit ion+from+Paediatric+to+Adult+Care Accessed Mar 2, 2020 Cooley WC, Sagerman PJ. 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(1):182–200 White PH, Cooley WC. Transitions Clinical Report Authoring Group, American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians.Supporting the health care transition from adolescence to adulthood in the medical home Pediatrics 2018;142(5):e20182587 10 Watson AR, Harden PN, Ferris M, Kerr PG, Mahan JD, Fouad RM. Transition from pediatric to adult renal services a consensus statement by the International Society of Nephrology (ISN) and the international pediatric nephrology association (IPNA) Pediatr Nephrol 2011;26:1753–7 11 Bell LE, Bartosh SM, Davis CL, Dobbels F, Al-Uzri A, Lotstein D, et al Adolescent transition to adult care in solid organ transplantation: a consensus conference report Am J Transplant 2008;8(11):2230–42 12 National Institute for Health and Clinical Excellence (NICE) Transition from children’s to adults’ services for young people using health or social care services (NICE guideline 43) 2017; Available at https://www nice.org.uk/guidance/ng43/resources Accessed Mar 2, 2020 13 Got Transition 2014–2020; Available at http://www gottransition.org/resources/index.cfm Accessed Mar 2, 2020 14 Ali-Faisal SF, Colella TJ, Medina-Jaudes N, Benz Scott L. The effectiveness of patient navigation to improve healthcare utilization outcomes: a meta- analysis of randomized controlled trials Patient Educ Couns 2017;100(3):436–48 15 Allemang B, Allan K, Johnson C, Cheong M, Cheung P, Odame I, et al Impact of a transition program with navigator on loss to follow-up, medication adherence, and appointment attendance in hemoglobinopathies Pediatr Blood Cancer 2019;66(8):e27781 16 Annunziato RA, Baisley MC, Arrato N, Barton C, Henderling F, Arnon R, et al Strangers headed to a strange land? A pilot study of using a transition coor- L E Bell and D Bethe dinator to improve transfer from pediatric to adult services J Pediatr 2013;163(6):1628–33 17 Freeman HP. The history, principles, and future of patient navigation: commentary Semin Oncol Nurs 2013;29(2):72–5 18 Samuel S, Dimitropoulos G, Schraeder K, Klarenbach S, Nettel-Aguirre A, Guilcher G, et al Pragmatic trial evaluating the effectiveness of a patient navigator to decrease emergency room utilisation in transition age youth with chronic conditions: the Transition Navigator Trial protocol BMJ Open 2019;9(12):e034309 19 Van Walleghem N, MacDonald CA, Dean HJ. Evaluation of a systems navigator model for transition from pediatric to adult care for young adults with type diabetes Diabetes Care 2008;31(8):1529–30 20 Jolly SE, Navaneethan SD, Schold JD, Arrigain S, Konig V, Burrucker YK, et al Development of a chronic kidney disease patient navigator program BMC Nephrol 2015;16:69 21 van Zwieten A, Caldwell P, Howard K, Tong A, Craig JC, Alexander S, et al NAV-KIDS(2) trial: protocol for a multi-centre, staggered randomised controlled trial of a patient navigator intervention in children with chronic kidney disease BMC Nephrol 2019;20(1):134 22 Kubota W, Honda M, Okada H, Hattori M, Iwano M, Akioka Y, et al A consensus statement on health-care transition of patients with childhood-onset chronic kidney diseases: providing adequate medical care in adolescence and young adulthood Clin Exp Nephrol 2018;22(4):743–51 23 Cramm JM, Strating MMH, Roebroeck ME, Nieboer AP. The importance of general self-efficacy for the quality of life of adolescents with chronic conditions Soc Indic Res 2013;113(1):551–61 24 Greenbaum LA, Warady BA, Furth SL. Current advances in chronic kidney disease in children: growth, cardiovascular, and neurocognitive risk factors Semin Nephrol 2009;29(4):425–34 25 Gerson AC, Butler R, Moxey-Mims M, Wentz A, Shinnar S, Lande MB, et al Neurocognitive outcomes in children with chronic kidney disease: current findings and contemporary endeavors Ment Retard Dev Disabil Res Rev 2006;12(3):208–15 26 Clavé S, Tsimaratos M, Boucekine M, Ranchin B, Salomon R, Dunand O, et al Quality of life in adolescents with chronic kidney disease who initiate haemodialysis treatment BMC Nephrol 2019;20(1):163 27 Tjaden LA, Grootenhuis MA, Noordzij M, Groothoff JW. Health-related quality of life in patients with pediatric onset of end-stage renal disease: state of the art and recommendations for clinical practice Pediatr Nephrol 2016;31(10):1579–91 28 Splinter A, Tjaden LA, Haverman L, Adams B, Collard L, Cransberg K, et al Children on dialysis as well as renal transplanted children report severely impaired health-related quality of life Qual Life Res 2018;27(6):1445–54 41 Transition and Transfer to Adult Care for Adolescents and Young Adults with Advanced Chronic… 29 Clementi MA, Zimmerman CT. Psychosocial considerations and recommendations for care of pediatric patients on dialysis Pediatr Nephrol 2019; https:// doi.org/10.1007/s00467-019-04227-5 [Epub ahead of print] 30 Casey BJ, Jones RM, Hare TA. The adolescent brain Ann N Y Acad Sci 2008;1124:111–26 31 Olson A, Scherer DG, Cohen AL. Decision-making skills of emerging adults aging out of foster care Child Youth Serv Rev 2017;82:81–6 32 Woodgate RL, Morakinyo O, Martin KM. Interventions for youth aging out of care: a scoping review Child Youth Serv Rev 2017;82:280–300 33 Liabo K, McKenna C, Ingold A, Roberts H. Leaving foster or residential care: a participatory study of care leavers' experiences of health and social care transitions Child Care Health Dev 2017;43(2):182–91 34 Collins JL. Integrative review: delivery of healthcare services to adolescents and young adults during and after Foster Care J Pediatr Nurs 2016;31(6):653–66 35 Institute of Medicine; National Research Council of the National Academies Bonnie RJ, Stroud C, Breiner H, editors Investing in the Health and Well-Being of Young Adults Washington, DC: The National Academies Press; 2015 36 Bethe D, Reid C. History and Current State of Psychosocial Care in European Paediatric Nephrology Paper presented at the 50th Anniversary meeting of the European Society for Paediatric Nephrology, 2017; Glasgow, Scotland Available at http://www.ewopa-renalchild.com/presentations.html Accessed March 3, 2020 37 Fine RN, Becker Y, De Geest S, Eisen H, Ettenger R, Evans R, et al Nonadherence consensus conference summary report Am J Transplant 2009;9(1):35–41 38 Steinbeck K, Towns S, Bennett D. Adolescent and young adult medicine is a special and specific area of medical practice J Paediatr Child Health 2014;50(6):427–31 39 Colver A, Longwell S. New understanding of adolescent brain development: relevance to transitional healthcare for young people with long term conditions Arch Dis Child 2013;98(11):902–7 40 Foster BJ. Heightened graft failure risk during emerging adulthood and transition to adult care Pediatr Nephrol 2015;30:567–76 41 Tong A, Lowe A, Sainsbury P, Craig JC. Experiences of parents who have children with chronic kidney disease: a systematic review of qualitative studies Pediatrics 2008;121(2):349–60 42 Wightman A, Zimmerman CT, Neul S, Lepere K, Cedars K, Opel D. Caregiver experience in pediatric dialysis Pediatrics 2019;143(2):e20182102 43 Tsai TC, Liu SI, Tsai JD, Chou LH. Psychosocial effects on caregivers for children on chronic peritoneal dialysis Kidney Int 2006;70(11):1983–7 44 Medway M, Tong A, Craig JC, Kim S, Mackie F, McTaggart S, et al Parental perspectives on the financial impact of caring for a child with CKD. Am J Kidney Dis 2015;65(3):384–93 809 45 Kieckhefer GM, Trahms CM. Supporting development of children with chronic conditions: from compliance toward shared management Pediatr Nurs 2000;26(4):354–63 46 Christin A, Akre C, Berchtold A, Suris JC. Parent- adolescent relationship in youths with a chronic condition Child Care Health Dev 2016;42(1):36–41 47 Francis A, Johnson DW, Craig JC, Wong G. Moving on: transitioning young people with chronic kidney disease to adult care Pediatr Nephrol 2018;33(6):973–83 48 Suris JC, Larbre JP, Hofer M, Hauschild M, Barrense- Dias Y, Berchtold A, Akre C. Transition from paediatric to adult care: what makes it easier for parents? Child Care Health Dev 2017;43(1):152–5 49 Got Transition: Validated Transition Tools Available at https://www.gottransition.org/researchpolicy/ index.cfm Accessed Mar 2, 2020 50 Bell LE, MacDonald D. Montreal Children’s Hospital transition preparation checklists for adolescents and parents of adolescents 2013.; available at https:// www.thechildren.com/patients-families/information- parents/transitioning-adult-care-starting-early-and- finishing-strong Accessed Mar 2, 2020 51 Nagra A, McGinnity PM, Davis N, Salmon AP. Implementing transition: ready steady go Arch Dis Childhood E 2015;100(6):313–20 52 Ready Steady Go and Hello to Adult Services 2014; available at https://www.uhs.nhs.uk/OurServices/ Childhealth/TransitiontoadultcareReadySteadyGo/ Transitiontoadultcare.aspx Accessed Mar 2, 2020 53 American Society of Transplantation Pediatric Community of Practice Pediatric Transition Portal 2015; available at https://www.myast.org/education/ specialty-resources/peds-transition Accessed January 28, 2020 54 Got Transition -Six Core Elements of Health Care Transition 2.0 Sample Individual Transition Flow Sheet 2014; available at https://www.gottransition org/resourceGet.cfm?id=222 Accessed Mar 3, 2020 55 Got Transition -Six Core Elements of Health Care Transition 2.0 Sample Transition Registry available at https://www.gottransition.org/resourceGet cfm?id=223 Accessed Mar 3, 2020 56 Prufe J, Dierks ML, Bethe D, Oldhafer M, Muther S, Thumfart J, et al Transition structures and timing of transfer from paediatric to adult-based care after kidney transplantation in Germany: a qualitative study BMJ Open 2017;7(6):e015593 57 Kreuzer M, Prufe J, Tonshoff B, Pape L. Survey on management of transition and transfer from pediatric- to adult-based care in pediatric kidney transplant recipients in Europe Transplant Direct 2018;4(7):e361 58 Kreuzer M, Drube J, Prufe J, Schaefer F, Pape L. Current management of transition of young people affected by rare renal conditions in the ERKNet Eur J Hum Genet 2019;27(12):1783–90 59 Rieger S, Bethe D, Bagorda A, Treiber D, Beimler J, Sommerer C, et al A need-adapted transition program ... services There is a need to facilitate continuity of care for all of the patient’s healthcare issues This is particularly important because of the known risks of losses to follow-up in many different... transition challenges, barriers, and best practices in both pediatric and adult healthcare, and this pertains to physicians, nurses, and allied health professionals It is essential for adult clinicians... savings or cost neutrality, as well as improved L E Bell and D Bethe 806 clinical outcomes [74–77] This is an area for further research The quality of transition also has an impact on the long-term