A consensus statement on health-care transition of patients with childhood-onset chronic kidney diseases: providing adequate medical care in adolescence and young adulthood

A consensus statement on health-care transition of patients with childhood-onset chronic kidney... Clinical and Experimental Nephrology https://doi.org/10.1007/s10157-018-1589-8 GUIDELINE A consensus statement on health-care transition of patients with childhood-onset chronic kidney diseases: providing adequate medical care in adolescence and young adulthood 1 1 2 3 4 5 Wataru Kubota  · Masataka Honda  · Hirokazu Okada  · Motoshi Hattori  · Masayuki Iwano  · Yuko Akioka  · 6 7 8 9 10 11 Akira Ashida  · Yukihiko Kawasaki  · Hideyasu Kiyomoto  · Mayumi Sako  · Yoshio Terada  · Daishi Hirano  · 12 13 14 15 16 17 Mikiya Fujieda  · Shouichi Fujimoto  · Takao Masaki  · Shuichi Ito  · Osamu Uemura  · Yoshimitsu Gotoh  · 18 19 20 21 22 Yasuhiro Komatsu  · Shinichi Nishi  · Mitsue Maru  · Ichiei Narita  · Shoichi Maruyama Received: 24 April 2018 / Accepted: 11 May 2018 © The Author(s) 2018 Preface requiring the continuity of care from childhood to adoles- cence and young adulthood. In the field of pediatric renal Introduction diseases, many diseases, including but not limited to child- hood-onset nephrotic syndrome, chronic glomerulonephritis The present statement has been developed primarily for such as IgA nephropathy, CAKUT, CKD due to various dis- members of the Japanese Society for Nephrology (JSN) and eases, and ESKD, persist after patients become adults. More the Japanese Society for Pediatric Nephrology (JSPN). Its than half of the children with frequently relapsing nephrotic objectives are to make it clear to all members that patients syndrome experience relapse even in adulthood and use with CKD being transferred from pediatric to adult care immunosuppressants [1]. The median age at which CAKUT require support and that transition programs are necessary progresses to ESKD was reported to be around 35 years [2]. for the transfer, to ensure that continued high-quality medi- However, there are many cases in which it is not easy cal care is provided for these patients. The statement applies for pediatric patients who had undergone long-term man- to patients who may develop independent living skills and agement at pediatric departments to be transferred to adult does not apply to patients with severe intellectual disabil- health-care services. Even if they are transferred to adult ity or other relevant patients who require separate support. health-care units, some of them fail to adapt well to the adult Throughout the text of the statement, the term “transfer from services and return to pediatric departments, and what is pediatric to adult care” includes the event of hospital trans- worse, some of the patients drop out, which aggravates fer, although it should be noted that, strictly speaking, the the underlying disease. In pediatric departments in which transfers of treatment and hospital are different aspects of patients are closely connected to their families, the approach transition. to patients is based on consideration of the children’s devel- opment, causing parents be overprotective and/or exert too Background much control over their children, which may prevent pedi- atric patients from developing independent living skills. Along with advancement of medicine, pediatric patients On the other hand, departments providing adult health-care with chronic diseases have experienced better prognosis, services put importance on patients’ autonomy and issues related to pregnancy, childbirth, and occupation, but tend to attach less weight to involvement in growth and devel- The Japanese Society for Nephrology (JSN) and the Japanese opment or relations with patients’ families. A nationwide Society for Pediatric Nephrology (JSPN) established the survey conducted by Hattori et al. with partial support in the collaborative committee, and published the consensus statement in Nihon Jinzon Gakkai Shi. 2015;57(5):789–803. This manuscript is form of an MHLW Research Grant and surveyed from the the English version of that statement. JSN, JSPN, and the Japanese Society of Pediatric Urology (JSPU) in 2014 demonstrated that only 31% of patients aged * Masataka Honda 20 years or older with childhood-onset chronic kidney dis- mhond@fol.hi-ho.ne.jp eases who had been managed at pediatric departments were Extended author information available on the last page of the article Vol.:(0123456789) 1 3 Clinical and Experimental Nephrology transferred to adult renal services over a period of 5 years adolescence and young adulthood, a time of life character- [3]. The reasons for non-transfer included refusal of patients ized by psychological instability of variable degree. In this or their families to transfer (43%) and lack of concern about period, the continuity of high-quality medical care must not transfer or inability to decide on transfer (33%), which may be disrupted. For the purposes of filling gaps between the serve to indicate a possibility that families’ dependence on medical care provided in childhood and adolescence/young pediatricians or pediatricians themselves may hinder transfer adulthood and providing medical care appropriate for adult- from pediatric to adult renal services. hood, it is necessary to develop transition programs and start The most challenging issue is how to help CKD patients the transition process early in accordance with such transi- in adolescence and young adulthood who are able to live tion programs, which requires cooperation among patients, independently display their original capacities to the full, their families, health-care providers, administrative person- so as to live a life with maximum QOL secured. In their nel, government, and medical societies/associations to facili- published Guidebook of the Transition Care for Adolescent tate adequate transition. Nurses, Ishizaki et al. [4] state the necessity of transfer to adult health-care services as below. Among the problems Definition of transition faced by pediatricians is the following: diseases peculiar to adults that patients face after they reach adulthood or preg- In 1993, a position paper by the Society for Adolescent Med- nancy and childbirth are outside the expertise of pediatri- icine (SAM) defined that “Transition is a multifaceted, active cians, and if patients need to be hospitalized, they cannot process that attends to the medical, psychosocial, and edu- be admitted to pediatric units. On the other hand, the cor- cational/vocational needs of adolescents as they move from responding problems faced by adult care physicians are as the child-focused to the adult-focused health-care system” follows: childhood-onset diseases are outside their expertise [6]. The transfer from pediatric to adult health-care services and they have difficulties in handling these diseases, and is an “event” in the transition process. in addition, CKD patients in adolescence and young adult- In 2011, the International Society of Nephrology and hood have less social experience than adults of the same International Pediatric Nephrology Association (ISN/IPNA) age, and are likely to become immature adults and face dif- announced a consensus statement for pediatric patients with ficulties in adapting themselves to society, and therefore, CKD [7]. In the statement, it is indicated that transfer from they are prone to rely on physicians and cannot get used pediatric to adult nephrology services should occur only to treatments at adult health-care services despite the fact after preparation and assessment have been performed and that they are regarded as adults in terms of age and sys- that the transfer should take place when patients have com- tem. Ishizaki et al. state that, for the purpose of minimiz- pleted school education, have attained sufficient social and ing these problems, pediatricians need to train patients in psychological development, and are stable in terms of symp- age-appropriate disease knowledge, personal capacity, and toms and psychological status. In the statement, it is recom- communication required for participation in society, whereas mended to create an organization consisting of physicians adult care physicians need to deepen their understanding (transition champions), nurses, psychological specialists, about medical care for childhood-onset chronic diseases that social workers, and other relevant persons who have all been should be administered after children reach adulthood. Hat- well trained in transition programs to support the transition tori et al. [3] reported that approximately 20% of patients and to implement transition programs through collaboration aged 20 years or older were unemployed, and pointed out with adult health-care units. that the unemployed patients had financial difficulties. An In Japan, in 2014, the Japan Pediatric Society announced important issue is to provide them with education that suits a “Statement of health-care transition of patients with child- their abilities, so that they can be employed and become hood-onset diseases” [8]. This statement proposes that in financially independent. transition, health-care professionals involved in the two areas A consensus statement issued by the American Academy of pediatric and adult medical care should achieve seam- of Pediatrics, the American Academy of Family Physicians, less provision of medical care during transition from pedi- and the American College of Physicians–American Soci- atric to adult care services as disease conditions change and ety of Internal Medicine (AAP/AAFP/ACP-ASIM) in 2002 patients themselves mature. It also describes that, depending set the goals as follows: to ensure that “by the year 2010”, on the patient’s maturity or individual disease, an adequate all physicians who provide primary or subspecialty care to medical care system (e.g., the patient is managed and/or young people with special health-care needs (1) understand treated jointly by the pediatric and the adult units) should the rationale for transition from child-oriented to adult- be selected. oriented health care; (2) have the knowledge and skills to It is stated that when formulating transitional programs, facilitate that process; and (3) know whether, how, and when action plans for each of the matters listed below will be transfer of care is indicated [5]. Everyone passes through developed, implemented, and evaluated [9]. 1 3 Clinical and Experimental Nephrology The patients themselves can describe their own health (4) Health-care providers and patients’ families should status. not be overprotective and/or exert too much control The patients can ask questions during each visit and over their children only, because they worry about dis- understand what medication is needed. ease aggravation, so that before transfer to adult care The patients can discuss sexual capabilities, including services, patients can become able to adequately live safe sex and the impact of the condition and/or medi- their lives on their own and receive medical care. cations, for example, whether the condition will affect (5) Health-care providers should take time to discuss with fertility. patients the changes that are expected to occur in the The patients can talk to friends and supportive relation- future (e.g., explanation on adult medical care) and ships about any concerns and identify any need for help. the patients’ future, before transfer to adult care, so The patients can discuss employment options and plan to as to share information. work—what kind of work do they want to do? Are there (6) Health-care providers should provide, as appropriate, any restrictions, for example, on the number of hours patients with information about health insurance and they can work? medical expenses. The patients can discuss any restrictions on mobility and (7) Support to help patients develop independent living their interests caused by their condition. skills should include support to help them receive ade- quate education and to choose their future occupation. (8) Patients will need to understand the details of the Content treatment they will receive and independently man- age their health by themselves. Patients and health- Transfer from pediatric to adult care care providers should have good understanding about the status of transition readiness through the use of (1) Ensure that the transfer from pediatric to adult care transition readiness assessment. does not cause disruption to advanced, high-quality (9) Pediatricians should have each patient prepare a medi- medical care. cal summary to facilitate his/her self-management, (2) Transfer patients from pediatric to adult care after they and utilize the transition summary at the time of trans- have achieved sufficient psychological and social devel- fer to adult medical care services. opment as well as relevant education. Avoid the transfer (10) Adult care physicians should endeavor to understand as far as possible if the patient’s symptom(s) or psycho- the special characteristics of pediatric CKD patients logical status is unstable. and to provide adequate medical care for CKD (3) Transfer from pediatric to adult care should occur only patients in adolescence and young adulthood. after preparation and assessment have been made. It is important to implement transition programs. Necessary support by medical societies/associations Transition programs (1) Regarding continued provision of medical care from (1) Transition programs should be started as early as pos- pediatric to adult health-care services, identify finan - sible. cial problems and request the administration to provide (2) Physicians who are familiar with transition programs adequate support. should be made available on both sides, for pediatric (2) Conduct surveys on patients in transition process and and adult care. A team consisting of nurses, psycho- discuss problems. logical specialists, social workers, and other relevant (3) Develop educational programs on transition medicine persons should be organized. Measures to support the for health-care providers. transition, e.g., establishing a transition clinic, should (4) Investigate qualification requirements for transition be formulated. coordinators and human resources for transition sup- (3) Patients, their families, and health-care providers port, for the purpose of making programs successful, should always consider, from the start of a transition and request administrative personnel to provide ade- program, that a patient should be independent in the quate support regarding these issues. future. The patient him/herself should be at the center of the program, independent from his/her family, to participate in decision making. 1 3 Clinical and Experimental Nephrology start the transition at age of 12–14. Educate all staff Statement about the practice’s approach to transition. 2. Transition tracking and monitoring: establish criteria for Transfer from pediatric to adult care identifying transitioning patients, and enter their data into a registry. 3. Transition readiness: use a transition readiness assess- (1) Ensure that the transfer from pediatric to adult care ment tool (checklist) beginning at age of 14. Develop does not cause disruption to advanced and high-quality goals on self-care with the patient and his/her family. medical care. 4. Transition planning: develop and regularly update the plan of care, including readiness assessment findings, The consensus policy statement issued by AAP/AAFP/ goals and prioritized actions, medical (transition) sum- ACP-ASIM in 2002 indicated that transition in medical care mary, and emergency care plan. Plan with youth and to adolescence and young adulthood is special medicine per- parent/caregiver for optimal timing of transfer. If both formed during a time of life in which children reach adult- primary and subspecialty care are involved, discuss opti- hood, and that during this transition period, advanced and mal timing for each. high-quality medical care must not be disrupted [5]. 5. Transfer of care: transfer the patient to adult care when his/her condition is stable. Upon transfer, prepare docu- (2) Transfer patients from pediatric to adult care after ments necessary for the transition (readiness assessment, they have achieved sufficient psychological and social medical summary, emergency care plan, etc.). On the development as well as relevant education. Avoid the side of adult care services, complete preparations by transfer as far as possible if the patient’s symptom(s) team members, and at the time of first medical exami- or psychological status is unstable. nation, update the medical summary and the emergency (3) Transfer from pediatric to adult care should occur only care plan. after preparation and assessment have been made. It is 6. Transfer completion: contact patient and parent/car- important to develop transition programs. egiver 3–6 months after last pediatric visit to confirm transfer of responsibilities to adult practice and elicit In the consensus statement announced by ISN/IPNA, it feedback on experience with transition process. Com- is stated that transfer from pediatric to adult nephrology ser- municate with adult practice confirming completion of vices should occur only after preparation and assessment have transfer and offer consultation assistance, as needed. been performed and that the transfer should take place when Build ongoing and collaborative partnerships with adult patients have completed school education, have attained suf- care providers. ficient social and psychological development, and are stable in terms of symptoms and psychological status [7]. The social Transition programs development refers to a process in which individuals are estab- lishing adequate relations with their families and those outside the families, and are becoming adapted to living in groups. (1) Transition programs should be started as early as pos- In adolescence and young adulthood, some individuals may sible. sometimes be isolated, because their social engagement is not going well; this requires special attention. The consensus statement issued by AAP/AAFP/ACP- Got transition [an organization established by the US ASIM in 2002 provided proposals to prepare a transition Maternal and Child Health Bureau (MCHB) and the plan by age of 14 [5]. The consensus statement announced “National Alliance to Advance Adolescent Health”, an by ISN/IPNA in 2011 made proposals to introduce to the NPO] in collaboration with AAP/AAFP/ACP-ASIM has concept of transition at age of 12–14 and to proceed with developed the six core elements [10]. It was reported that in transition gradually in accordance with the stage of develop- accordance with the six core elements, systematic transition ment and intellectual abilities [7]. The six core elements pro- of health-care has been possible on both sides, in pediatrics pose that a document be developed describing the approach and internal medicine [11]. The six core elements consist of to transition (transition policy) that it be shared with the the following: patient and his/her family, and that the transition be started at age of 12–14 [10]. It is necessary to start a transition pro- 1. Transition policy: develop a document describing the gram by age of 15 at latest. approach of the practice to transition (transition policy), share the policy with the patient and his/her family, and (2) Physicians who are familiar with transition programs should be made available on both sides, for pediatric 1 3 Clinical and Experimental Nephrology and adult care. A team consisting of nurses, psycho- (4) Health-care providers and patients’ families should not logical specialists, social workers, and other relevant be overprotective and/or exert too much control over persons should be organized. Measures to support the their children only because they worry about disease transition, e.g., establishment of a transitional outpa- aggravation, so that before transfer to adult care ser- tient clinic, should be formulated. vices, patients can become able to adequately live their lives on their own and receive medical care. The policy statement issued by AAP/AAFP/ACP-ASIM proposed that all young people with special health-care Higashino et al. [14] pointed out that one factor disturbing needs should have an identified health-care professional who transition is excessive parental control over patients; severe attends to the unique challenges of transition and assumes rating of disease and underestimation of a child’s abilities responsibility for current health care, care coordination, also disturb transition, which may lead to a situation in and future health-care planning [5]. The consensus state- which the patient does not work, stays home, and lives his/ ment by ISN/IPNA made recommendations to identify lead her life under the protection of his/her parents. They also clinicians (transition champions) on the pediatric and adult have described that pediatricians themselves have strong care sides, and to designate transition coordinators such as mental relationships with patients and their families and nurses and social workers, so as to formulate an organization are prone to maintain the present status, and thus constitute responsible for the process from preparations for transition the maximum opposing force against transition. Honda [16] to transfer to adult care services through a transition clinic. stated that “pediatricians have to instruct parents not to be The ISN/IPNA statement also provided recommendations overprotective or over-meddling, and pediatricians them- to transfer from pediatric to adult nephrology services only selves have to prevent themselves from being overprotec- after eo ff rts to assess and prepare the adolescent/young adult tive unconsciously”. The Guidebook of the Transition Care have occurred and take place during a period without cri- for Adolescent Nurses also indicates that overprotection of ses, and to be offered the opportunity of an informal visit to children, mother–child attachment, familial malfunction, and the nominated adult service before transfer occurs [7]. The other relevant factors constitute problems in transition [4]. position paper announced by SAM in 2003 indicated that It is important for pediatric health-care providers and fami- patients and their families should have transition coordina- lies to encourage patients to voluntarily consult health-care tors who are responsible for transition programs and sup- providers about their own issues, including psychological port their transition to adult health care [12]. It is advisable, problems. whenever possible, to designate specialists (psychiatrists, psychological specialists, nurses, etc.) who are familiar with (5) Health-care providers should take time to discuss with psychological status of children suffering from diseases. patients the changes that are expected to occur in the future (e.g., explanation on adult medical care) and the (3) Patients, their families, and health-care providers patients’ future, before transfer to adult care, so as to should always consider, from the start of a transition share information. program, that a patient should be independent in the future. The patient him/herself should be at the center Watson et al. [15] described some of the differences of the program, independent from his/her family, to between pediatric and adult units in their review in 2005. participate in decision making. Reiss et al. [13] also stated in their review that discussion should be held with patients and their family about their Reiss et al. [13] describe in their article entitled “Health- future and that patients should be given information about Care Transition: Destination Unknown” that early develop- adult care services and insurance, and be made aware that ment of a transition plan is a key to success of transition. they themselves will live their lives in the adult medical They also recommend, for the purpose of facilitating transi- world. Some patients may harbor concerns about education tion, that discussion with patients should be held in early and employment, since they had needed to receive treat- stages regarding their future, and that patients should be ment for their disease and will not be able to achieve the informed of changes that will occur in the future as early academic career they should have obtained. Health-care as possible. They argue that, in transition programs, it is providers need to discuss with patients’ employment types important that patients themselves can describe their own that are commensurate with their abilities and aptitudes. health status and that patients can voluntarily visit hospitals to receive medical examination and perform self-manage- (6) Health-care providers should provide, as appropriate, ment when taking drugs. A program helping the patient to patients with information about health insurance and understand his/her disease in early stages is necessary. medical expenses. 1 3 Clinical and Experimental Nephrology In the consensus statement by ISN/IPNA, it is pro- cooperation with the patient and his/her family, and in addi- posed to resolve financial problems as preparation for tion, to evaluate the readiness assessment at regular intervals transition [7]. Reiss et al. [13] pointed out in their review to confirm achievement of objectives [10]. In the report enti- that problems with the scope of health insurance cover- tled “Guidebook of Health-Care Transition of Adult Patients age constitute structural difficulties disturbing transition. with Childhood-Onset Chronic Diseases for Pediatricians”, It is important to identify problems with health insurance it is recommended to use readiness assessment tools for the and medical expenses in the preparatory phase for transi- purpose of determining to what extent patients manage their tion and to provide patients with relevant information, to health by themselves [9]. endeavor to identify solutions. (9) Pediatricians should have each patient prepare a medi- (7) Support to help patients develop independent living cal summary to facilitate his/her self-management, and skills should include support to help them receive ade- utilize the transition summary at the time of transfer to quate education and to choose their future occupation. adult medical care services. The support to help patients develop independent In the policy statement issued by AAP/AAFP/ACP- behaviors should include support to help them receive ASIM, it is recommended to prepare and maintain an up- education appropriate for their abilities and to choose to-date medical summary that is portable and accessible, their future occupation accordingly. The report entitled which is critical for successful health-care transition [5]. “Guidebook of Health-Care Transition of Adult Patients In the consensus statement by ISN/IPNA also, it is recom- with Childhood-Onset Chronic Diseases for Pediatricians” mended that as preparation for transition, patients have a demonstrated that the rates of advancement to universities comprehensive written and verbal summary of all the mul- of the patients with chronic disease were less than 40% and tidisciplinary aspects of the young person’s care; this should the presence of disease was caused problems at the time include medical, nursing, dietary, social, and educational of employment in 56.3% of patients, which highlights the information [7]. Patients are instructed to have a transition importance of providing opportunities to receive education summary, as a “health handbook”, so that they may indi- and expand employment possibilities [9]. One of the six vidually utilize it for their self-management. In the six core core elements set as the objectives in transition support elements, it is recommended to prepare a medical summary programs is an employment type suitable for the patient’s and other relevant information at the time of transfer to adult own physical capacities (educational and occupational care and to update the medical summary at the first visit at planning) [9]. Families and health-care providers should the adult health-care service facility [10]. support patients while being careful not to disturb their independence. (10) Adult care physicians should endeavor to understand the special characteristics of pediatric CKD patients (8) Patients will need to understand the details of the treat- and to provide adequate medical care for CKD ment they will receive and independently manage their patients in adolescence and young adulthood. health by themselves. Patients and health-care provid- ers should have good understanding about the status of Higashino et  al. [14] pointed out the following facts transition readiness through the use of transition readi- as transition-disturbing factors on the side of health-care ness assessment tools. providers: adult care physicians lack understanding about pediatric diseases and about proper handling of adolescent In the consensus statement by ISN/IPNA, it is recom- and young adult patients. Ishizaki et al. [19] conducted a mended to use tools including, but not limited to, a transition questionnaire survey and reported that a factor disturbing medical passport, a self-administered transition, readiness transition is the absence of specialists in adult health-care survey, the TRxANSITION Scale (TRxANSITION) and units. What is important in transition is to understand the other relevant tools to aid in acquisition of disease self- characteristics of patients with childhood-onset CKD due to management skills [7]. Two systematic reviews published CAKUT, multiple anomalies, or other relevant causes that in 2014 demonstrated the validity and reliability of the Tran- are rarely observed in adults. For the purpose of promot- sition Readiness Assessment Questionnaire (TRAQ) and ing this understanding, our research team has developed the TRxANSITION Scale (TRxANSITION) as comprehensive above guidelines on medical care for CKD in adolescent and tools, which have been described in published reports to young adult patients. aid in transition readiness assessment [17, 18]. In the six Those concerned on the side of adult health-care services core elements also, it is recommended to use readiness will understand their patients and organize a transition team assessment and develop goals on self-care through joint consisting of psychological specialists, social workers, and 1 3 Clinical and Experimental Nephrology other relevant personnel to work in collaboration with pedi- Hattori et al. [3] pointed out financial problems in ref- atric units. It is recommended to re-check transition readi- erence to their finding that approximately 20% of patients ness assessments, review entries stated in medical sum- aged 20 years or older were unemployed. They also found maries, modify the emergency care plans, and take other that approximately 30% of patients visited adult care units, relevant actions. Even after patients have received care at without authorized referral by pediatric care units, because adult health-care units, they need to concurrently receive of aggravation of symptoms or recurrence, or for urinary medical care at pediatric units and transition clinics for a screening and other relevant reasons. What is required is to certain period of time (for at least 6 months after transfer to identify the actual status on transition patients, to discuss adult care services). problems with transition, and to recognize the importance of transition programs. Necessary support by medical societies/associations (3) Provide educational programs on transition for health- care providers. (1) Regarding continued provision of medical care from Hattori et al. [3] reported that only three pediatric institu- pediatric to adult health-care services, identify financial tions (3%) of the responding 101 and one adult institution problems and request the administrative personnel to (0.9%) of the responding 107 had transition coordinators. In provide adequate support. the consensus statement by ISN/IPNA, it is recommended to have physicians who lead transition programs (transition The statement by SAM in 2003, the consensus statement champions) available at transition clinics both in pediatric by AAP/AAFP/ACP-ASIM, and the consensus statement by and adult care services, and to formulate an organization ISN/IPNA highlight that the continuity of the health insur- consisting of transition coordinators, such as nurses and ance system from pediatric to adult care services should be social workers, and psychological teams, so as to provide ensured [5, 7, 11]. In not a small number of cases, finan- support from the preparation for transition to transfer to cial problems cause nonadherence. It is important that adult care services [7]. patients themselves understand the scope of health insur- McManus et al. [21] provided education regarding the ance coverage, and in addition, medical expenses covered six core elements to health-care providers at both pediatric by the National Health Insurance for intractable diseases and adult care units, and reported that their knowledge about are ensured. The report entitled “Guidebook of Health-Care transition was enhanced after the education. They described Transition of Adult Patients with Childhood-Onset Chronic the following advantages, among others: the health-care pro- Diseases for Pediatricians” reported cases in which patients viders became able to understand patients more easily; and encountered employment-related problems (e.g., having a they began to activate communication between pediatric and disease is a disadvantage when working), medical expenses adult care units. The reality is that an increasing number of are great, and some patients are not motivated to continue pediatric CKD patients require transition, whereas only a medical care, since provision of medical benefits for speci- small number of health-care providers are engaged in tran- fied pediatric chronic diseases is discontinued at age of 20 sition medicine and they lack knowledge about transition. [9]. It is urgently necessary to expand educational programs on transition for health-care providers. (2) Conduct surveys on patients in transition process and discuss problems. (4) Investigate qualification requirements for transition coordinators and human resources for transition sup- In May 2010, Honda et al. [20] performed a question- port, for the purpose of making programs successful, naire survey among councilors of the Japanese Society for and request administrative personnel to provide ade- Pediatric Nephrology (49 medical institutions) about how quate support regarding these issues. they view transitional programs for nephrotic syndrome. Only one institution had a transition program, and more Supporting patients who feel anxious about transition in than half of the medical institutions studied conducted tran- achieving a smooth transition to adult care units requires sitions without prior discussion with adult care physicians. a multidisciplinary approach involving physicians, nurses, However, since treatment methods including steroids for psychological specialists, social workers, and other relevant nephrotic syndrome are different between adult and pediatric personnel, and takes a long time in terms of medical care. patients, many problems have occurred in conjunction with That is why the financial support of administrative agen- the transition, and these problems associated with transition cies is necessary for practical implementation of transition are not sufficiently recognized in Japan. support. A surveillance on transition performed once every 1 3 Clinical and Experimental Nephrology Open Access This article is distributed under the terms of the Crea- 4–5 years in the US, since 2001 has revealed that between tive Commons Attribution 4.0 International License (http://creat iveco the 2005–2006 surveillance and the 2009–2010 surveillance, mmons.or g/licenses/b y/4.0/), which permits unrestricted use, distribu- the number of transition programs implemented for patients tion, and reproduction in any medium, provided you give appropriate requiring transition support had not increased at all, which credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. indicated that financial incentive is necessary for promoting transition [21]. In addition, transition coordinators who play roles to facilitate relations between pediatric and adult care units as References well as between patients and hospitals are inevitable, and having transition coordinators is considered a key to success- 1. Ishikura K, Yoshikawa N, Nakazato H, Sasaki S, Nakanishi K, ful transition [11]. It is required to identify knowledge and Matsuyama T, Ito S, Hamasaki Y, Yata N, Ando T, Iijima K, technologies necessary for transition, to develop qualifica- Honda M. Morbidity in children with frequently relapsing nephro- tion requirements for acquired staff, and to foster transition sis: 10-year follow-up of a randomized controlled trial. Pediatr Nephrol. 2015;30(3):459–68. coordinators. 2. Wühl E, van Stralen KJ, Verrina E, Bjerre A, Wanner C, Heaf JG, Zurriaga O, Hoitsma A, Niaudet P, Palsson R, Ravani P, Jager KJ, Acknowledgements All authors are advisory committee members of Schaefer F. 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Watson AR, Harden P, Ferris M, Kerr PG, Mahan J, Ramzy MF. Co., Ltd., Torii Pharmaceutical Co., Ltd., Kyowa Hakko Kirin Co., Transition from pediatric to adult renal services: a consensus Ltd., Pfizer Japan Inc., Boehringer Ingelheim GmbH, Astellas Pharma statement by the International Society of Nephrology (ISN) and Inc., Otsuka Pharmaceutical Co., Ltd., MSD K.K., Shionogi & Co., the International Pediatric Nephrology Association (IPNA). Pedi- Ltd., Novartis Pharma K.K., Sumitomo Dainippon Co., Ltd., Mitsubi- atr Nephrol. 2011;26:1753–7. shi Tanabe Pharma Co., and Daiichi Sankyo Co., Ltd. Masayuki Iwano 8. Yokoya S, Ochiai R, Kobayashi N, Komamatsu H, Mashiko T, has received honoraria from Otsuka Pharmaceutical Co., Ltd., and Mizuguchi M, Minami M, Yao A. Statement of health care transi- subsidies from Takeda Pharmaceutical Co., Ltd., Chugai Pharmaceuti- tion of patients with childhood-onset chronic diseases. 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A systematic review of the psy- chometric properties of transition readiness assessment tools in Affiliations 1 1 2 3 4 5 Wataru Kubota  · Masataka Honda  · Hirokazu Okada  · Motoshi Hattori  · Masayuki Iwano  · Yuko Akioka  · 6 7 8 9 10 11 Akira Ashida  · Yukihiko Kawasaki  · Hideyasu Kiyomoto  · Mayumi Sako  · Yoshio Terada  · Daishi Hirano  · 12 13 14 15 16 17 Mikiya Fujieda  · Shouichi Fujimoto  · Takao Masaki  · Shuichi Ito  · Osamu Uemura  · Yoshimitsu Gotoh  · 18 19 20 21 22 Yasuhiro Komatsu  · Shinichi Nishi  · Mitsue Maru  · Ichiei Narita  · Shoichi Maruyama 1 12 Department of Nephrology, Tokyo Metropolitan Children’s Department of Pediatrics, Kochi Medical School, Kochi Medical Center, 2-8-29 Musashidai Fuchu, Tokyo, University, Kochi, Japan Japan 183-8561 Department of Hemovascular Medicine and Artificial Department of Nephrology, Saitama Medical University, Organs, Faculty of Medicine, University of Miyazaki, Saitama, Japan Miyazaki, Japan 3 14 Department of Pediatric Nephrology, School of Medicine, Department of Nephrology, Hiroshima University Hospital, Tokyo Women’s Medical University, Tokyo, Japan Hiroshima, Japan 4 15 Department of Nephrology, Faculty of Medical Sciences, Department of Pediatrics, Yokohama City University University of Fukui, Fukui, Japan Hospital, Yokohama, Japan 5 16 Department of Pediatrics, Saitama Medical University, Ichinomiya Medical Treatment & Habilitation Center, Saitama, Japan Ichinomiya, Japan 6 17 Department of Pediatrics, Osaka Medical College, Takatsuki, Department of Pediatric Nephrology, Japanese Red Cross Japan Nagoya Daini Hospital, Aichi, Japan 7 18 Department of Pediatrics, Fukushima Medical University Department of Healthcare Quality and Safety, Gunma School of Medicine, Fukushima, Japan University Graduate School of Medicine, Maebashi, Japan 8 19 Tohoku Medical Megabank Organization, Tohoku Division of Nephrology and Kidney Center, Kobe University University, Sendai, Japan Graduate School of Medicine, Kobe, Japan 9 20 Division of Clinical Trials, Department of Clinical Research Faculty of Nursing and Rehabilitation, Konan Women’s Promotion, Clinical Research Center, National Center University, Kobe, Japan for Child Health and Development, Setagaya-ku, Tokyo, Division of Clinical Nephrology and Rheumatology, Niigata Japan University Graduate School of Medical and Dental Sciences, Department of Endocrinology, Metabolism and Nephrology, Niigata, Japan Kochi Medical School, Kochi University, Kochi, Japan Division of Nephrology, Nagoya University Graduate School Department of Pediatrics, Jikei University School of Medicine, Nagoya, Japan of Medicine, Tokyo, Japan 1 3 http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Clinical and Experimental Nephrology Springer Journals
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Abstract

Clinical and Experimental Nephrology https://doi.org/10.1007/s10157-018-1589-8 GUIDELINE A consensus statement on health-care transition of patients with childhood-onset chronic kidney diseases: providing adequate medical care in adolescence and young adulthood 1 1 2 3 4 5 Wataru Kubota  · Masataka Honda  · Hirokazu Okada  · Motoshi Hattori  · Masayuki Iwano  · Yuko Akioka  · 6 7 8 9 10 11 Akira Ashida  · Yukihiko Kawasaki  · Hideyasu Kiyomoto  · Mayumi Sako  · Yoshio Terada  · Daishi Hirano  · 12 13 14 15 16 17 Mikiya Fujieda  · Shouichi Fujimoto  · Takao Masaki  · Shuichi Ito  · Osamu Uemura  · Yoshimitsu Gotoh  · 18 19 20 21 22 Yasuhiro Komatsu  · Shinichi Nishi  · Mitsue Maru  · Ichiei Narita  · Shoichi Maruyama Received: 24 April 2018 / Accepted: 11 May 2018 © The Author(s) 2018 Preface requiring the continuity of care from childhood to adoles- cence and young adulthood. In the field of pediatric renal Introduction diseases, many diseases, including but not limited to child- hood-onset nephrotic syndrome, chronic glomerulonephritis The present statement has been developed primarily for such as IgA nephropathy, CAKUT, CKD due to various dis- members of the Japanese Society for Nephrology (JSN) and eases, and ESKD, persist after patients become adults. More the Japanese Society for Pediatric Nephrology (JSPN). Its than half of the children with frequently relapsing nephrotic objectives are to make it clear to all members that patients syndrome experience relapse even in adulthood and use with CKD being transferred from pediatric to adult care immunosuppressants [1]. The median age at which CAKUT require support and that transition programs are necessary progresses to ESKD was reported to be around 35 years [2]. for the transfer, to ensure that continued high-quality medi- However, there are many cases in which it is not easy cal care is provided for these patients. The statement applies for pediatric patients who had undergone long-term man- to patients who may develop independent living skills and agement at pediatric departments to be transferred to adult does not apply to patients with severe intellectual disabil- health-care services. Even if they are transferred to adult ity or other relevant patients who require separate support. health-care units, some of them fail to adapt well to the adult Throughout the text of the statement, the term “transfer from services and return to pediatric departments, and what is pediatric to adult care” includes the event of hospital trans- worse, some of the patients drop out, which aggravates fer, although it should be noted that, strictly speaking, the the underlying disease. In pediatric departments in which transfers of treatment and hospital are different aspects of patients are closely connected to their families, the approach transition. to patients is based on consideration of the children’s devel- opment, causing parents be overprotective and/or exert too Background much control over their children, which may prevent pedi- atric patients from developing independent living skills. Along with advancement of medicine, pediatric patients On the other hand, departments providing adult health-care with chronic diseases have experienced better prognosis, services put importance on patients’ autonomy and issues related to pregnancy, childbirth, and occupation, but tend to attach less weight to involvement in growth and devel- The Japanese Society for Nephrology (JSN) and the Japanese opment or relations with patients’ families. A nationwide Society for Pediatric Nephrology (JSPN) established the survey conducted by Hattori et al. with partial support in the collaborative committee, and published the consensus statement in Nihon Jinzon Gakkai Shi. 2015;57(5):789–803. This manuscript is form of an MHLW Research Grant and surveyed from the the English version of that statement. JSN, JSPN, and the Japanese Society of Pediatric Urology (JSPU) in 2014 demonstrated that only 31% of patients aged * Masataka Honda 20 years or older with childhood-onset chronic kidney dis- mhond@fol.hi-ho.ne.jp eases who had been managed at pediatric departments were Extended author information available on the last page of the article Vol.:(0123456789) 1 3 Clinical and Experimental Nephrology transferred to adult renal services over a period of 5 years adolescence and young adulthood, a time of life character- [3]. The reasons for non-transfer included refusal of patients ized by psychological instability of variable degree. In this or their families to transfer (43%) and lack of concern about period, the continuity of high-quality medical care must not transfer or inability to decide on transfer (33%), which may be disrupted. For the purposes of filling gaps between the serve to indicate a possibility that families’ dependence on medical care provided in childhood and adolescence/young pediatricians or pediatricians themselves may hinder transfer adulthood and providing medical care appropriate for adult- from pediatric to adult renal services. hood, it is necessary to develop transition programs and start The most challenging issue is how to help CKD patients the transition process early in accordance with such transi- in adolescence and young adulthood who are able to live tion programs, which requires cooperation among patients, independently display their original capacities to the full, their families, health-care providers, administrative person- so as to live a life with maximum QOL secured. In their nel, government, and medical societies/associations to facili- published Guidebook of the Transition Care for Adolescent tate adequate transition. Nurses, Ishizaki et al. [4] state the necessity of transfer to adult health-care services as below. Among the problems Definition of transition faced by pediatricians is the following: diseases peculiar to adults that patients face after they reach adulthood or preg- In 1993, a position paper by the Society for Adolescent Med- nancy and childbirth are outside the expertise of pediatri- icine (SAM) defined that “Transition is a multifaceted, active cians, and if patients need to be hospitalized, they cannot process that attends to the medical, psychosocial, and edu- be admitted to pediatric units. On the other hand, the cor- cational/vocational needs of adolescents as they move from responding problems faced by adult care physicians are as the child-focused to the adult-focused health-care system” follows: childhood-onset diseases are outside their expertise [6]. The transfer from pediatric to adult health-care services and they have difficulties in handling these diseases, and is an “event” in the transition process. in addition, CKD patients in adolescence and young adult- In 2011, the International Society of Nephrology and hood have less social experience than adults of the same International Pediatric Nephrology Association (ISN/IPNA) age, and are likely to become immature adults and face dif- announced a consensus statement for pediatric patients with ficulties in adapting themselves to society, and therefore, CKD [7]. In the statement, it is indicated that transfer from they are prone to rely on physicians and cannot get used pediatric to adult nephrology services should occur only to treatments at adult health-care services despite the fact after preparation and assessment have been performed and that they are regarded as adults in terms of age and sys- that the transfer should take place when patients have com- tem. Ishizaki et al. state that, for the purpose of minimiz- pleted school education, have attained sufficient social and ing these problems, pediatricians need to train patients in psychological development, and are stable in terms of symp- age-appropriate disease knowledge, personal capacity, and toms and psychological status. In the statement, it is recom- communication required for participation in society, whereas mended to create an organization consisting of physicians adult care physicians need to deepen their understanding (transition champions), nurses, psychological specialists, about medical care for childhood-onset chronic diseases that social workers, and other relevant persons who have all been should be administered after children reach adulthood. Hat- well trained in transition programs to support the transition tori et al. [3] reported that approximately 20% of patients and to implement transition programs through collaboration aged 20 years or older were unemployed, and pointed out with adult health-care units. that the unemployed patients had financial difficulties. An In Japan, in 2014, the Japan Pediatric Society announced important issue is to provide them with education that suits a “Statement of health-care transition of patients with child- their abilities, so that they can be employed and become hood-onset diseases” [8]. This statement proposes that in financially independent. transition, health-care professionals involved in the two areas A consensus statement issued by the American Academy of pediatric and adult medical care should achieve seam- of Pediatrics, the American Academy of Family Physicians, less provision of medical care during transition from pedi- and the American College of Physicians–American Soci- atric to adult care services as disease conditions change and ety of Internal Medicine (AAP/AAFP/ACP-ASIM) in 2002 patients themselves mature. It also describes that, depending set the goals as follows: to ensure that “by the year 2010”, on the patient’s maturity or individual disease, an adequate all physicians who provide primary or subspecialty care to medical care system (e.g., the patient is managed and/or young people with special health-care needs (1) understand treated jointly by the pediatric and the adult units) should the rationale for transition from child-oriented to adult- be selected. oriented health care; (2) have the knowledge and skills to It is stated that when formulating transitional programs, facilitate that process; and (3) know whether, how, and when action plans for each of the matters listed below will be transfer of care is indicated [5]. Everyone passes through developed, implemented, and evaluated [9]. 1 3 Clinical and Experimental Nephrology The patients themselves can describe their own health (4) Health-care providers and patients’ families should status. not be overprotective and/or exert too much control The patients can ask questions during each visit and over their children only, because they worry about dis- understand what medication is needed. ease aggravation, so that before transfer to adult care The patients can discuss sexual capabilities, including services, patients can become able to adequately live safe sex and the impact of the condition and/or medi- their lives on their own and receive medical care. cations, for example, whether the condition will affect (5) Health-care providers should take time to discuss with fertility. patients the changes that are expected to occur in the The patients can talk to friends and supportive relation- future (e.g., explanation on adult medical care) and ships about any concerns and identify any need for help. the patients’ future, before transfer to adult care, so The patients can discuss employment options and plan to as to share information. work—what kind of work do they want to do? Are there (6) Health-care providers should provide, as appropriate, any restrictions, for example, on the number of hours patients with information about health insurance and they can work? medical expenses. The patients can discuss any restrictions on mobility and (7) Support to help patients develop independent living their interests caused by their condition. skills should include support to help them receive ade- quate education and to choose their future occupation. (8) Patients will need to understand the details of the Content treatment they will receive and independently man- age their health by themselves. Patients and health- Transfer from pediatric to adult care care providers should have good understanding about the status of transition readiness through the use of (1) Ensure that the transfer from pediatric to adult care transition readiness assessment. does not cause disruption to advanced, high-quality (9) Pediatricians should have each patient prepare a medi- medical care. cal summary to facilitate his/her self-management, (2) Transfer patients from pediatric to adult care after they and utilize the transition summary at the time of trans- have achieved sufficient psychological and social devel- fer to adult medical care services. opment as well as relevant education. Avoid the transfer (10) Adult care physicians should endeavor to understand as far as possible if the patient’s symptom(s) or psycho- the special characteristics of pediatric CKD patients logical status is unstable. and to provide adequate medical care for CKD (3) Transfer from pediatric to adult care should occur only patients in adolescence and young adulthood. after preparation and assessment have been made. It is important to implement transition programs. Necessary support by medical societies/associations Transition programs (1) Regarding continued provision of medical care from (1) Transition programs should be started as early as pos- pediatric to adult health-care services, identify finan - sible. cial problems and request the administration to provide (2) Physicians who are familiar with transition programs adequate support. should be made available on both sides, for pediatric (2) Conduct surveys on patients in transition process and and adult care. A team consisting of nurses, psycho- discuss problems. logical specialists, social workers, and other relevant (3) Develop educational programs on transition medicine persons should be organized. Measures to support the for health-care providers. transition, e.g., establishing a transition clinic, should (4) Investigate qualification requirements for transition be formulated. coordinators and human resources for transition sup- (3) Patients, their families, and health-care providers port, for the purpose of making programs successful, should always consider, from the start of a transition and request administrative personnel to provide ade- program, that a patient should be independent in the quate support regarding these issues. future. The patient him/herself should be at the center of the program, independent from his/her family, to participate in decision making. 1 3 Clinical and Experimental Nephrology start the transition at age of 12–14. Educate all staff Statement about the practice’s approach to transition. 2. Transition tracking and monitoring: establish criteria for Transfer from pediatric to adult care identifying transitioning patients, and enter their data into a registry. 3. Transition readiness: use a transition readiness assess- (1) Ensure that the transfer from pediatric to adult care ment tool (checklist) beginning at age of 14. Develop does not cause disruption to advanced and high-quality goals on self-care with the patient and his/her family. medical care. 4. Transition planning: develop and regularly update the plan of care, including readiness assessment findings, The consensus policy statement issued by AAP/AAFP/ goals and prioritized actions, medical (transition) sum- ACP-ASIM in 2002 indicated that transition in medical care mary, and emergency care plan. Plan with youth and to adolescence and young adulthood is special medicine per- parent/caregiver for optimal timing of transfer. If both formed during a time of life in which children reach adult- primary and subspecialty care are involved, discuss opti- hood, and that during this transition period, advanced and mal timing for each. high-quality medical care must not be disrupted [5]. 5. Transfer of care: transfer the patient to adult care when his/her condition is stable. Upon transfer, prepare docu- (2) Transfer patients from pediatric to adult care after ments necessary for the transition (readiness assessment, they have achieved sufficient psychological and social medical summary, emergency care plan, etc.). On the development as well as relevant education. Avoid the side of adult care services, complete preparations by transfer as far as possible if the patient’s symptom(s) team members, and at the time of first medical exami- or psychological status is unstable. nation, update the medical summary and the emergency (3) Transfer from pediatric to adult care should occur only care plan. after preparation and assessment have been made. It is 6. Transfer completion: contact patient and parent/car- important to develop transition programs. egiver 3–6 months after last pediatric visit to confirm transfer of responsibilities to adult practice and elicit In the consensus statement announced by ISN/IPNA, it feedback on experience with transition process. Com- is stated that transfer from pediatric to adult nephrology ser- municate with adult practice confirming completion of vices should occur only after preparation and assessment have transfer and offer consultation assistance, as needed. been performed and that the transfer should take place when Build ongoing and collaborative partnerships with adult patients have completed school education, have attained suf- care providers. ficient social and psychological development, and are stable in terms of symptoms and psychological status [7]. The social Transition programs development refers to a process in which individuals are estab- lishing adequate relations with their families and those outside the families, and are becoming adapted to living in groups. (1) Transition programs should be started as early as pos- In adolescence and young adulthood, some individuals may sible. sometimes be isolated, because their social engagement is not going well; this requires special attention. The consensus statement issued by AAP/AAFP/ACP- Got transition [an organization established by the US ASIM in 2002 provided proposals to prepare a transition Maternal and Child Health Bureau (MCHB) and the plan by age of 14 [5]. The consensus statement announced “National Alliance to Advance Adolescent Health”, an by ISN/IPNA in 2011 made proposals to introduce to the NPO] in collaboration with AAP/AAFP/ACP-ASIM has concept of transition at age of 12–14 and to proceed with developed the six core elements [10]. It was reported that in transition gradually in accordance with the stage of develop- accordance with the six core elements, systematic transition ment and intellectual abilities [7]. The six core elements pro- of health-care has been possible on both sides, in pediatrics pose that a document be developed describing the approach and internal medicine [11]. The six core elements consist of to transition (transition policy) that it be shared with the the following: patient and his/her family, and that the transition be started at age of 12–14 [10]. It is necessary to start a transition pro- 1. Transition policy: develop a document describing the gram by age of 15 at latest. approach of the practice to transition (transition policy), share the policy with the patient and his/her family, and (2) Physicians who are familiar with transition programs should be made available on both sides, for pediatric 1 3 Clinical and Experimental Nephrology and adult care. A team consisting of nurses, psycho- (4) Health-care providers and patients’ families should not logical specialists, social workers, and other relevant be overprotective and/or exert too much control over persons should be organized. Measures to support the their children only because they worry about disease transition, e.g., establishment of a transitional outpa- aggravation, so that before transfer to adult care ser- tient clinic, should be formulated. vices, patients can become able to adequately live their lives on their own and receive medical care. The policy statement issued by AAP/AAFP/ACP-ASIM proposed that all young people with special health-care Higashino et al. [14] pointed out that one factor disturbing needs should have an identified health-care professional who transition is excessive parental control over patients; severe attends to the unique challenges of transition and assumes rating of disease and underestimation of a child’s abilities responsibility for current health care, care coordination, also disturb transition, which may lead to a situation in and future health-care planning [5]. The consensus state- which the patient does not work, stays home, and lives his/ ment by ISN/IPNA made recommendations to identify lead her life under the protection of his/her parents. They also clinicians (transition champions) on the pediatric and adult have described that pediatricians themselves have strong care sides, and to designate transition coordinators such as mental relationships with patients and their families and nurses and social workers, so as to formulate an organization are prone to maintain the present status, and thus constitute responsible for the process from preparations for transition the maximum opposing force against transition. Honda [16] to transfer to adult care services through a transition clinic. stated that “pediatricians have to instruct parents not to be The ISN/IPNA statement also provided recommendations overprotective or over-meddling, and pediatricians them- to transfer from pediatric to adult nephrology services only selves have to prevent themselves from being overprotec- after eo ff rts to assess and prepare the adolescent/young adult tive unconsciously”. The Guidebook of the Transition Care have occurred and take place during a period without cri- for Adolescent Nurses also indicates that overprotection of ses, and to be offered the opportunity of an informal visit to children, mother–child attachment, familial malfunction, and the nominated adult service before transfer occurs [7]. The other relevant factors constitute problems in transition [4]. position paper announced by SAM in 2003 indicated that It is important for pediatric health-care providers and fami- patients and their families should have transition coordina- lies to encourage patients to voluntarily consult health-care tors who are responsible for transition programs and sup- providers about their own issues, including psychological port their transition to adult health care [12]. It is advisable, problems. whenever possible, to designate specialists (psychiatrists, psychological specialists, nurses, etc.) who are familiar with (5) Health-care providers should take time to discuss with psychological status of children suffering from diseases. patients the changes that are expected to occur in the future (e.g., explanation on adult medical care) and the (3) Patients, their families, and health-care providers patients’ future, before transfer to adult care, so as to should always consider, from the start of a transition share information. program, that a patient should be independent in the future. The patient him/herself should be at the center Watson et al. [15] described some of the differences of the program, independent from his/her family, to between pediatric and adult units in their review in 2005. participate in decision making. Reiss et al. [13] also stated in their review that discussion should be held with patients and their family about their Reiss et al. [13] describe in their article entitled “Health- future and that patients should be given information about Care Transition: Destination Unknown” that early develop- adult care services and insurance, and be made aware that ment of a transition plan is a key to success of transition. they themselves will live their lives in the adult medical They also recommend, for the purpose of facilitating transi- world. Some patients may harbor concerns about education tion, that discussion with patients should be held in early and employment, since they had needed to receive treat- stages regarding their future, and that patients should be ment for their disease and will not be able to achieve the informed of changes that will occur in the future as early academic career they should have obtained. Health-care as possible. They argue that, in transition programs, it is providers need to discuss with patients’ employment types important that patients themselves can describe their own that are commensurate with their abilities and aptitudes. health status and that patients can voluntarily visit hospitals to receive medical examination and perform self-manage- (6) Health-care providers should provide, as appropriate, ment when taking drugs. A program helping the patient to patients with information about health insurance and understand his/her disease in early stages is necessary. medical expenses. 1 3 Clinical and Experimental Nephrology In the consensus statement by ISN/IPNA, it is pro- cooperation with the patient and his/her family, and in addi- posed to resolve financial problems as preparation for tion, to evaluate the readiness assessment at regular intervals transition [7]. Reiss et al. [13] pointed out in their review to confirm achievement of objectives [10]. In the report enti- that problems with the scope of health insurance cover- tled “Guidebook of Health-Care Transition of Adult Patients age constitute structural difficulties disturbing transition. with Childhood-Onset Chronic Diseases for Pediatricians”, It is important to identify problems with health insurance it is recommended to use readiness assessment tools for the and medical expenses in the preparatory phase for transi- purpose of determining to what extent patients manage their tion and to provide patients with relevant information, to health by themselves [9]. endeavor to identify solutions. (9) Pediatricians should have each patient prepare a medi- (7) Support to help patients develop independent living cal summary to facilitate his/her self-management, and skills should include support to help them receive ade- utilize the transition summary at the time of transfer to quate education and to choose their future occupation. adult medical care services. The support to help patients develop independent In the policy statement issued by AAP/AAFP/ACP- behaviors should include support to help them receive ASIM, it is recommended to prepare and maintain an up- education appropriate for their abilities and to choose to-date medical summary that is portable and accessible, their future occupation accordingly. The report entitled which is critical for successful health-care transition [5]. “Guidebook of Health-Care Transition of Adult Patients In the consensus statement by ISN/IPNA also, it is recom- with Childhood-Onset Chronic Diseases for Pediatricians” mended that as preparation for transition, patients have a demonstrated that the rates of advancement to universities comprehensive written and verbal summary of all the mul- of the patients with chronic disease were less than 40% and tidisciplinary aspects of the young person’s care; this should the presence of disease was caused problems at the time include medical, nursing, dietary, social, and educational of employment in 56.3% of patients, which highlights the information [7]. Patients are instructed to have a transition importance of providing opportunities to receive education summary, as a “health handbook”, so that they may indi- and expand employment possibilities [9]. One of the six vidually utilize it for their self-management. In the six core core elements set as the objectives in transition support elements, it is recommended to prepare a medical summary programs is an employment type suitable for the patient’s and other relevant information at the time of transfer to adult own physical capacities (educational and occupational care and to update the medical summary at the first visit at planning) [9]. Families and health-care providers should the adult health-care service facility [10]. support patients while being careful not to disturb their independence. (10) Adult care physicians should endeavor to understand the special characteristics of pediatric CKD patients (8) Patients will need to understand the details of the treat- and to provide adequate medical care for CKD ment they will receive and independently manage their patients in adolescence and young adulthood. health by themselves. Patients and health-care provid- ers should have good understanding about the status of Higashino et  al. [14] pointed out the following facts transition readiness through the use of transition readi- as transition-disturbing factors on the side of health-care ness assessment tools. providers: adult care physicians lack understanding about pediatric diseases and about proper handling of adolescent In the consensus statement by ISN/IPNA, it is recom- and young adult patients. Ishizaki et al. [19] conducted a mended to use tools including, but not limited to, a transition questionnaire survey and reported that a factor disturbing medical passport, a self-administered transition, readiness transition is the absence of specialists in adult health-care survey, the TRxANSITION Scale (TRxANSITION) and units. What is important in transition is to understand the other relevant tools to aid in acquisition of disease self- characteristics of patients with childhood-onset CKD due to management skills [7]. Two systematic reviews published CAKUT, multiple anomalies, or other relevant causes that in 2014 demonstrated the validity and reliability of the Tran- are rarely observed in adults. For the purpose of promot- sition Readiness Assessment Questionnaire (TRAQ) and ing this understanding, our research team has developed the TRxANSITION Scale (TRxANSITION) as comprehensive above guidelines on medical care for CKD in adolescent and tools, which have been described in published reports to young adult patients. aid in transition readiness assessment [17, 18]. In the six Those concerned on the side of adult health-care services core elements also, it is recommended to use readiness will understand their patients and organize a transition team assessment and develop goals on self-care through joint consisting of psychological specialists, social workers, and 1 3 Clinical and Experimental Nephrology other relevant personnel to work in collaboration with pedi- Hattori et al. [3] pointed out financial problems in ref- atric units. It is recommended to re-check transition readi- erence to their finding that approximately 20% of patients ness assessments, review entries stated in medical sum- aged 20 years or older were unemployed. They also found maries, modify the emergency care plans, and take other that approximately 30% of patients visited adult care units, relevant actions. Even after patients have received care at without authorized referral by pediatric care units, because adult health-care units, they need to concurrently receive of aggravation of symptoms or recurrence, or for urinary medical care at pediatric units and transition clinics for a screening and other relevant reasons. What is required is to certain period of time (for at least 6 months after transfer to identify the actual status on transition patients, to discuss adult care services). problems with transition, and to recognize the importance of transition programs. Necessary support by medical societies/associations (3) Provide educational programs on transition for health- care providers. (1) Regarding continued provision of medical care from Hattori et al. [3] reported that only three pediatric institu- pediatric to adult health-care services, identify financial tions (3%) of the responding 101 and one adult institution problems and request the administrative personnel to (0.9%) of the responding 107 had transition coordinators. In provide adequate support. the consensus statement by ISN/IPNA, it is recommended to have physicians who lead transition programs (transition The statement by SAM in 2003, the consensus statement champions) available at transition clinics both in pediatric by AAP/AAFP/ACP-ASIM, and the consensus statement by and adult care services, and to formulate an organization ISN/IPNA highlight that the continuity of the health insur- consisting of transition coordinators, such as nurses and ance system from pediatric to adult care services should be social workers, and psychological teams, so as to provide ensured [5, 7, 11]. In not a small number of cases, finan- support from the preparation for transition to transfer to cial problems cause nonadherence. It is important that adult care services [7]. patients themselves understand the scope of health insur- McManus et al. [21] provided education regarding the ance coverage, and in addition, medical expenses covered six core elements to health-care providers at both pediatric by the National Health Insurance for intractable diseases and adult care units, and reported that their knowledge about are ensured. The report entitled “Guidebook of Health-Care transition was enhanced after the education. They described Transition of Adult Patients with Childhood-Onset Chronic the following advantages, among others: the health-care pro- Diseases for Pediatricians” reported cases in which patients viders became able to understand patients more easily; and encountered employment-related problems (e.g., having a they began to activate communication between pediatric and disease is a disadvantage when working), medical expenses adult care units. The reality is that an increasing number of are great, and some patients are not motivated to continue pediatric CKD patients require transition, whereas only a medical care, since provision of medical benefits for speci- small number of health-care providers are engaged in tran- fied pediatric chronic diseases is discontinued at age of 20 sition medicine and they lack knowledge about transition. [9]. It is urgently necessary to expand educational programs on transition for health-care providers. (2) Conduct surveys on patients in transition process and discuss problems. (4) Investigate qualification requirements for transition coordinators and human resources for transition sup- In May 2010, Honda et al. [20] performed a question- port, for the purpose of making programs successful, naire survey among councilors of the Japanese Society for and request administrative personnel to provide ade- Pediatric Nephrology (49 medical institutions) about how quate support regarding these issues. they view transitional programs for nephrotic syndrome. Only one institution had a transition program, and more Supporting patients who feel anxious about transition in than half of the medical institutions studied conducted tran- achieving a smooth transition to adult care units requires sitions without prior discussion with adult care physicians. a multidisciplinary approach involving physicians, nurses, However, since treatment methods including steroids for psychological specialists, social workers, and other relevant nephrotic syndrome are different between adult and pediatric personnel, and takes a long time in terms of medical care. patients, many problems have occurred in conjunction with That is why the financial support of administrative agen- the transition, and these problems associated with transition cies is necessary for practical implementation of transition are not sufficiently recognized in Japan. support. A surveillance on transition performed once every 1 3 Clinical and Experimental Nephrology Open Access This article is distributed under the terms of the Crea- 4–5 years in the US, since 2001 has revealed that between tive Commons Attribution 4.0 International License (http://creat iveco the 2005–2006 surveillance and the 2009–2010 surveillance, mmons.or g/licenses/b y/4.0/), which permits unrestricted use, distribu- the number of transition programs implemented for patients tion, and reproduction in any medium, provided you give appropriate requiring transition support had not increased at all, which credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. indicated that financial incentive is necessary for promoting transition [21]. 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A systematic review of the psy- chometric properties of transition readiness assessment tools in Affiliations 1 1 2 3 4 5 Wataru Kubota  · Masataka Honda  · Hirokazu Okada  · Motoshi Hattori  · Masayuki Iwano  · Yuko Akioka  · 6 7 8 9 10 11 Akira Ashida  · Yukihiko Kawasaki  · Hideyasu Kiyomoto  · Mayumi Sako  · Yoshio Terada  · Daishi Hirano  · 12 13 14 15 16 17 Mikiya Fujieda  · Shouichi Fujimoto  · Takao Masaki  · Shuichi Ito  · Osamu Uemura  · Yoshimitsu Gotoh  · 18 19 20 21 22 Yasuhiro Komatsu  · Shinichi Nishi  · Mitsue Maru  · Ichiei Narita  · Shoichi Maruyama 1 12 Department of Nephrology, Tokyo Metropolitan Children’s Department of Pediatrics, Kochi Medical School, Kochi Medical Center, 2-8-29 Musashidai Fuchu, Tokyo, University, Kochi, Japan Japan 183-8561 Department of Hemovascular Medicine and Artificial Department of Nephrology, Saitama Medical University, Organs, Faculty of Medicine, University of Miyazaki, Saitama, Japan Miyazaki, Japan 3 14 Department of Pediatric Nephrology, School of Medicine, Department of Nephrology, Hiroshima University Hospital, Tokyo Women’s Medical University, Tokyo, Japan Hiroshima, Japan 4 15 Department of Nephrology, Faculty of Medical Sciences, Department of Pediatrics, Yokohama City University University of Fukui, Fukui, Japan Hospital, Yokohama, Japan 5 16 Department of Pediatrics, Saitama Medical University, Ichinomiya Medical Treatment & Habilitation Center, Saitama, Japan Ichinomiya, Japan 6 17 Department of Pediatrics, Osaka Medical College, Takatsuki, Department of Pediatric Nephrology, Japanese Red Cross Japan Nagoya Daini Hospital, Aichi, Japan 7 18 Department of Pediatrics, Fukushima Medical University Department of Healthcare Quality and Safety, Gunma School of Medicine, Fukushima, Japan University Graduate School of Medicine, Maebashi, Japan 8 19 Tohoku Medical Megabank Organization, Tohoku Division of Nephrology and Kidney Center, Kobe University University, Sendai, Japan Graduate School of Medicine, Kobe, Japan 9 20 Division of Clinical Trials, Department of Clinical Research Faculty of Nursing and Rehabilitation, Konan Women’s Promotion, Clinical Research Center, National Center University, Kobe, Japan for Child Health and Development, Setagaya-ku, Tokyo, Division of Clinical Nephrology and Rheumatology, Niigata Japan University Graduate School of Medical and Dental Sciences, Department of Endocrinology, Metabolism and Nephrology, Niigata, Japan Kochi Medical School, Kochi University, Kochi, Japan Division of Nephrology, Nagoya University Graduate School Department of Pediatrics, Jikei University School of Medicine, Nagoya, Japan of Medicine, Tokyo, Japan 1 3

Journal

Clinical and Experimental NephrologySpringer Journals

Published: Jun 4, 2018

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