798 treatment while coping with the same develop mental, psychological, and neurobiological pro cesses as other adolescents Acceptance That the Disease Does Not End with Childhood As chronically ill y[.]
798 treatment while coping with the same developmental, psychological, and neurobiological processes as other adolescents cceptance That the Disease Does Not A End with Childhood As chronically ill youth grow out of childhood and adolescence, they are challenged to understand and cope with a difficult reality: that their disease is not a transitory aspect of their childhood but something that will always be a major part of their lives Therefore, it is not surprising that some youth with a serious chronic disease, such as CKD, experience an identity crisis in late adolescence and early adulthood that requires psychotherapeutic treatment School and Vocational Training in Difficult Circumstances Adolescents and young adults with advanced CKD often face hurdles with their education Their health condition may lead to problems with concentration and memory, limitations in physical energy, and absenteeism due to clinic visits, hospitalizations, or dialysis treatments Education is a very important determinant of future health; timely recognition of educational challenges is important so that processes can be put in place early to support the patient and optimize their potential An additional consideration during vocational training and later employment is that CKD patients may need to accept restrictions in their choices of work and may have to give up their originally desired career dditional Challenges in Special A Social Situations Some youth with CKD exist in precarious situations that become even more difficult when L E Bell and D Bethe they reach the age of majority, for example, those with emotionally unsupportive families, those with behavioral or mental health problems, those living in poverty, and those aging out of foster care [31–35] Fragmented social support programs and idiosyncratic eligibility criteria may impede young adults getting the help they need and lead to lapses in care and stigmatization [35] When these young people have a serious chronic disease, the hurdles can be overwhelming Some youth with CKD may not have the cognitive capacity to make informed decisions for themselves In these situations, timely evaluation of decision-making capacity and the potential need for a surrogate decision-maker or official curatorship is essential This should be started by the time the patient is 17 years of age, as the process can be lengthy Conditions of guardianship or decision support need to be clearly documented in the patient’s chart and communicated to the new adult clinicians [9] Adolescents and young adults with CKD are in a vulnerable phase of life and therefore need regular evaluation of their psychosocial situation and a low threshold to access psychosocial support It is also very important to provide support in school and vocational training in order to reconcile the requirements of medical treatment with educational needs Having a psychologist and a social worker as part of the CKD and dialysis care team is key and should be the goal for all programs [36] In general, the less support the family can provide, the more support by professionals is needed Unfortunately, psychosocial support services are less readily available in the adult medical system; this is an important argument in favor of individualized transfer timing For patients that must be transferred while still needing psychosocial support, steps must be taken to either ensure services in the adult center or to connect the young person with a psychosocial counseling center near his or her home 41 Transition and Transfer to Adult Care for Adolescents and Young Adults with Advanced Chronic… Table 41.3 The three “pillars” of adherence Communication between Patient/Family (P/F) and Health-Care Team (HCT) Possible barriers • HCT overestimates the P/F’s to adherence health literacy or cognitive capacity, particularly when the care plan is complex • HCT fails to recognize limitations in language skills when the P/F’s mother tongue is different • HCT overestimates the capacity of the P/F to absorb /retain information in certain settings, e.g., presence of distractions, emotionally taxing situations (situational receptivity) • P/F not fully understand treatment and prescriptions • P/F disagree with (parts of) the treatment plan • Lack of clarity of medication prescriptions or other treatment regimen aspects • Provide information that Support takes into account the P/F’s measures for language ability and improving intellectual capacity adherence • Be aware of potential problems with situational receptivity and the need to adapt or reschedule teaching • Age-appropriate education and regular involvement of the young person, from an early age • Provide complex regimens in writing, in “patientfriendly language,” and keep them updated (e.g., medication prescription) • Develop a consensus on treatment that considers the P/F’s views and ideas • Cultivate a relationship of trust between P/F and HCT 799 Practical implementation in everyday life • Treatment requirement not practical for the P/F, e.g., “Take medication every 6 hours!” • Adverse side effects of medication • Forgetting medication • Competing priorities • Uncertainty in what to with problems in medication taking, e.g., when realizing they forgot to take their medication, when they have vomiting or diarrhea • Difficulty adhering to diet and fluid restrictions • Financial-organizational aspects, e.g., high travel costs for outpatient consultations, difficulty missing work/school Mental and emotional strength • Stress and emotional exhaustion due to the long-term burden of the illness and treatment • Anxiety/psychological distress related to learning and responsibility for complex treatments (e.g., home dialysis) • Poor social support • Other forms of psychosocial issues • Denial of disease • Puberty • Treatment regimens that, as much as possible, adapt to the everyday life of the P/F • Coaching, teaching, provision of practical aids (e.g., medicine dosettes, practical dietary information, phone or tablet apps for learning and reminders) • For medication side effects – Evaluate if the dose can be changed – Assess if something can be actively done to diminish the side effects – If not possible to make a change: Give extra appreciation for the “price” the patient is “paying” for the therapy • In case of financial problems: Consult a social worker • Express appreciation for the coping efforts of the P/F – even if adherence is not yet satisfactory • Have an “open ear” for personal problems, if necessary calling professional psychosocial help • For patients in puberty: If necessary, help with the search for other fields for experimenting with sensation-seeking and risk-taking, e.g., advise on possible sports activities • Mediation of contacts to people who are equally affected; recommendation of participation in self-help activities, therapeutic camping, etc Checklist for assessing possible barriers to adherence and counseling tips to improve it Each column (“pillar”) is necessary but, on its own, is insufficient for acceptable adherence If there are problems in one of the “pillars,” the whole adherence-“building” becomes unstable (see also Fig. 41.2) L E Bell and D Bethe 800 Fig 41.2 The “three pillars of adherence” (see also Table 41.3) Adherence Communication between patient/family and health-care team Regular Evaluation of Adherence Adherence to treatment is a challenge for almost all patients “Satisfactory adherence” is attained when the difference between the patient’s actual therapy (e.g., medication taken, dialysis performed, diet, etc.) and the prescribed therapy has no effect on the therapeutic outcome [37] With the progression from childhood to adolescence and then young adulthood, satisfactory adherence usually becomes more challenging [37] Most adolescents don’t want to seem different from their peers and, as part of normal development, may resist the expectations of their parents and other adults As they move into young adulthood, competing demands may contribute to poor adherence Executive brain function, necessary for planning, good decision-making, and impulse control, is not fully developed until the mid-20s [30, 38, 39] Among transplant recipients, the risk of graft failure is highest in adolescents and young adults aged 17–24 years and next highest in those aged 25–29 years; it is thought that nonadherence plays an important role in this outcome [40] Practical implementation in everyday life Mental and emotional strength Regular support for adherence and nonjudgmental counseling are important for youth at all their outpatient visits A partnership between the patient and healthcare team is essential The “three pillars of adherence” (Table 41.3, Fig. 41.2) can serve as a checklist for regular adherence discussions, assessing possible barriers to adherence and jointly considering possibilities for improvement Satisfactory adherence requires all three “pillars” to function: communication between the patient and healthcare team, practicality of implementation of the treatment regimen in everyday life, and mental and emotional strength If one of the “pillars” develops cracks, the “adherence building” becomes “unstable.” atient and Family Engagement P and Empowerment A well-functioning parent-young person relationship is central to the support of adolescents and young adults during the transition process However, by the time their chronically ill chil- 41 Transition and Transfer to Adult Care for Adolescents and Young Adults with Advanced Chronic… dren reach adolescence, many parents have little strength remaining for the increased transition demands A poignant statement from a systematic review of qualitative studies on parents’ experiences sums it up: “In addition to ‘normal’ parental roles, being a parent of a child with chronic kidney disease demands a high-level healthcare provider, problem-solving, information seeking, and financial and practical skills at a time when the capacity to cope is threatened by physical tiredness, uncertainty, and disruption to peer support within and outside the family structure” [41] Parents caring for a chronically ill child are at increased risk for depression, diminished quality of life, psychological stress, poor physical health, trauma symptoms, and financial burdens [41–44] Despite this, most patient-family units adjust and jointly fulfill their tasks in treatment With the onset of adolescence, the challenges for patients and parents grow, with each taking on new roles The patient must progressively assume more responsibility for his/her health management, and the parents must learn to gradually relinquish control over their child’s adherence The parents move from being the all-controlling “CEO” of their child’s healthcare to a “consultant” in the background for support [45] (Fig. 41.3) Parents also need to understand that a teenager in an “adult” body doesn’t yet have fully developed “adult-level” thought processes and Fig 41.3 A model of leadership transition for health management responsibility between parents and their children with special healthcare needs (Image reproduced from Bell 2017, [84] with permission of Springer Nature) 801 decision-making judgment Their task is a tightrope walk between under- and overprotectiveness, with a continued need for vigilant background oversight of treatment The multidisciplinary healthcare team can play an important role in positively supporting these changes Parent-child conflict may be greater for chronically ill AYA, compared to healthy peers [46] Many parents and some patients are fearful of the transfer to adult care; concerns include potential deterioration in quality of care, diminished support, and the emotional challenge of leaving their long-established and trusted pediatric team [2, 47] They find it easier if they are sufficiently prepared and actively involved in the transition process, including timing of the transfer of care and if they perceive a cooperative alliance between the pediatric and adult teams [48] When no family is available to support the young person during their transition and transfer, there is a need to find someone who can fill this gap; possibilities include a relative, a residential group caregiver, or youth worker from a community psychosocial agency Transfer to adult medicine without a close support person may overburden the young person and pose a risk to their health egular Assessment of Transition R Preparation Using Standardized Tools There are a number of publicly available generic transition preparation tools, some more comprehensive than others Most target older adolescents and their transfer readiness, and only a few have been validated A list of currently validated tools is available on the Got Transition website [49] When choosing a tool, it is important to ensure it covers all areas of transition preparation, including mental health, sexuality (fertility, pregnancy, contraception, and sexually transmitted infections), substance use, and healthy, active living Many validated tools consist of simple checkboxes for the patient to fill out However, unless these are carefully reviewed by a healthcare professional in an interview with the 802 adolescent, important items may be missed There is also a need for transition tools for younger adolescents that assess age-appropriate milestones and tasks, because stepwise preparation for independence is recommended from the age of 12 years For example, at the Montreal Children’s Hospital, there are age-specific forms to promote progressive steps toward self-reliance There are also questionnaires for parents, to help them better understand and foster their child’s developing autonomy All are publicly available on the hospital website [50] Developmentally progressive checklists, entitled “Ready, Steady, Go,” are also available on the website of a large UK teaching hospital [51, 52] In addition, there is an outstanding set of tools developed for pediatric transplant recipients by the American Society of Transplant Pediatric Community of Practice which could easily be adapted for dialysis patients or those with advanced CKD [53] Once these assessments are completed and reviewed with the healthcare professional, an individualized transition plan needs to be put in place for each patient that promotes their progressive independence and self-responsibility It should be clearly labeled and easily accessible in the patient’s medical chart An excellent example from Got Transition [13] includes the following: (1) prioritized goals, (2) specific issues or concerns, (3) selected actions to take with consideration of both the target date and completion date, and (4) the name of the person responsible These transition plans of action need to be periodically reviewed for progress and updates For patients with intellectual disability who will never be independent, transition support needs to include, or focus on, the patient’s parents Important issues to address include legal information about surrogate decision-making, community resources, potential financial aid, and the changes that will occur in the adult healthcare system Teaching and preparation of parents should also be documented and tracked in the patient’s chart It can be difficult to find enough time at regular clinic visits to incorporate all the elements needed to prepare a patient for transition and transfer A useful option is to have designated L E Bell and D Bethe multidisciplinary transition preparation clinics Patients can attend these clinics once or twice a year, starting a few years prior to the planned transfer date At the Montreal Children’s Hospital, transition preparation clinics are offered to all adolescents with complex renal disease, starting from the age of 12 to 14 years Each patient is seen without their parent by the renal nurse, dietician, and social worker, as well as by a dedicated adolescent medicine physician and nephrologist One or both parents also meet with the nephrology nurse, to help them prepare their adolescent for progressive autonomy racking Progress of Individual T Patients and of the Clinic’s Transition Process as a Whole Keeping track of patients in need of transition preparation and their multiyear progress requires a systematic approach An individual flow chart within a patient’s medical file can facilitate this Suggested items to include are the following: (1) the dates of (a) the patient’s serial transition assessments, (b) updates of their medical summary and emergency care plan, (c) discussions about the adult model of care, (d) when the patient/family was advised regarding the need for a primary care physician (and the name of that person), and (e) the planned transfer time; (2) the names of the selected adult nephrologist and other adult specialists (if relevant); and (3) documentation of the preparation and content of the transfer package An example of such of a form can be found in the Got Transition tools [54] It is also important to monitor the clinic or program’s transition process as a whole, and a registry/database is recommended, such as that shown on the Got Transition website [55] For pediatric renal programs, it should include, at a minimum, patients on dialysis, kidney transplant recipients, adolescents with complex kidney disease, and those with advanced CKD. A program registry is important for overall program organization, quality improvement, and, potentially, future research initiatives 41 Transition and Transfer to Adult Care for Adolescents and Young Adults with Advanced Chronic… Timing of Transfer Transfer of care is a pivotal event in the transition process, and its timing should be optimized The joint consensus statement of the International Pediatric Nephrology Association (IPNA) and the International Society of Nephrology (ISN) recommends individualized transfer timing, taking into account the patient’s transition readiness, clinical and social stability, school milestones, and other subspecialty coordination [10] However, in many pediatric nephrology centers, the age at transfer is fixed and nonnegotiable, usually at around 18 years of age, and determined by government regulation, health administration organizations, or insurance [56– 58] There is concern that a fixed transfer age may negatively impact outcome [56] and some evidence to suggest that transition readiness improves with increasing young adult age [59, 60] In a landmark study using the United States Renal Data System (USRDS) to look at the association between age and graft failure rate, Foster and colleagues showed that the highest rate of graft failure was between the ages of 18 and 19 years – precisely when many centers have to transfer their patients to adult medicine [61] An investigation of the correlation between age at transfer and kidney graft failure revealed that patients who were transferred under the age of 21 years had a significantly higher graft failure rate than those who were 21 years or older at the time of transfer [62] For centers that are required to transfer their patients at the age of 18 years, systems are needed to support the young person during the vulnerable young adult (or emerging adult) period (approximately 18 to 25 years of age) These can include providing a phase of overlapping pediatric/adult care, having a designated nurse and physician interested in young adult care assigned to each young adult patient, organizing a young adult clinic, facilitating networking among peer patients, and involving external psychosocial counseling agencies and/or (if available) psycho- 803 social staff at the adult center [11, 63] A number of centers in Canada, Europe, and the USA have established young adult clinics in a variety of specialties, including diabetes, kidney transplant, respirology, and rheumatology [64–68] Improved outcomes have been noted, but more studies are needed Whatever the approach, an adult site champion is very important to lead and advocate for optimal transition processes, while a navigator/coordinator (see section “Named Healthcare Worker and Transition Champion” above) can help the young person make their way in the adult health system and prevent losses to follow-up uccinct Relevant Patient Transfer S Summaries Creating the transfer summary can often feel like a daunting task, particularly for patients followed for many years or with multiple health issues An early start greatly simplifies the process For example, an annual health summary for each patient with chronic kidney disease can be incrementally updated and edited The final transfer summary should be succinct and highlight information that will be most pertinent to the patient’s ongoing care This summary should also include significant psychosocial aspects The person receiving it will likely have time constraints and will need the most relevant information to be clearly available Inclusion of appropriate contact information for the patient, including preferred modes of contact (e.g., cellphone, email, text message), is essential Another challenge is organizing the transition of patients followed by multiple services, each of whom needs to transfer care For patients who will be followed in the same adult facility for all their health issues, the process is somewhat simpler; if this will not be the case, all the patient’s relevant health documents/summaries need to be accessible to each service A navigator or coordinator can play an important role in facilitating this process ... multiyear progress requires a systematic approach An individual flow chart within a patient’s medical file can facilitate this Suggested items to include are the following: (1) the dates of (a) the... if this will not be the case, all the patient’s relevant health documents/summaries need to be accessible to each service A navigator or coordinator can play an important role in facilitating this... capacity to cope is threatened by physical tiredness, uncertainty, and disruption to peer support within and outside the family structure” [41] Parents caring for a chronically ill child are at increased