Adolescent Transition to Adult Care in Solid Organ Transplantation: A consensus conference report

Authors


* Corresponding author: Lorraine Bell, lorraine.bell@.mcgill.ca

Abstract

Transition of care from pediatric to adult-oriented health care providers is difficult for children with special health care needs. Children who have received solid organ transplants and their providers experience the same difficulties and frustrations as children with other major illnesses. A consensus conference was organized by several transplant organizations to identify major issues in this area and recommend possible approaches to easing the process of transition for solid organ transplant recipients. This report summarizes the discussions and recommendations.

Introduction

Over the last quarter century, there have been dramatic improvements in survival of children with serious health conditions, including those with solid organ transplants and they are becoming adults in ever increasing numbers. There are close to 1500 late adolescent/young adult solid organ recipients with at least 5-year graft survival in the United States alone, the majority having received a kidney (Table 1, Organ Procurement and Transplantation Network (OPTN) data as of July 11, 2008).

Table 1.  Five-year graft/patient survival for solid organ recipients aged 11 to 17 years at time of transplant
OrganNumber functioning/aliveSurvival rate95% Confidence interval
  1. *Five-year survival could not be computed because patient number was less than 10.

  2. (Based on Organ Procurement and Transplantation Network (OPTN) data as of July 11, 2008, http://www.optn.org/)

Kidney91568.265.8, 70.6
Liver28667.062.6, 71.4
Heart22467.7(62.6, 72.9)
Lung 4634.826.7, 42.9
Intestine  9*(.,.)
Heart-lung  3*(.,.)

Coping with organ transplantation during emerging adulthood is challenging. This is a tumultuous period of life for many youth, regardless of physical health. The mortality rate of all 18–24-year olds is more than twice that of those aged 12–17. Substance use and abuse peaks, and the suicide rate is triple that of adolescents (12–17 years) (1) The burden of a serious health condition is an additional stress. Young adult and adolescent renal transplant recipients have the highest rates of acute rejection, death censored graft loss and chronic rejection leading to graft loss (2,3). Up to a third of all adolescent transplant recipients may be non-adherent (4). Normal adolescent tendencies of questioning or rejection of authority may predispose them to spurn previously accepted medical advice and treatment. Preoccupation with body image and the adverse cosmetic effects of some immunosuppressive drugs collide. Many other factors may contribute, among them impulsivity and risk taking, which appear to be, at least in part, biologically driven (5,6). Structural and functional brain imaging show significant maturational changes continue into the early twenties. The regions last to mature are associated with ‘executive brain functions’, such as foresight, planning, evaluation of risk and reward, and the capacity to dissociate decision making and strong emotion (5–7).

As pediatric transplant recipients reach this vulnerable age, health professionals are challenged to effectively facilitate their transition from adolescent to adult care. It is broadly acknowledged that (i) there is a general need to improve the transition process; (ii) many youth are ill-equipped to receive care in the adult system; (iii) adult providers may lack knowledge and skills to care for young adults with childhood-onset chronic conditions and (iv) inadequate health insurance and transition services funding negatively impact patient outcome (3,8–11).

Through the initiative of the Pediatric Committee of the American Society of Transplantation, a jointly sponsored international consensus conference on ‘Adolescent Transition to Adult Care in Solid Organ Transplantation’ was held to address these diverse challenges. Five workgroups focused on the following broad and inter-related themes: tasks and challenges for the pediatric and adult transplant teams, integration into the adult world: vocational, educational and primary/preventive health care matters, system issues and ethics. This report is a synthesis of the expert opinions and recommendations of all the participants, and based on current state of the knowledge. Some of these recommendations may not be specific to solid organ transplantation, or necessarily novel. However, recognition of transition issues has been slower in the transplant community than with several other chronic conditions and this report is meant to highlight transition issues for the adolescent and young adult transplant population. The writers of this paper were presenters of data and/or workgroup leaders. A complete list of attendees is provided in the appendix.

The Transition of Transplant Care Continuum

Transition is a process and transfer the event. Transition encompasses provider, family and patient communication, education and action. Team members include the patient and family unit, transplant nurses, physicians, surgeons, social worker and coordinator, primary care providers and sub-specialists, allied health professionals and community resource providers.

The journey from adolescence to adulthood spans many years and may be delayed in the chronically ill. An appreciation of this variable maturation process is important to avoid unreasonable expectations (12,13). Table 2 illustrates typical developmental landmarks of adolescence and young adulthood. Solid organ transplant recipients may be at particular risk for delays in psychosocial spheres and autonomy, and may achieve these milestones at a later age (14). With time, their attitudes and capacity for complex abstract reasoning generally mature. However, not all attain this higher cognitive function (13) and for those who do not, health risks continue or escalate.

Table 2.  Developmental stages/milestones of adolescence and young adulthood, and suggested clinic visit developmental subjects
 Early adolescence Ages ∼ 10–13 years*Mid adolescence Ages ∼ 14–16 years*Late adolescence Ages ∼ 17–21 years and beyond*
  1. *Ages are approximate; milestones achieved may overlap and vary with cognitive ability and psychosocial dynamics. Adapted from (13, 22–24).

Cognitive, affective and moral• Concrete thinking
• Beginning development of abstract thought in some
• Inability to grasp long-term outcome of current decisions
• Heightened emotional arousability
• Sensation seeking
• Early exploratory behaviors (e.g. smoking, violence)
• Reward oriented
• Development of early moral concepts
• Increased intellectual functioning and abstract thinking
• May revert to concrete thinking in confusing or stressful situations
• May begin to perceive future consequences of actions but not utilize in decision-making
• Sense of omnipotence and invincibility
• Heightened vulnerability to risk taking
• May have difficulty regulating affect and behavior
• Questioning of moral conventions
• Development of personal code of ethics
• Emergent fervent ideology
• Complex abstract thinking (some may never fully achieve)
• More future oriented: can act on long-term plans, delay gratification, set limits
• Greater emotional stability
• Idealism but sometimes absolutism, with intolerance of opposing views
• May be swayed by religious and political ideology that promise answers to complex questions
Self-concept/identity formation• Fantasy and present-oriented
• Self-conscious about appearance, body image and attractiveness
• Increased introspection
• May question meaning of life and have intense feelings of inner turmoil and misery
• Concern with attractiveness
• Progression of personal identity
• More stable body image; attractiveness may remain important
Family and peers• Beginning of emotional separation from parents and early effort toward independence
• Need for privacy
• Beginning of strong same gender peer identification and affiliation
• Further emotional separation from parents and family
• Struggles and conflicts over autonomy
• Strong peer identification and involvement
• Separation from family emotionally and physically
• Peer group/peer values begin to diminish in importance
• Formation of stable relationships with increasing involvement of love and commitment
Sexual• Examination of own sexual feelings
• Progression of sexual identity development & orientation
• Questions of sexual orientation
• Initiation of sexual relationships (often superficial)
• Sexual experimentation
• Aware of risks of pregnancy and sexually transmitted diseases, but may not consistently act upon the knowledge
• Consolidation of sexual identity
Relationship to society• Adaptation to middle/early secondary school years• Assessment of skills and opportunities
• Early educational and/or vocational plans
• Realistic role models critically important
• Career decisions central
• University/college/vocational experience with increased self-responsibility
• Progression of workforce capability and financial independence
 
Suggested subjects to explore and discuss at clinic visits• Introduce concept of private confidential visits to parents and patient
• Simple directed interactive questions to patient
• Straightforward interactive counseling
• Discuss healthy lifestyle choices
• Enquire about friends, free time activities, home life, school
• Ask in non-threatening, non-judgmental manner about experimentation with drugs, alcohol or sexual activity and about any trouble with the law
• Discuss healthy living
• Discuss healthy living habits and personal interventions for improving overall wellness
• Identify unhealthy living habits and their consequences
• Build upon questions from earlier age ranges (left of table)

There is widespread consensus that preparation for transition needs to begin early, usually between 10 and 14 years of age. Some recommend it be initiated shortly after diagnosis, to foster progressively autonomous care (11,15,16). However, timing should be individualized, according to the adolescent's neuro-cognitive and development status and the family socio-demographic characteristics. Transition may also continue after transfer, until the young adult is fully assimilated into adult care.

Tasks for the Pediatric Transplant Team

A health care provider responsible for transition coordination and health care planning is needed for all adolescent transplant recipients. A written health care transition plan should be created together with the young person and family (9). Examples of critical tasks and milestones to achieve prior to transfer are described in Table 3. Although no standardized transition preparedness instrument has yet been rigorously evaluated, an assessment of transition readiness based on the goals of Table 3 may be helpful. It can be communicated to adult providers at transfer and incorporate areas in need of attention, including individualized information about methods most successfully used to optimize immunosuppressive medication adherence. Patients should be provided with a portable concise, up-to-date summary of their medical/surgical history and medications (9).

Table 3.  Critical milestones for patients to achieve prior to transfer to adult care
• Understanding of and ability to describe the original cause of their organ failure, need for transplantation
 ○ initial education may have been primarily provided to their parents; repetition is necessary to ensure they understand their condition
• Awareness of the long and short-term implications of the transplant condition on their overall health and other aspects of their life (e.g. infection prevention, cancer surveillance, academic and vocational aspirations)
• Comprehension of the impact of their illness on their sexuality and reproductive health, including
 ○ the impact of pregnancy on their own wellbeing
 ○ the effect of their medications on fertility
 ○ any potential teratogenicity of their medications
 ○ the role of genetic counselling, and genetic risk of their disease recurrence in future offspring, if pertinent to their condition
 ○ their own increased susceptibility for sexually transmitted disease
• Demonstration of a sense of responsibility for their own healthcare
 ○ knowledge of the names, (and shapes/colors), indications and dosages of their transplant and ancillary medications (or carry this
   information in wallet/purse)
 ○ call for their own prescription refills and renewals
 ○ prepare their own medication dose boxes, if not done by their pharmacist
 ○ independently communicate their health care needs to their providers
 ○ know when and how to seek urgent medical attention, including health emergency telephone number(s)
 ○ ability to make, keep a calendar of and follow through with their own health care appointments
 ○ understanding of their medical insurance coverage and eligibility requirements
• Capacity to provide most self-care independently
• An expressed readiness to move into adulthood
• Ownership of their medical information in a concise portable accessible summary

Chronic organ failure (be it heart, kidney, intestine, liver or lung), from an early age may at times be associated with major delays in development and intellectual function. Emotionally and cognitively challenged adolescents need opportunities to develop skills in problem solving, goal setting and self-advocacy. Even those with significant impairment can usually make simple choices, such as which pill to take first, and perform simple tasks. They should be provided with a meaningful medical summary, which may include pictures, tape-recordings and other non-written forms of communication (17). Since they may require a longer period of preparation, flexibility is important. Where necessary, resolution of guardianship issues should occur before their eighteenth birthday. Formal legal arrangements, such as curatorship or surrogate decision makers for patients with limited decision-making capability, may be necessary to avoid future conflicts, and continuity of a stable support system often requires involvement of community resources.

Preparing the patient's parents

Because of guilt or fear, parents of transplant recipients may be reluctant to set limits or push their children to do age-appropriate tasks. Pediatric providers need to encourage them to promote independence and self-responsibility, guide them on the developmental tasks of childhood and adolescence, and present them with concrete ideas, such as home chores, medically appropriate after-school activities and part-time jobs. They should stress the importance of the child's involvement in scheduling appointments, preparing medications, calling for refills and meeting with clinic providers independently. This is embodied in a parenting model of leadership transition, beginning with parents as caregivers (‘CEO's of care’) then ‘managers’, ‘supervisors' and ‘consultants’, as their children mature and become progressively more autonomous (15). It is illustrated in Table 4. Because patients with endstage renal disease often need a period of dialysis prior to transplant, recommendations for the child's participation in this area of treatment are also included. In addition, parental modeling of healthy lifestyle behaviors is fundamental (13).

Table 4.  Approach to development of child and adolescent leadership/self management skills
Stage/ageChild capabilities/actions forming basis for leadership skillsParent leadership actions supporting child/youth's increasing capabilities
  1. Adapted from (15, 25).

Toddler (1–3 year)• Cooperate with routine treatment and accept treatment constraints with limited acting out
• Understand firm limits of parents
• Develop rituals for treatment so child knows what to expect and can learn by repetition.
• Identify possible treatment roles to share with child.
Parent as ‘CEO’• Help hold equipment and supplies (e.g. oral medication dispensers, enteral feeding or home dialysis supplies)• Emphasize hygiene in prevention of infection (e.g. hand-washing, teeth cleaning, safe handing of pets).
Preschool (4–5 year)• Participate further in self-care (e.g. helping gather supplies for treatment such as medication dose boxes, dialysis supplies, self-catheterization
• Medical play,e.g. nurse or doctor kits, doll that undergoes similar treatments to patient (e.g. venipuncture, peritoneal dialysis, feeding tube, etc)
• Acknowledge child's need for control over his/her body by explaining in simple concrete terms what will happen at clinic/hospital visits.
• Set fair and appropriate limits (e.g. taking medication on time, teeth brushing, dietary and fluid requirements, infection prevention strategies).
Child begins to learn basic self care• Begin to identify body parts important to early identification of a problem or treatment (e.g. site of allograft, indwelling catheter tract and exit site)
• Learn name of his/her health condition (e.g. heart, kidney, liver transplant, etc)
• Learns simple terms for transplant related problems and medication side-effects (e.g. for feeling unwell, nausea, painful urination, skin lesions)
• Allow choices (where appropriate); e.g. which medicine to swallow 1.
• Model acceptance of management routines and limits (as above, plus applying sunscreen, precautions with pets and with swimming water)
• Encourage flexibility in treatment so child experiences multiple ways to accomplish same goals
• Reassure child he/she is not to blame or being punished when receiving treatment that causes discomfort (e.g. injections, blood drawing)
Early school age (6–9 year)• Recognize 1–2 major internal body cues of a problem (e.g. fever, abdominal pain, graft pain, dysuria, swelling)
• Participate actively in concrete care and monitoring of condition (e.g. oral hygiene, prescribed fluid intake, recording medications on personal medication record)
• Continue to label body cues and reward recognition
• Begin to negotiate with child what each party will do for management of condition and ‘rules' for working together to get all treatment done (e.g. taking medication on time in parent's presence, required fluid intake)
Child provides some self care• Increase concrete level of understanding of the transplant or dialysis condition, cause of original organ failure, requirements of treatment• Encourage healthy living (regular exercise, healthy food choices)
• Support normative activities (sports, other organized activities) to encourage fitness, teamwork and sense of achievement
• Model telling others about the medical condition
• Discuss approach to telling teachers, friends, and coaches about the disorder, and the amount of detail necessary to share
Early adolescence (10–13 years)• Increase understanding of the transplant condition, its affect on daily life and long-term health needs
• Learn signs/symptoms of transplant organ rejection
• Help child/adolescent grow in understanding of transplant condition
• Provide tools so child can self manage (e.g. notebook and/ or agenda for record keeping of treatments, medication taken)
Parent becomes ‘manager’ versus ‘CEO’• Begin to discuss symptoms and issues with health care providers, initially in parents' presence• Shadow or observe the performance closely, in order to offer immediate corrective feedback
Adolescent performs greater self care and progressively some self-management• Develop and independently complete specific set of medical self management tasks (e.g. use of alarm watch to help remember fluid and medication schedule, agenda with appointments and tests, learn medication names, doses and times and allergies)
• Prepare medication dose boxes, with parental supervision
• Learn how and when to respond to peer pressure and yet still take care of self
• Remain present for adolescent and involved in care, decision-making and monitoring.
• Be there for new symptoms, changes in treatment and emergencies
• Ensure child has told important others (e.g. friends, teachers, coaches) of his/her transplant and what assistance they could provide if needed.
• Further encouragement of healthy living and normative activities as above.
Mid adolescence (14–16 years)• Achieve more abstract knowledge of treatment requirements and complication prevention
• Develop further understanding of transplant organ rejection, why signs and symptoms may be minimally apparent, even with significant organ injury
• Negotiate and renegotiate who does what.
• Discuss new issues (e.g. sex, drugs and alcohol) particularly as they relate to peer group activities/pressures and any special effects on transplant condition.
Parent becomes ‘supervisor’
Adolescent becomes
main ‘manager’ of daily routine care
• Develop strategies to insure completion of necessary routine management tasks, e.g. taking medication on time (alarm watch, cues linked to daily routine)
• Learn roles of each of medication, major side effects, and consequences of taking them irregularly Know where there can or cannot be flexibility; be able to enact it appropriately
• Participate in appointment making
• Be able to effectively ask for assistance in complex situations
• Read books, pamphlets or internet to learn more about transplantation and the underlying condition that originally lead to their organ failure
• Begin to discuss vocational and educational aspirations, and insurance issues.
• Encourage community involvement (club, volunteer work, extra-curricular activity groups).
• Consider adolescent's participation in limited part-time or summer employment.
Late adolescence• Achieve sense of self as capable manager of the transplant condition
Refer to critical milestones to achieve prior to adult care transfer (Table 2)
• Develop flexible way of communicating with the adolescent to remain informed but not interfering.
Parent becomes ‘Consultant’ and resource person to
adolescent
• Integrate realities of transplant care with the invincible nature of their peers
• Appreciate the benefits that constraints of transplant management allow
• Continue to develop more independent clinic and community support network with transition to adult based services
• Make commitment to lifetime of treatment
• Remain present for support and problem solving.
• Provide encouragement and guidance as the youth transitions from pediatric to adult care services.
• Encourage vocational, college or university training and/or integration into the work force.

Helping the pediatric teamLet Go

The close bond often present between the pediatric transplant team and patient/family may be difficult to sever. The pediatric team may fear that neither the patient nor the adult transplant team is ready and that the adolescent patient may fall through cracks in the system. An attitude of ‘mistrust’, even if not explicitly stated, may be transmitted to the patient and family, creating barriers for the new adult providers to overcome. By working collaboratively with the adult team to understand their needs and constraints, by creating opportunities for ongoing contact after transfer of care, sharing treatment protocols to minimize treatment variation and assisting adolescent patients access to resources that will help them succeed in the adult system, these concerns may be diminished. Ideally, pediatric transplant centers would have affiliated adult transplant sites that receive their transitioning patients.

Challenges for Adult Transplant Team

The adult transplant practice frequently carries a patient load at least 5–10 fold greater than that of the pediatric transplant clinic. The pace is fast and the turnover rapid. On the whole, the adult world of transplant care assumes the person in front of them can remember rapid-fire instructions, come prepared with questions, express concerns and directly discuss treatment plans. Adolescents may not fit this adult prototype and may mistakenly feel the adult physician does not understand or care (18). To improve this dynamic, communication and orchestration are required. The pediatric transplant team needs to be familiar with procedures at the adult centre(s) to which they refer their patients, and appropriately prepare the adolescent for the changes in practice style.

Adult practitioners may benefit from cultivating partnerships with their pediatric colleagues and participation in bi-directional information sharing. They may need to learn about care of adolescents at various developmental levels, the impact of childhood chronic disease on development and management of childhood causes of end-stage organ failure and congenital diseases not often seen in an adult practice (8,9,11,19). Ideal adult site resources for transitioning organ recipients, in addition to transplant physicians and surgeons, are a dedicated transfer liaison person, nurse coordinator, social worker with expertise in needs of youth, reproductive specialist and urologist proficient in congenital urologic malformations. Champions, sensitive to adolescent ambivalence and with an understanding of the patient's history, could help orient the young person to adult clinic rules, facilitating their care. Direct questioning about the adolescent's feelings and concerns, and discussion of issues relevant to their lifestyle are important. These include sexuality, pregnancy, relationships, mental health, recreational activities, vocational and educational choices, and health care system expectations (8,16). Where possible, peer support groups started at the pediatric center should continue after transfer.

Integration into the Adult World

Primary and preventive health care

Partnerships with primary care providers should be established well in advance of transfer and patients and their families prepared for their appropriate utilization (9,19). There should be communication with both patients and providers about transplant specific guidelines for issues such as reproductive health care, cancer screening, immunizations, infection risks of everyday life, dental health and perils of high risk behaviors. Guidelines for primary and preventive care for all adolescents and young adults should be applied, recognizing that those who have undergone transplantation require more resources and services than others their age.

Education, vocational training and workforce integration

Integration into the workforce is important for self-esteem and social benefits. Timely performance of appropriate aptitude assessments during posttransplant care may help establish reasonable goals and expectations for pediatric and adolescent solid organ recipients. Some may have missed a great deal of school prior to their transplant, because of hospitalizations, frequent clinic visits and fatigue or general malaise. Renal transplant recipients may have endured the additional burden of long hours of dialysis, potentially impacting both their schooling and psychosocial development. Sustained school absenteeism prior to transplant may create subsequent challenges for reintegration into mainstream education with their peers. Creation and fostering of links with schools and the community may assist in their educational and vocational planning, and maintenance of appropriate education for them during the pretransplant period (16). Many pediatric and adolescent transplant recipients have the potential to succeed academically and/or vocationally, and to become gainfully employed. There is a need to lobby for vocational program resources and educational opportunities to meet their unique needs.

Non-adherence

Organ transplant patients, regardless of age, must adhere to life-long immunosuppressive therapy, in addition to other aspects of their treatment regimes. Nonadherence jeopardizes their health, transplant organ function and quality of life, and may lead to graft loss, increased health care costs and untimely death (2,4,10,20). Non-renal organ recipients, having no dialysis alternative, are at particular risk. Adherence is influenced by socio-economic, patient, disease, health care setting and provider-interrelated issues and dynamics. Minimization of non-adherence requires targeting of modifiable risk factors and integrating medical, educational, behavioral and social support strategies, throughout transition and beyond (4). Strategies that may help limit transplant medication non-adherence for adolescents and young adults are listed in Table 5 (4,20).

Table 5.  Strategies to improve medication adherence among adolescents and young adults
  1. Adapted from (4, 20).

(1) A trusting, collaborative and open relationship that encourages dialogue between the youth and transplant health professional
(2) Stepwise education regarding the treatment regimen, including purpose, names, dose, schedule and side effects of
   prescribed medications
 ○ enhance with booklets, pamphlets, videos, humor and non-verbal materials (e.g. medication labels and cartoon diagrams).
 ○ assess comprehension
(3) Behavioral strategies
 ○ simplify the medication regimen.
 ○ tailor the medication schedule to individual patient's lifestyle.
 ○ prescribe more ‘forgiving’ medications with longer half-lives.
 ○ recording of medication intake on calendars or pocket computers.
 ○ dose container aids.
 ○ wristwatch or mobile phone alarms.
 ○ linking of medication to daily routine cues such as meals, brushing teeth, shaving, etc
(4) Structured clinical and social network support
 ○ more frequent clinic/nursing visits.
 ○ system for open communication with transplant clinic staff, such as internet, email and phone.
 ○ health care provider continuity.
 ○ peer group support and mentoring.
(5) A clinic environment that is welcoming to young adults and adolescents
 ○ relevant educational and age appropriate reading material and diversional activities (computer, internet, etc).
 ○ youth friendly decor.

Systems Issues

Health and medication insurance

Patients and providers need to be alerted to insurance and health care service implications of transition into adulthood. To prevent lapses in care or provision of prescription medications, patients should apply early for insurance and special services requiring conversion. Young adults have the lowest health insurance rate of any age group from 0–64 years (1). Promotion of public policy initiatives are needed to ensure problems with access to insurance and other services do not engender disincentives for transfer to adult care (21).

Transition clinics

A number of subspecialty disciplines have advocated adolescent to adult transition clinics, in a variety of forms (8, 12, 16). They include the adult specialty physician or nurse meeting the adolescent in the pediatric clinic prior to transfer, a pediatric team member accompanying the patient to his/her first adult site visit, overlap/alternating visits between the pediatric and adult sites and fully shared adolescent-adult clinics (19).

An attractive model is a joint young adult and adolescent transplant clinic staffed with pediatric and adult transplant physicians, nurses and a social worker, with other health professionals available as needed. It would create opportunities for interaction, role modeling and mentoring and provide additional support to transplant recipients in their ‘invisible early twenties' a demographic twilight zone, no longer pediatric but not fully participatory and integrated into adult care (12). Ideally, it would have an upbeat youthful ambience, with young adult reading material, particularly of health care educational value and youth friendly diversional activities (e.g. computers, internet access). By making visits (and waiting time) more positive and enjoyable, a joint clinic could potentially improve treatment adherence. It can sometimes be disconcerting for young transplant recipients to be in a waiting room where many patients are very much older, and, at times, in significantly poor physical condition.

If a transition clinic is not feasible, other options include an adult site transplant transition coordinator potentially shared with other specialty services, and the scheduling of age-related transplant recipients together. For the adolescent residing far from a transplant centre and who is transferred to an adult private office setting, an on-site designated primary contact person would be helpful.

Transition policy and health care systems

Although national, local, hospital and payer policies may influence timing of transfer of care, the decision should ideally be collaborative, involving the patient, family and pediatric and adult health care providers. Patient safety, availability of services and continuity of care are paramount. Patient-specific characteristics rather than strict institutional policy need to guide the process, with patients medically stable at time of transfer and no newly diagnosed co-morbidities or active rejection episode (11,19). There was general consensus that pediatric follow-up after a transplant close to the age of transfer should be for a minimum of 1 year. A patient in a terminal phase of illness should not be transferred.

Assessment of outcome

Evaluation of transition outcomes in individual programs is central to quality assurance. A systematic mechanism is required to assure prespecified follow-up and outcome data are obtained post transfer. This may involve consent forms at the time of transfer. Compilation of data reflecting regional, national and international outcomes is also needed.

Resource allocation

The potential cost of transition programs may appear ostensibly high. However, it is important to view the issue in a larger context. A major transplant transition program goal is to optimize likelihood of sustained well-being in young recipients and enhance their prospect of achieving their physical, psychological and social potential. Poorly planned transition likely increases the risk of graft failure. The latter leads to higher healthcare costs, diminished ability to perform activities of daily living and be gainfully employed, and augmented use of scarce resources, such as organs for retransplant (3). An initial investment in transition program development may lead to important long-term gains. This is clearly an area of major transition research importance (19).

Research Opportunities

Anecdotal evidence supports the need for more effective transition programs but there are few published reports on systems and results for pediatric organ transplant recipients transitioning to adult care. Studies are needed to identify factors and interventions that affect transplant outcomes in young adults, guide best practices and assist in policy development. Adolescent and young adult graft survival is typically worse than that of other age groups. Although most commonly ascribed to non-adherence, supporting data are limited and further exploration is warranted. Work groups with shared interests in transition need to be formed, potential funding mechanisms identified and plans created for knowledge translation. Preliminary retrospective exploration to help direct future research is recommended. Information from existing administrative data sources and national registries could provide preliminary facts and figures. By harnessing advances in medical informatics, existing pediatric organ transplant registries could be linked to those of adults, permitting longitudinal analyses focusing on hard outcomes, such as late acute rejection, graft and patient survival, and where data are available, change in graft function. Prospective studies could be guided and inspired by the data generated. Table 6 lists several prospective research questions and topics.

Table 6.  Potential areas of prospective research in adolescent transplant recipient transition to adult care
1. Can a formal transition program improve medical and psychosocial outcomes?
 • Examples: graft/patient survival, graft function, early and late acute rejection rates, general health, use of preventative health
   practices, treatment adherence, disease knowledge, educational/vocational outcomes, rehabilitation and independent living, quality
   of life and patient and provider satisfaction.
2. Which specific transition elements are most important to impact outcome; how are they best implemented?
3. How can one best assess adolescent readiness for transition to adult transplant care?
 • Can a practical reproducible predictive ‘Transition Readiness Assessment Tool for Adolescent Transplant Recipients' be developed?
4. What do patients and families need to facilitate transition? (Qualitative research)
5. Development and validation of instruments to assess transition readiness and decision making capacity.
6. Transition cost analysis including:
 • Cost of graft failure: its impact on subsequent medical care costs, the patient's ability to perform activities of daily living and be
   employed.
 • The use of scarce resources, such as organs for re-transplant.
 • Transition program cost.

Summary

With the remarkable success in pediatric organ transplantation over the past few decades, progressively increasing numbers of children with previously fatal disorders are reaching adulthood and moving into the realm of adult care. They remain dependant on life-sustaining and potentially complex treatment. Their effective transition to adult care requires early coordinated interdisciplinary planning. The committed involvement of the pediatric and adult transplant teams and the patient/family unit are critical for success. Community resources are often indispensable. Education and training in the area of transition are needed for both adult and pediatric health care providers, adequate resources must be provided and medical/drug insurance issues effectively addressed. A resume of these issues and tasks is provided in Table 7. Research on best practices and outcome analysis are needed. These are stimulating challenges, and in the struggle to overcome them, we must not lose sight of the fact that transition is an event to celebrate.

Table 7.  Issues and tasks in transition
7a. Tasks for pediatric transplant team
• Designated transition coordinator
• Written health care transition plan for each patient and their family
• Checklist of critical tasks and milestones to achieve throughout childhood and adolescence, and prior to transfer
• Preparation of parents
 - guidance on age appropriate developmental tasks and the progressive responsibility of their child and adolescent for his/her own
     health care and social functioning
• Promotion of educational and vocational planning throughout childhood and adolescence
• Guidance for patient and family regarding health and drug insurance, well prior to transfer
• Standardized assessment of readiness for transfer
 - communication of this assessment and areas in need of attention to adult providers at time of transfer
• Up-to-date concise health summary (‘passport’) for each patient
• Developmentally challenged adolescents
 - adapted tasks and transition schedule
 - addressing of guardianship and consent issues significantly in advance of 18th birthday
 - provision of their own meaningful medical summary adapted to their level of functioning
• Collaboration with adult transplant team regarding their expectations, clinic set-up and clinic protocols
• Communication and education of primary care provider regarding care beyond the norm for the young adult transplant recipient
 
7b. Tasks for the adult transplant team
 
• Partnership with paediatric team for bidirectional information exchange on practices, protocols, treatment plans
• Education on developmental stages of adolescents, the impact of chronic disease on timing of these stages, and on management
    of congenital and childhood onset chronic diseases in adulthood
• Adult site resources
 - the minimum: transfer liaison person, nurse coordinator, dedicated social worker
 - optimal: in addition to above, dedicated urologist with proficiency in congenital urologic malformations, reproductive specialist,
    psychologist, dietician
 - young adult designated clinic area and/or clinic day
 
7c. Systems issues
 
• Primary and preventive health care
 - establishment of partnerships with primary care providers and referral of patients to them well in advance of transfer
 - education of primary care providers and patients on transplant specific health care guidelines, such as reproductive health,
    cancer screening, immunizations, dental health, and high risk behaviors
• Mechanisms for joint meetings of adult and paediatric teams
• Process and procedures for follow-up of outcomes of adolescent patients after transfer to adult care for both quality assurance
    and care improvement
• Educational tools
 - self learning: web based, DVD, podcasts; printed manuals
 - continuing education conferences
 - component of residency/fellowship training (both adult and paediatric)
• Consideration of requirement for appropriate transition program as a component of accreditation of paediatric and designated
    adult transplant programs
• Timing of transfer
 - complement or coincide with other age related milestones (finishing high school, going to college or university,
    moving out of parental home, beginning to work)
 - flexibility to take into consideration individual patient readiness, medical, social and emotional stability

Appendix

Planning Committee

Chair

Lorraine Bell MD, McGill University Health Centre-Montreal Children's Hospital, Canada

Co-Chair

Sharon Bartosh MD, University of Wisconsin Children's Hospital, USA

Members

Amira Al-Uzri MD, Oregon Health Science University, USA

Mark M Boucek MD, Joe DiMaggio Children's Hospital, USA

Jeremy R. Chapman MD, Westmead Hospital-Sydney University, Australia

Vikas R. Dharnidharka MD, University of Florida HSC, USA

Albert Faro MD, Washington University School of Medicine, USA

Kathy L. Jabs MD, Vanderbilt University Medical Center, USA

Stuart Sweet MD PhD, Washington University, USA

Susan Thomas MD, University of Michigan Health System, USA

Steven A. Webber MD, Children's Hospital Pittsburgh UPMC, USA

Sue V. McDiarmid MD, University of California - Los Angeles School of Medicine, USA

Conference Workgroups:

Group A – Tasks and Challenges for the Pediatric Transplant Team

Facilitators

Amira Al-Uzri MD, Oregon Health Science University, USA

Mark M. Boucek MD, Joe DiMaggio Children's Hospital, USA*

Participants

Walter S. Andrews MD, University of Missouri, USA

Angela M. Burns BScN, McGill University Health Centre - Montreal Children's Hospital, Canada

Sandra M. Cockfield MD, University of Alberta, Canada*

Miriam Kaufman MD, Hospital for Sick Children, Canada*

Beverly Kosmach-Park MSN CRNP, Starzl Transplant Institute - Children's Hospital of Pittsburgh, USA

Debra Lotstein MD, University of California Los Angeles, USA*

Michael R. Lucey MD, University of Wisconsin Hospital and Clinics, USA*

Margaret Richards MS MSN CRNP, Children's Memorial Hospital, USA

Mirna M. Seifert-Hansen BScN, Hospital for Sick Children, Canada

Laura J. Stabile MSW, Children's Hospital of Pittsburgh, USA

J. Richard Thistlethwaite MD PhD, University of Chicago Medical Center, USA

*Conference speakers

Group B – Tasks and Challenges for the Adult Transplant Team

Facilitators

Connie L. Davis MD, University of Washington, USA*

Vikas R. Dharnidharka MD, University of Florida HSC, USA

Participants

Patricia E. Birk MD, Manitoba Renal Transplant Program, Canada

Patrick Flume MD, Medical University of South Carolina, USA*

Emily M. Fredericks PhD, University of Michigan Health System, USA

Donna H. Harward, BA, University of North Carolina Chapel Hill, USA

Narine M. Heywood MSc AN, Royal Victoria Hospital Site - McGill University Health Centre, Canada

Kathy L. Jabs MD, Vanderbilt University Medical Center, USA

Joan Lokar MSN, PNP, Children's Memorial Hospital, USA

Suzanne MacDonald, MD, McGill University Health Centre - Montreal Children's Hospital, Canada*

Corinne McCurdy BScN MSC, Toronto General Hospital, Canada*

Nancy C. Poirier MD, Hôpital Ste Justine, Canada

Elizabeth B. Rand MD, Children's Hospital of Philadelphia, USA

Elizabeth Thomas-Colwell MSW, Children's Memorial Hospital, USA

*Conference speakers

Group C – System Issues

Session Facilitators

Lorraine Bell MD, McGill University Health Centre - Montreal Children's Hospital, Canada*

John Reiss PhD, University of Florida Institute for Child Health Policy, USA*

Participants

Craig Becker MD, University of Wisconsin Children's Hospital and Clinics, USA*

Maria E. Ferris MD MPH, PhD (c), University of North Carolina Chapel Hill, USA

Vicki L. Fioravanti RN CCTC, Children's Mercy Hospital, USA

Bethany J. Foster MD MSCE, McGill University Health Centre - Montreal Children's Hospital, Canada

John Gill MD MS, University of British Colombia, Canada

S. Paul Hmiel MD PhD, Washington University - St. Louis, USA

John Magee MD, University of Michigan Health System, USA*

Janet McDonagh MD, Birmingham Children's Hospital, United Kingdom*

Philip Rosenthal MD, University of California - San Francisco, USA

Mark A. Schnitzler PhD, St. Louis University, USA*

Jeff Stein MD, Yale University School of Medicine, USA

Frederic Strife MD, Cincinnati Children's Hospital Medical Center, USA

Elizabeth Tuttle-Newhall MD, Duke University/United Network of Organ Sharing Pediatric Committee, USA

*Conference speakers

Group D – Integration into the Adult World: Vocational, Educational and Primary/Preventive Health Care

Session Facilitators

Sharon Bartosh MD, University of Wisconsin Children's Hospital, USA*

Stuart Sweet MD PhD, Washington University, USA

Participants

William Applegate, Armstrong Teasdale, LLP, USA*

Rebecca Bathon MSW, Barnes-Jewish Hospital, USA*

Thomas D. Blydt-Hansen MD, Children's Hospital of Winnipeg, Canada

John Bucuvalas MD, Cincinnati Children's Hospital Medical Center, USA

Karina Danner-Koptik MSN, Children's Memorial Hospital, USA

Daphne T. Hsu MD, Columbia University, USA

Kathy A. Martin MN (ACNP), Hospital for Sick Children, Canada

Sylvia Ramirez MD MPH, Ann Arbor University Renal Research and Education Association, USA*

Sherrie Rodgers MSN CPNP, Children's Memorial Hospital, USA

Lynette L. Rosser MSW, Children's Hospital of Pittsburgh, USA

Cindy Sommers, United Network of Organ Sharing, USA

Gina Sucato MD MPH, University of Pittsburgh, USA*

Sandra Watkins MD, University of Washington, USA

Patience White MD, George Washington School of Medicine and Health Sciences, USA*

*Conference speakers

Group E – Ethics and Transition

Session Facilitators

Estella M. Alonso MD, Children's Memorial Medical Center, USA*

Steven A. Webber MD, Children's Hospital Pittsburgh UPMC, USA

Participants

Samantha J. Anthony PhD(c) MSW, Hospital for Sick Children, Canada

Maria-Jose Clermont, MD, Hôpital Sainte Justine, Canada

Fabienne Dobbels PSY PhD, Katholieke Universiteit Leuven, Belgium*

Alison Drabble RN, Hospital for Sick Children, Canada

Richard N. Fine MD, State University of New York, Stonybrook, USA

Aviva M. Goldberg MD, Children's Memorial Hospital, USA

Amy E. Hauser BSN MBA MHA, Children's Health Care of Atlanta, USA

Martha S. Markovitz, MSW, LCSW, St. Louis Children's Hospital, USA

Mignon McCulloch MD, Red Cross Children's Hospital, South Africa*

Lynn M. Seward RN, CCTC, Children's Hospital of Pittsburgh, USA

*Conference speakers

Sponsors

American Society of Transplantation (AST)

Canadian Society of Transplantation (CST)

International Liver Transplantation Society (ILTS)

International Pediatric Transplant Association (IPTA)

International Society for Heart and Lung Transplantation (ISHLT)

The Transplantation Society (TTS)

United Network for Organ Sharing (UNOS)

Ancillary