Section 12: Transition from pediatric to adult care

This article is related to:

Pediatric home mechanical ventilation: A Canadian Thoracic Society clinical practice guideline executive summary

Introduction

With improvements in care and technological support, increasing numbers of children on long-term ventilation are now surviving into adulthood. At some point in the child's life, ongoing care in a pediatric environment ceases to be desirable or optimal, and transition to an adult care program therefore becomes necessary. Transition has been defined as the “purposeful, planned movement of adolescents with chronic medical conditions from child-centred to adult-oriented health care.”¹ Transition to adult care is a major and predictable event in the child’s life, one that requires careful consideration and planning.

To ensure a smooth transfer of the child’s care that ensures all the child’s ongoing needs are met (not just medical, but emotional and social), many components need to be in place in both the pediatric and adult health systems. Otherwise, there are significant risks that this transfer may be associated with significant patient and family anxiety, reduction in adherence to treatment or loss to follow-up, resulting in a deterioration in health status. Although we were unable to find any studies specifically addressing this issue for children on home mechanical ventilation (HMV), there is a significant literature dealing with transition of care in to adulthood for many other chronic childhood illnesses.^1–10 Position statements from the Canadian Paediatric Society⁸ and American Academy of Paediatrics,⁹ although not specifically directed towards HMV, do have sufficient commonality to inform the care of patients on HMV. Most of the literature in this area consists of qualitative, observational studies and consensus statements, with relatively little objective evidence with respect to effectiveness of differing models of transition.¹¹ There is a growing consensus on the components required for transfer to adult care, though a paucity of objective data.

Literature review

A systematic search of the literature from 1946 to March 2014 was conducted in the following databases: PubMed, Medline, Embase, AMED. MeSH terms and keywords used captured the concepts “transition” and “adult care.” The search was limited to all children 0–18 years, in English only. A follow-up literature search, until August 24 2015, was performed to update the references. A total of 1807 citations were captured, none of which specifically dealt with patients on home ventilation. A total of 116 articles with relevant titles or abstracts (deemed to concern transition of children with chronic conditions to adult care) were reviewed by the authors in more detail. Results of this literature review are presented in the subsequent text and in Table 1.

Table 1. Literature search results: Making the transition to adult care.

Author (Year)	Study type	# of pts.	Outcome 1	Outcome 2	Outcome 3	Outcome 4
McManus^30	Survey (National) 2009 –10 Families of Youth with Special Health Care Needs (YSHCN)	17,144	Only 40% surveyed met guidelines, with only 44% caregivers discussing transition/planning for transition to adult care	N/A	N/A	N/A
Reiss (2005)^24	Qualitative (focus groups) individual YSHCN	143	N/A	Paucity of experienced caregivers/marked divergence in treatment approach	Little reported communication	N/A
Patel (2010)^15	Survey pediatric and internal medicine residents	107	13.8% internal medicine residents received transition training, uncomfortable in caring for "adolescent" diseases	N/A	N/A	N/A
Stam (2006)^12	Survey YSHCN patients	650 patients, 508 controls	Patients delayed milestones vs. controls	N/A	N/A	N/A
Pape (2013^31	Comparative (nonrandom) adolescents post renal transplant transferred to 3 different adult care models	66	N/A	N/A	N/A	Specialized transition clinic had fewer changes in care, greater patient satisfaction compared to adult nephrologist or general transplantation clinic care
Oswald (2013)^32	National survey of previously identified YSHCN	1,910 of 10,933 previously identified	N/A	N/A	N/A	Only 21.6% made successful transition. Those with successful transition more likely to report same or better health status.
Nakhla (2009)^20	Longitudinal follow-up adolescents with diabetes mellitus until aged 20	1507	N/A	N/A	N/A	Increased risk of hospitalization vs. those ongoing follow up by current MD.

Outcome 1. Adequacy of education and preparedness for transition to adult healthcare.

Outcome 2. Availability of care/adequacy of receiving practitioner's knowledge and training.

Outcome 3. Adequacy of communication between pediatric and adult-orientated care.

Outcome 4. Impact of poor transition.

Discussion

Issues identified that need to be considered in the transfer process include:¹⁰

Level of preparedness of the adolescent

The transition from adolescence to adulthood is a gradual process, the rate of which varies from one individual to another, hopefully leading towards individual independence over a period of time. The transfer to adult care at 18 years of age is therefore relatively arbitrary. The developmental stage (maturity) and ability for self-care by the patient, which may be impeded as a consequence of their underlying disease, is critical.¹² Care in an adult center generally requires the ability and desire for independent control and direction of their own care. Some patients are intellectually and emotionally mature, and hence not only able, but actively seek this role long before age 18, whereas others may have difficulty assuming this role even well into adulthood. Consequently, it has been suggested that transition should not occur at a specific age, but rather anywhere between 17 and 20 years of age, depending upon the level of preparedness of the patient.¹⁰ This process therefore needs to be considered as a continuum, tailored to meet the patient’s individual needs and abilities, while preparing them for the changing roles and expectations to be met in an adult-orientated care setting.¹³ As adolescence approaches, developmentally appropriate care therefore needs to be integrated into the child’s care plan, allowing them to have an increasing role in their care, preparing them for the transition. Adolescents, their families and healthcare providers must work together to develop a transition plan aimed at fostering health-promoting behaviors and adherence with care. This process needs to continue even after they have moved into the adult-oriented healthcare system.

Level of preparedness of the system

There are often significant differences between pediatric versus adult-oriented healthcare systems, particularly in terms of the type and level of psychosocial supports, decision-making and consent processes, and family involvement.¹⁴ Pediatric care is often regarded as being more “supportive,” with caregivers having a more active role in ensuring both adequate follow-up in clinical care but also ongoing adherence with treatment. It is also family-focused and relies, at least initially, on significant parental involvement in decision making, with care including both the family and the interdisciplinary team. This, perforce, is fairly resource-intensive. Conversely, the expectation in adult care centers is that provision of care is much more patient-driven. The presumption is that the patient themselves will be the primary driver of their care, with discussion around treatment plan and obtaining necessary consent usually being patient-centered, with limited family involvement. Similarly, issues around sexuality, career planning and future independence may not have previously been addressed routinely in the pediatric care environment. Other issues to be considered are:

1. Availability of knowledgeable healthcare providers

   1. In the adult tertiary care center: Children on home ventilation frequently suffer from diverse ailments which previously would have been fatal during childhood. Consequently, adult healthcare providers are now assuming the care of a group of young adults who not only have needs outside of their usual experience, but also suffer from disorders with which they may have limited experience.¹⁵

   2. In the community:

      • Primary healthcare providers: As a rule, children with complex, chronic care needs are often cared for in the community by pediatricians. Thus, coincident with transfer to an adult program at a tertiary care center, there also is frequently a simultaneous transfer of community-based care to a general practitioner (if one can be found willing to take on the patient’s general care¹⁶), adding to the family’s stress, and risk of errors in transfer of information and loss of follow up.

      • Community support resources: Over time most families have learnt to maximize available supports (both financial as well as personnel) to allow them to care for their child in the community. Achieving adulthood can also result in changes to the availability of government-provided community supports, requiring the patient and family to learn to deal with a whole new set of rules and bureaucracy.

2. Availability of technical resources: This is greatly dependent upon the precise medical needs of the patient, as well as their intellectual abilities and ability to self-care. New technologies may be required in order achieve independence, with the patient and their caregivers faced with the task of identifying what is the most appropriate technology available to meet this goal, and how to obtain it within the new system.

Level of preparedness of the family

To be successful, both the adolescent and their family need to be prepared for the transition. Parents of children on HMV are commonly required to be the primary advocates for their child’s care. Consequently, they are used to being major participants and having a primary role in the decision-making process for their child’s care. Even with cognitively intact children, parents, having assumed this role, may find difficulty in reducing their involvement to allow the adolescent the degree of independent decision making and involvement in their care expected by most adult centers,¹⁵ which may be further compounded if the child has any degree of intellectual or motor limitations impeding their ability to assume this independence.¹⁷

Other issues to be considered

The above issues may be compounded if the child’s medical team also have themselves a hard time “letting go,” due to a perception that the adolescent will receive a better level of care in the pediatric environment.¹⁸ This message may be transmitted to the child and family, while inhibiting establishment of a successful transition process.

Issues of career and employment, as well as sexuality, are generally handled better by healthcare teams that treat adults. However, young adults may feel isolated in an environment where most patients may be seniors.

Consequences of a poorly carried out transition

With increasing experience with transition, a number of common pitfalls have been observed by pediatric teams:¹⁹

1. Lack of adherence to established treatment plans, with subsequent risk of deterioration of health status.²⁰

2. Deficiencies in both knowledge about the condition and about follow-up, leading to errors in self-care.^21–23

3. Perceived deficiencies in the care received in the adult-orientated healthcare setting. This can arise as a result of lack of communication with prior caregivers, lack of knowledge of the patient’s underlying condition or significant changes in treatment regime from that previously utilized in the pediatric setting.²⁴ This results in a loss of confidence in the new caregivers.

4. Limited ability to direct personal care necessary for ongoing health in the adult health environment. Patients may have both intellectual and physical/communication disabilities that limit their ability to “self-advocate” in order to ensure ongoing follow-up. This is associated with an increased risk of the patient being lost to follow-up.

These issues have been associated with significant delays,²⁵ as well as loss to follow-up and reduction in the quality of care.^26,27 Relevant studies may suffer from selection bias as those lost to follow-up may have even worse long-term outcomes.

Components necessary for a successful transition

Crowley at al.^2,28 have recently reviewed existing data on the effectiveness of various transition programs. They included 10 studies meeting inclusion criteria: 8 with patients with diabetes mellitus, and 1each for patients with cystic fibrosis or post-transplantation; none included patients requiring ventilation. As the authors point out, the methodology was very heterogeneous, with only 4 studies comparing a standard intervention versus a control population. Despite these limitations, there were several themes drawn as to what leads to a successful transition:

1. Disease-specific patient education, including self-management, to prepare the patient for the transfer.

2. Creation of specific adolescent or joint pediatric and adult “overlap” clinics.

3. Establishment of transition co-ordinators with links to both programs, tasked with ensuring the transfer of both the patient and necessary healthcare information.

Even though most published reviews contain relatively consistent guidelines as to what is required in a transition program, objective evidence would indicate that this infrequently occurs,²⁹ as was reported in a survey of CF clinics, which have a longer history of transition programs.

Conclusion

Although there is relatively little objective data on what makes for a successful transition program, there is a broad consensus as to what is required for the successful transition. Much further work is needed to meet the recommended ideal.^10,30

Research questions

1. What is the optimum methodology for engaging the patient and family in planning and carrying out of transfer of their care?

2. What criteria best document a patient’s readiness for transition to adult-orientated healthcare (social, emotional and knowledge) and how can these be best measured?

3. What is the optimum (minimum) personnel required for a successful transition program: before visits to a transition clinic and in combined transition clinics (with representatives of both pediatric and adult care programs) and how many transition coordinator(s) are required?

4. Following transition, how long should the transition coordinator be involved in the individual's care?

Recommendations for transition from pediatric to adult care

1. Transition planning should start early in childhood and is an ongoing process. (Consensus)

   1. The patient and their current (future) caregivers should have a full understanding of their medical condition and what is required for transition into the adult healthcare system. If feasible, based on the developmental level of the child, the patient should be involved in planning discussions in a way that is meaningful to them.

   2. The adolescent needs to be involved i, and assume the management of their condition prior to transition, to the extent that they are able.

   3. Providers should encourage adolescents to complete developmental milestones to promote attainment of self-esteem and self-confidence, to allow successful transition and assumption of as much independence as their condition allows.

2. A formalized approach to transition of care is needed. (Consensus)

   1. A formal transition plan should be developed in collaboration with patient and family, by the time the patient is 14.

   2. A family physician should be identified prior to transition. The patient and family are encouraged to have met with the family physician before the age of 18.

   3. The formal transition program should be agreed upon and coordinated by both the pediatric and adult healthcare teams.

   4. Joint transition clinics at either the pediatric or adult healthcare facility are recommended.

3. Plan of Care. Explicit discussions should be undertaken to confirm the substitute decision maker when an adolescent is unable to provide informed consent. Goals of care conversations should be had before transition and the results of these conversations should be clearly communicated to the adult healthcare providers. (Consensus)

4. The adolescent and their caregivers need to be made aware of how homecare supports will change as the adolescent transitions from the pediatric to adult healthcare system and how this will affect, if at all, the location of care for the adolescent. (Consensus)