Transition: Moving from Pediatric to Adult Rheumatology Care



Triadic or family consultation

Dyadic or individual consultation

Assumes patient dependence

Assumes patient independence

Multidisciplinary team

Limited multidisciplinary team

Consultation time longer

Consultation time shorter

Procedural pain management variable

Limited procedural pain standard practice

Tolerance of immaturity

Limited tolerance of immaturity

Routine follow-up of missed appointments

Limited follow-up of missed appointments

Greater direct supervision of

Less direct supervision of

trainees in clinics

trainees in clinics

Modified from Ref. [17]

Childhood Rheumatic Diseases Often Persist into Adulthood

A large segment of the pediatric rheumatic disease population continues to have active disease in adulthood [8]. In most children with systemic lupus erythematosus, this is the rule, rather than the exception. Children with dermatomyositis usually have remission of active disease by adulthood, but may have significant residual effects (muscle atrophy, calcinosis, insulin resistance) of the disease. Likewise many children with vasculitides continue to have active disease or the effects of previous disease. Children with polyarticular JIA frequently continue to have active arthritis well beyond childhood and adolescence. Even those with oligoarthritis may have disease flares in adulthood, and may carry the burden of joint destruction or deformity, or growth abnormalities. Pain amplification syndromes often have their onset in adolescence and frequently persist in adulthood. Although the outcome of children with rheumatic diseases has improved with more widely available expertise and access to drugs such as methotrexate, intra-articular corticosteroids, and the biologics, many still have active disease or suffer from the damage caused by past disease. This may affect onset of puberty, normal physical growth, self-image, educational achievement, development of normal relationships outside the family, and employability. Using an administrative database, Adam et al. [9] demonstrated impaired school and work participation in adolescents aged 12–19 years with arthritis compared to youth with other health issues.

Goals of a Transition Program

The overarching goal of a transition program is to facilitate the acquisition of optimal medical care within the adult health-care system and to enable the young adult to be independent in their health-care management. There are a number of components of such a program. Education of the patient and family about the necessity for transition, and education of the patient about the disease, medications, and characteristics of adult health care, is essential. The importance of adherence to treatment recommendations is emphasized. A transition program should facilitate the normal process of separation of the adolescent from dependence on parents. A transition program should have the capacity to provide assistance with issues of self-advocacy, education, vocation, medical insurance, independent living, and relationships outside the family. Finally, a transition program should implement eventual transfer of patient management to adult health-care providers. The process is complex and often difficult to implement because of constraints on resources. Nonetheless, elements of such a program are often attainable when the need is recognized.

When Should Transition from Pediatric to Adult Medical Care Occur?

The concept of transition should be introduced to the patient and family when it becomes evident that there is likely to be a need for ongoing rheumatologic care beyond childhood. The actual process of transition to adult care takes place at a later time. In some instances this may be at the age of 14 or 15 years, in others not until the age of 18 or 19, or even later. The timing of transition is often dictated, not by the readiness of the patient, however, but by the cultural norms of the society in which the child is living or by the system of medical care provision. In many Western countries, transition to adult care occurs when the patient completes secondary education (usually between the ages of 17 and 19 years). In children with other medical needs such as those with severe developmental delay, transition may be postponed or be inappropriate since the goals of the transition program may not be achievable (see below). Coordination of transition for children cared for by multiple subspecialists (e.g., rheumatology, nephrology, hematology) is essential to minimize fragmentation of care. Stinson and colleagues have extensively evaluated the measures in use to determine readiness for transition and transfer of adolescents with chronic diseases, including rheumatic diseases, and concluded that there are currently no well-validated transition readiness questionnaires to help make the decision about when transition should take place [10].

Barriers to Transition

There are many impediments to successful transition from pediatric to adult health care. These barriers can be viewed as originating with the parents, the patients, the pediatric or adult health-care providers, and the medical care systems. Patients and parents are often reluctant to change health-care providers whom they have known in many instances for decades. Parents have been accustomed to advocating for their children and to some extent controlling the interaction between the child and the medical community. They sometimes are reluctant to yield this control.

Similarly, the pediatric rheumatologist may be reluctant to transfer care of a patient whose care they have provided for many years. All should recognize that optimal care for a young adult is best provided by a physician trained in the health-care needs of adults. A barrier to transition may be the difficulty in identifying adult physicians who understand the challenges and rewards of caring for the adolescent patient and have the skill, knowledge, and interest in caring for patients in this age group. An understanding of the evolution of childhood onset of rheumatic diseases, and their impact on the child and adolescent, is essential. The adult physician must appreciate the developmental characteristics of adolescence in order to participate in a successful transition program.

In general, pediatric rheumatology incorporates a team of health professionals. There may be inadequate team support for these complex patients in the adult health-care environment and limited coordination or availability of multiple service providers. Transition from pediatric to adult health care may be impeded by gaps in health-care financing, gaps in availability of appropriate health-care services, and difficulty in providing smooth transfer of information.

Models of Transition Programs

There are many approaches to transitioning medical care from the pediatric to the adult setting. A primary care-based coordination of transfer from pediatric to adult care has been described [11]. Utilization of a generic adolescent medicine service as the focal point for transition has also been proposed [12]. Most commonly, transition has involved disease or discipline-specific models in which, for example, pediatric and adult rheumatology are the clinical disciplines involved.

The simplest, although probably not the most effective model, is to “transfer” the patient’s care to an adult rheumatologist. Careful selection of the appropriate adult health-care provider (ideally a rheumatologist) is necessary to ensure a “good fit.” Because of the differences in pediatric and adult health-care provision (Table 12.1), this is often not a successful strategy. Hazel and colleagues [13] evaluated 100 adults with JIA who had been transferred to an adult rheumatologist from a pediatric rheumatology clinic. The adolescent patient had responsibility for making the initial appointment with the adult rheumatologist. The survey found that 52 % of 100 patients either did not make the initial appointment (17 patients) or had not followed through with care with the adult rheumatologist 2 years after referral (35 patients). It is evident that this approach is likely to result in many young adults having no or delayed health care for ongoing disease or no monitoring of medications which they are taking. A single clinic visit involving both the pediatric and adult rheumatologist is a frequently used transition approach. This facilitates communication and provides the opportunity for the patient to participate in the “handover” of his or her medical care. Although these approaches are efficient from the viewpoint of the time involved by physicians, neither of these scenarios is likely to achieve many of the goals of a transition process.

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Oct 25, 2017 | Posted by in RHEUMATOLOGY | Comments Off on Transition: Moving from Pediatric to Adult Rheumatology Care
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