Pediatric to Adult Care Transition Challenging for Patients with JIA

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Dr. Sheffield is an adult rheumatologist who received the following referral request from a family doctor: “Please see this 22-year-old male with a history of juvenile arthritis for ongoing care. I have only seen him once, and have no previous medical records.”

Dr. Sheffield meets with Paul, who reports that he has had arthritis since he was a young boy. He used a lot of different medicines, but isn’t sure of their names; his mother is in the waiting room and can provide details. He’s pretty sure he was referred to an adult rheumatologist when he turned 18, but he lost the doctor’s name and number, he was never called about an appointment, and things got busy at work and school. He hasn’t taken medicine for the past few years, because they’re really expensive, and he’s been feeling pretty good. Over the past few months, it’s gotten harder to walk, bend and climb stairs, so his mother got him into a family doctor, who sent him here.

Transitioning from the pediatric to adult healthcare system can present young patients with significant hurdles. The above vignette highlights some of the issues that may arise. This article focuses on transitional care in patients with juvenile idiopathic arthritis (JIA). It discusses some of the challenges for patients, families and healthcare providers (HCPs), and outlines some of the initiatives developed to address these challenges.

Definition of Transition

Transition is defined as “the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented healthcare systems.”¹ It’s not an event that occurs at one point in time (e.g., transfer); it’s a gradual process that requires the acquisition of different skills from adolescence into the mid-20s, with the attainment of skills likely occurring in parallel with maturation of the frontal lobes.²

Transition Challenges for Youth & Parents

There is evidence that failure to transition successfully can adversely affect long-term health outcomes.³ A Canadian study showed that 52% of JIA patients had an unsuccessful transfer to, and/or sustained follow-up with, an adult rheumatologist.⁴ Depending on the location, institution and local administrative policies, youth are typically transferred to adult HCPs between the ages of 16 and 22. This is a particularly vulnerable time for youth. They are often preoccupied by body image, family, peer and sexual relationships, school and recreational activities. Health concerns are frequently relegated to the back burner, particularly if parents have assumed a managerial role for medical care. Youth may engage in high-risk behaviors that further contribute to poor transition outcomes. Studies show a high incidence of poor adherence, inadequate knowledge about disease and treatments, and poor advocacy skills at the time of transfer.⁵

The Readiness for Adult Care in Rheumatology (RACER) questionnaire is designed to measure transition readiness.

Youth and their parents often have a number of concerns about moving on to adult care. Pediatric centers are family centered. The interaction is informal and relaxed, parents are regarded as expert partners, and many centers have a multidisciplinary team, with rehabilitation and psychosocial support. Parents who have played an active role in managing their child’s health worry that they will be sidelined by adult HCPs and that their children are incapable of assuming responsibility for their medical condition. Patients and families often feel they are being abandoned by a healthcare team that has followed them, in some cases, since early childhood. They worry about starting over with a new HCP who doesn’t know their history. Changes or lapses in insurance coverage may lead to gaps in therapy. Unprepared patients may avoid making the first appointment.

Transition Challenges for HCPs

Adult centers are patient focused, with an expectation that patients manage their health autonomously. The interaction is more formal and business like, and it is less common to have the support of a multidisciplinary team. Adult HCPs may have limited knowledge of pediatric rheumatic diseases and an insufficient understanding of adolescent development. They are often frustrated with youth who don’t take responsibility for their health, parents who are overbearing and overly involved, and medical records that are inadequate or nonexistent.

Unique Features of JIA

When caring for adults with JIA, it’s important to recognize that JIA has unique features that distinguish it from adult RA. Chronic inflammation of the immature skeleton can cause growth disturbances, including short stature and limb length discrepancies, particularly in the lower extremities. Several prospective studies show that up to 75% of JIA patients have associated temporomandibular joint (TMJ) arthritis.^6,7 Uncontrolled TMJ inflammation can cause microretrognathia, jaw asymmetry, pain and compromised function, including difficulty chewing and speaking. Chronic asymptomatic anterior uveitis, seen in up to 25% of JIA patients, can lead to development of irreversible scarring, glaucoma, cataracts and loss of vision.⁸

The Internet is a major resource for health information and is ideal for
providing healthcare services for young patients transitioning to adult care.

JIA Outcomes

Although few good long-term outcome studies exist and most don’t reflect treatment with biologics, data from North American and European centers show that between 40 and 70% of young adults with JIA will have persistent active arthritis.^9-17 JIA patients have been shown to have functional limitations, lower employment rates and impaired quality of life.^18-21 More than half of patients with uveitis will have persistent eye inflammation in adulthood.²² Because a significant number of JIA patients will require ongoing care by adult healthcare providers, it’s critical that youth be provided with developmentally appropriate skills that will allow them to transition and move on to the adult health system in a timely fashion.

Timing for Transition Interventions

Transition needs to start early. Data from the UK, U.S. and Canada support starting transitional care between the ages of 12 and 14.^5,23-25 Youth should be trained with respect to self-management, self-advocacy and assertiveness. They should acquire knowledge about their medical condition and its treatment, and understand how their condition can affect recreational activities, vocational and educational plans, sexuality, reproduction and independent living. Although transitional care should be youth centered, parents are a key resource of support and knowledge for young people and should be included in the process.²³

Obstacles for Transition Programs

A number of transition programs have been developed for youth with rheumatic conditions. These include education initiatives directed at teens during routine clinic visits, and dedicated transition clinics staffed by specialists that may include adolescent medicine, pediatric and adult rheumatology experts. There can be considerable obstacles to teaching transition skills, including geographic barriers, particularly for youth living in rural or remote areas, language barriers, and lengthy wait times to access services. In addition, there can be significant costs for families, including therapy-associated expenses, and absences from school and work.

Social Media & Transition

Social media can be a valuable tool to help overcome some of these obstacles. The Internet has become a major resource for health information and is a powerful mode of communication for youth, making it ideally suited to provide online healthcare services to this population.

Image Caption: carballo/shutterstock.com

Our group, as part of a national multicenter initiative, has developed an interactive Internet-based program, called Teens Taking Charge: Managing Arthritis Online (TTC, see image on opposite page). It’s designed for youth with JIA and their parents. Available in English, French and Spanish, it has multiple components, including JIA-specific education, self-management and coping strategies, social support and a parent site. This dynamic program keeps teens engaged with quizzes, interactive questions and goal-setting exercises. A pilot study supported the feasibility and initial efficacy of TTC for improving disease-specific knowledge and reducing pain in youth with JIA.²⁶ Final evaluation for the effectiveness of this intervention is reaching completion, and the site should be freely available within the year.

Our center has also developed an online peer support intervention for youth with JIA, called Virtual Peer-to-Peer Mentoring (VP2P). We developed a support manual, provided training for mentors (i.e., young adults with JIA) and are completing a pilot study in which trained mentors connect with JIA teens using Skype. Preliminary results suggest the VP2P intervention is a promising psychosocial program with the potential to improve self-efficacy, self-management, disease knowledge and social support.

Measuring Transition Readiness

Although it’s important to assess the effectiveness of existing interventional programs, no validated tools exist to measure transition readiness in youth.²⁷ As part of a national multicenter collaborative effort, our group developed the RACER questionnaire (Readiness for Adult CarE in Rheumatology) to measure transition readiness. The RACER questionnaire was designed to assess gaps in youths’ knowledge and emotional preparedness, identify areas in which they need additional education and support and assess the efficacy of transition interventions.²⁸ We have completed testing of the RACER questionnaire for face and content validity, and will be testing construct validity and reliability.

Summary

It’s important to recognize that transfer to adult care often occurs at a time when youth don’t have the skills, emotional development or maturity to successfully make the move from the pediatric to the adult healthcare system. Poor transition can lead to adverse outcomes in long-term health management. Transition support and education will help. We are hopeful that ongoing research will lead to the development of innovative programs and tools to help ensure a successful transition.

Lynn R. Spiegel, MD, FRCPC, is a rheumatologist in the Department of Paediatrics, The Hospital for Sick Children, and assistant professor in the Department of Paediatrics, University of Toronto, Ontario, Canada.

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