Biologic therapy, Chronic illness, Juvenile idiopathic arthritis, Transition to adult care.



  1. McKeever, Amy PhD, CRNP, WHNP-BC
  2. Kelly, Michelle M. PhD, CRNP


Abstract: Juvenile idiopathic arthritis (JIA) is the most common chronic pediatric illness in the United States. The disease encompasses a group of heterogeneous chronic arthritis conditions that begin before age 16 years and persist for more than 6 weeks. Formerly termed juvenile rheumatoid arthritis (JRA), JIA now includes polyarticular, oligoarticular, psoriatic, enthesitis-related arthritis, systematic arthritis, and undifferentiated arthritis. Diagnosis is based on clinical and laboratory features. Treatment includes immunosuppressant therapy, non-steroidal anti-inflammatory drug (NSAIDS), and biologic therapies. This can affect all aspects of an adolescent's life including physiologic, psychosocial, and spiritual components; therefore, this article discusses a comprehensive approach to care management with transition of care as a critical feature in adolescent healthcare.


Article Content

Juvenile idiopathic arthritis (JIA) is the most common chronic pediatric illness in the United States and affects approximately 240,000 children and adolescents under the age of 18 years (Arthritis Foundation, 2013). The disease is responsible for inflicting significant musculoskeletal pain, growth limitations, nutritional status impairment, and decreased health-related quality of life (HRQOL) as well as potential conflict and stress among families and peers (Khan et al., 2012; Seid, Opipari, Huang, Brunner, & Lovell, 2009). Juvenile idiopathic arthritis, formerly termed juvenile rheumatoid arthritis encompasses a group of eight heterogeneous chronic arthritis conditions with onset prior to the age of 16 years with symptoms persisting beyond 6 weeks (Prakken, Albani, & Martini, 2011). The JIA conditions are grouped based upon clinical and laboratory findings to enable the use of evidence-based treatment protocols to expedite diagnosis and improve patient outcomes (Prakken et al., 2011). A multidisciplinary management approach is required for JIA, which includes: pharmacological therapy, physical and occupational rehabilitation, and psycho-educational interventions with the patient and family, school accommodations, as well as comprehensive nurse navigation and interdisciplinary case management (Russo et al., 2012). An exemplar case is provided in Box 1.

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The etiology of JIA is unknown, but is thought to be both genetic and environmental, with environmental factors triggering autoimmune deregulation (Lin, Wang, Gershwin, & Chiang, 2011; McDonagh, Shaw, & Southwood, 2006; McMahon & Tattersall, 2011). T cells, particularly CD 8 T cells, play a role in the immune deregulation. Laboratory evaluations of JIA patients point to an increased numbers of T cells from the blood circulation in the joint synovial fluid. In addition, increased levels of cytokines, specifically interleukin 1 through interleukin 12 (IL 1-IL 12) have been reported in the serum samples and synovial fluid of JIA patients (Martini, 2012). Siblings and first degree relatives of patients with JIA have higher rates of autoimmune arthritis; rates are reported from 25% to 40% and rates of JIA among siblings are 15- to 30-fold greater than that of the general pediatric population (Prahalad et al., 2010). The HLA-A2, HLA-DRB1*11, and the HLA-DRB1*08 genes have been implicated in JIA (Martini, 2012). Researchers speculate that a child or adolescent who is genetically predisposed to JIA may experience an environmental trigger causing deregulation in the immune response (Lin et al. 2011). Such triggers may include viral infections such as influenza A, rubella, and parvovirus B 19. Mycobacterium pneumonia has also been associated with the onset and exacerbation of JIA. Other factors suspected to trigger the onset of JIA include: maternal smoking during pregnancy (influences the immune system deregulation of the fetus), weather changes (extreme changes in temperature have been implicated in exacerbations and flares), recent vaccination (vaccinations can trigger the immune response with lymphocyte activation), and stress (increases IL-6 production) (Martini, 2012).



Diagnosing JIA can be a difficult task that relies on identification of clinical features. Classification of JIA is based upon the International League of Associations for Rheumatology Taskforce on Classification of Childhood Arthritis (Table 1) (McMahon & Tatersall, 2011). Hallmark features of arthritis include persistent joint pain, morning stiffness lasting one or more hours, and daily activity limitations (Modica, Sukumaran, & Milojevic, 2012).

Table 1 - Click to enlarge in new windowTable 1. Classification of Juvenile Idiopathic Arthritis

Children and adolescents with systemic JIA may have a prolonged disease course with a progression to oligoarthritis (affecting one to four joints) or polyarthritis (affecting five or more joints), and may present with the following symptoms: prolonged fever, myalgia, rash, elevated inflammatory markers (erythrocyte sedimentation rate [ESR]), elevated c-reactive protein (CRP), anemia, thrombocytosis, abdominal pain, lymphadenopathy, and splenomegaly. Patients with oligoarthritis frequently have documented elevated levels of antinuclear antibody antibodies (ANA) serum levels along with joint inflammation, and some patients may present with uveitis (Modica et al., 2012).


A comprehensive clinical history and physical assessment with specific attention to the musculoskeletal system is critical. The musculoskeletal examination of a patient suspected of having JIA includes: careful assessment of joints with particular attention to joint swelling due to effusion or hypertrophy, warmth of the joint, pain with palpation or range of motion, and limited range of motion (Modica et al., 2012). Tracking the disease course for the first 6 months is a priority for an accurate diagnosis and prompt treatment. Parents and adolescents may be encouraged to use digital photographs and smartphone calendars to monitor joint swelling and symptoms. Laboratory evaluation includes complete blood cell count, comprehensive metabolic panel, ANA, ESR, CRP, rheumatoid factor, lupus anticoagulant, and HLA B27 gene typing. Radiological imaging is often the first step in evaluating suspected joint involvement. Magnetic resonance imaging and ultrasonography (US) are also used to detect early JIA disease (McMahon & Tattersall, 2011).



Pharmacological Management

Inhibiting cytokines is the priority for pharmacological treatment for the management of JIA (Horneff, 2013). The initial pharmacological therapy for the patients with JIA includes NSAIDs. If synovitis continues after treatment with NSAIDs, immune suppression to decrease joint inflammation is indicated (Lee, 2013). First-line oral immunosuppressant agents often used include: methotrexate-a folic acid antagonist, sulfasalazine-a dihyrofolate reductase inhibitor, and indomethacin-a NSAID/COX 2 inhibitor. The first-line biologic agents for the treatment of JIA are the tumor necrosis factor (TNF) inhibitors including etanercept, adalimumab, and infliximab (Goldzweig & Hashkes, 2011; Horneff). Second-line biologic agents include toclizumab, abatacept, anakinra, canakinumab, and tocilizumab. Other biologics indicated under review include rituximab, golimumab, and certolizumab (Table 2) (Gartlehner, Hansen, Jonas, Thieda, & Lohr, 2008; Horneff; Sandborg & Mellins, 2012).

Table 2 - Click to enlarge in new windowTable 2. Pharmacological Management of Juvenile Idiopathic Arthritis

Complementary Alternative Medicine Management

Use of complementary alternative medicine (CAM) modalities has increased in the JIA patient (Wang, 2012; Ward, Stebbings, Cherkin, & Baxter, 2013; Zebracki, Holzman, Bitter, Feehan, & Miller, 2007). It is estimated that 34% to 90% of patients with JIA use CAM modalities (April et al., 2009). The most common reported CAM modalities reported include: dietary alternations (herbal remedies, and vitamin and mineral supplements) (60-70%), prayer (56%), massage therapy (50%), meditation (30%), topical skin creams for pain relief and joint inflammation (30%), aromatherapy (25%), touch therapy (20%), and herbal medicine (20%) (Merkes, 2010). Adolescents with JIA reported that CAM therapies are primarily used for minimizing symptoms and decreasing pain. Forty-five percent of JIA adolescents who use CAM modalities fail to report their use of CAM to their rheumatologist for concern of disapproval (Feldman et al., 2004; Wang, 2012; Ward et al., 2013). Adolescents and their families may feel more comfortable sharing their CAM use with nursing professionals, particularly if questions regarding its use are posed in a nonjudgmental manner. Researchers noted that parents may choose CAM as their first-line therapy to manage their child's chronic illness due to misconceptions about pharmacological treatment and fear of adverse effects (Wang, 2012; Ward et al., 2013). Because there has been limited research in the use of CAM with JIA adolescents, there is little evidence to support its effect on symptoms or adherence to standard medical treatments (Ward et al., 2013).


Risk of Associated Disease

Opportunistic infections and childhood malignancy are two conditions thought to be associated with treatment modalities used for children with JIA. These complications pose significant concerns for parents and adolescents as they make treatment decisions. Secondary data analysis of records from two United States medical databases, the US Medicaid Analytic extract database and the US Surveillance, Epidemiology and End Results (SEER) database from 2000 to 2005, was used to determine standardized incidence rates and risks related to treatment options (Beukelman et al., 2012, 2013). Beukelman et al. (2013) concluded that individuals with JIA have a two-fold increase in opportunistic infections; however, the risk was not related to immunosuppressive medications but was thought to be associated with autoimmune disease. Most prevalent opportunistic infections were herpes zoster, Salmonella, and Coccidioides with herpes zoster being the most frequently treated infection. Based upon the SEER data, it was determined that those individuals with JIA have a 1.4 to 4.5 times higher standardized rate of malignancy than children with attention deficit hyperactivity disorder or asthma. Regardless of treatment modality, children with JIA have an increased risk of malignancy (Beukelman et al., 2012, 2013).


Impact of Chronic Illness

Chronic pediatric illness affects the adolescent and family on physical, psychosocial, social, behavioral, educational, and financial levels (Barlow & Ellard, 2006). Many adolescent patients relate their overall well-being to their perceived psychosocial well-being, their status with peers, and their perceived body image. When the disease interferes with JIA adolescents' ability to socialize, attend school regularly, and participate in age-related activities with their peers, their psychosocial well-being, sense of normalcy, and peer relationships are negatively affected (Sanzo, 2008; Schanberg, Gil, Anthony, Yow, Rochon, 2005). For example, Russo et al. (2012) reported that families with a child or adolescent diagnosed with JIA self-reported a change in family and social relationships. Of 33 JIA patients surveyed, 50% reported prolonged school absences due to disease flares, 70.8% reported halting organized sports, 66.6% reported attending regular physical and occupation rehabilitation sessions, and 50% reported needing an assistive aid for their affected joints (Russo et al., 2012). When asked about their social interaction having an impact on their disease status, 75% reported that they failed to tell anyone about their disease for fear of shame or discrimination, 91.6% relate that their disease interferes with their daily living and HRQOL, and 41.6% reported that their JIA had a negative impact on their body image. Additionally, 91% of adolescents with JIA were worried about the current and future state of disease control, their body image, and current and potential disabilities related to JIA (Russo et al., 2012). Tong, Jones, Craig, and Singh-Grewal (2012) interviewed JIA patients using qualitative methods and identified six themes about how their disease had an impact on their life. Themes identified included: aversion to being different, striving for normality, stigma and misunderstanding, suspension in uncertainty, managing treatment, and desire for knowledge about their disease. In addition, Tong and colleagues noted that school and social functioning were recognized by JIA adolescents as an important part of their HRQOL. An adolescent with JIA also reported that pain and fatigue were two disease factors that negatively affected academic performanc and school attendance. For example, the early morning routines and later activities for athletics and clubs involved in high school are not optimal for the JIA client as proper sleep and periods of rest are paramount to control disease flares (Khan et al., 2012). Promotion of normal routines is paramount, and is facilitated by adequate disease management, and regular activity (Khan et al., 2012).


Transitional Care

The American Academy of Pediatrics (2011) considers comprehensive transitional care programs for adolescents with chronic illness a healthcare priority. Advancement in the treatment of JIA with biologic therapies and immunosuppressant therapy has increased HRQOL. As children born with complex chronic illnesses are now surviving into adulthood and leading independent lives, programs transitioning from pediatric care to adult care are of critical importance (Osterkamp, Costanzo, Ehrhardt, & Gormley, 2013; Paone, Wigle, & Saewyc, 2006; Sable et al., 2011). Transition of care refers to the continuum of care that begins during the pediatric period and ends when the adolescent is transitioned to their adult healthcare provider and into the adult healthcare system with all interdisciplinary referrals in place. The term transition of care is often misused assuming that transition of care only refers to the movement of the adolescent's medical records. However, that is only one small component of the transitional program (Paone et al., 2006). McDonagh et al. (2006) have identified key components of effective transitional care including: skills training for the adolescent (e.g., communication, decision making, assertiveness, and self-management), inclusion of the caregiver/parent, young-person centered, interdisciplinary/multidisciplinary focused, involves pediatric and adult healthcare services, and holistic focused (Lipstein, Meuthing, Dodds, & Britto, 2013). Preparation must begin early to ensure adolescents develop the knowledge and skills to take ownership of their chronic illness and disease management. Healthcare providers must be well educated and aware of the developmental issues that present in the adolescent years. The nurse is a critical provider to navigate, educate, and coordinate this transition. As adolescents move from parental control to independent living, their healthcare is of critical importance (Van Staa, Jedeloo, Van Meeteren, & Latour, 2011). According to Barlow and Ellard (2006), the major concerns of adolescents with chronic illness who move into adult care are going into the unknown, going into a different world, disrupting relationships and ways of working, a shift in roles and responsibilities between the adolescent and adult, and recommendations for improving processes and personal growth. Recommendations for successful transition include: improving patient and parental preparation and improving communication between the pediatric and adult rheumatologist (Table 3) (Van Staa et al., 2011).

Table 3: Recommendat... - Click to enlarge in new windowTable 3: Recommendations for Successful Transitional Care Programs

Clinical Nursing Implication

In healthcare facilities, the nurse is a key member of the healthcare team focused on development and implementation of transitional care for the chronically ill adolescent (McDonagh et al., 2006). As transition of care is an ongoing process that begins in early adolescence and continues through early adulthood, the important features of disease management for the JIA patient in transition of care include: self-awareness of disease; identification of potential triggers to flares; symptom management with appropriate rest, pain medication, and complementary therapy; the comprehensive understanding of drug treatment protocol and potential toxicities; and preparing the adolescent for lifestyle changes with higher education and employment. Critical issues for the nurse to address for adolescent patient include patient education such as risks of substance use with the adolescent's pharmacological therapy, ramifications of sexual behavior with immunosuppressant therapy, unintended pregnancy and teratogens, potential complications associated with pregnancy, as well as the importance of family planning measures to prevent or delay pregnancy. Discussions on family planning with acceptable contraceptive options must be included in the transitional care program, including risk reduction education on delaying or abstaining from sexual intercourse, and risk reduction measures if the adolescent is already sexually active. Adolescent and young adult females must be well informed about risks and complications of pregnancy with their chronic illness. Those females with JIA are at increased risk throughout the pregnancy, and management with a multidisciplinary team is necessary to reduce maternal and fetal morbidity and mortality (McDonagh et al., 2006).


Successful transition must be individualized to consider the developmental level of the JIA patient, the severity of the adolescent's particular JIA illness, their disease stability, their personal goals, and the ability of that patient to take ownership of their disease. Transitional care requires planning, care coordination, and collaboration among the interdisciplinary team members as well as the JIA patient and their family, with facilitation by the nurse. The objectives of an effective transition of care is for the adolescent to reach a level of independence in caring for their chronic illness in young adulthood, to achieve their goals in life, and to be able to function as a productive member of society while at the same time living and managing a chronic illness. Nurses must encourage adolescents to take ownership of their disease management and health promotion activities that are critical pieces in transitional care (Condon, Gormley, & Hussey, 2009; Sanzo, 2008). There are large number of chronically ill children and adolescents throughout the United States. Nurses are key members of the interdisciplinary health team leading the successful transition of care. Transitional care is about addressing how adolescents can move into adulthood and learn how to live successfully and manage their chronic illness from a holistic perspective using the concept of resilience. Resilience means how a patient can manage extrinsic factors of life and risk factors (e.g., workload, school, stress, and role) in order to balance any adverse effects from their chronic illness and still maintain a normal lifestyle.


Exemplar Case of Juvenile Idiopathic Arthritis

A 10-year-old girl presented to her pediatrician after a viral infection with right knee swelling. A work-up for Lyme disease was negative. ANA and R.A. labs were negative. On exam her knee was painful, warm to touch with a slight effusion on the right. She was referred to rheumatology. After an uneventful course of 2 years, she began with episodes of joint swelling of her knees, wrists, and 4th and 5th metacarpal joints. She responded well with corticosteriod therapy (Prednisone), and NSAIDs (Naproxen and Meloxicam) but had to discontinue them due to gastrointestinal side effects. On year 3 she was started on Etanercept 25 mg/weekly sq after she began to experience decreased range of motion and functional mobility with amplified pain syndrome in her knees, her feet, and hands. After 4 months into treatment, she responded with improved range of motion, decreased amplified pain, and improved functional mobility. She was also sent for outpatient occupational and physical therapy.


Clinical Implications


* The nurse is a key member of the transitional healthcare team for pediatric and adolescent patients with chronic illness.


* Transitional care assists adolescents to successfully care for their chronic illness, achieve life goals, and to function independently leading a productive life.


* Transitional care begins in early adolescence and should continue until adult care is well-established.


* Successful transitional care is based upon an individualized approach based upon the JIA's particular disease.


* Transitional care requires care coordination with the interdiscinplinary healthcare team.


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