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The Child With Arthritis in the School SettingMaria Sanzo, RN, MSN, CPN, is Clinical Care Coordinator of Pediatric Rheumatology at Connecticut Children’s Medical Center, Hartford
Arthritis is a condition often associated with the elderly. However, arthritis affects approximately 275,000 children nationwide. Symptoms may vary from one swollen joint to multiply affected joints coupled with fatigue, fever, and rash. Its effect on the school-age child can range from missing a few days of school per year to hospitalizations requiring tutoring to keep up with missed schoolwork. Other issues include the social impact of medications and their side effects, noncompliance, frequent doctor’s visits interfering with school and afterschool activities, and not being able to keep up with peers. The financial impact of multiple copayments for office visits and medications and the stress associated with work absence puts a strain on parents. The school nurse recognizes how these factors can affect the academic success of children with a chronic disease and can provide care that will assist students and families address and cope with these concerns.
Key Words: juvenile idiopathic arthritis • school nurse • biologics • Methotrexate • Prednisone • NSAIDs Caring for students with arthritis can be a challenge. On one hand, they may look like any other student; however, the trained eye will notice the subtle knee effusion on a warm spring day or the pallor associated with the fatigue of a systemic presentation. On the other hand, a flare of symptoms will make the student stand out with marked joint swelling, limping, or the inability to hold a pencil. Most forms of arthritis in children are chronic conditions affecting students from preschool to college. Chronic arthritis "is one of the most common rheumatic diseases of childhood" (Cassidy & Petty, 2005, p. 206). It is also "an important cause of short- and long-term disability" (Cassidy & Petty, 2005, p. 206). When school nurses are aware of the social, emotional, physical, and financial implications of a chronic disease such as arthritis, they are better prepared to provide care and recommend resources to students and their families.
Arthritis simply means inflammation of a joint. This swelling is often associated with pain, redness, warmth, and loss of motion. There are more than 100 different diseases that fall under the arthritis umbrella. Juvenile idiopathic arthritis (JIA) alone has several classifications. These include systemic, persistent and extended oligoarticular, polyarticular with rheumatoid factor positive or negative, psoriatic arthritis, enthesitis-related arthritis, and undifferentiated arthritis (Cassidy & Petty, 2005). The focus of this article is on JIA, formerly referred to as juvenile rheumatoid arthritis, and the following classifications: systemic, oligoarticular, and polyarticular (Table 1).
Systemic JIA presents with a high fever, rash, and painful, swollen joints. The fever is quotidian, meaning it will often be normal in the morning but will rise in the evening. These children are often fatigued, irritable, and have decreased appetite. They just do not feel well. Systemic presentations sometimes develop into polyarticular patients. Systemic presentations represent 10% of JIA patients (Cassidy & Petty, 2005). Oligoarticular JIA involves one to four joints, asymmetrically, usually involving the knees or ankles. This type of JIA is often associated with eye disease and a positive antinuclear antibody (ANA) 75% of the time, whereas the ANA will be positive in polyarticular JIA 50% of the time and in systemic JIA, only 10% of the time (B. Edelheit, personal communication, March 20, 2008). The age of onset will determine the frequency of ophthalmology exams to rule out uveitis. Uveitis is more likely to occur in young girls (female to male ratio 4.4:1) with oligoarthritis who are ANA positive (Petty & Cassidy, 2005). The correlation of arthritis and uveitis is thought to be related to the presence of collagen in both the eyes and the joints. Students with any classification of JIA should see an ophthalmologist on a regular basis. Oligoarticular presentations represent 60% of JIA patients (Cassidy & Petty, 2005). Antinuclear antibodies can be positive for a variety of reasons, not just arthritis. Positive ANAs can be seen in infections, malignancies, and other autoimmune diseases such as lupus. Also, from 3% to 5% of healthy children have a positive ANA for no medical reason. Children with JIA will have a positive ANA from 40% to 60% of the time (Tucker, DeNardo, Stebulis, & Schaller, 1996). Oligoarticular JIA may progress into a polyarticular presentation. Polyarticular JIA affects five or more joints. Polyarticular patients represent 30% of patients with JIA (Cassidy & Petty, 2005). Those with polyarticular JIA may be seropositive for both rheumatoid factor and the newer antibody, anticyclic citrullinated peptide antibody, both of which are predictive of future erosive disease. Erosive disease involves the wearing away of bone and needs to be treated more aggressively, sometimes reversing some of the destruction.
Chronic diseases affect children and their families on a physical, psychological, social, educational, and financial level—factors that cannot be seen with the naked eye. Physically, the manifestations of JIA can range from limping to disfigured hands or a chubby face from Prednisone therapy. If Prednisone makes their face puffy, adolescents may not be compliant with their medication regime, putting them at risk for a flare of symptoms. This may lead to missed school days, which have the potential to affect academic performance. Students with JIA need to be educated about their disease, as well as the effects and side effects of each medication. If Prednisone is prescribed, symptoms will be controlled more quickly and, hence, the medication can be weaned. Although this information has probably been explained to the student in the rheumatologist’s office, it may need to be reinforced periodically as different pieces of information become important at different times relative to the student’s physical condition or developmental needs. One of the roles of the school nurse is that of interpreter or translator because he or she is "most familiar with the medical and health information" (Selekman & Gamel-McCormick, 2006, p. 640). "Physically, the manifestations of juvenile idiopathic arthritis can range from limping to disfigured hands or a chubby face from Prednisone therapy." The psychological and social effects of JIA often relate to the student’s ability to participate in age-related activities with peers. When school or afterschool activities are interrupted or cancelled because of physician’s appointments or regular physical therapy sessions, this has an effect on the child’s sense of belonging, an important aspect of social development. Being different is difficult during childhood and adolescence, when fitting into the group is important. Oftentimes, teens will make appointments with their activity or sport schedules in hand because if they are out of school for an appointment the day of a game, they cannot play or participate in an after-school activity. Plans with peers and play-dates sometimes need to be postponed or cancelled. Difficulty walking for extended periods may make it difficult for some teens to go to the mall with their friends. For this reason, some students do their best to keep their disease a secret from their peers "because it implies that they are different during a period of their lives when fitting into the group is essential" (Selekman & Gamel-McCormick, 2006, p. 642). "Difficulty walking for extended periods may make it difficult for some teens to go to the mall with their friends. For this reason, some students do their best to keep their disease a secret from their peers." From an educational perspective, the impact of JIA is multifaceted. Students with arthritis often sleep poorly because of pain. They often need to wake up earlier than usual to incorporate a lengthy morning routine that helps loosen up stiffened joints and to take medications. After a poor night’s sleep, students are tired, which affects their ability to concentrate in school. School absences because of flares, physician’s appointments, therapies, or infusions often exacerbate academic problems. If their hands are affected, simple things such holding a pencil or writing for extended periods of time will be painful, making it more difficult to complete class work in a timely manner. Fatigue decreases the ability to tolerate pain, and pain increases fatigue—a cycle often experienced by students with JIA. Individualized education plans can accommodate different schedules for these students or include short-term tutoring to ensure academic success. School-based physical and occupational therapy may also be a part of their individualized educational plans. The school nurse should ensure that these services and accommodations are being carried out and that the effectiveness is evaluated at regular intervals (Table 2; Selekman & Gamel-McCormick, 2006).
Financially, multiple copayments for physician’s visits, therapies, and medications can place a financial burden on parents—a factor often sensed by perceptive young people. Also, the stress of bringing children in for appointments, often unscheduled because of a flare of symptoms, missing work, and paying for gas and parking places adds to strain on parents of children with a chronic disease. Parents need to be informed about and encouraged to take advantage of the Family and Medical Leave Act, allowing them to take time off for such things as their child’s appointments, treatments, lab work, and therapy without risk of losing their job. The school nurse is the physician’s eyes and ears in the school. The fact that a student is coming into the health room frequently for medications or is stopping by to rest is valuable information to convey to parents. Other examples may include decreasing their participation in physical education class or requesting to stay in for recess. This may signal the beginning of a flare or a need for changes in medications. This information is invaluable to the student’s physician.
Unlike decades ago when physicians had only aspirin and gold available to treat arthritis, today’s rheumatologists have a wide range of options to treat children with JIA. The most commonly prescribed medications for arthritis are nonsteroidal anti-inflammatory drugs (NSAIDs). There are many available today; Relafen, Voltaren, Naprosyn, and Indocin are just a few examples. Besides the risk of gastrointestinal (GI) irritation, some NSAIDs, such as Indocin, list headaches as a side effect. NSAIDs should never be taken on an empty stomach. If a child is on a regular NSAID, education needs to include the warning that they should not combine their medication regime with other over-the-counter (OTC) NSAIDs, such as Motrin. However, acetaminophen can be taken for headaches or menstrual cramps. While on NSAIDs, blood work should be done every 6 months to monitor liver function. Different NSAIDs work for different patients. Sometimes, children will go through a trial of more than one NSAID before finding one that gives them adequate relief (Laxer, 2005). Another category of anti-inflammatory medications is the COX-2 inhibitors, such as Celebrex. Because of their higher cost, these drugs are usually reserved for those individuals with GI issues or who have failed multiple NSAIDs. Insurance companies usually require prior authorization for this class of medications. After an initial trial of NSAIDs, the next step is to add a disease modifying antirheumatic drug such as Methotrexate. Methotrexate has been used in the treatment of arthritis for decades. It can be taken orally, intravenously, or subcutaneously once a week. The most common side effects are mouth sores and nausea. Leucovorin (folic acid), administered orally 12 hours after the Methotrexate, is given to reduce these side effects. Although Methotrexate in high doses is considered a "chemotherapeutic agent" by some, research shows evidence of excellent tolerance in children with arthritis (Laxer, 2005). Wallace (2007) stated that Methotrexate "is well tolerated by children and does not appear to be more toxic than NSAIDs, if monitored properly" (p. 24). Methotrexate does not begin to work immediately. It is usually 4 weeks or so before the student will feel some benefit from this medication. A complete blood count and liver function tests should be obtained every 2 months while the child is on Methotrexate to monitor for any drop in white count or rise in the liver function tests. If lab values are not within the normal range, Methotrexate may be held a week or two while these values return to normal. Parents who administer Methotrexate subcutaneously at home are taught to dispose of needles and syringes in a hard sided plastic container, such as a detergent bottle, to seal the cap with duct tape, and dispose of the container in the regular trash. Until Methotrexate takes effect or during a flare of symptoms, it oftentimes is necessary to use Prednisone as a "bridging" or "rescue" medication. Because Prednisone is a steroid, its use is limited to as short a period of time as possible. Side effects of short-term Prednisone use may include emotional lability, hyperactivity, and increased appetite, whereas long-term effects may include osteoporosis, cataracts, and cushingoid features. Because of increased appetite and subsequent weight gain, children and especially teenagers are sometimes noncompliant with this medication. To avoid an adrenal crisis, Prednisone should always be weaned or tapered and never stopped abruptly, giving the sluggish adrenal gland a chance to start producing enough hormones for the body’s needs. All children on Prednisone should be receiving adequate calcium and vitamin D, either through their diet or via supplements (Cimaz & Falcini, 2005). In the past decade, rheumatologists have a new class of drugs, biologics, to use in the new and growing field of arthritis treatment. These drugs "work by modifying the immune system in attempt to cut down on arthritis-related inflammation" (Dunkin, 2007, p. 2). A popular biologic, Etanercept or Enbrel, "binds to tumor necrosis factor [TNF] (both alpha and beta) and blocks its interaction with cell surface TNF receptors" (Wulffraat & Prakken, 2006, p. 432). It is administered subcutaneously once or twice a week, depending on the dose. The most frequently reported side effect is localized site reaction that can be treated topically with ice or anti-itch cream. Because Enbrel inhibits TNF, an immune system component, it should be held if the student has a fever greater than 101° Fahrenheit. Prior to the first dose of Enbrel, a purified protein derivative (PPD) should be done to determine any previous exposure to tuberculosis. Students on Enbrel should not receive live vaccines and, if traveling by plane, should carry a letter explaining that Enbrel is given subcutaneously and must be kept refrigerated. Infliximab or Remicade is a "chimeric human/ mouse anti-TNF monoclonal antibody, which binds to TNF alpha and blocks its binding to cell surface receptors" (Wulffraat & Prakken, 2006, p. 432). Infliximab is given intravenously in a clinical setting at 0, 2, and 6 weeks and then every 4 to 8 weeks, depending on how the child responds. Similarly to Enbrel, a PPD must be placed and read prior to the first dose. Also, if the student is ill with an infection and/or fever, Infliximab should be held until the student is afebrile and feeling well. Side effects include possible infection and hypersensitivity to the drug. Remicade is also popular with gastroenterologists for its efficacy in the treatment of Crohn’s disease. From an academic standpoint, depending on the time of the 2- to 3-hr infusion, students can sometimes attend school for part of the day. Adalimumab or Humira is a TNF biologic given subcutaneously twice a month. Common side effects are infection and injection site reactions. Humira, Enbrel, and Remicade are equally effective and work best in combination with Methotrexate (Laxer, 2005). Anakinra or Kineret is administered subcutaneously daily because of its short half-life. Kineret blocks the action of inter-leukin 1 (IL-1), a protein that causes pain, swelling, and stiffness. "By binding to the IL-1 receptor on cell surfaces, it prevents the interaction of the receptor with IL-1 and subsequent cell signaling" (Laxer, 2005, p. 124). Kineret should be given at approximately the same time each day. Because of a potential drop in white cells, blood work is needed every 3 months. A common side effect is injection site reactions. Kineret should be held if the student is febrile or has an infection. Abatacept or Orencia is a T cell blocker given intravenously at 0, 2, and 4 weeks and every 4 weeks thereafter. It is a short, 30-min infusion given in the hospital or at home. Like other biologics, Orencia’s most common side effects are infection and infusion reactions. While a child is on any immunosuppressive therapy (steroids, Methotrexate, or biologics), no live vaccines should be administered. These include the measles, mumps, rubella, and varicella vaccines. Children should receive a flu vaccine during flu season but avoid the live intranasal vaccine, receiving the intramuscular injection form instead. "Most children with juvenile idiopathic arthritis should be able to attend school on a regular basis. However, some of the children will require two sets of books, or special transportation."
As a general rule, activity is encouraged in children with arthritis. The caveat to this is to self-limit activity if it is causing pain or difficulty. In a recent study, Van Brussel and colleagues found "a significantly decreased aerobic as well as anaerobic capacity in children with JIA compared with healthy controls" (2007, p. 894). In essence, most children with arthritis can participate in physical education, recess, and most sports on a regular basis but may need to make modifications to their activity level if they experience a flare or exacerbation of their disease symptoms. For example, a child with wrist arthritis may not be able to do push-ups in physical education class; another child may not be able to run the mile but may be able to run half of it and walk the rest. Most children with JIA should be able to attend school on a regular basis. However, some of the children will require two sets of books, or special transportation. (See Table 3 for additional accommodations.)
The best resource for the school nurse is the pediatric rheumatology staff. The rheumatologist and nurse can answer questions, direct school nurses to other resources, provide written documentation advocating for extra support in the school, and triage many issues over the phone. In addition, the rheumatology nurse can provide a brief in-service to the school staff on arthritis. Three excellent resources are the Arthritis Foundation (http://www.arthritis.org), the American College of Rheumatology (http://www.rheumatology.org), and the National Institutes of Health (http://www.nih.gov). Another resource is the local arthritis chapter in your area. They have staff dedicated to increasing awareness and education about arthritis and are a valuable resource for parents. Some chapters offer scholarships to local high school seniors as well as providing scholarships for summer camps for children with arthritis. Parents are usually given these resources at their initial visit, but they may be relying on school nurses for resource assistance because of the frequency of contact and comfort level with their school nurse. Also, when the initial diagnosis is made, the amount of information is often overwhelming for parents, and they may not remember all the information provided. (See Table 4 for recommended readings.)
Arthritis has an impact on the student both in the home and school setting. The pain, frustration, and missed school days may affect learning. The school nurse can serve as the student’s advocate by being aware of the symptoms the student is experiencing as well as the potential side effects of the medications being taken. The school nurse can also encourage and support the student by demonstrating knowledge of the disease process and providing support. Observations and assessment data will provide valuable information to the families and physician of the child in monitoring the child’s disease and the effectiveness of the treatment regime. Familiarity with local resources will assist school nurses in helping families to receive the information and support they need to care for their child with arthritis.
Cassidy, JT, & Petty, RE. In Cassidy, JT, Petty, RE, Laxer, RM, & Lindsley, CB (Eds.). (2005). Chronic arthritis in childhood. Textbook of pediatric rheumatology. (5th ed) 206-260). Philadelphia: Elsevier SaundersCimaz, R, & Falcini, F. In Cassidy, JT, Petty, RE, Laxer, RM, & Lindsley, CB (Eds.). (2005). Skeletal maturation and bone mineralization in the pediatric rheumatic diseases. Textbook of pediatric rheumatology. (5th ed) 716-727). Philadelphia: Elsevier SaundersDunkin, MA. (2007, July/August). Biologics offer hope. Kids Get Arthritis Too 2-3Lahman, TJ. (2004). It’s not just growing pains: A guide to childhood muscle, bone and joint pain, rheumatic diseases, and the latest treatments. New York: Oxford University PressLaxer, RM. In Cassidy, JT, Petty, RE, Laxer, RM, & Lindsley, CB (Eds.). (2005). Pharmacology and drug therapy. Textbook of pediatric rheumatology. (5th ed) 76-141). Philadelphia: Elsevier SaundersPetty, RE, & Cassidy, JT. In Cassidy, JT, Petty, RE, Laxer, RM, & Lindsley, CB (Eds.). (2005). Oligoarthritis. Textbook of pediatric rheumatology. (5th ed) 274-290). Philadelphia: Elsevier SaundersSelekman, J, & Gamel-McCormick, M. In Selekman, J (Ed.). (2006). Children with chronic conditions. School nursing: A comprehensive text (pp.615-645). Philadelphia: F. A. DavisTucker, LB, DeNardo, BA, Stebulis, JA, & Schaller, JG. (1996). Your child with arthritis: A family guide for caregiving. Baltimore: Johns Hopkins University PressVan Brussel, M, Lelieveld, O, Van Der Net, J, Engelbert, R, Helders, P, & Takken, T. (2007, August 15). Aerobic and anaerobic exercise capacity in children with juvenile idiopathic arthritis. Arthritis and Rheumatism (Arthritis Care and Research), 57(6), 891-897Wallace, CA. (2007, November). Pursue remission. Rheumatologist, 1(11), 23-27Wulffraat, NM, & Prakken, BJ. In Szer, IS, Kimura, Y, Malleson, PN, & Southwood, TR (Eds.). (2006). Pharmacological treatment: Approach to the management of refractory arthritis. Arthritis in children and adolescents: Juvenile idiopathic arthritis (pp.431-441). Oxford, UK: Oxford University Press
The Journal of School Nursing, Vol. 24, No. 4,
190-196 (2008)
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Abstract
OVERVIEW OF ARTHRITIS