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| Division of Occupational Therapy - OT Connect Juvenile Rheumatoid Arthritis (JRA)
JRA is an autoimmune disease, which means that the body mistakes it’s own cells and tissues as foreign and attacks those cells and tissues. JRA causes joint inflammation and stiffness and can affect any joint in the body (NIAMS, 2004). The cause of JRA is not exactly known, but it is believed that genetics, emotional trauma, histocompatibility antigens, viruses, and antigen-antibody immune complexes may all play an unclear role in it’s development (Case-Smith, 2001). There are three basic forms of JRA:
Pauciarticular JRA is the most common form, affecting more than 50% of children with JRA. It affects four or fewer joints and usually affects larger joints such as the knee (NIAMS, 2004). Polyarticular JRA generally affects 30% of those with JRA. This form affects five or more joints and is typically seen in smaller joints such as those in the hands and feet. However, this form can also be found in larger joints as well. Polyarticular JRA is usually symmetrical, meaning that it affects the same joints on both sides of the body (NIAMS, 2004). Systemic JRA is the least common affecting only about 20% of children with JRA. Joint swelling, fever, and a light skin rash characterize this form of JRA. Internal organs such as the liver, heart, spleen, and lymph nodes may also be affected. A small percentage of those children with systemic JRA will have involvement of several joints and continue to have severe arthritis into adulthood (NIAMS, 2004). Prognosis for this diagnosis varies. It is dependent on a number of factors, but most children completely recover from JRA within one to two years. Only approximately “15% of children with JRA will have permanent disabilities” (Case-Smith, 2001). Common symptoms/Course of the disease The most common signs and symptoms of JRA are joint swelling, pain and stiffness. Those affected may also experience fever, light rashes, lymph node swelling, and in some cases internal organ involvement (NIAMS, 2004). Some complications of JRA include, anorexia, elevated white blood cell count, listlessness, irritability, growth delay and iridocyclitis. Iridocyclitis is a condition that inflames the iris and ciliary body of the eye leading to blindness if left untreated (Case-Smith). Diagnostic criteria for the diagnosis of JRA are as follows: diagnosis onset before the age of 16, persistent arthritis in one or more joints for at least six weeks, and exclusion of other types of childhood arthritis (Lovell, 2001). It is important to keep in mind that JRA is a disease that presents itself differently in each child. Typically there are periods where the above signs and symptoms may be better, or even disappear, and also times where the symptoms will worsen. However, for some children the symptoms may never be alleviated (NIAMS, 2004). Age of Onset: JRA currently affects 70,000 to 100,000O in the U.S. Onset of JRA typically occurs anytime before the age of 16 with great variance on an exact age of onset. Generally, the disease is not seen in individuals with JRA past the age of 16. However, there are approximately 35,000-50,000 individuals with active JRA persisting into adulthood (Lovell, 2001). Cultural Biases: Race/ethnicity – The occurrence of JRA has been proven to be higher in populations exclusively white and of Northern European ancestry (approximately 57-113 per 100,000 children) versus populations of urban African Americans (approximately 26 per 100,000 children) (Lovell, 2001). Gender Girls under the age of eight are most likely to develop the pauciarticular form of JRA than girls over the age of eight or boys at any age. The other two forms of JRA occur across ages and gender equally (NIAMS, 2004). Current Medical Treatment: Medical management of JRA focuses on the use of various therapeutic drugs. These drugs include salicylates, nonsteroidal antinflammatory analgesic drugs (NSAIDS), gold salt injections, and adrenocortiocosteroids (Case-Smith, 2001). The use of anti-inflammatory medications has recently become more aggressive due to the frequent chronicity and possible irreversible joint damage caused by the disease. NSAIDS are the first choice of treatment for JRA, but often times the use of NSAIDS alone are not sufficient for the management of the disease. Gold salt injections were shown to have equal efficacy in treatment as placebos and are therefore infrequently used. Corticosteroids may be used either systemically or intra-articularly. Systemic corticosteroids are used with those children who have severe, life threatening systemic JRA and intra-articular use is indicated for use with limited joint involvement and is used with Pauciarticular JRA (Lovell, 2001). Occupational Therapy Involvement There are various ways in which occupational therapy can be involved in the treatment of the child with JRA. This treatment typically begins with a comprehensive assessment including the “assessment of pain, edema, ROM, muscle strength, coordination, perception, and daily living independence” (Porr & Rainville, 1999). Evaluation of splinting, adaptive equipment needs, and psychosocial adjustment is also performed (Case-Smith, 2001). Evaluations commonly used to identify deficits and therapeutic needs of the child with JRA identified by Porr & Rainville (1999) are the following:
After the assessment is completed, the treatment is initiated. The main goal of occupational therapy in the treatment of the child with JRA is “help your child function independently. Occupational therapists teach you how to reduce strain on your child’s joints while doing everyday activities. They can also design and fit splints that support and protect weakened joints. Their work is mainly focused on the small joints of the hand” (AOTA, 2004). If any deficits were identified using the above evaluations, the occupational therapist would then integrate the treatment of these deficits into the treatment protocol. Therapists may also perform range of motion (ROM) exercises with the child. These exercises are done to reduce the limitations in activities of daily living caused by inflammation and stiffness of the joints (Case-Smith, 2001). Therapeutic interventions, using various modalities, are also performed to reduce joint stiffness and pain of the child with JRA. These interventions are usually performed as an adjunct to functional activities. Some of the interventions identified by Porr & Rainville (1999) include:
The occupational therapist may also issue the child with JRA a splint. The splint is generally used to “help keep joints in the correct position and relieve pain. If a joint is becoming deformed (bent in the wrong position), a splint may help stretch that joint gradually back to its normal position” (Arthritis Foundation, 2003). The occupational therapist will also be able to identify adaptive equipment needs to best suit the child and increase independence. Some examples of adaptive equipment identified by Case-Smith (2001) and Porr & Rainville (1999) that may be issued to the child with JRA are:
It is important to note that the equipment needs of the child with JRA will often change with the progression or remission of symptom. The main goal of adaptive equipment at any stage of JRA is to promote age-appropriate self-sufficiency in the performance of activities of daily living (Porr & Rainville, 1999). The psychosocial adjustment for the child with JRA is often difficult and may involve going through many different emotions. “Children can feel hurt by an illness that isn't their fault, blame parents for the illness, engage in self-pity, or become angry because of restrictions on activities. They may also resent other children who do not have the disease, including their brothers and sisters” (Arthritis Foundation, 2003). This can lead to many problems for the child with JRA in all contexts of their lives, including school and home environments. Occupational therapists are skilled at the early identification of psychosocial issues, as well as treatment of such deficits. It is important for psychosocial issues to be addressed early in the treatment to facilitate progression of other goals and to prevent a regression of psychosocial status. Some treatment ideas to increase self-esteem adapted from the Arthritis Foundation (2003) follow:
References
How OT Makes a Difference: Evidence-Based Practice Spelbring, L. M., Kirchman, M. M. & Miller, R. B. (1965). The use of activities in rheumatic diseases. American Journal of Occupational Therapy, 19(5), 259-263. It was discovered in 1965 that there was no evidence supporting the effectiveness of occupational therapy in the treatment of rheumatic diseases. The authors identified occupational therapy’s primary objectives in the treatment of JRA to be “assisting in the adjustment to the discomfort and problems involved in having the disease, the maintenance or restoration of physical and mental function, the prevention of pain and deformity and the re-establishment of performance.” It was found that the choice of treatment and its subsequent effectiveness in reaching these identified goals, were dependent upon the stage of the JRA. For example, the child in the acute stages of JRA may require treatment that focuses on encouraging the use of the uninvolved joints and the prevention of psychological and physical dependency. This differs from the treatment that a child in the rehabilitative stage might benefit from. In this stage, the focus should be on physical maintenance and restorative activities. By treating the child with JRA in accordance to the stage that they are in, rather than treating JRA as a whole, it was identified that treatment can prove to be very beneficial. Stenstrom, C. (1994). Home exercise in rheumatoid arthritis functional class II: Goal setting versus pain attention. Journal of Rheumatology, 21(4), 627-634. The use of a home exercise program in the treatment of JRA has often been indicated to help keep joints mobile, keep muscles strong, regain lost motion or strength, make performance of activities easier, and improve endurance. A study was conducted on the affects of a home exercise program on improved functional performance. It was found that the subjects in the experimental group who performed the home exercise experienced an “increased capacity in most functional tasks, decreased activity induced pain, and increased joint mobility”, as well as an increase in self-efficacy for mood. This further supports the past speculations that the use of a home exercise program should be an integral part of treatment for the child with JRA. Van Deusen, J., & Harlowe, D. (1987). The efficacy of the ROM dance program for adults with rheumatoid arthritis. American Journal of Occupational Therapy, 41(2), 90-95. Range of motion (ROM) exercises are part of a treatment protocol typically used in the treatment of JRA both in the clinic and possibly at home. The purpose of performing ROM on the child with JRA is to prevent contractures, and other limitation in functional performance brought on my inflammation and stiffness in the joints. This study was conducted on a group of adults with rheumatoid arthritis using a ROM dance program. Therefore, some of the results, such as reports of enjoyment, are a result of the nature of the dance program and not the direct use of ROM. However, it was also found that subjects showed significantly increased upper-extremity range of motion after four months of the program. Although this study was conducted on adults, there is a significant reason to believe that similar results would be found if the study were conducted on children with JRA. This is due to the fact that the signs and symptoms of both JRA and adult onset rheumatoid arthritis are virtually analogous. This solidifies the occupational therapy theory that the use of ROM on a child with JRA will increase their ROM by preventing joint immobility caused by inflammation, pain and stiffness in the joints. “Scarlet” is a nine year old female with Juvenile Rheumatoid Arthritis (JRA). She was diagnosed at the age of six. For the past three years her and her family have dealt with the disease and its’ impact on their lives the best way they know how. “Scarlet” has idiopathic arthritis, where her joints swell up and become very stiff. During these times, she is unable to do all of the activities that she enjoys, such as running and playing with friends. She says that when she runs it hurts in her shoulders and hips. “Scarlet” must also use the assistance of a wheel chair to get around during times when her pain is at its’ worst. When “Scarlet” was first diagnosed with JRA her and her family tried several medical interventions to help ease her pain caused from the disease. One type of intervention included experimenting with several drugs, such as Methotrexate (chemotherapy), Intravenous steroids, Anti-TNF, Ibuprofen, Paracteomol, Folic Acid, and Calcium. All of these drugs were used in an attempt to manage the side-effects of JRA. “Scarlet” also was admitted to the hospital for a two-week time frame in order to receive joint injections in her hips. These were given to reduce the stiffness, inflammation, and pain in the area. “Scarlet” and her family soon realized that receiving medical interventions alone was not sufficient in dealing with the disease. “Scarlet” started receiving hydrotherapy exercises, performed in a pool, as well as occupational therapy. The occupational therapist who evaluated “Scarlet” identified that the use of ROM exercises, weight bearing exercises, modalities, adaptive equipment, and a home exercise program would be very beneficial to “Scarlet”. The exercises were done at times when her pain, stiffness, and inflammation were minimal. These prevented limitations in mobility and helped her to gain back lost strength so that she could return to activities that she was unable to perform during the exacerbation of her symptoms. A home exercise program was also given to the family to ensure that “Scarlet’” gained as much strength as possible. During times when her symptoms were severe, the occupational therapist would use modalities, such as paraffin, and moist heat, to reduce inflammation and pain prior to the performance of functional activities. The occupational therapist also identified that “Scarlet” would benefit from the use of adaptive equipment to help her perform several activities that she was unable to during the exacerbated stages of her JRA. This equipment included pencil grips to help her with her school-work, dressing aids (reacher, sock-aid) to help her independently dress, and utensils with built-up handles so that “Scarlet” could independently feed herself. These were all areas that the “Scarlet” and her family identified as being important to them. “Scarlet” said that she did not want someone else to have to feed or dress her. “Scarlet” has been receiving ongoing occupational therapy interventions for the past year. Her family states that this is the happiest and most independent they have seen their daughter since before she was diagnosed with JRA. She is now able to perform activities, both in school and at home, that she enjoys and has learned ways to adapt those activities when her symptoms are at their worst.
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