The goal of occupational and physical therapy in the treatment of children with rheumatic diseases is to enable them to participate in all the activities of everyday life. Integrating cultural norms and developmental stages, therapists help the child develop, maintain, or restore movement and functional abilities. Efficacy in self-management is the ideal.
Despite significant advances in medical management, children with rheumatic diseases continue to have subclinical inflammation and report ongoing pain, fatigue, and functional impairments. Occupational and physical therapists are uniquely placed in the management team to identify and quantify these problems and to educate the child about how to manage these issues.
Optimal treatment of rheumatic diseases of childhood requires early and ongoing intervention by an interdisciplinary team of health professionals. As the medical management of rheumatic diseases has evolved, the spectrum of problems dealt with by therapists has changed dramatically. Management of significant joint contractures, muscle weakness and mobility, and self-care challenges are less frequently the focus of treatment. Today’s therapist must pay attention to both major and subtle functional challenges in physical, emotional, social, and educational spheres. Although the majority of patients seen have juvenile idiopathic arthritis (JIA), therapists are now involved in the treatment of children with the full spectrum of rheumatic diseases.
Whenever possible, therapy interventions are based on evidence. Often, the limited information from studies in childhood rheumatic diseases must be supplemented by information from adult populations with similar diseases, and by personal experience. Occupational and physical therapists are only two components of the therapeutic team. All members must work closely with each other, and the child and family to provide consistent and comprehensive care.
Ideally, therapy assessment and intervention should occur near the time of diagnosis. Initial assessments identify the child’s functional impairments in both physical and psychosocial realms. Their functioning as individuals, within families and in their community, is reviewed. Interventions are triaged and negotiated with the patient and family and are discipline specific. Interventions include nonmedicinal methods of controlling and coping with pain, improvement of joint range, muscle strength and length, activity and functional endurance (Can the patient walk across the street before the light turns red? Can they hold a pen and write without pain for 1 hour?), joint and body mechanics, sleep behaviors, and identification of and compensations for environmental barriers ( Box 14-1 ). Periodic reevaluations should occur throughout the disease course, even during disease remission, since restrictions of function and functional habits often persist beyond the stage of clinically active disease.
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Assess and teach pain management
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Assess and document impairments, and develop solutions to findings
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Assess, document, and minimize functional restrictions
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Develop consistent, reliable measures of changes in range, muscle strength and length, and function over time
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Develop, upgrade, and negotiate with the child and family an exercise program to address the identified deficits
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Evaluate and teach coping skills for symptom management
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Reinforce education of disease process and management
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Educate on the continued need and safety of physical activity
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Teach ergonomics
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Identify the need for and refer to vocational counseling
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Provide ongoing patient and family support
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Facilitate integration into school and community
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Advocate for the child with the family, school, and community
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Refer to and liaise with community therapists
Specific indications that prompt referral to a therapist include symptoms of active disease such as pain, stiffness, and fatigue, or changes in function or participation in social or school activities ( Box 14-2 ). Information that will maximize the effectiveness of a referral includes the child’s specific diagnosis, the extent of and any restrictions imposed by systemic involvement, comorbidities, medications, and planned medical interventions ( Table 14-1 ).
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Active disease
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Significant morning stiffness
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Avoidance of activity or inability to keep up due to pain or weakness
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Overwhelming fatigue
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Restricted/asymmetric movement
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Marked mood or behavioral change, especially isolation from peers
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Regression of age-appropriate development
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Growth abnormalities
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Reduced school attendance or output (>10 days absence in the past 4 months)
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Change in quality of sleep
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Inability to do normal activities in a timely manner
| Multiple system involvement |
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| Comorbidities |
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| At-risk social situation |
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| Abnormal imaging or lab results |
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Symptom Assessment and Management
Many symptoms that affect the child’s function are common to all of the rheumatic diseases. The timing of symptom management is determined by the disease and the degree to which it is controlled. The intervention goals in early disease are to minimize symptoms ( Box 14-3 ); as the disease is controlled, the goals and interventions change to maximize and normalize function ( Boxes 14-4, 14-5, and 14-6 ).
Goal: Minimize Symptoms
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Direct assessment to address patient’s stated problems
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Provide frequent reassessment to monitor changes
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Teach pain management and coping skills
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Teach fatigue management—especially with CTD
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Maintain range, strength, and muscle length using exercises, splinting, and positioning
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Reinforce education on disease management
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Intervene at school with all diagnoses
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Provide adaptive devices as indicated by the child
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Teach sleep hygiene
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Teach coping strategies for systemic symptoms (Raynaud’s phenomenon, uveitis)
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OT/PT interventions should be minimal until disease is under some control
Goal: Maximize Function
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Full assessment to identify and monitor persisting deficits and their impact on the body mechanics
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Modify pain and fatigue management techniques
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Improve function in self-care
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Increase range, and muscle strength and length
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Increase participation in family, school, and leisure activities, especially physical activities
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Improve exercise tolerance and balance
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Introduce the concepts of self-image and self-efficacy to child and family
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Review and monitor necessary school interventions
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Teach coping skills such as time management and pacing activities
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Review understanding of disease management as the child matures
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Interventions reviewed every 4 to 12 weeks
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Focus for the majority of patients is a home program, with short, specific exercises (10 minutes)
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“Hands-on” interventions (e.g., serial casting) may require three appointments/week
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Occasionally intensive inpatient rehabilitation is needed
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Identify and retrain faulty movement patterns
Goal: Normal Function
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Semiannual to annual full assessment to determine if physical and psychosocial sequelae of previous issues persist
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Focus on:
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Abnormal movement patterns
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Mechanical malalignments
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Risk-taking behaviors
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Physical and psychological developmental milestones
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Promote physical and emotional independence
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Work on fine motor control, balance, endurance, power
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Integration/participation in activities, sports, and the community
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Reinforce self-image as a healthy, active individual
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Encourage healthy life choices
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Assess for ongoing pain and fatigue issues
Goal: Optimize Function within Limitations
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Full assessments with any disease flares
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Annual assessment to monitor deficits
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Assess and plan for preoperative and postoperative interventions
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Address changing pain patterns
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Consider adaptations to the environment of the home and school
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Teach effective adaptive movement patterns
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Assess the need for and teach the use of mobility aids
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Problem solve to maintain independence in self-care, and participation in leisure and work activities
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Teach pain coping skills such as cognitive behavioral therapy
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Refer to vocational assessment
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Provide documentation for financial support
Pain Management
Pain is the primary issue leading children and their families to seek medical attention. Unresolved pain is the reason the great majority of patients seek complementary and alternative medicines. Although many young children with oligoarthritis frequently do not report pain, 70% of children with polyarticular JIA and 50% of those with connective tissue disease recorded pain in the week prior to questioning. Pain affects the quality of life in any disease. Even a small decrease in the visual analog pain scale (1 cm) is correlated with a significant improvement in quality of life. The impact of chronic pain is illustrated in Figure 14-1 and ranges from sleep disturbance to joint contractures and psychosocial and educational disturbances.
In the assessment of the child’s pain, it is important to determine and record its parameters (location, duration, intensity, frequency, quality, history, and functional impact on sleep, self-care, play, school, and psychosocial development). Developmentally appropriate outcome measures are used as required. Recognition of pain behaviors is important, especially in those children who report no pain verbally. Social aggression, withdrawal from usual social or physical activities, irritability, or abnormal movement patterns can all indicate the presence of pain. The impact of pain on movement, posture, and development of gross and fine motor milestones should also be noted.
Teaching children age-appropriate nonpharmacological pain-modifying techniques increases their sense of control over the pain and decreases their overall pain experience. Techniques that the child and family can utilize at home are the most useful. These techniques treat pain through peripheral, spinal segmental, supraspinal, and cortical pathways ( Chapter 8 ). The use of thermal modalities, splinting, pacing activities, and ergonomics are particularly suited for home. Heat and cold both reduce pain temporarily. For hot, swollen joints, application of ice over the affected joint until it is erythematous and numb is recommended. Gentle heat is more effective in reducing muscle spasm and morning stiffness. Superficial joints in the hands and feet often respond better to contrast baths, in which the painful part is alternately submerged in hot and cold water. Thermal modalities must be used with caution and the body’s response carefully monitored. Compromised circulation or sensation (e.g., diffuse scleroderma) may contraindicate their use. With rheumatic disease–related Raynaud phenomenon, inappropriate use of thermal modalities can result in tissue damage. Detailed information on thermal interventions and safety issues can be found in the references. Massage by a parent or caregiver to reduce muscle tension can lessen pain. Massage is particularly useful in desensitizing the affected area in children who have a chronic regional pain syndrome with or without an underlying inflammatory disease. Gentle controlled stretches, performed at home, to both muscular and neural structures can also be used to reduce pain but have not been studied in children with rheumatic diseases.
Specific techniques such as cognitive-behavioral therapy, biofeedback, and electrical modalities can be used on an individual basis as needed. They are only appropriate in older or cognitively competent children who can report responses reliably.
Transcutaneous electrical nerve stimulation (TENS) is useful in treating children with complex regional pain syndromes or localized inflammatory pain ( Chapter 52 ). TENS units can be purchased or rented and parents can be taught to use this modality safely at home. Benefit is established within two treatments in those for whom it is effective. Therapist-applied interferential stimulation is also effective in treating pain. There is some evidence in adults with inflammatory disease that low-level lasers reduce pain and morning stiffness.
Variations of cognitive-behavioral techniques such as controlled breathing, progressive relaxation, visualization, and thought stopping can be used anywhere by the child to gain control over pain, and can be taught to children of all ages. Their effectiveness has been demonstrated in children with JIA, and is also useful for children with connective tissue diseases (CTDs) and chronic pain syndromes.
Guidelines for the child’s pain management must be disseminated beyond the family to the school-based team and sport/leisure activity coaches. Children are encouraged to continue to participate in leisure activities to the best of their ability and to use changes in their pain levels to indicate when they should temporarily withdraw. Children are often the best judges of their physical limitations, and their decisions should be respected with few exceptions. Activity restrictions imposed because of comorbidities must be adhered to. In the child with JIA, radiographic evidence of cervical instability precludes participation in contact sports. Particular attention should be paid to the child who is involved in high-level competition, as they may feel obliged to continue despite increasing pain and dysfunction. In this instance, the therapist or parent may need to intervene, especially if the child is at risk for injury.
The importance of continued physical activity at an appropriate level needs careful and repeated explanation to both the child and family to ensure that unnecessary constraints are not imposed. Parents are distressed by their child’s pain and need mentoring to evaluate if increases in pain are normal responses to increased activity, or a true disease flare. There are numerous advantages of continued involvement in physical activity. There is no evidence that exercise results in increased disease activity or damage.
Even after disease control is achieved and pain is no longer a problem, abnormal movement patterns and postures that developed secondary to pain often persist and require a formal retraining program. A child’s confidence in their body’s ability to respond to physical demands may be compromised, and the young child may need encouragement to engage in normal risk behaviors such as jumping and climbing. The older child may require specific physical therapy interventions that target disease-related deficits to successfully return to sports. Sport-specific requirements can be found online. Persistent pain that inhibits function requires reconsideration of the etiology and therapeutic approach.
Fatigue
All rheumatic diseases of childhood are associated with fatigue. Some common causes are uncontrolled disease resulting in anemia, pain, nonrestorative sleep, antalgic movement patterns requiring increased energy expenditure, depression, poor aerobic fitness, and marked weight gain secondary to corticosteroids. Fatigue is often a silent problem that is poorly recognized but has a major impact on quality of life. The relationship between fatigue, fitness levels, and endurance in rheumatic diseases is not clear. Fatigue issues need to be dealt with early in those children with a diagnosis of systemic lupus erythematosus (SLE), mixed connective tissue disease (MCTD), juvenile dermatomyositis (JDM), or vasculitis because it is often a presenting complaint.
Fatigue can be assessed in a number of ways. Older children can score their fatigue on a verbal or visual analog scale or compare their own energy level to that of their peers or to their pre-illness level. The Kids Fatigue Scale is an adapted measurement tool used with children aged 6 to 16. Factors contributing to fatigue can be determined by assessing sleep patterns, looking for abnormal movement patterns or postures, determining endurance for specific activities, and measuring muscle strength. An ergonomic assessment of the home and classroom may indicate environmental contributors to fatigue.
Management of fatigue requires discussion with the child, family, and when appropriate, the school. An understanding of the impact of fatigue on the child’s ability to cope with educational demands will aid the school in adapting demands for academic and athletic participation. Ergonomic issues such as the weight of books carried in a backpack, inappropriate seating, the need to climb multiple flights of stairs, and walk long distances between classes all contribute to fatigue. This, in turn, has a negative impact on the child’s mood and ability to concentrate. Other issues such as the amount of homework and concurrent assignment deadlines also need discussion. The basic concepts of time management and pacing high- and low-energy activities are introduced to help the child achieve functional goals. Underlying issues that contribute to fatigue must be addressed together with healthy lifestyle coaching.
Nonrestorative Sleep
Sleep disturbances are common at every age and during all disease phases.
In the assessment of sleep it is important to know the family norms around sleep times and sleeping arrangements. In the older child and adolescent, inappropriate bedtimes and wake-up times are common, particularly in the child with a pain amplification syndrome. Age-appropriate bedtimes should be encouraged. The interval between bedtime and onset of sleep and the reasons for delay in sleep onset should be determined. The frequency of sleep disruption and the child’s subjective evaluation of the quality of sleep should be recorded. Daytime sleepiness and frequency and duration of naps should be monitored; these can indicate a high fatigue level or poor-quality sleep at night. The child’s sleeping environment and pre-bedtime activities may contribute to sleep disruptions. Corticosteroids, particularly when given at bedtime, and the use of night splints may interfere with sound sleep.
Activities in the bedroom should be limited to those conducive to initiation of sleep. Bedroom activities that promote restlessness or anxiety (such as doing homework, playing on the computer, or watching television) should be discouraged. Avoidance of foods containing high levels of sugar or caffeine, and limitation of exercise close to bedtime may aid initiation of sleep. In general, vigorous aerobic exercise should be avoided within 2 hours of bedtime. Alterations in the physical environment, such as maintaining a comfortable room temperature and exploring variations in the type and weight of bedcovers and the types and styles of pillows, may make it easier for the child to fall asleep. Judicious use of pillows to decrease weight bearing through painful joints can diminish pain and improve sleep quality. If the child shares the bedroom with others, noise issues and bedtime rituals need to be examined. Cognitive-behavioral techniques similar to those used for pain may be required to reduce anxiety and stress, which can make sleep initiation difficult. Improving sleep patterns is a gradual and prolonged process, often requiring at least a month ( Fig. 14-2 ).
Decreased Range of Motion
Restrictions in joint range of motion may reflect intrinsic joint inflammation (increased intraarticular fluid, synovial hypertrophy, pain) or shortening of capsule, ligament, tendon, or muscle. In children with severe, long-standing joint inflammation, joints may become subluxed or ankylosed, resulting in marked limitation or absence of joint motion. In disorders such as scleroderma, tightening of the periarticular soft tissue leads to joint range restriction. In juvenile dermatomyositis, muscle weakness, atrophy, and disuse may limit functional range of motion. Calcinosis resulting in bony blocks and pain in JDM severely limit motion.
Passive range of motion of all affected joints should be assessed using a goniometer in order to obtain precise and reproducible measurements. Active range should also be recorded when it differs significantly from passive range—for example, when a quadriceps lag exists or there is decreased active finger flexion secondary to tenosynovitis. Particular attention should be paid to the tenodesis effect of muscles that cross two joints, such as the gastrocnemius. If the muscle is on a stretch when joint range is measured, a false “joint restriction” may be recorded. During function, a joint may be restricted due to limitations imposed on it by the overlying short muscles. Normal range of motion varies considerably with age and with each individual, and without knowledge of the normal ranges in each child, the development of minor restrictions can easily be overlooked. Between 8% and 37% of the pediatric population is hypermobile, and a decrease in hypermobility may be an important indicator of joint restriction. Loss of hyperextension relative to the opposite side is frequently subtle evidence of a joint effusion in the knee, hip, or elbow. Functional range requirements are related to age and culture. Attention to the quality of movement and the use of compensatory movement patterns is integral to a range assessment. Abnormal motions such as a wrist or knee lateral deviation should also be documented.
A full assessment should be done initially and then at intervals determined by the rate of evolution of the disease and the child’s response to therapy. The initial assessment not only defines the extent of the restrictions but establishes a baseline for comparison.
Techniques to improve joint range include active and passive stretching, mobilization, serial casting, and splinting. Most range deficits can be resolved with a specific, active home exercise program. To maximize adherence, this should not exceed 10 minutes per day. Improvements are evident in 4 to 8 weeks. Muscles need retraining to work again in the newly reacquired range. In mildly active or inactive joints with restricted range of motion, passive stretching at end range and mobilizations to gently stretch tight joint capsules are effective. In children with joint restrictions that persist in spite of adequate active exercise and passive stretching, intraarticular corticosteroid injection followed immediately by serial casting in a position of maximal function should be considered. This technique is most effective for contractures at the knees, wrists, elbows, and ankles. Casts are generally changed every 48 hours until a functional range is achieved (i.e., 0° knee extension, 60° wrist extension, 10° ankle dorsiflexion). A bivalved cylindrical cast is worn as a night splint until passive and active ranges are equal. This goal can be obtained in as little as 48 hours or may take as long as 6 months in long-standing deformities. A long-term range and muscle strengthening exercise program is necessary to maintain the gains in range of motion. Tactile or electrical muscle stimulation at end range can be used to regain functional control. When serial casting is ineffective, tendon lengthening or botox injections could be considered. Respecting the child’s pain during these interventions improves adherence to the prescribed program and produces faster results. Adaptations to joint restrictions (e.g., rocker bars on shoes, reaching aids) may be required either as a temporary measure during early or acute disease, or as a permanent intervention for end-stage damaged joints.
Decreased range of motion secondary to muscle shortening is particularly important in children with JDM and scleroderma. This can be seen in all muscle groups but is more pronounced in those muscles crossing two or more joints. Muscles can shorten as a result of the disease process, adaptation secondary to long-term range loss, abnormal posture or movement patterns, or muscle imbalances. Three 30-second stretches, done daily for 2 to 3 weeks, should improve adaptive shortening. Daytime splinting in the stretched position can prevent progression of deformity.
Muscle Weakness
Muscle weakness in children with rheumatic disease may result from muscle tissue disease, pain, disuse, abnormal use, or may develop secondary to adjacent joint inflammation. It is a particularly serious problem for children with JDM, in which muscle weakness may be severe and prolonged. Generalized muscle wasting and weakness can occasionally be a consequence of the use of high-dose glucocorticoids. Steroid-induced myopathy is predominant in proximal muscles and is usually painless. It can be a confounding factor when assessing patients with JDM, SLE, or vasculitis. Recovery from steroid-induced myopathy can be slow and incomplete.
Muscle strength should be assessed in all muscle groups. In children with dermatomyositis, muscle weakness is predominantly proximal and usually symmetrical. In 29% to 79% of children with JDM there is weakness of the muscles of respiration and swallowing, which needs specialized assessment. In children with inflammatory joint disease, weakness is usually restricted to muscles affected by the involved joints. In children with systemic scleroderma, weakness of the musculature in the hands may be most evident. In linear scleroderma the muscle tissue underlying the skin lesion is affected.
To obtain reliable, reproducible measures of muscle strength that can be compared over time and between therapists, it is essential that standardized procedures be used. Attention to specific limb positions stipulated in muscle testing methods is essential to ensure reproducibility of results. A 5- or 10-point scale for manual muscle tests is most commonly used, but it is subjective. More objective testing devices, such as dynamometers, modified sphygmomanometers, or vigorometers, have age-appropriate norms. Functional muscle tests such as the Childhood Myositis Assessment Scale (CMAS) are also age dependent. The CMAS is an efficient, validated outcome measure for monitoring the effects of myositis in children. It has excellent intrarater and interrater reliability, and correlates well with functional abilities as measured with a Childhood Health Assessment Questionnaire (CHAQ), manual muscle testing, and physician global disease assessment.
The greatest variable affecting all methods of muscle strength assessment is the child’s motivation to exert maximum effort. The degree of effort should be recorded if less than maximum effort is suspected. Loss of muscle bulk is not always consistent with muscle weakness. In very young children with JIA with sustained joint inflammation, and in those with linear scleroderma, full strength often returns but normal bulk frequently does not.
Aerobic exercise capacity is reduced in children with rheumatic disease when compared with their peers. The gold standard for measurement of aerobic capacity is maximal oxygen consumption (VO 2 peak) while on a treadmill or ergonometric bicycle. When this method is not available, the 6- or 9-minute walk test, which measures the distance a child can walk in the prescribed time, is the most commonly used clinical measurement. Once a baseline is defined, a child with diminished exercise capacity is instructed to slowly increase the frequency, intensity, type, and duration of moderate to vigorous physical activities. Frequently, a supervised gym program is required to initiate change. Ongoing improvement and maintenance may require a lifestyle change that is supported by the family. Anaerobic capacity is also significantly reduced in children with JIA and CTD. The muscle power sprint test is a clinical measure of anaerobic capacity.
Assessment of self-care, activities of daily living, and school and leisure activities reflects the impact of pain, weakness, and fatigue on the child. Muscle weakness and decreased endurance can have a direct impact on the ability to participate in activities and may affect self-efficacy. The effort required to keep up can lead to discouragement and mood changes, which in turn can lead to withdrawal from activities. This affects family interactions and expectations. Muscle weakness contributes to fatigue, altered balance, reduced endurance, and vulnerability to physical trauma. For example, teens with significant muscle weakness are at particular risk for injury when negotiating crowded high school hallways. At school, unnecessary physical demands (e.g., climbing three flights of stairs 10 to 15 times a day while carrying a 35-lb backpack) should be minimized. The use of computers with voice recognition and predictive software may be important for the child with significant upper extremity weakness. On rare occasions, mobility aids such as a wheelchair or crutches may be required for generalized weakness.
Physical education teachers and sport coaches need information about the fluctuating nature of rheumatic diseases and the impact of muscle weakness on the child’s ability to participate in athletic activities. Subtle strength deficits are particularly evident during endurance activities. Children should be encouraged to participate in physical education activities to the extent of their abilities, but they should be allowed to modify or be excused from participation in activities that are beyond their limit at a particular time. Exercise programs to address specific as well as generalized weakness include a variety of isometric, isotonic, isokinetic, and concentric and eccentric contractions. Muscle strengthening is started as soon as possible. Pain control will improve effective contractions. In children with JDM, the value of early gentle strengthening is supported by recent literature, with no evidence of detrimental effect. Because of the characteristic pattern of muscle weakness in JDM, emphasis is placed on improving core musculature. Neuromuscular electrical stimulation in combination with voluntary contractions may be beneficial in retraining very weak muscles in older children. With all strengthening exercises, muscle substitution and pain should be avoided. Once muscle strength had been regained, balance, agility, higher level skill development, and functional patterns are introduced. Ongoing monitoring is required.
Decreased Function
Normal function can be defined globally as the individual’s ability to successfully perform self-care and participate in work or school and leisure activities, and depends on both physical and psychological health. Disruption in either sphere will result in impairment, restrictions or disability. Culture and age-appropriate development determine the norms.
Poor School Attendance and Performance
A primary measure of function in a child with a rheumatic disease is school attendance. School absenteeism has a significant impact on academic achievement and is a major problem for children with rheumatic diseases. School issues are the most common stressors for families, even greater than medication side effects. Common symptoms that affect attendance and classroom participation are pain, fatigue, disrupted sleep, poor concentration, drug side effects (such as weight gain and nausea), and limited mobility. Factors related to treatment, such as medical and therapy appointments, or drug administration, such as hourly eye drops or drug infusions, also contribute to school absences. Physical factors that may affect school attendance and participation include the need for transportation to and from school, the physical environment of the school, and any impediments to access to classrooms, washrooms, activity centers, and recreation facilities.
Early involvement with the school establishes an ongoing collaboration with the staff to alert them to potential issues. Children with systemic CTDs or with pain amplification syndromes are at particular risk for prolonged school absences. Subsequent reentry to school may be difficult academically and socially. It may be complicated by fatigue or by altered body image. An altered physical appearance can also lead to bullying or exclusion. Many children benefit from having an individual education plan early in their disease to allow the staff more flexibility in implementing change. Elevator access, an extra set of textbooks, or the use of a laptop computer may be required. Documentation provided by the therapist will support these changes.
The school staff needs to understand the child’s physical and psychological challenges, and the possible safety issues (fracture risk in children with osteoporosis, disease flare due to sun exposure in children with SLE or JDM, and potential tissue damage with cold exposure for children with Raynaud phenomenon). If the child is required to take medications during school hours, discussion with the teacher is necessary, and a plan for the safe storage and administration of medications should be put in place. Teachers frequently identify a change in the child’s ability to concentrate. This may reflect pain or a medication side effect. In children with SLE who have a high risk of neuropsychiatric syndromes, a change in ability to concentrate may also indicate a change in disease activity. A marked change in concentration should be reported to the rheumatologist. Therapists can teach coping skills to minimize the impact, but a formal psychoeducational assessment is often useful to identify specific problem areas to the school-based team.
Restricted Self-Care
Self-care refers to the age-appropriate activities such as eating, dressing, hygiene, cooking, household chores, and shopping. Pain, reduced muscle strength, joint range, balance, and endurance affect the child’s ability to engage in self-care activities in a timely manner. In children with inflammatory joint disease, morning stiffness affects the duration of self-care routines. The timing of medications can make a significant impact on morning activities. A hot shower or bath on first awakening may reduce this stiffness. Additional pain medication may also be of benefit.
A careful history from the child and parent, and observation of the child engaging in self-care activities is useful in determining the degree of difficulty. Validated outcome measurement tools such as the CHAQ, Juvenile Arthritis Functional Assessment Scale, and Juvenile Arthritis Functional Status Index are useful in quantifying self-care limitations and allowing comparisons over time. However, these measures are not always sensitive to individual patient restrictions (see Chapter 7 ).
Interventions to improve self-care include improving range of motion, muscle strength, balance, and endurance, and providing alternative techniques or aids and adaptations. Adherence to exercises is better if improvement affects functional abilities that are important to the child.
Inability to Maintain Leisure Activities
Play is the work of childhood and its value to children’s physical and psychological development cannot be underestimated. Play activities can be divided into three broad categories: quiet recreation, active recreation, and socialization. All three categories should be included in the patient assessment.
Children with a rheumatic disease have a variety of barriers to play and leisure activities either directly or indirectly related to their disease. These activities are often restricted by pain, decreased range of motion or muscle strength, fatigue, and the time limitations imposed by medical appointments and exercise programs. Discussion with the family and child about the importance of balance between work and play is an ongoing part of therapy. Long-term restrictions to play and leisure can lead to arrested skill acquisition and development, and limit the opportunity to build social relationships. It may be necessary to advocate on behalf of the child with coaches, teachers, and the family to facilitate the child’s continued involvement in valued activities. Therapeutic interventions such as exercises should enhance play and leisure activities not replace them. Conversely, play and sport do not eliminate the need for a targeted exercise program.
Decreased Mobility
Impaired mobility results from deficits in one or more of six dimensions: flexibility, strength, accuracy, speed, adaptability, and endurance. Pain and inflammation of joints or muscles affects all dimensions. A thorough assessment of each dimension takes into account physical, social, psychological, and environmental factors. Treatment is driven by assessment findings ( Box 14-7 ). Lower-limb retraining for persistent abnormal movement patterns is particularly effective when carried out in a warm pool. The warmth and buoyancy decreases pain and improves flexibility, allowing more normal movement. Splints and orthotics are used to protect, restore, or improve function by reducing pain from the inflammatory process, supporting joints, or correcting alignment. In adults, persistent malalignment is associated with the early onset of secondary osteoarthritis, and it is likely also true in children. This reinforces the need to minimize malalignments and abnormal movement patterns in children.
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