CRITICAL ELEMENTS OF CARE for JUVENILE ARTHRITIS Practical steps to diagnose, treat, and manage juvenile arthritis one of the most common childhood diseases A consensus document developed in collaboration with the Arthritis Foundation, Michigan Chapter, and the Michigan Department of Community Health, as part of the Michigan Arthritis Action Plan. CRITICAL ELEMENTS OF CARE for JUVENILE ARTHRITIS The Michigan Rheumatism Society unanimously endorses the Critical Elements of Care for Juvenile Arthritis. This is an important state initiative and we thank the Juvenile Arthritis Initiative Expert Panel, the Arthritis Foundation and the Michigan Department of Community Health. -Joseph G. Skender, MD, President of the Michigan Rheumatism Society September 2002 Critical Elements of Care (CEC) was designed to educate and support those caring for a child with Juvenile Arthritis. The guidelines were developed through a consensus process by the Michigan Juvenile Arthritis Initiative Expert Panel as part of the Michigan Arthritis Action Plan. THE MICHIGAN JUVENILE ARTHRITIS INITIATIVE EXPERT PANEL: Barbara S. Adams, MD Pediatric Rheumatologist, University of Michigan Health System, Ann Arbor, MI Representative for the American College of Rheumatology Christine Anderson, MD Family Practice Physician, University Health Services, Ann Arbor, MI Representative for the Michigan Academy of Family Physicians George Baker, MD Chief Medical Consultant, Michigan Department of Community Health, Lansing, MI Representative for Children’s Special Health Care Services James Chinarian, MD Physiatrist, Children’s Hospital of Michigan, Detroit, MI Mary Williams Clark, MD Pediatric Orthopaedic Surgeon Sparrow Regional Children’s Center, Lansing, MI Carole Dodge, OTR Occupational Therapist, University of Michigan Health System, Ann Arbor, MI James E. Dowd, MD Adult and Pediatric Rheumatologist, Private Practice, Howell, MI Representative for the Michigan Rheumatism Society Chris Elkins, MD Pediatrician, Primary Pediatrics, Ann Arbor, MI Margaret Fankhauser, DO Osteopathic Physician, Private Practice, Ann Arbor, MI Representative for the Michigan Osteopathic Association Dennis Furlong, PA-C Physician Assistant Pediatric and Family Care of Rochester Hills, Rochester Hills, MI Representative for the Michigan Academy of Physician Assistants Karen L. Kerr, MSN, RN, CS, CPNP Pediatric Nurse Practitioner, Pediatric Rheumatology Children’s Hospital of Michigan, Detroit, MI Representative for the Michigan Chapter of the National Association of Pediatric Nurse Practitioners Dietrich Wilhelm Roloff, MD Medical Consultant, Michigan Department of Community Health, Lansing, MI Representative for Children’s Special Health Care Services Mark Takagishi, MD Pediatrician, Lansing Pediatric Associates, Lansing, MI Dawn Welch, PTMA Physical Therapist, Bronson Rehabilitation Services, Kalamazoo, MI STAFF Dawn Hafeli Vice President for Programs Arthritis Foundation, Michigan Chapter, Southfield, MI Karen Petersmarck, PhD, MPH Public Health Consultant, Division of Chronic Disease and Injury Control Michigan Department of Community Health, Lansing, MI Sharon Waldrop Project Coordinator, Juvenile Arthritis Initiative Arthritis Foundation, Michigan Chapter, Southfield, MI The Michigan Juvenile Arthritis Initiative Expert Panel acknowledges the Center for Children with Special Needs at Children’s Hospital and Regional Medical Center, Seattle, WA, for its work in developing Juvenile Rheumatoid Arthritis Critical Elements of Care (01/2000), which provided an excellent starting point for the Michigan document. Special thanks to Gary L. Freed, MD, MPH, University of Michigan, Ann Arbor, MI, for providing consult based on his research project, Patterns of Care for Children with Rheumatologic Diseases, with Leonard Stein, MD. Critical Elements of Care for Juvenile Arthritis CONTENTS Section 1: Overview of Juvenile Arthritis Figure 1: Team Care Co-Management of Children with Juvenile Arthritis Section 2: When to Consider a Diagnosis of Juvenile Arthritis Section 3: Juvenile Arthritis Management Section 4: Juvenile Arthritis Treatment Figure 2: Figure 3: 1 4 5 8 9 ACR Criteria for the Classification of Juvenile Arthritis 12 Characteristics of Juvenile Arthritis by Type of Onset 13 Diagnostic & Treatment Algorithms Algorithm 1: Pauciarticular Juvenile Arthritis 14 Algorithm 2: Polyarticular Juvenile Arthritis 15 Algorithm 3: Systemic Juvenile Arthritis 16 Appendices Appendix 1: Medications in Juvenile Arthritis 17 Appendix 2: Laboratory and Imaging Considerations 18 Appendix 3: Physical & Occupational Therapy 21 Appendix 4: When is Ophthalmologic Screening Needed 24 Appendix 5: Juvenile Arthritis Worksheet for Primary Care 25 Appendix 6: Key Resources References 26 28 Symbol Key Authors of this document strongly encourage referral/consult with a pediatric rheumatologist. Additional information is available in the Appendices. Section 1 OVERVIEW OF JUVENILE ARTHRITIS WHAT IS THE PURPOSE OF THIS DOCUMENT? This document was developed to assist primary care providers to recognize juvenile arthritis, begin appropriate treatment, and participate actively in co-managing children with this disease. It should also serve as a useful reference for medical and surgical specialists and other health care providers who may encounter children with arthritis in their practice. WHAT IS JUVENILE ARTHRITIS? Juvenile arthritis1 is defined as the onset of persistent synovitis in 1 or more joints for more than 6 weeks (usually more than 3 months) in a child under the age of 16 years with all other diagnoses being excluded (e.g., infection, malignancy, other systemic inflammatory diseases). HOW COMMON IS JUVENILE ARTHRITIS? Juvenile arthritis is one of the most common chronic diseases in children, with an estimated prevalence between 16 and 150 per 100,000 children under the age of 16 years in the United States. Combined, the rheumatic diseases of childhood are as prevalent as childhood diabetes. Thus, pediatric primary care providers can expect to encounter children with chronic arthritis in their practice. WHAT IS THE IMPACT OF JUVENILE ARTHRITIS? Childhood arthritis is an important cause of short term morbidity in children and can lead to long-term disability. The disease can have a devastating impact on the affected family. Proper diagnosis and early aggressive intervention can minimize both the short and long-term morbidity of this disease, thereby improving outcomes for these children and improving quality of life for them while their disease is active. Interventions must include psychosocial and financial supports to assist the child and family in contending with the disease and preserving the family (see P. 10 for more information on psychosocial aspects). 1 The nomenclature previously used was JRA or Juvenile Rheumatoid Arthritis. The authors of this document believe juvenile arthritis is a more effective term as it encompasses all types of arthritis in children. 1 Section 1: Overview of Juvenile Arthritis WHY IS PROMPT, AGGRESSIVE TREATMENT OF JUVENILE ARTHRITIS NECESSARY? HOW TO DIAGNOSE JUVENILE ARTHRITIS? HOW IS JUVENILE ARTHRITIS MANAGED? In the last decade important new therapies have become available for juvenile arthritis that can prevent long-term disabilities. Without prompt, aggressive treatment, published studies demonstrate that: 〈 Children with juvenile arthritis may continue to have active disease as they enter adulthood adulthood. 〈 Persistent synovitis can lead to joint deformity and destruction in as little as two years following onset of disease. 〈 Children can develop eye disease and even blindness from certain forms of juvenile arthritis. 〈 Disruption of proper joint function predisposes children and young adults to premature osteoarthritis and a lifetime of potential disability. 〈 Chronic disability from juvenile arthritis can stunt the physical and psychological growth of a child, and may disrupt family dynamics due to ongoing psychological and economic stresses. The presentation of juvenile arthritis includes single or multiple joint swelling, loss of function, extremity pain, fever. (See SECTION 2: When to Consider a Diagnosis of Juvenile Arthritis, P. 5) Diagnosis can be made with a comprehensive history, physical examination, and laboratory evaluation (see p. 6 for more details). Effective management of children with juvenile arthritis involves multiple components (See Figure 1: Team Care, P. 4): 1) 2) 3) 4) 5) 6) Medical management Family-centered, community-based, coordinated care Psychosocial management Musculoskeletal rehabilitation Well-child health issues Continuity of care The child’s primary care provider plays an important role in disease comanagement, providing well-child evaluations, anticipatory guidance, management of intercurrent illnesses, and coordination with community resources. Effective communication between the pediatric rheumatology team, primary care provider, child and family, and community-based agencies is critical in the ongoing management of children with juvenile arthritis. (Community agencies and resources are listed on P. 10, and APPENDIX 6: Key Resources, P. 26) The Arthritis Foundation can assist both the primary care provider and family with coordination of community resources. Call the Arthritis Foundation at 248-424-9001 or 800-968-3030 (Michigan only). 2 Section 1: Overview of Juvenile Arthritis WHAT IS THE TREATMENT GOAL FOR JUVENILE ARTHRITIS? The treatment goal is disease remission with return to normal activities. In order to reach this goal, health care providers must recognize the presenting signs and symptoms of childhood arthritis and confirm the diagnosis as early as possible, so that appropriate therapy can be initiated promptly. Treatments should be adjusted to induce remission, and maintain long-term disease remission. It is widely thought that a comprehensive team approach is associated with a superior outcome. Medications and physical and occupational therapy play a vital role in treating juvenile arthritis. Please refer to the following sections for detailed treatment/medication information: SECTION 4: Juvenile Arthritis Treatment, P. 9 DIAGNOSTIC & TREATMENT ALGORITHMS, P. 14 APPENDIX 1: Medications in Juvenile Arthritis, P. 17 APPENDIX 3: Physical & Occupational Therapy, P. 21 HOW CAN A PEDIATRIC RHEUMATOLOGIST HELP? Referral to a pediatric rheumatologist (or consult by phone) to ensure correct diagnosis and treatment is recommended for all children suspected of having juvenile arthritis. Pediatric rheumatologists and their comprehensive multidisciplinary teams can provide expertise in the co-management of children with arthritis. (See Figure 1: Team Care, P.4) HOW DO I LOCATE A PEDIATRIC RHEUMATOLOGIST? For a listing of pediatric rheumatologists please contact your local Arthritis Foundation chapter or visit them online at www.arthritis.org. If you need assistance, call the Arthritis Foundation, Michigan Chapter toll-free at 800968-3030 (Michigan only), or 248-424-9001. 3 FIGURE 1 TEAM CARE CO-MANAGEMENT OF CHILDREN WITH JUVENILE ARTHRITIS PEDIATRIC RHEUMATOLOGY SPECIALTY CENTER Pediatric Rheumatologists, Pediatric Rheumatology Advanced Practice Nurses, Pediatric Rheumatology Nurses, Physician Assistants, Occupational Therapists, Physical Therapists, Allied Health Services, Other Pediatric Specialists, Special Laboratory & Imaging Services, etc. PRIMARY CARE Family Physicians, Pediatricians, Nurse Practitioners, Physician Assistants, etc. CHILD & FAMILY OPHTHALMOLOGIST See APPENDIX 4: Ophthalmology Screening, P. 24 4 SCHOOL & COMMUNITY AGENCIES Section 2 WHEN TO CONSIDER A DIAGNOSIS OF JUVENILE ARTHRITIS WHAT IS THE CLINICAL PRESENTATION OF JUVENILE ARTHRITIS? 1) SINGLE OR MULTIPLE JOINT SWELLING 2) LOSS OF FUNCTION persistent or worsening, including: 〈 Inability to bear weight (URGENT EVALUATION NEEDED) 〈 Regression in physical skills Avoiding physical activity Not able to keep up with peers in usual physical activities Not able to open containers, carry heavy objects Not able to feed or dress self Not using an extremity Not able to get out of bed 〈 Failure to achieve developmental milestones or losing milestones 〈 Missing school 〈 No signs or symptoms of significant trauma 3) EXTREMITY PAIN especially with: 〈 Interference with activities of daily living, play, sports, and school 〈 Prolonged duration 〈 Worsening or persistent symptoms when associated with history of trauma 4) FEVER especially characterized by: 〈 Duration >10 days without apparent cause 〈 Peak temperature > 103 o F (39.5 o C) 〈 Daily return of temperature to <100 o F (<38 o C) 〈 Associated with a transient erythematous rash 5 Section 2: When to Consider a Diagnosis of Juvenile Arthritis HOW IS A CHILD EVALUATED FOR JUVENILE ARTHRITIS? 1) COMPREHENSIVE HISTORY a complete history with full description of symptoms, including: 〈 The severity, onset, timing, and duration of pain, as well as aggravating and alleviating factors Pain from juvenile arthritis is usually worse in the morning and after periods of inactivity Activity often decreases pain symptoms in juvenile arthritis Pain from juvenile arthritis is usually not severe enough to awaken a child from sleep 〈 The presence or absence of stiffness from inactivity 〈 The presence, timing and duration of a limp 〈 Previous treatments and their efficacy 2) COMPLETE PHYSICAL EXAMINATION with special attention to musculoskeletal: 〈 Range of motion in all joints (including TMJ, neck) 〈 Joint swelling, presence of fluid in larger joints (e.g. knee and elbow) 〈 Presence of bony overgrowth (accelerated growth in the epiphysis near the involved joint) 〈 Muscle atrophy around involved joint 〈 Muscle weakness See APPENDIX 5: Juvenile Arthritis Worksheet for Primary Care, P. 25 3) LABORATORY EVALUATION: 〈 Juvenile arthritis cannot be diagnosed or confirmed by laboratory testing! 〈 Laboratory results may be useful to exclude critical diagnoses (e.g., infection or malignancy) 〈 Imaging studies may be useful to corroborate clinical findings, and to exclude bony defects, infection, and tumors 〈 Consider labs, imaging studies, biopsies as indicated by history and physical exam See APPENDIX 2: Laboratory and Imaging Considerations, P. 18 6 Section 2: When to Consider a Diagnosis of Juvenile Arthritis WHAT IS THE DIFFERENTIAL DIAGNOSIS OF JUVENILE ARTHRITIS? 〈 Infection: osteomyelitis, septic arthritis 〈 Malignancy: tumor, leukemia 〈 Other rheumatic diseases: juvenile dermatomyositis, systemic lupus erythematosus, vasculitis 〈 Inflammatory bowel disease 〈 Significant trauma 〈 Internal structural abnormality (e.g., osteochondritis dissecans) 〈 Post-infectious arthritis 〈 Benign musculoskeletal limb pain of childhood (also known as “growing pains”) 〈 Hypermobility 〈 School phobia, school avoidance 〈 Other stress-related pain amplification If a diagnosis of juvenile arthritis is a consideration, expedient referral to a pediatric rheumatologist (or consult by phone) is recommended to guide evaluation and management. For a listing of pediatric rheumatologists please contact your local Arthritis Foundation chapter or visit them online at www.arthritis.org. If you need assistance, call the Arthritis Foundation, Michigan Chapter toll-free at 800-968-3030 (Michigan only), or 248-424-9001. 7 Section 3 JUVENILE ARTHRITIS MANAGEMENT WHAT IS THE OVERALL GOAL? HOW IS REMISSION DEFINED? Complete remission of disease with return to normal function. 〈 〈 〈 〈 Less than 15 minutes of morning stiffness No joint effusion/swelling No joint pain Normal Hct for 2 consecutive months (if anemia is secondary to inflammatory disease) Once there is complete remission, effective medications are continued for 6 to 12 months before tapering. WHAT ARE THE IMMEDIATE GOALS OF TREATMENT? 8 〈 〈 〈 〈 Control symptoms Arrest inflammatory process Preserve function Prevent deformity Section 4 JUVENILE ARTHRITIS TREATMENT WHAT TYPES OF MEDICATIONS ARE USED IN JUVENILE ARTHRITIS? 1) NSAIDs (non-steroidal anti-inflammatory drugs) - both traditional and COX-2 inhibitor 2) Intra-articular long-acting steroids - administered by appropriate specialist 3) DMARDs (disease modifying agents) - i.e. Methotrexate (in consultation with pediatric rheumatologist) 4) Biologics (in consultation with pediatric rheumatologist) See DIAGNOSTIC & TREATMENT ALGORITHMS beginning on page 14, and APPENDIX 1: Medications in Juvenile Arthritis, P. 17 HOW CAN PHYSICAL & OCCUPATIONAL THERAPY HELP? Refer to a physical therapist and/or an occupational therapist (PT/ OT) if there is compromised joint range of motion, muscle strength, mobility, or age-appropriate function. Periodic evaluation and treatment is needed as indicated by the patient’s functional status. The following interventions may be considered: 〈 Professional therapy sessions 〈 Home exercise program individualized by a PT/OT 〈 School exercise therapy program* 〈 Splints/orthoses; serial casting 〈 Assistive devices for ambulation, school activities, and daily living tasks 〈 Patient/family education program regarding joint protection 〈 Heat: paraffin, local heat 〈 Aqua (pool) therapy *PT/OT to coordinate with school system’s department for school therapy. See APPENDIX 3: Physical & Occupational Therapy, P. 21 9 Section 4: Juvenile Arthritis Treatment WHAT PSYCHOSOCIAL ASPECTS NEED ATTENTION? While it is important to appropriately manage the medical aspects of arthritis in children, it is equally important to provide psychosocial interventions when appropriate: 1) Patient/family education At initial diagnosis address: specific diagnosis, usual course with treatment, usual prognosis, therapies including medications, resources for more information. At follow-up: answer questions that have occurred after initial information has been absorbed and review for accuracy and completeness. 2) Psychosocial support - educational information concerning stresses of chronic illness on siblings and parents. 3) Community resources - Arthritis Foundation: 800-968-3030 or 248-424-9001 4) School-based resources/POHI (Physical and Otherwise HealthImpaired) services - support parents with intervention at school. Provide them with information concerning chronic illness and school performance, and appropriate expectations during acute flares and remissions. Also, monitor school performance. 5) Information and referral regarding insurance coverage and benefit coordination, if needed, through Children’s Special Health Care Services. See APPENDIX 6: Key Resources, P. 26 WHAT FOLLOW-UP NEEDS TO OCCUR? 10 Children should be seen sufficiently frequently to monitor and appropriately adjust medications and therapy, and assess overall well-being. 1) HISTORY 〈 Medications and medication compliance Is dose adequate to weight? 〈 Morning stiffness How many days per week? Minutes per day? 〈 Joint pain Has joint function returned to normal? 〈 Function, ability to keep up with peers 〈 Appetite, GI symptoms 〈 Date of last ophthalmology exam See APPENDIX 4: Ophthalmology Screening, P. 24 〈 Intercurrent illnesses 〈 School performance, peer relationships Is child attending school regularly? 〈 Changes in family situation 〈 Psychosocial issues 〈 Interval to next visit Section 4: Juvenile Arthritis Treatment 2) PHYSICAL EXAM 〈 Growth (height and weight) Is child growing appropriately? 〈 Vital signs 〈 Temperature 〈 All joints examined, including spine: Range of motion Effusions/swelling Heat Bony deformity, muscle atrophy 〈 Gait (walking and running) Is it improving? Worse? 〈 Muscle strength 〈 Skin 〈 Abdomen 〈 Other areas as indicated by history 3) PHYSICAL/OCCUPATIONAL THERAPY 〈 Input from most recent visit 〈 Home exercise program 〈 School exercise program 〈 Splints 〈 Age-appropriate functional activities 〈 Activity tolerance 4) OTHER 〈 Lab, x-rays, eye exam HOW IS DISEASE ACTIVITY ASSESSED? WHAT IS THE PLAN FOR FURTHER CARE? 1) 2) 3) Disease status: worse, same, improving, remission? Function: worse, same, improving, normal? Other issues? Treatment plan and follow up visits should include: 〈 Change or modify medications? 〈 Change or modify physical/occupational therapy? 〈 Change or modify splints? 〈 Appropriate lab monitoring? 〈 Interval to next visit? 〈 Communication with other team members? 〈 Ongoing patient/family education 11 FIGURE 2 AMERICAN COLLEGE OF RHEUMATOLOGY CRITERIA FOR THE CLASSIFICATION OF JUVENILE ARTHRITIS 1) Age of onset < 16 years 2) Arthritis in one or more joints, defined as swelling or effusion, or presence of two or more of the following signs: · Limitation of range of motion · Tenderness or pain on motion · Increased heat 3) Duration of disease > 6 weeks 4) Type of onset of disease during first 6 months is classified as: · Polyarticular disease (polyarthritis): 5 or more joints · Pauciarticular disease (oligoarthritis): 4 or fewer joints · Systemic disease: arthritis with intermittent fever 5) Exclusion of other forms of juvenile arthritis including spondyloarthropathies Modified from Cassidy, J. T., & Petty, P. E. (1995). Textbook of Pediatric Rheumatology, 3rd ed. Philadelphia: W. B. Saunders 12 FIGURE 3 CHARACTERISTICS OF JUVENILE ARTHRITIS BY TYPE OF ONSET Polyarthritis (Polyarticular) Oligoarthritis (Pauciarticular) Systemic Disease Frequency of cases 30% 60% 10% Number of joints involved >5 <4 Variable Age at onset Throughout childhood; peak at 1-3 yr Early childhood; peak at 1-2 yr Throughout childhood; no peak Sex ratio (F:M) 3:1 5:1 1:1 Extra-articular manifestations* (e.g., fever, lymphadenopathy, organomegaly, hepatosplenomegaly, growth failure) Moderate involvement Not present Prominent Occurrence of uveitis/ iritis* (inflammatory eye disease) 5% 20% Rare Presence of rheumatoid factor 10% (increases with age) Rare Rare Antinuclear antibodies 40-50% 75-85% in girls with uveitis 10% Prognosis with early diagnosis & appropriate treatment* Good to excellent Excellent Good to excellent Frequency of seropositivity Adapted from: Cassidy, J. T., & Petty, R. E. (2001). Textbook of Pediatric Rheumatology 4th ed. Philadelphia: W.B. Saunders, p. 219. *Modified for clarification by Michigan Juvenile Arthritis Initiative Panel consensus. 13 (see APPENDIX 3: Physical & Occupational Therapy, P. 21) · Initial ophthalmology examination & periodic follow-up ophthalmic exams according to recommendations (see APPENDIX 4: Ophthalmology Screening, P. 24) · Recommend referral to pediatric rheumatologist for consultation and co-management · Physical therapy/occupational therapy as appropriate Refer or consult a pediatric rheumatologist Refer/treat as appropriate dose, route & schedule · Patient/parent education · Heat therapy (hot baths) UNCLEAR NO · Lyme Arthritis · Juvenile Ankylosing Spondylitis · Juvenile Psoriatic Arthritis · Villonodular Synovitis · Sarcoidosis · Tuberculosis · Arthritis with Inflammatory Bowel Disease (e.g., Osteochondritis Dissecans) · Internal Structural Abnormality · Non-steroidal anti-inflammatory drug (NSAID) at appropriate YES Pauciarticular Juvenile Arthritis? (See FIGURE 3, P. 13, for characteristics) ligament sprain, fracture) · Pauciarticular Juvenile Arthritis · Seronegative Spondyloarthropathy · Septic Arthritis · Reactive Arthritis · Malignancy · Hemophilia · Trauma (including traumatic effusion, Differential Diagnosis: Pauciarticular Juvenile Arthritis Arthritis in < 4 joints DIAGNOSTIC/TREATMENT ALGORITHM 1: PAUCIARTICULAR JUVENILE ARTHRITIS 14 REMISSION = No evidence of active synovitis for 12 months after discontinuation of all medications GOAL = REMISSION and signs of arthritis for 6-12 months · After 6-12 months, without evidence of active synovitis, begin to wean medication · Continue medication therapy until free of symptoms begin to wean medication · After 6-12 months, without evidence of active synovitis, and signs of arthritis for 6-12 months · Continue medication therapy until free of symptoms YES Improvement in 4-8 weeks? YES YES NO Or FLARE · · · · · Recommend referral to pediatric rheumatologist · Consider starting Methotrexate · Consider an MRI or synovial biopsy NO Improvement in 4-8 weeks? Change to different NSAID NO Improvement in 4-8 weeks? Check NSAID dose to make sure it is in therapeutic range If no NSAID side effects, adjust dose to upper limits of therapeutic range If only 1-2 joints involved, consider intra-articular steroid injection If severe, unremitting uveitis, refer to a pediatric rheumatologist to begin Methotrexate YES UNCLEAR NO Is malignancy ruled out? NO ophthalmic exams according to recommendations (see APPENDIX 4: Ophthalmology Screening, P. 24 ) · Initial ophthalmology examination & periodic follow-up (see APPENDIX 3: Physical & Occupational Therapy, P. 21) · Physical therapy/occupational therapy as appropriate YES Refer or consult a pediatric rheumatologist Refer/treat as appropriate · Lyme Arthritis · Sarcoidosis · Malignancy · Arthritis with Inflammatory Bowel Disease · Hemophilia · Recommend referral to pediatric rheumatologist for consultation and co-management · If severe arthritis, consider adding Methotrexate and folic acid · Patient/parent education · Heat therapy (hot baths) dose, route & schedule · Non-steroidal anti-inflammatory drug (NSAID) at appropriate NO Severe, painful arthritis or refusal to walk? YES Polyarticular Juvenile Arthritis? (See FIGURE 3, P. 13, for characteristics) · Polyarticular Juvenile Arthritis · Juvenile Ankylosing Spondylitis · Juvenile Psoriatic Arthritis · Systemic Lupus Erythematosus · Seronegative Spondyloarthropathy · Reactive Arthritis Differential Diagnosis: Polyarticular Juvenile Arthritis Arthritis in > 5 joints DIAGNOSTIC/TREATMENT ALGORITHM 2: POLYARTICULAR JUVENILE ARTHRITIS 15 REMISSION = No evidence of active synovitis for 12 months after discontinuation of all medications GOAL = REMISSION begin to wean medications · After 6-12 months, without evidence of active synovitis, and signs of arthritis for 6-12 months · Continue medication therapy until free of symptoms If FLARE and signs of arthritis for 6-12 months · If focal or problematic joint, consider intra-articular steroid injection · After 6-12 months, without evidence of active synovitis, begin to wean medications · Continue medication therapy until free of symptoms YES Improvement in 4-8 weeks? YES YES YES NO Or FLARE · · · · Consider changing to different disease modifying agent NO Improvement in 12 weeks? If Methotrexate dose maximized, consider TNF blocking biological agents NO Improvement in 4-8 weeks? · Increase Methotrexate stepwise up to 1 mg/kg/week or 30 mg q week · Consider changing Methotrexate to SQ route · Methotrexate requires laboratory monitoring · Consider adding other disease modifying agents · If focal or problematic joint, consider intra-articular steroid injection · Recommend referral to pediatric rheumatologist NO Improvement in 4 weeks? Check NSAID dose to make sure it is in therapeutic range If no NSAID side effects, adjust dose to upper limits of therapeutic range If severe disease, add Methotrexate and folic acid Recommend referral to pediatric rheumatologist for consultation and co-management NO UNCLEAR NO · Non-steroidal anti-inflammatory drug (NSAID) at YES Life-threatening symptoms? i.e. pericarditis YES Systemic Juvenile Arthritis? (See FIGURE 3, P. 13, for characteristics) · Systemic Juvenile Arthritis · Infection · Inflammatory Bowel Disease · Malignancy · Systemic Lupus Erythematosus · Juvenile Dermatomyositis · Mixed Connective Tissue Disease · Vasculitis (e.g., polyarteritis nodosa) · Familial Mediterranean Fever Differential Diagnosis: Strongly recommend referral to pediatric rheumatologist for consultation and co-management of this difficult disease consultation and co-management · IV methyl prednisolone 30 mg/kg/d (to max dose of 1 gm) x 3d, if malignancy ruled out · Appropriate consults as indicated (e.g., cardiology, hematology, oncology) appropriate dose, route & schedule · Patient/parent education · Heat therapy (hot baths) · Physical therapy/occupational therapy as appropriate (see APPENDIX 3: Physical & Occupational Therapy, P. 21) · Initial ophthalmology examination and periodic follow-up ophthalmic exams according to recommendations (see APPENDIX 4: Ophthalmology Screening, P. 24 ) · If malignancy has been ruled out, consider starting Prednisone 0.5-1 mg/kg/d for serositis or for severe painful arthritis and refusal to walk. Use for bridging medication only until patient can be seen by/or consult can be made with a pediatric rheumatologist. · Admit to hospital · Recommend immediate referral to pediatric rheumatologist for Refer or consult a pediatric rheumatologist Refer/treat as appropriate rash · +/- Arthritis · Systemic manifestations may include: · Lymphadenopathy · Hepatosplenomegaly · Pericardial/pleural effusions · Other serositis · Transient erythematous or salmon-pink macular return to normal or subnormal temperature in between · High spiking daily or twice daily fevers, with Systemic Juvenile Arthritis Clinical Presentation DIAGNOSTIC/TREATMENT ALGORITHM 3: SYSTEMIC JUVENILE ARTHRITIS 16 REMISSION = No evidence of active synovitis for 12 months after discontinuation of all medications GOAL = REMISSION and signs of arthritis for 6-12 months · After 6-12 months, without evidence of active synovitis, begin to wean medications · Continue medication therapy until free of symptoms If FLARE begin to wean medications · After 6-12 months, without evidence of active synovitis, and signs of arthritis for 6-12 months · Start tapering Prednisone · Continue medication therapy until free of symptoms YES Improvement in 2-4 weeks? YES YES YES NO Or FLARE · · · · · Consider changing to different disease modifying agent NO Improvement in 12 weeks? If Methotrexate dose maximized, consider TNF blocking biological agents NO Improvement in 4 weeks? Recommend referral to pediatric rheumatologist · Change Methotrexate to SQ route and/or increase Methotrexate stepwise up to 1 mg/kg/week with rapid dose escalation if severe symptoms or severe arthritis · Methotrexate requires laboratory monitoring prior to each increase in dosage NO Improvement in 4 weeks? Check NSAID dose to make sure it is in therapeutic range If no NSAID side effects, adjust dose to upper limits of therapeutic range Add Methotrexate and folic acid Recommend referral to pediatric rheumatologist for consultation and co-management APPENDIX 1: MEDICATIONS IN JUVENILE ARTHRITIS 17 4-6 mg/kg/24: hr BID 40 mg/kg/24: hr TID-QID 1-3 mg/kg/24: hr TID 25-50 mg TID 75 mg SR capsule QD BID 150 -200 mg BID 400 -800 mg TID-QID NSAIDs 15-20 mg/kg/24: hr375 -500 mg BID BID mg QD Dosage determined 12.5 -25 by pediatric rheumatologist Rofecoxib NSAIDs Dosage determined 200 mg QD or by pediatric BID rheumatologist SELECTIVE Celecoxib COX -2 q *Specific CHILDREN USUAL USUAL DAILY ADULT DOSE MG/KG/24 DOSE HOURS 10-15 mg/kg/24: hr325 -1,000mg q 4 -6 hr 4-6 hr Tolmetin 20-30 mg/kg/24: hr400 -600 mg TID TID Aspirin 80-100 mg/kg/24 hr 325 -1,000mg (acetylsalicylic : q -4 6 hr QID acid) Ibuprofen Sulindac Indomethacin NONSELECTIVE N aproxen Acetaminophen MEDICATION gm/24 mg/24 mg/24 hr hr hr mg /24 hr gm/24 50 mg QD 200 mg BID 4 1800 Children 40 mg/kg/day Adults 3200 mg/24 hr 400 200 be made SUPPLIED in COMMENTS consultation with a rheumatologist • If signs and symptoms completely res GENERAL INFORMATION: • Analgesic effects of NSAIDs begin almost mmediately, i but onset of the an inflammatory effect may -6 weeks. take 4 • In the absence of adverse effects, s positive response to a particular NS (decrease in pain or stiffness, incr function and improved range ) of motio should be apparen t within -3 weeks. 2 pediatric 12.5 mg/5cc suspension 25 mg/5 cc suspension 12.5 mg, 50 25, mg tablets within two weeks of NSAID therapy, a do not recur off NSAID, s unlikely it i that 125 mg/5 cc suspension the process is juvenile rthritis. a 250 mg, 375 mg & 500 mg tablets ADVERSE EFFECTS OF NSAIDs: 375 mg & 500 mg ER • Adverse reactions are - and agent patient tablets . If one agent causes an adver 25 mg/5cc suspension SR capsules have fewer GI sidespecific reaction, try another. 25 m g & 50 mg capsules effects • All NSAIDs decrease platelet 75 mg SR capsules adhesiveness. Aspirin’s effect lasts life of the platelet, while the effe 150 mg & 200 mg tablets Fewer renal side effects other NSAIDs on platelets is tempora (apx. 3 days). 100 mg/5cc suspension Excellent analgesic, but short • GI:nausea, vomiting, ia, dyspeps 50 mg & 100 mg half -life limits -inflammatory anti abdominal pain, diarrhea, constipati chewable tablets response ulcer, silent blood loss 200 mg, 300 mg, 400 mg, 600 mg & 800 mg tablets • Liver: elevation of transaminases 200 mg & 600 mg tablets • Renal: increased BUN and/or creatinine 400 mg capsule (responds to increased hydration), 81 mg chewable tablets Rarely used, except for Kawasaki interstitial nephritis, hematuria 325 & 500 mg tablets dis ease & rheumatic fever, • due CNS:to moodiness ,headache (especially 325 & 500 mg buffered greater frequency of adverse Indomet hacin), sleep problems tablets effects • Skin: m ost children show increased bruisability due to platelet effects Pseudoporphyria (photosensitive reaction 100 mg & 200 mg Do not use in patients who resulting have in shallow scarring on fac capsules demonstrated allerg ic -type other sun -exposed areas) reactions to sulfonamides • Hematologic (rare): decreased WBC or platelets 100 mg/ml oral drops Analgesic , only not an anti 160 mg/5 cc elixir inflammatory medication 80 mg & 160 mg chewable tablets 160 mg, 325 mg & 500 mg tablets HOW should 1000 mg/24 hr 4 hr choices ADULT MAXIMUM DOSE APPENDIX 2 LABORATORY AND IMAGING CONSIDERATIONS WHAT CAN BE LEARNED ABOUT JUVENILE ARTHRITIS FROM LABORATORY TESTS? HOW ARE SPECIFIC LABORATORY TESTS INTERPRETED? Juvenile arthritis cannot be diagnosed or confirmed by laboratory testing, but laboratory results may be useful to exclude critical diagnoses (e.g., infection or malignancy). Imaging studies may be useful to corroborate clinical findings, and to exclude bony defects, infection, and tumors. ANA 〈 Low titer ANA (<1:160) is positive in many normal children, and may be positive more frequently after Streptococcal or EBV infection, with autoimmune thyroiditis, and when first-degree relatives are ANA positive. 〈 In the absence of arthritis or other physical findings, a positive ANA has no clinical significance and does not require further laboratory work-up. 〈 ANA positivity does not predict an increased likelihood of developing autoimmune disease. 〈 A positive ANA is common in children with pauciarticular juvenile arthritis (< 4 joints), where it is associated with an increased risk of inflammatory eye disease in children with disease onset before the age of 7 years (especially in girls). 〈 ANA is almost never positive in children with systemic onset juvenile arthritis. 〈 High-titer positive ANA (> 1:640) in a child with arthritis may indicate that arthritis is a presenting sign of another rheumatic disease (juvenile dermatomyositis, SLE, vasculitis, or mixed connective tissue disease). RF (RHEUMATOID FACTOR) RF is not useful in diagnosing juvenile arthritis as almost all patients are negative. RF positivity in girls over 10 years of age with polyarticular arthritis (> 5 joints) indicates a prolonged, severe course consistent with juvenile onset of adult-type rheumatoid arthritis. 18 APPENDIX 2: Laboratory and Imaging Considerations C-REACTIVE PROTEIN (CRP) Usually normal in pauciarticular juvenile arthritis, but may be moderately elevated in active polyarticular disease (< 5.0). CRP is a good marker of disease activity in systemic onset juvenile arthritis and can be followed as an indicator of treatment success. ESR May be normal in pauciarticular juvenile arthritis and polyarticular arthritis, but is usually very high (>60 mm/hr) in systemic onset disease. If high in patients with pauciarticular juvenile arthritis, consider infection, underlying spondyloarthropathy (e.g., IBD, Reiter’s syndrome), or malignancy. WBC Should be normal in pauciarticular juvenile arthritis and normal or elevated in polyarticular juvenile arthritis. Elevated WBC with a left shift is sometimes seen in systemic onset juvenile arthritis, including leukemoid reaction (>30,000). Remember that a normal peripheral WBC and smear cannot exclude the diagnosis of leukemia (see Bone Marrow Aspirate on next page). PLATELET COUNT Usually normal, except in active systemic onset juvenile arthritis, where it may be elevated (>500,000). If platelet count is low, consider malignancy. STREPTOCOCCAL ANTIBODIES (ASOT, STREPTOZYME) High titer positive in up to 30% of normal healthy children. Not useful except in cases of suspected acute rheumatic fever or poststreptococcal reactive arthritis, where elevation to >600 TU is indicative of recent active disease. URIC ACID Not indicated in children with suspected arthritis.. Uric acid is elevated in malignancy. VIRAL TITERS IgM titers may be helpful in diagnosing the cause of viral associated arthritis, but does not affect the management. 19 APPENDIX 2: Laboratory and Imaging Considerations HOW CAN SYNOVIAL FLUID ANALYSIS HELP? Joint aspiration for synovial fluid analysis is not required except in children with suspected septic arthritis and inability to bear weight. 〈 〈 〈 〈 〈 〈 〈 〈 WHEN SHOULD A BONE MARROW ASPIRATE BE DONE? HOW CAN RADIOGRAPHIC IMAGING STUDIES HELP? Place synovial fluid in purple-top tube for cell counts. Save some sterile for culture. Gram stain is critical, as culture is negative in 30% of gram stain positive samples. WBCs: low to moderate counts (2-50,000/mm2) in pauciarticular or polyarticular juvenile arthritis. High counts (>100,000) may be seen in systemic onset juvenile arthritis. Infectious arthritis usually shows WBC counts of >50,000. RBCs: Consider pigmented villonodular synovitis if synovial fluid is grossly bloody (MRI may be indicated). Protein: Not helpful for diagnosis. Crystals: Extremely rare in children. Glucose: Pair with serum glucose. Low in infection (>40 mg/dl below serum glucose), extremely low in TB. Culture: Indicated in suspected infection. Proteases in fluid can inhibit growth, and culture may require dilution before plating to improve yield. A bone marrow aspirate may be required to exclude malignancy in a patient with systemic disease prior to initial use of steroids or in pauciarticular arthritis with anemia, low WBC or significant pain. PLAIN FILMS May be useful to exclude tumors, other malignancies, and infections. Bilateral comparison films are necessary to see juxta-articular osteopenia and/or accelerated maturation of epiphyses (early diagnostic signs of inflammatory arthritis). BONE SCAN May be useful to evaluate for suspected infection or malignancy. MRI Generally not necessary to make a diagnosis of juvenile arthritis, but may be useful in ruling out other diagnoses, or in difficult to reach joints (e.g., hips, internal joints of foot, etc.). 20 APPENDIX 3 PHYSICAL & OCCUPATIONAL THERAPY INITIAL DIAGNOSIS/ EARLY STAGES OF DISEASE WHEN SHOULD I REFER TO A PHYSICAL OR OCCUPATIONAL THERAPIST? DISEASE FLARE WHEN SHOULD I REFER TO A PHYSICAL OR OCCUPATIONAL THERAPIST? HOW DOES A PHYSICAL/ OCCUPATIONAL THERAPIST EVALUATE A CHILD? 〈 For age appropriate instruction in joint protection principles and energy conservation techniques to be applied to activities of daily living, i.e. feeding, bathing, dressing, school/work, household chores, shopping, leisure (i.e. swimming, biking, play, etc). 〈 For assessment of upper extremity function with emphasis placed on range of motion, strength, coordination, and the prevention of deformities (i.e. wrist contractures, etc.). 〈 For instruction of a home exercise program to include range of motion, strengthening and endurance exercises to maximize function and prevent deformity, as well as providing guidelines for the proper way to exercise with juvenile arthritis. 〈 For splint fabrication to rest joints, relieve pain, and prevent deformities (i.e. night resting splints, wrist cock-up splints, ulnar deviation splints, etc.). This is particularly important if there is joint swelling and/or synovial thickening. 〈 To evaluate the need for knee or ankle splinting, and arrange, through an orthotist or other facility. 〈 To coordinate treatment program with school/community based programs. 〈 Patient is having difficulty with dressing, bathing, home chores and/or school/work activities. 〈 Persistent swelling in one or more joints that may require splinting to prevent further deformity. Also, if splints no longer fit secondary to joint changes, swelling, weight gain or loss, physical growth, etc. 〈 Decreased active range of motion or increased weakness that is limiting their ability to perform activities of daily living. 〈 To review joint protection and energy conservation techniques and principles to ensure incorporation into activities of daily living. 〈 For further need of assistive devices necessitated by decreased range of motion and strength (i.e. reacher, button hook, long bath sponge, door knob extender, raised toilet seat, etc.). 〈 When changes/consultation is needed with schools to adjust treatment program. 〈 Evaluate active and passive range of motion of both the upper and lower extremities 〈 Gross manual muscle assessment (strength) of both the upper and lower extremities 〈 Hand function and fine motor assessment 〈 Gait assessment 〈 Activities of daily living assessment 〈 Psychosocial/leisure assessment 21 APPENDIX 3: Physical and Occupational Therapy WHAT IS THE TREATMENT PROTOCOL? There is no specific treatment regimen. Treatment is always individualized. Refer assessment to a pediatric therapist who is familiar with the management of juvenile arthritis. The following modalities may be used to treat juvenile arthritis: 1) HEAT AND COLD MODALITIES1 * HEAT - decreases pain, relaxes musculature and improves mobility 〈 Whirlpool or bathtub 〈 Pool (needs to be at least 85 degrees) 〈 Hot shower, hot packs/heating pad 〈 Paraffin bath COLD - decreases inflammation, however it is not always tolerated 〈 Cold packs, crushed ice, immersion in cold water *Precautions: should be used no longer than 15-20 minutes in one area. Do not use, or use with caution, over areas of poor circulation or impaired sensation, i.e. Raynaud’s. 2) SPLINTING/BRACING Joint motion may aggravate inflammation and increase pain. Splinting or immobilization supports the joint, reduces stress on the joint, allows muscles to relax, eliminates pain with motion (i.e. functional activities) and, as a result of these, decreases inflammation. Splinting also provides correct alignment. However, prolonged immobilization can exacerbate joint stiffness and must be avoided. Therefore, resting or static splints should usually only be used at night or for short intervals during the day, in order to maintain joint mobility and muscle strength. (EXCEPTION: prolonged use of splints is permissible for the first 2-3 days after acute exacerbation.) Splints should be re-evaluated for proper fit every 6 months or whenever the child experiences significant growth. Splinting is indicated for the acutely ill or the newly diagnosed patient, and then continued so as to minimize deformity and maximize function on a long term basis. 1 22 Modalities are treatments used in the therapy clinic or at home to decrease pain, stiffness and swelling. APPENDIX 3: Physical and Occupational Therapy 3) INSTRUCTION IN JOINT PROTECTION PRINCIPLES AND ENERGY CONSERVATION Principles of joint protection include: respect for pain, rest and work balance (i.e. school), improvement of muscle strength and joint range of motion, reduction of effort - work simplification/task analysis, avoidance of positions of deformity, use of stronger/larger joints, use of each joint in its most stable anatomical and functional plane, avoidance of staying in one position, avoidance of activities that cannot be stopped, use of assistive equipment and orthoses. 4) EXERCISE EXERCISE** Exercise therapy should include: 〈 Range of motion - passive, active assistive, active 〈 Strengthening of specific muscles (light to moderate Thera-Putty, light to moderate Thera-Band, dowel exercises with 0-2 lb. weight as tolerated, and increases as tolerated) 〈 Generalized conditioning/increasing endurance (walking, biking, swimming) 〈 Postural exercise 〈 Planning of home exercise program 〈 Child/family education 〈 Assess/modify leg length discrepancies *PRECAUTIONS: If patient is in active flare, endurance exercises should be modified and the number of repetitions of range of motion and strengthening exercises should be decreased for the involved (painful) joints. 5) ASSISTIVE DEVICES Assistive devices should be used to: 1) Reduce pain and preserve patient’s joint integrity by minimizing extraneous stress on joints 2) Increase patient’s independence 23 APPENDIX 4 when is OPHTHALMOLOGIC SCREENING* needed? Pupils not round or precipitate on cornea Immediate ophthalmologic referral for slit lamp exam YES is eit NO v ou N Yearly examination Systemic onset? YES NO Less than 7 years old at onset ANA present YES NO NO • Every 6 months for 4 years, • Then yearly • Every 6 months for 7 years, • Then yearly YES • Every 3-4 months for 4 years, • Then every 6 months for 3 years, • Then yearly * These are recommendations for ophthalmologic surveillance of children without uveitis. More frequent evaluation and follow-up will be required in children who have inflammatory eye disease associated with their juvenile arthritis. 24 APPENDIX 5 JUVENILE ARTHRITIS WORKSHEET FOR PRIMARY CARE GENERAL DATE DATE DATE DATE Blood Pressure/Temperature Growth (height/weight) School Activities/Function: ADLs Ambulation Extracurricular Illnesses Developmental Milestones Family Unit (psychosocial issues, compliance) Routine/Yearly Exam (non-JA health) Patient/Family Global Assessment Physician Global Assessment JUVENILE ARTHRITIS ACTIVE JOINTS Jaw Neck Shoulders Elbows Wrists Fingers Back Hips Knees Ankles Toes Morning Stiffness/Pain Duration MEDICATION ALLERGIES CURRENT MEDICATIONS 1) 2) 3) 4) SIDE EFFECTS 1) 2) 3) Lab Monitoring Exercise Program Splints Eye Exams 25 APPENDIX 6 KEY RESOURCES INSURANCE & FINANCIAL SUPPORT Michigan Department of Community Health Children’s Special Health Care Services Family Phone Line: (800) 359-3722 www.mdch.state.mi.us/msa/mdch_msa/cshcs.htm ORGANIZATIONS American College of Rheumatology 1800 Century Place, Suite 250, Atlanta, GA 30345 (404) 633-3777 www.rheumatology.org Arthritis Foundation, Michigan Chapter 17117 W. Nine Mile Rd., #950, Southfield, MI 48075-4508 (248) 424-9001 or (800) 968-3030 www.arthritis.org American Juvenile Arthritis Organization (AJAO) (a council of the Arthritis Foundation devoted to serving the needs of children, teens, and young adults with rheumatic diseases and their families) & the Arthritis Foundation, National Office P.O. Box 7669, Atlanta, GA 30357-0669 (800) 283-7800 www.arthritis.org PEDIATRIC RHEUMATOLOGY CARE CENTERS, MICHIGAN Children’s Hospital of Michigan Michigan State University Division of Immunology, KCMS Allergy, and Rheumatology Pediatric Rheumatology Clinic 3901 Beaubien Street 1000 Oakland Drive Detroit, MI 48201-2196 Kalamazoo, MI 49008 (313) 745-4450 (269) 337-6400 James Dowd, MD (private practice) 1221 Byron Road, Suite #5 Howell, MI 48843 (517) 546-0295 Michigan State University College of Human Medicine Child Healthcare Clinic Pediatric Rheumatology 138 Service Road East Lansing, MI 48824 (517) 353-3003 26 University of Michigan Health System CS Mott Children’s Hospital Division of Pediatric Rheumatology 1924 Taubman Center 1500 E. Medical Center Drive Ann Arbor, MI 48109-0318 (734) 764-2224 APPENDIX 6: Key Resources EDUCATIONAL MATERIALS (available from the Arthritis Foundation & AJAO) Kids Get Arthritis, Too: A Wellness Letter - Available to members of the Arthritis Foundation. This newsletter is packed with the latest information about issues affecting children with rheumatic diseases. Free with $20 membership to Arthritis Foundation Raising a Child with Arthritis: A Parent’s Guide - The essential guide to understanding and coping with the challenges of caring for a child with arthritis, Raising a Child with Arthritis gives reliable advice and information from the top pediatric health professionals in the nation. $14.95 Arthritis in Children - A booklet giving parents or other adults medical information about juvenile rheumatic diseases -- describing the conditions, medications, therapies, and coping techniques. No charge for single copies, 40 cents each for multiple copies Kids Get Arthritis, Too, Coloring Book - Encourages children to explore the differences and similarities among all of us. Minnie is a young girl with arthritis. $1.50 each Decision Making for Teenagers with Arthritis - This booklet helps teenagers with rheumatic diseases make higher education and career decisions. No charge for single copies, 40 cents each for multiple copies Young Adult Connection - A package of information addressing the needs of teens and young adults with rheumatic diseases. Free Educational Rights for Children with Arthritis: A Manual for Parents A guide that educates parents of children with rheumatic disease about obtaining services and accommodations for their children in school. $10.00 When Your Student Has Arthritis: A Guide for Teachers - This booklet for teachers or other adults who know children with arthritis describes different forms of juvenile arthritis, how arthritis might affect a child at school, and how to help. No charge for single copies, 40 cents each for multiple copies Juvenile Arthritis Awareness Week Lesson Plan Packets - Lesson plans are age appropriate and designed to increase disability awareness and decrease misconceptions students often have about people with disabilities. No charge for single copies, 65 cents each for multiple copies Shake, Rattle & Roar! - A 20-minute Arthritis Foundation exercise videotape that uses a zoo theme to lead children through exercises. $12 27 REFERENCES American Academy of Pediatrics, Section on Rheumatology and Section on Ophthalmology. (1993). Guidelines for ophthalmologic examinations in children with juvenile rheumatoid arthritis. Pediatrics, 92(2), 295-296. Anderson, C. T., Zeltzer, L. K., & Fanurik, D. (1993). Procedural pain. In N. L. Schecter, C. B. Berde, & M. Yaster (Eds.). Pain in infants, children and adolescents (pp. 435-458). Baltimore: Williams & Wilkins. Billings, A. G., Moss, R.H., Miller, J. J. 3rd, & Gottlieg, J. E. (1987). Psychosocial adaptation in juvenile rheumatic disease: a controlled evaluation. Health Psychology, 6, 343-359. Cassidy, J. T., & Petty, R. E. (2001). Textbook of Pediatric Rheumatology 4th ed. Philadelphia: W.B. Saunders. Cuesta, I.A., Kerr, K., Simpson, P., Jarvis, J.N. (2000). Subspecialty referrals for pauciarticular juvenile rheumatoid arthritis. Archives of Pediatrics & Adolescent Medicine, 154, 122-125. Frank, R.G., Hagglund, K. J., Schopp, L.H., Thayer, J.F., Vieth, A. Z., Cassidy, J.T., Goldstein, D.E., Beck, N.C., Clay, D.L., Hewett, J.E., Johnson, J.C., Chaney, J.M., & Kashani, J.H. (1998). Disease and family contributors to adaptation in juvenile rheumatoid arthritis and juvenile diabetes. Arthritis Care and Research, 11(3), 166-176. Giannini, E.H., & Cawkwell, G.D. (1995). Drug treatment in children with juvenile rheumatoid arthritis. Pediatric Clinics of North America, 42(5), 1099-1111. Giannini, E. H., Ruperto, N., Ravelli, A., Lovell, D.J., Felson, D.T., & Martini, A. (July 1997). Preliminary definition of improvement in juvenile arthritis. Arthritis & Rheumatism, 40(7):1202-9. Hochberg, M.C., Chang, R.W., Dwosh, I., Lindsey, S., Pincus, T., & Wolfe, F. (1992). The American College of Rheumatology 1991 revised criteria for the classification of global functional status in rheumatoid arthritis. Arthritis and Rheumatism, 35(5), p. 499. Huppertz, H.I., Tschammler, A., Horwitz, A.E., & Schwab, K.O. (1995). Intraarticular corticosteroids for chronic arthritis in children: efficacy and effects on cartilage and growth. Journal of Pediatrics, 127(2), 317-321. Ilowite, N. T. (2002). Current treatment of juvenile rheumatoid arthritis. Pediatrics, 109(1), 109115. Jacobs, J.C. (1993). Pediatric rheumatology for the practitioner, 2nd ed. New York: SpringerVerlag. 28 REFERENCES Kazak, A.E., Penati, B., Brophy, P. & Himelstein, B. (1998). Pharmacologic and psychologic interventions for procedural pain. Pediatrics, 102, 59-66. Klepper, S.E. (1999). Effects of an eight-week physical conditioning program on disease signs and symptoms in children with chronic arthritis. Arthritis Care and Research, 12(1), 52-60. Len, C., Hilario, M.O.E., Kawakami, E., Terreri, M.T., Backer, D.J., Goldenberg, J. & Neto, U. F. (999). Gastroduodenal lesions in children with juvenile rheumatoid arthritis. HepatoGastgroenterology, 46, 991-996. Liang, M.H. (1995). Commentary: the American College of Rheumatology practice guidelines strategy. Arthritis Care and Research, 132-133. Lovell, D.J., Giannini, E.H., Reiffm A., Cawkwell, G.D., Silverman, E.D., Nocton, J.J., Stein, L.D., Gedalia, A., Ilowite, N.T., Wallace, C.A., Whitmore, J., & Finck, B.K. (2000). Etanercept in children with polyarticular juvenile rheumatoid arthritis. Pediatric Rheumatology Collaborative Study Group. New England Journal of Medicine, 342(11), 763-769. McCaffery, M. & Wong, D.L. (1993). Nursing interventions for pain control in children. In N.L. Schecter, C.B. Berde, & M. Yaster (Eds.). Pain in infants, children and adolescents (pp. 295-316). Baltimore: Williams & Wilkins. McIIvain-Simpson, G. (1996). Juvenile rheumatoid arthritis. In P.L. Jackson & J.A. Vessey (Eds.) Primary care of the child with a chronic condition (pp. 530-552). St. Louis: Mosby Yearbook, Inc. Melvin, J.L. Rheumatic Disease in the Adult and Child, 3rd ed. Philadelphia: Davis Co. Miller, J.J., (1993). Psychosocial factors related to rheumatic diseases in childhood. Journal of Rheumatology, 38(Suppl), 1-11. Padeh, S., & Passwell, J.H. (1998). Intraarticular corticosteroid injection in the management of children with chronic arthritis. Arthritis and Rheumatism, 41(7), 1210-1214. Peterson, L.S., Mason, T., Nelson, A.M., O’Fallon, W.M., & Gabriel, S. E. (1997). Psychosocial outcomes and health status of adults who have had juvenile rheumatoid arthritis: a controlled, population-based study. Arthritis & Rheumatism, 40(12), 2235-2240. Robbins, L., Burckhardt, C. S., Hannan, M. T., & DeHoratius, R. J., Eds. (2001). Clinical Care in the Rheumatic Diseases, 2nd ed. Association of Rheumatology Health Professionals: Atlanta, GA. 29 REFERENCES Sandborg, C.I., Wallace, C.A. (1999). Position statement of the American College of Rheumatology regarding referral of children and adolescents to pediatric rheumatologists. Arthritis Care and Research, 12(1), 48-51. Sherry, D.D., Stein, L.D., Reed, A.M., Schanberg, L.E., & Kredich, D.W. (1999). Prevention of leg length discrepancy in young children with pauciarticular juvenile rheumatoid arthritis by treatment with intraarticular steroids. Arthritis & Rheumatism, 42(11), 2330-2334. Simon, L., Lipman, A., Jacox, A., Caudill-Slosberg, M., Gill, L., Keefe, F., Kerr, K., Minor, M., Sherry, D., Vallerand, A., Vasudevan, Spengler, C. (2002). Guideline for the management of arthritis pain in osteoarthritis, rheumatoid arthritis, and juvenile chronic arthritis. APS Clinical Practice Guideline Series, No 2. Glenview, IL: American Pain Society. Singsen, B.H., & Goldbach-Mansky, R., (1997). Methotrexate in the treatment of juvenile rheumatoid arthritis and other pediatric rheumatic and nonrheumatic disorders. Rheumatic Disease Clinics of North America, 23(4), 811-841. St. Rose, E., Ferrandiz, M., Kiss. M., Forre, O, Vehe, R., Higgins, G., Rennenbohm, R., Porras, A., Wong, P., DeTora, L.M., & Truitt, K.E. (2001). Steady-state plasma concentrations of rofecoxib in children (ages 2-5 years) with juvenile rheumatoid arthritis (JRA). Arthritis and Rheumatism, 44(9 Supp), S291. Taylor, J. & Erlandson, D.M. (2001). Pediatric rheumatic diseases. IN L. Robbins, C.S. Burckhardt, M.T. Hannan, & R. J. DeHoratius (Eds.) Clinical Care in the Rheumatic Diseases, 2nd ed. (pp. 81-88). Atlanta, GA: Association of Rheumatology Health Professionals. Timko, C., Stovel, K.W., Moos, R.H., & Miller, J.J. 3rd, (1992). Adaptation to juvenile rheumatic disease: a controlled evaluation of functional disability with a one-year follow-up. Health Psychology, 11, 67-76. 30 ARTHRITIS FOUNDATION MICHIGAN CHAPTER 800-968-3030 or 248-424-9001 www.arthritis.org ARTHRITIS FOUNDATION NATIONAL OFFICE & AMERICAN JUVENILE ARTHRITIS ORGANIZATION 800-283-7800 CRITICAL ELEMENTS OF CARE for JUVENILE ARTHRITIS ? DID YOU KNOW juvenile arthritis is one of the most common chronic diseases in children CONTACT THE ARTHRITIS FOUNDATION FOR ADDITIONAL JUVENILE ARTHRITIS RESOURCES, AND TO LEARN ABOUT AN ELECTRONIC VERSION OF THIS DOCUMENT. MDCH is an equal opportunity employer, services and programs provider. Number of copies: 8,000 Total printing cost: $11,217 Unit cost: $1.40 per book
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