juvenile arthritis

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