OREGON ARTHRITIS COALITIONJANUARY 2006

Optimizing the quality of lifefor Oregonians affected by arthritis.

THE OREGON ARTHRITIS ACTION PLAN

Carol, Lauraand Lynelle teachSun style Tai Chi,

which was designed to improvethe quality of life for people witharthritis. This style is particularlyeffective for people with arthritisbecause it includes agile stepsand exercises that may improvemobility, breathing and relaxation.

Mt. Hoodovershadows aParkdale area barn.

The local economy in HoodRiver County is Agriculture, foodprocessing, forest products andrecreation. Population is 20,5000(2003 census).

At 80, Mr. Gladstonehas osteoarthritis inhis knee and shoulder,

but his outlook on life is filledwith humor and a great attitude.Mr. Gladstone keeps his jointsgoing with his morning walksand gardening in the summer,growing his tomatoes and pruninghis flowers. His favorite neighbor,Leo the cat, keeps him on histoes with regular visits.

Laughing and havingfun in the water arenot only therapeutic

for the joints, but also for the soul.Portland’s Matt DishmanCommunity Center has an arrayof water classes for everyone.

Portland’s scenicskyline borders theWillamette River

and its many bridges. MultnomahCounty is urban and its economydiverse. Population 545,140(census 2003).

A farming field nearAshwood, JeffersonCounty. The local

economy in Jefferson County isagriculture, forest products andrecreation. Population is 19,900(2003 census).

Barbara hasfibromyalgia andknee osteoarthritis,

she exercises five times a week for15 minutes to loosen things upand rides the stationary bike threetimes a week for 30 minutes, tolimber up her knees and exerciseher arms to help with weight loss.

Six years ago,Marian broke outin an itchy rash all

over her body. Her joints becameaffected; she was unable to use herhands. The arthritis spread to herjaws, and she had difficulty eating.Eventually she was put on steroids,and her condition improved.

This spring, Marian was ableto compete with her school’s trackteam. Because of the stress on herjoints and the pain and fatigueshe experienced, she was unableto train like her teammates, liftingweights or running great distances.Instead, she set her own pace.

This year, Marian placed 7thin the high jump at the Oregonstate track meet—as a sophomore.According to Marian, “WhenI’m jumping, I really don’t thinkabout being sick.”

Long Ranch Beach,southern coast,Curry County. The

local economy in Coos County isforest products, agriculture, commer-cial and sport fishing, recreation andtourism. Population is 21,100(2003 census).

ON THE COVER

For more information about this publicationor the Oregon Arthritis Coalition, please contact:

Oregon Arthritis Coalition800 NE Oregon Street, Suite 730

Portland, OR 97232Telephone: 971-673-0984

Fax: 971-673-0994www.healthoregon.org/arthritis

All photographs in this document are printed with permission.

OREGON ARTHRITIS COALITION2006

THE OREGON ARTHRITIS ACTION PLAN

[ iii ]

Introduction ................................................................................................................... v

Oregon’s Arthritis Action Plan ....................................................................................... v

Arthritis Overview ....................................................................................................... vi

Goals, Objectives & Strategies in Brief ....................................................................... 1

Focus on Children ..................................................................................................... 4

A Personal Story .................................................................................................... 4

Goals, Objectives & Strategies in Depth ..................................................................... 5

Goal 1, Increase Awareness of Arthritis .......................................................................... 5

Goal 2, Prevent Arthritis Whenever Possible .................................................................. 6

Focus on Prevention: Modifiable Risk Factors ........................................................... 7

Maintain a Healthy Weight..................................................................................... 7

Regular Physical Activity ........................................................................................ 7

Protecting Your Joints ............................................................................................. 7

Heavy Physical Labor ......................................................................................... 7

Sports Injury...................................................................................................... 7

Focus on Who’s at Risk? ............................................................................................ 9

Rural Communities ............................................................................................... 9

Oregon’s Aging Population .................................................................................. 10

Racial and Ethnic Communities .......................................................................... 10

People with Disabilities ........................................................................................ 10

Children .............................................................................................................. 10

Goal 3, Increase the Number of Self-Management Educational Resources ................. 11

Arthritis Foundation Exercise and Aquatic Programs ................................................ 11

Self-Management Programs ..................................................................................... 11

Focus on Self-Management Programs ...................................................................... 12

Living Well With Chronic Conditions .................................................................. 12

Opposite: Toketee Falls in the Cascade Mountains

TABLE of CONTENTS

[ iv ]

Impact of Arthritis ................................................................................................... 13

Focus on Exercise .................................................................................................... 14

No Pain, No Pain Approach ................................................................................. 14

Goal 4, Expand the Availability of Educational & Community-Based Resources ......... 15

Expanding Exercise Programs .................................................................................. 15

Arthritis Foundation Support .................................................................................. 16

Helping Children Live “Normal” Lives .................................................................... 16

Widening the Reach with Education ....................................................................... 17

Focus on Management and Treatment ...................................................................... 18

Management and Treatment ................................................................................. 18

Ongoing Education ............................................................................................. 18

Self-Management ................................................................................................ 18

Occupational and Physical Therapy ...................................................................... 19

Medications ......................................................................................................... 19

Surgery ................................................................................................................ 19

Goal 5, Monitor the Impact of Arthritis ...................................................................... 20

Data ........................................................................................................................ 20

Focus on Progress .................................................................................................... 21

How Can You Get Involved?.................................................................................... 22

Appendices ................................................................................................................... 23

Contributors ............................................................................................................... 23

Local & National Resources ........................................................................................ 24

Arthritis Definitions .................................................................................................... 26

References ................................................................................................................... 27

Feedback Questionnaire .............................................................................................. 29

TABLE of CONTENTS continued

[ v ]

WHERE WE’VE BEEN…

Since 1999 Department of Human Ser-vices, Public Health has received fundingfrom the Centers for Disease Control andPrevention (CDC) to staff an Arthritis Pro-gram that could develop population-basedapproaches to assess and address arthritis inOregon. In partnership with the OregonChapter of the Arthritis Foundation and theArthritis Advisory Council, a statewide planwas developed and published in 2001.

The 2001 Oregon Arthritis Action Planwas built on the National Arthritis ActionPlan and contained goals, objectives and strat-egies to achieve the mission of “Optimizingthe quality of life for Oregonians affected by arthri-tis.”

With the release of the 2001 plan, theArthritis Advisory Council decided to sponsorthe development of an Arthritis Coalitionwith broader representation from organiza-tions and individuals interested in imple-menting strategies from the Oregon ActionPlan. Coalition members have been involvedin three major activities: 1) increasing the num-ber of community leaders trained to providethe Arthritis Foundation Exercise Program, 2)promoting physical activity through radio adsand print materials using CDC’s campaignmaterials “Physical Activity. The Arthritis PainReliever,” and 3) updating and rewriting thearthritis chapter of the Ensuring Quality Care(EQC) manual used in training providers forOregon seniors living in adult foster homes.

With the closing of the Oregon Chapterof the Arthritis Foundation in 2003, theArthritis Coalition lost a valuable partner.However, the national office of the ArthritisFoundation and a Pacific Northwest Chap-ter, including Oregon, Washington and Alaskaestablished in January 2006, have steppedforward and are demonstrating their commit-ment to improve the quality of life for peoplewith arthritis in Oregon.

WHERE WE ARE GOING…

Collectively as a Coalition there has beenan explosion of synergy that has broughttogether new partners with a variety of differentbackgrounds and experiences to move thisplan in a new direction. The current Coalitionhas come together to create a plan that opensup new possibilities of resources and jointpartnerships to provide successful educationaltools and programs in Oregon.

The 2006 Action Plan builds on the frame-work of the existing plan, but expands thevision with the addition of new partners and alarger scope of work. The Coalition made adecision to focus on goals relating to improv-ing the lives of people with arthritis and alsogoals addressing those who are at risk fordeveloping arthritis. Looking at the genera-tional spectrum of people’s lives is importantfor the prevention and proper treatment ofarthritis. The plan’s goal is to expand aware-ness, education and resources to everyone inOregon and touch as many people’s lives aspossible.

New elements in the 2006 plan include afocus on:• Children and families in addition to older

adults• Prevention messages and education• Partnering with physical activity and nutri-

tion programs• Expanding efforts to monitor the impact of

arthritis in OregonThe planning process created new goals,

objectives and strategies for the plan, andmade sure to include inspiring stories andcontent throughout to highlight alreadyexisting programs. The new plan reflects thecontinuing growth in awareness and com-mitment to addressing arthritis in Oregon,and provides direction as we work col-laboratively to “Optimize the quality of life forOregonians affected by arthritis.”

OREGON’S ARTHRITIS ACTION PLAN

INTRODUCTION

[ vi ]

rthritis is a condition that we associatewith our grandparents, or an elderlyneighbor but in fact, arthritis can

affect all ages. Nearly 65% of Oregonians withdiagnosed arthritis are under the age of 65.These statistics do not include children. Weknow that 27% of adult Oregonians havearthritis and that 22% have chronic jointsymptoms.1

Arthritis is an umbrella term that is used toencompass over 100 different types of rheu-matic disease (describes a disease that involvesthe joints or related tissues and causes chronicpain and limitation of joint movement).Osteoarthritis, which is linked to trauma tothe joints, is the most common kind of arthri-tis, affecting nearly 21 million Americans.

This action plan addresses 5 key goals.

The Action Plan is a road map to guide theactivities of the Coalition and local commu-nity organizations for the next 5 years. It isimportant to measure the progress towardthese goals in order to identify barriers andsuccesses along the way for future planning.

ARTHRITIS OVERVIEW

AGOAL NO. 1

Increase awareness of arthritis.

GOAL NO. 2Prevent arthritis whenever possible.

GOAL NO. 3Increase the number of self-manage-

ment educational resources.

GOAL NO. 4Expand the availability of educational

and community-based resources.

GOAL NO. 5Monitor the impact of arthritis.

[ 1 ]

GOALS, OBJECTIVES & STRATEGIES IN BRIEF

GOAL NO. 1INCREASE AWARENESSOF ARTHRITIS

OBJECTIVE NO. 1

Increase public awareness of the cost,health impact, and prevalence of arthritisamong children and adults.

Strategies:1. Develop a media campaign that addresses

the cost, health impact and prevalenceamong children and adults that can beadapted to various audiences.

2. Contact and recruit legislators, decision-makers, health systems, insurers, and privateindustry to recognize the need to fundprograms that increase the availability ofresources for people with arthritis.

OBJECTIVE NO. 2

Increase the awareness of arthritisservices available throughout Oregon.

Strategies:1. Develop a resource guide that can be made

available to the public.2. Collaborate with local healthcare and

social service agencies to provide informa-tion about community resources forpeople with arthritis.

GOAL NO. 2PREVENT ARTHRITISWHENEVER POSSIBLE

OBJECTIVE NO. 1

Support goals and objectives in the OregonPhysical Activity and Nutrition Plans.

Strategies:1. Collaborate with statewide physical activ-

ity and nutrition programs to expand theavailability of arthritis-related preventionmessages.

2. Identify key strategies in the Oregon Phy-sical Activity and Nutrition Plans andcollaborate with physical activity and nutri-tion programs to address mutual goals.

OBJECTIVE NO. 2

Increase the number of partnershipswith chronic disease programs and otherorganizations in order to leverage educational,public policy, outreach and fundingopportunities.

Strategies:1. Contact and recruit interested organiza-

tions to network and build a strong state-wide Arthritis Coalition.

2. Identify ways to connect and work withother chronic disease prevention programsat the state and federal level.

OBJECTIVE NO. 3

Identify at-risk groups and determineappropriate interventions.

Strategies:1. Recognize and prioritize specific popula-

tion groups that are at an increased risk forarthritis.

2. Create new programs, or tailor existingones, to meet the needs of the identifiedgroups (ensuring inclusion of exercise andbiomechanics) and collaborate with com-munity partners for implementation.

GOALS, OBJECTIVES & STRATEGIES IN BRIEF

[ 2 ]

GOAL NO. 4EXPAND THE AVAILABILITYOF EDUCATIONAL ANDCOMMUNITY-BASED RESOURCES

OBJECTIVE NO. 1

Increase the number of people with arthritiswho engage in overall daily physical activity.

Strategies:1. Develop new resources for physical activity

opportunities tailored for people with arthritis.2. Make linkages with community partners

to expand arthritis programs and dissemi-nate resource information.

3. Collaborate with partners to incorporatethe “Physical Activity. The Arthritis PainReliever” campaign on an ongoing basis.

OBJECTIVE NO. 2Support and partner with the Arthritis Foun-dation, Pacific Northwest Chapter in Oregon.

Strategies:1. Identify and establish mutual goals between

the Arthritis Coalition and the ArthritisFoundation, Pacific Northwest Chapter.

2. Work in partnership with the ArthritisFoundation, Pacific Northwest Chapterto accomplish measurable outcomes forprogram activities.

OBJECTIVE NO. 3Increase educational opportunities forhealth care providers and long-term careproviders throughout Oregon.

Strategies:1. Evaluate and revise existing arthr itis

educational tools to facilitate low-costtrainings for health care and long-term careproviders, health educators and individualswith arthritis; disseminate tools.

2. Evaluate and revise existing pain manage-ment modules for health care and long-termcare providers, health educators and indi-viduals with arthritis; disseminate tools.

GOAL NO. 3INCREASE THE NUMBER OF SELF-MANAGEMENT EDUCATIONALRESOURCES

OBJECTIVE NO. 1

Increase the number of peoplewho receive arthritis self-managementeducational resources.

Strategies:1. Identify where the Arthritis Foundation

Exercise Program and Living Well withChronic Conditions Programs alreadyexist on a statewide basis and address thegaps and areas for improvement.

2. Encourage health care providers to makereferrals to organizations that provide self-management resources.

3. Design and implement a media campaignto inform the public about the importanceof self-management and the availability ofclasses, including multi-lingual resources.

OBJECTIVE NO. 2

Reduce the percentage of people witharthritis who experience a limitationin activity due to arthritis.

Strategies:1. Increase the number of senior nutrition

sites that offer the Arthritis FoundationExercise Program to improve the perfor-mance of daily activities.

2. Increase the availability of linguistically andculturally appropriate self-managementprograms and support groups.

[ 3 ]

GOAL NO. 5MONITOR THE IMPACTOF ARTHRITIS

OBJECTIVE NO. 1

Monitor Oregon-specific arthritis datarelated to prevalence, activity limitations,use of health care services, costs of healthcare services, overall quality of life, andself-management.

Strategies:1. Continue to monitor Oregon-specific

arthritis data related to prevalence, activitylimitations, quality of life, self-management,and cost of health care services.

2. Continue evaluation of Oregon’s ArthritisFoundation Exercise Program.

OBJECTIVE NO. 2

Maintain and expand Oregon-specific data.

Strategies:1. Collaborate with coalition members and

other organizations on the collection,formatting and dissemination of usefularthritis information.

2. Identify other sources of arthritis relateddata.

OBJECTIVE NO. 3

Increase the dissemination ofdata and information collected.

Strategies:1. Combine data with compelling stories.2. Present data to health care purchasers and

providers demonstrating the potentiallong-term positive impact of providingappropriate interventions.

[ 4 ]

Kids get arthritis, too. According to the Arthritis Foundation,nearly 300,000 American children suffer from some form of Juvenile Rheumatoid

Arthritis (JRA). Unfortunately, we do not have statistics on the number of childrensuffering from this disease in the state of Oregon.

“I thought only old people got arthritis”...so did my family until I turned 5 yearsold and came face to face with a dis-ease that would rob me of a normalcarefree childhood. Now 23 yearslater, I realize that this stumblingblock on the road of my life has beenmy stepping-stone to speak out andhelp others realize that arthritis affectsyoung and old alike.

When I was diagnosed in 1982 thebest medication available was the wonderdrug…aspirin. It helped ease the pain andbecame my best friend three times a day. At15 my arthritis went into remission. Thiswas a great blessing but at that point afterhaving juvenile rheumatoid arthritis (JRA)active in my body for 10 years it had doneirreversible damage to many of my joints. Ilost mobility in my knees, shoulders, anklesand elbows and surgery was a definite part ofmy future. I finished out high school with oneknee surgery behind me and went off to college.At age 20 my arthritis came back—we knewthis was a possibility. In a matter of six years,thanks to medical research, new medicationswere available. These new medications havethe ability to relieve the debilitating symptomsenabling people with this disease to lead amore normal and active life.

In the beginning JRA defined my lifeand limitations but thanks to the support offamily, doctors and many medical professionals

whodonate their time

and money to arthritis research Inow define my life and what will limit me.Although I continue to deal with pain andfrustration from JRA, with surgeries inevi-table in my future, I know that with generouscontributions, whether it is time, talent,financial or otherwise, together we can battlea disease that affects all ages.

—Jeanette Hill

MY PERSONAL STORY

FOCUS ON CHILDREN

[ 4 ]

[ 5 ]

OBJECTIVE NO. 1

Increase public awareness of the cost,health impact, and prevalence of arthritisamong children and adults.

Strategies:1. Develop a media campaign that addresses

the cost, health impact and prevalenceamong children and adults that can beadapted to various audiences.

2. Contact and recruit legislators, decision-makers, health systems, insurers, and privateindustry to recognize the need to fundprograms that increase the availability ofresources for people with arthritis.

Results from the 2004 Oregon Behavioral Risk Factor Surveillance Survey demonstratethat arthritis is a major public health issue in this state: the prevalence of clinically diagnosed

arthritis among adult Oregonians is 27%. An additional 22% reported “possible arthritis” (chronicjoint symptoms in the absence of diagnosis by a healthcare provider). It is estimated that

1,322,315 adults in Oregon have arthritis or chronic joint symptoms.

OBJECTIVE NO. 2

Increase the awareness of arthritisservices available throughout Oregon.

Strategies:1. Develop a resource guide that can be made

available to the public.2. Collaborate with local healthcare and

social service agencies to provide informa-tion about community resources forpeople with arthritis.

INCREASE AWARENESS of ARTHRITISGoal

GOALS, OBJECTIVES & STRATEGIES IN DEPTH

1

Data on children not available in Oregon

27%

51%

22%

Non-ArthritisArthritisPossible Arthritis

Percentage of Adult Oregonianswith Arthritis, 2004

[ 6 ]

OBJECTIVE NO. 1

Support goals and objectives in theOregon Physical Activity and Nutrition Plans.

Strategies:1. Collaborate with statewide physical activ-

ity and nutrition programs to expand theavailability of arthritis-related preventionmessages.

2. Identify key strategies in the Oregon PhysicalActivity and Nutrition Plans and collaboratewith physical activity and nutrition programsto address mutual goals.

continued on page 8

PREVENT ARTHRITIS WHENEVER POSSIBLEGoal

P

The 2004 Oregon Behavioral Risk Factor Surveillance Survey (BRFSS)suggests that people with arthritis are more likely to be physically inactive. The prevalence

of no leisure time activity is 10% among those with arthritis, compared to 7% amongthose without arthritis. In addition, 32% of adults with arthritis are obese,

whereas among adults without arthritis, only 20% are obese.

hysical activity and good nutrition arekey factors in reducing the impact ofchronic diseases such as arthritis. Physical

activity in itself helps decrease joint pain andimprove mobility. In addition, lack of physicalactivity and excessive calorie intake lead to thedevelopment of overweight and obesity, whichcan cause osteoarthritis and exacerbate otherkinds of arthritis. The Statewide Public HealthNutrition Plan and the Statewide PhysicalActivity Plan have at their core a focus ondeveloping communities where healthychoices are the easy choices: where adults andchildren have easy access to quality, affordablefruits and vegetables; where Oregonians cansafely walk and bicycle for work, errands andrecreation. Both plans aim to eliminate healthdisparities among racial and ethnic communi-ties, medically under-served, low-income,senior, disabled, and rural populations.

2

No Arthritis Arthritis

7%10%

20%

32%

0%

5%

10%

15%

20%

25%

30%

35%

No leisure time activity Obese

Obesity Status and Lack of Leisure Time ActivityAmong Adult Oregonians with and without Arthritis, 2004

7%10%

20%

32%

[ 7 ]

MAINTAIN A HEALTHY WEIGHT

For an overweight person, weight loss is akey modifiable risk factor to reduce strain onthe knee and other weight-bearing joints,resulting in reduced symptoms and longer lifespan of the person’s own joint or an artificialjoint when that is required.

shipyard work, farming, heavy industry, andoccupations with repetitive motion, etc.) areassociated with an increased risk of arthritis.2Similar to athletes, manual laborers must beallowed to acclimate their bodies to the physicalstrain of their job. Employers providing equipment,such as back-braces and kneepads, lessens thechance of injury. Addressing ergonomics at thework place can reduce strain on workers’ jointsand muscles. When workers are injured, receivingadequate medical care and rehabilitation is impor-tant, so that they can return to their place of work.Sports Injury

People participating in sports need to beaware of the long-term consequences of traumato joints and overall well being. Coaches andathletes can follow training programs aimed atprogressive conditioning and setting realisticgoals to prevent over-use injuries. Use of protec-tive gear and adequate officiating at competi-tions may result in reduced trauma. Adequatefirst aid and sport medicine/orthopedic inter-ventions are best practices to follow in the case oftrauma. Following an injury, adjustments totraining programs and competition are vitalduring the rehabilitation phase.

Long after the impact and the immediatetreatment of a sports injury, however, prob-lems may appear. Adolescents and youngadults with traumatic injury are at substan-tially increased risk for osteoarthritis at thesame joint later in life.3

Education about the multiple benefits ofexercise and reducing strain on one’s joints needs

to be strongly encouraged at all stages of life,starting at a young age throughout formal

education and at the work-place.

FOCUS ON PREVENTIONModifiable Risk Factors for the Development and/or Progression of Arthritis

About 48% of those with clinically diagnosedarthritis report limiting their usual activities becauseof the condition, while 40% report that their workproductivity is decreased by arthritis. Based on the2004 Oregon BRFSS, 27% of adult Oregonians

(about 695,000 people) suffer from arthritis.

Buildinghealthy bonesbegins at birthand lasts your

whole life.

Maintain optimal weight to reduce strain onnormal or diseased/damaged joints. The strain

placed on the knee joint is 3 times the weight beingcarried by the knee. If a person carries 20 pounds ofweight in the form of excess body weight or a heavy

object, the equivalent of 60 pounds is felt bythe internal structures of the knee.

A well-balanced diet that includes thedaily-recommended servings of fruits, veg-etables, and grains plus physical activityare important elements in achieving andmaintaining a healthy weight.

Starting nutrition educationat a young age and addressingpoor eating habits as well asthe content of vending machinesin schools, colleges and the workplace may be key targets in the attempt tomodify the eating habits of Oregonians.

REGULAR PHYSICAL ACTIVITY

Regular aerobic and weight-bearing exer-cise is important to maintain strong muscles,which interestingly are more important shockabsorbers than joint cartilage. Weight-bearingexercise is also important for bone health andreduces the risk of osteoporosis. The type andintensity of exercise should be adapted forpeople with arthritis and known joint damage.

The importance of regular physical activityand healthy eating needs to be supported on alocal and statewide level.

PROTECTING YOUR JOINTS

Heavy Physical LaborPeople involved in heavy physical labor should

receive educational information about the im-portance of joint health. Certain occupations (i.e.,

[ 8 ]

OBJECTIVE NO. 2

Increase the number of partnershipswith other chronic disease programs andother organizations in order to leverageeducational, public policy, outreachand funding opportunities.

Strategies:1. Contact and recruit interested organiza-

tions to network and build a strong statewideArthritis Coalition.

2. Identify ways to connect and work withother chronic disease prevention programsat the state and federal level.

Older Oregonians are more commonly affected by arthritis. The prevalence ofarthritis increases with age. This is not to say that the elderly are the only ones affected by arthritis.

Nearly 65% of Oregonians with clinically diagnosed arthritis are under 65 years old.

OBJECTIVE NO. 3

Identify at-risk groups anddetermine appropriate interventions.

Strategies:1. Recognize and prioritize specific popula-

tion groups that are at increased risk forarthritis.

2. Create new programs, or tailor existingones, to meet the needs of the identifiedgroups (ensuring inclusion of exercise andbiomechanics) and collaborate with com-munity partners for implementation.

PREVENT ARTHRITIS WHENEVER POSSIBLE continued from p. 6Goal2

7%10%

21%

28%

40%

57%

0.0%

10.0%

20.0%

30.0%

40.0%

50.0%

60.0%

18–24 25 34– 35 44– 45 54– 55 64– 65+Age

7%10%

21%

28%

40%

57%

Percentage of Adult Oregonians in Various AgeGroups Who Report Having Clinically Diagnosed Arthritis, 2004

[ 9 ]

Rural CommunitiesMuch of Oregon is rural. People with

arthr itis in rural communities are at agreater risk for not getting their health careneeds met. In rural areas, it is common toserve a higher proportion of patients whoare either on Medicare, Medicaid, or do nothave any insurance.4 It is common forpeople to dr ive themselves, family orfriends to primary and specialty clinics thatare long distances from where they live.Other means of transportation are not anoption for most of these communities.There are also fewer educational resourcesavailable that people are able to access.

FOCUS ON WHO’S AT RISK

Andy has arthritis, but keeps his joints moving by sawing upfirewood to burn in his stove during the winter months.

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Medford

BendSpringfield

Eugene

Albany

CorvallisSalem

KeizerLake Oswego

Tigard

Beaverton

iH llsboro Portland

Gresham

0 50 100 150 MilesO O R HREGON FFICE OF URAL EALTH

RuralFrontier

Urban

2000 CensusUrbanized Area

30,000 People

OREGON

●

Urban is at least 500people per square mile.

Rural is a geographicarea 10 or more milesfrom a population centerof 30,000 or more.

Frontier rural areasare counties that havea population density ofsix or less people persquare mile.

[ 10 ]

Oregon’s Aging PopulationThe number of Oregonians over the age of 65

is expected to double in the next two decades.Arthritis will have a growing impact on the health,mobility, and quality of life of its older population.

While Oregon is ahead of many states in provid-ing a range of community-based services to help frailolder adults, many challenges still face older indi-viduals with arthritis. These challenges include accessto healthcare, especially in rural communities; trans-portation to healthcare, exercise programs, andsupport services; dealing with additional health con-ditions; and isolation for those living alone. Olderadults are less active than the general population(Oregon BRFSS 2004 data). Information, pro-grams, and support for exercise programs designed forfrail older adults with arthritis are not available oraccessible in much of the state. As mobility decreases,older adults face the need for increased supportthrough home modifications, in-home care, or mov-ing into community-based care settings. Identifyingways to reach and support the increasing number ofolder adults with arthritis will be a challenge tohealth and long-term care systems, policymakers,local health and aging agencies, and caregivers.

—Jennifer Mead, MPH, Health PromotionCoordinator, DHS Seniors & People withDisabilities

Racial and Ethnic CommunitiesA large body of literature has documented sig-

nificant racial and ethnic disparities in health careand health outcomes, with minority Americansgenerally receiving less health care and sufferingworse health.5 The disabling affects of arthritis(e.g. arthritis-attributable activity limitations,work limitations, and severe joint pain) affectracial/ethnic minorities disproportionately.6

Financial, structural, and personal barrierscan limit access to health care for racial andethnic minorities.• Financial barriers include not having health

insurance, not having health insurance tocover needed services, or not having thefinancial capacity to cover services outside ahealth plan or insurance program.

• Structural barriers include the lack of pri-mary care providers, medical specialists, orother health care professionals to meet spe-cial needs or the lack of health care facilities.

• Personal barriers include cultural or spiritualdifferences, language barriers, not knowingwhat to do or when to seek care, or concernsabout confidentiality or discrimination.7

People with DisabilitiesArthritis is the most common reported

cause of disability, and the third leading causeof work limitation in the United States.8

People with disabilities, either caused orexacerbated by arthritis, face the added barriersof access to appropriate treatment and exerciseprograms, transportation and employment, andmay find it more difficult to live independently.

ChildrenLimited services for children with arthritis

make it necessary for many families to drive longdistances to access limited resources. There are fewpediatric rheumatologists in Oregon, and manychildren who could benefit from evaluation bythese specialists may not have the opportunity.

Schools need to be aware of the physicallimitations and difficulties that students withinflammatory arthritis may experience, andthrough simple accommodations can signifi-cantly improve a child’s school experience.

FOCUS ON WHO’S AT RISK continued from p. 9

At 93, Margaret keeps active so she can prune her trees once a year.

[ 11 ]

Self-Management ProgramsSelf-management resources are programs

that have been evaluated and proven to im-prove the health status of people with arthritis.Some existing classes that are currently avail-able in Oregon include: Arthritis FoundationExercise Program, Arthritis FoundationAquatic Program, and Living Well withChronic Conditions. The goal is to have moreprograms in Oregon by finding out where theneed is, creating awareness in those commu-nities and linking programs together for easieraccessibility.

As an instructor for both the land and waterprograms, I see and hear the ways in which anappropriate exercise program has improved lives ofclass participants. For some, it’s standing taller andwalking more easily, sometimes with a “bounce” intheir step or the smile that lets you know they feelbetter. One participant bragged she could now walk

the entire length ofher long drivewayto pick up her ownmail and newspa-per. Commentssuch as “my jointsare working betterand I’m ready toface my day,” or “Icame because mydoctor told me to.I’m coming backbecause I had fun”l e t s ins t ruc to r s

know the value of the Arthritis FoundationExercise Program.

I enjoy the challenges of teaching and feel priv-ileged to “work out” with people some of whom,because of their physical limitations, expend, eachday, as much energy on daily activities as does amarathon runner during a race.

—Carol ClarkMaster Trainer and Instructor of the ArthritisFoundation Aquatic & Exercise Program

continued on p. 13

INCREASE THE NUMBER ofSELF-MANAGEMENT EDUCATIONAL RESOURCES

Goal

OBJECTIVE NO. 1

Increase the number of peoplewho receive arthritis self-managementeducational resources.

Strategies:1. Identify where the Arthritis Foundation

Exercise Program and Living Well withChronic Conditions program already existon a statewide basis and address the gapsand areas for improvement.

2. Encourage health care providers to makereferrals to organizations that provide self-management resources.

3. Design and implement a media campaignto inform the public about the importanceof self-management and the availability ofclasses, including multi-lingual resources.

Arthritis FoundationExercise and Aquatic Programs

Our bodieswere designed tomove, so dailyphysical activityis important forall of us.

The ArthritisFoundation Ex-ercise Programand Aqua t i c sProgram are forpeople with ar-thr i t i s . These“e a s y on thejoints” workouts help in maintaining or im-proving range of motion, flexibility, strengthand endurance. Instructors must be certifiedby the Arthritis Foundation to teach theseclasses.

3

[ 12 ]

Living Well with Chronic ConditionsLiving Well with Chronic Conditions

(CDSMP—Chronic Disease Self-Manage-ment Program) was developed at the StanfordUniversity Patient Education Research Centeras a collaborative research project betweenStanford and the Northern California KaiserPermanente Medical Care Program.

In a five-year research project, the programwas evaluated in a randomized study involvingmore than 1000 subjects. This study found thatpeople who took the program, when comparedto people who did not take the program, im-proved their healthful behaviors (exercise, coping,communications with physicians, and cognitive

symptom management), improved their healthstatus (self-reported health, fatigue, disability,social role/activities limitations, and health dis-tress), and decreased their days in the hospital.

Oregon Department of Human Services issupporting statewide dissemination of theprogram through trainings at the master andleader level.

It is the process through which the LivingWell with Chronic Conditions is taught thatmakes it effective. Sessions are highly partici-patory. Mutual support and success build theparticipants’ confidence in their ability tomanage their health and maintain active andfulfilling lives.

LIVING WELL WITH CHRONIC CONDITIONS

OVERVIEW OF TOPICS WEEKS

1 2 3 4 5 6

Overview of self-management & chronic health conditions ●

Making an action plan ● ● ● ● ● ●

Relaxation & symptom management ● ● ● ● ●

Feedback & problem-solving ● ● ● ● ●

Managing anger, fear, & frustration ●

Fitness & exercise ● ●

Better breathing ●

Fatigue ●

Nutrition ●

Advance directives ●

Communication ●

Medications ●

Making treatment decisions ●

Depression ●

Informing your healthcare team ●

Working with your healthcare professional ●

Future plans ●

“The Chronic Disease Self-Management Workshop Leaders Manual,”Stanford Educational Research Center, www.patienteducation.stanford.edu

FOCUS ON SELF-MANAGEMENT PROGRAMS

[ 13 ]

OBJECTIVE NO. 2

Reduce the percentage of people witharthritis who experience a limitation inactivity due to arthritis.

Strategies:1. Increase the number of senior nutrition

sites that offer the Arthritis FoundationExercise program to improve the perfor-mance of daily activities.

2. Increase the availability of linguistically andculturally appropriate self-managementprograms and support groups.

Impact of ArthritisArthritis can have an enormous impact on

a person by restricting their daily activities,affecting their ability to work and decreasingthe quality of life for millions of Americans.9

More than 8 million Americans report thatarthritis circumscribes things that people doeveryday, such as walking and dressing.10

The physical limitations are only part of thelarger picture. Along with physical changes, aperson is challenged by fatigue, depression andpain. Just the emotional ups and downs thatare associated with the loss of physical func-tion can affect the level of pain and fatigue aperson lives with on a daily basis. Arthritis paincan be one of the most difficult and exhaust-ing symptoms to manage on a daily basis. Painmanagement is fundamental for a person toimprove their quality of life.

30% of adult Oregonianswith arthritis also have depression

(depression call-back survey, 2004-2005).

Those living with arthritis report decreased quality of life.Oregonians with arthritis are also more likely to report poorer health status

(28%) compared to those without arthritis (11%).

INCREASE THE NUMBER ofSELF-MANAGEMENT EDUCATIONAL RESOURCES continued from p. 11

Goal3

0%

20%

40%

60%

80%

100%

%of

Adu

ltO

rego

nian

s

No Arthritis Arthritis

Excellent to Good Fair/Poor

89%

72%

28%11%

Health Status Among Oregonianswith and without Arthritis, 2004

89%

72%

28%11%

[ 14 ]

NO PAIN, NO PAINAPPROACH TO MOVE BEYOND PAIN!

During my recovery from fibromyalgia,I kept hearing that when you begin exercising,it gets worse before it gets better and the “nopain no gain” mindset made things even worse.So when it came to movement, I insteadadopted the “No Pain, No Pain” mantra. Itmeans that if there is no pain and discomfortwhile doing the movements then there is nomore pain later on.

As a clinical exercise physiologist, researcher,therapist and a person with chronic pain, Iwould like to encourage people to be as active asthey can be by using and not abusing their body.Remember, exercise is as important for a personwith chronic pain as insulin is for a person withdiabetes. It is their lifeline.

—Namita GandhiClinical Exercise PhysiologistIntegrative Movement Clinic

FOCUS ON EXERCISE

Exercise is not the only reason to be in the pool at MattDishman Community Center. Laughing, socializing andjust having fun is why people take a water aerobics class.

Betty gets to work on strengthening her upper arms whiletrying to keep the beach ball on the parachute. Senior centersaround Oregon have Arthritis Foundation Exercise Programsso that seniors can stay active and keep independent.

[ 15 ]

OBJECTIVE NO. 1

Increase the number of people with arthritiswho engage in overall daily physical activity.

Strategies:1. Develop new resources for physical activity

opportunities that are tailored for peoplewith arthritis.

2. Make linkages with community partnersto expand arthritis exercise programs anddisseminate resource information.

3. Collaborate with partners to incorporatethe “Physical Activity. The Arthritis PainReliever” campaign on an ongoing basis.

Expanding Exercise ProgramsI have been teaching a class for the past 7 years.

This class is comprised of women between the agesof 68-90 yrs of age. The class mainly consists of theArthritis Foundation flexibility and strengtheningexercises. I also add a balance component. It doesnot contain an aerobic component so I encourageparticipants to add a daily walk.

The seniors I teach are a joy to work with. Theyare loyal to the class and to each other. FeedbackI receive from them is that the social interactionand motivation from the group is what keeps themexercising on a regular basis. They tell me theywould not exercise if they were at home alone.

They also tell me that they feel safe and don’tworry about injury when they exercise in class.This comfort level encourages them to extendthemselves a little more and try new exercises fromtime to time.

The benefits of exercise for all of them are toenjoy each other, feel better, stronger, and more flex-ible. Each of them expresses that exercise increasestheir confidence level so that they are able to livetheir lives as fully as possible. As an occupationaltherapist, I feel that increasing independence andquality of living are the main goals for exercise, so Iam pleased that the participants express that this iswhat is happening for them.

—Lauren Rykert, OTR/LOASIS HealthStages Coordinator

Goal EXPAND THE AVAILABILITY ofEDUCATIONAL & COMMUNITY-BASED RESOURCES4

Lauren keeps her class smilingas they move through their exercises.

[ 16 ]

OBJECTIVE NO. 2

Support and partner with theArthritis Foundation, Pacific NorthwestChapter in Oregon.

Strategies:1. Identify and establish mutual goals between

the Arthritis Coalition and the ArthritisFoundation, Pacific Northwest Chapter.

2. Work in partnership with the ArthritisFoundation, Pacific Northwest Chapter toaccomplish measurable outcomes for pro-gram activities.

Arthritis Foundation SupportWorking with the Arthritis Foundation volun-

teers in Oregon over the past several months to pro-vide leader trainings for the Arthritis FoundationExercise and Aquatics Programs has been a wonder-ful experience. Whether it’s exercise program trainersdemonstrating how to effectively lead classes, futureclass instructors, or host facility staff, the combinationof enthusiasm, knowledge, and dedication in thesevolunteers is phenomenal and bodes well for thefuture of arthritis interventions in Oregon as well asthe future of the Arthritis Foundation.

—Johanna Lindsay, Director of Programsand Services, Arthritis Foundation,Pacific Northwest Chapter

We are most grateful for the strong support andpartnership we have with the Oregon Arthritis Pro-gram. We commend the state of Oregon for providingsuch a very effective outreach program for Orego-nians with arthritis!

—Marilee McCorriston, President/CEO,Arthritis Foundation, Pacific Northwest Chapter

The Arthritis Foundation is committed to havinga strong presence to serve Oregonians who have arthri-tis. Throughout the nation, we are focusing on juvenilearthritis, rheumatoid arthritis, and osteoarthritis in theareas of research, public health and public policy. Wewill continue to expand our exercise and self-manage-ment programs to improve the quality of life for peoplewith arthritis and their families in Oregon. Our advo-cacy efforts will focus on seeking expanded governmentsupport of research and encourage Congress to expandits funding of the Center for Disease Control arthritis

programs so that the Oregon State Health Depart-ment and other such departments nationally willimplement activities to address the needs of peoplewith arthritis. This will be enhanced by the forma-tion of the Arthritis Foundation, Pacific NorthwestChapter to serve Oregon, Washington and Alaska.The Arthritis Foundation commends the OregonArthritis Coalition in its efforts to reduce the pain anddisability associated with arthritis and pledges it sup-port of these efforts in Oregon. With the help and gen-erosity of the people of Oregon, we will lead the effortto raise the necessary funds to make our programsaccessible throughout Oregon and to fund researchseeking better treatments and the cure for arthritis.

—Judy McAbee, Chief OrganizationalDevelopment Officer, Arthritis Foundation,National Office

Arthritis Foundation HelpsChildren Live “Normal” Lives

A major concern of many parents with childrenwho have JRA–Juvenile Rheumatoid Arthritis–ishow to help their children live a “normal” life. Oneof the goals of pediatric rheumatologists is to keepchildren active so that children can be children.However, as one parent of a preschooler with pol-yarticular JRA asks, “What do you say to a 4-yearold who comes homefrom school, cryingbecause she can’t run asfast as the other kids?”

A parent of a 16-year old girl who suffersfrom systemic JRA ex-plains, “Our goal is tokeep her in school. Shedances when she can,and she skis when shecan. She fatigues easily.Homework can be achallenge after a longday at school. She haslearned to live with thepain that has been dailyfor six years.”

—Dawn Kimball,Juvenile ArthritisTask Force

Goal EXPAND THE AVAILABILITY ofEDUCATIONAL & COMMUNITY-BASED RESOURCES continued4

ELLIE’S STORY

Two weeks before her sec-ond birthday, Ellie was diag-nosed with polyar ticularJuvenile Rheumatoid arthritis(JRA). To prevent long-termjoint damage, Ellie startedreceiving weekly injections of astrong chemotherapy drug thatwould suppress her immunesystem from attacking herjoints. Physical therapy helpedEllie gain endurance and learnto climb the stairs again. SinceEllie tested positive for a certainmarker in the blood thatincreases her risk for uveitis, achronic eye inflammationrelated to JRA, Ellie startedseeing a pediatric ophthal-mologist every three months.

[ 17 ]

OBJECTIVE NO. 3

Increase educational opportunities forhealth care providers and long-term careproviders throughout Oregon.

Strategies:1. Evaluate and revise existing arthritis educa-

tional tools to facilitate low-cost trainingsfor health care and long-term care provid-ers, health educators and individuals witharthritis; disseminate tools.

2. Evaluate and revise existing pain manage-ment modules for health care and long-term care providers, health educators andindividuals with arthritis; disseminate tools.

Widening the Reach with EducationMedical students, internal medicine residents

and subspecialty residents such as those in derma-tology, family practice, obstetrics and gynecologyreceive regular lectures in disease recognition andmanagement from faculty members such as theArthritis & Rheumatic Diseases Division atOregon Health Sciences University. Physicianassistants receive similar instruction and oftenpractice in rural areas of Oregon with minimal

access to specialized care. The Oregon Societyof Physician Assistants frequently invites rheu-matologists to provide updates on diseasediagnosis and management at their continuingeducation meetings. This also builds a bridgebetween specialists and primary care providerspracticing in remote locations. Teaching facultylecture at hospital grand rounds and medical staffmeetings across the state providing updates tohealth care providers around the metropolitan areaof Portland. Other organizations that have aninterest in continuing education about arthritis arenurse practitioners, naturopaths, massage therapistsand chiropractors.

Regular meetings are held with major healthinsurance companies to ensure access to care andcoverage for costly medications. Members of theOregon Rheumatology Alliance are frequentlycalled upon to lecture to local physicians, hospitalsand health care purchasers in smaller communitiessuch as Salem, Eugene, Medford, Bend and HoodRiver as well as in Portland.

—Andre Barkhuizen, MD, FCP,Associate Professor of Medicine,Arthritis and Rheumatic Diseases,Oregon Health and Science University,Oregon Rheumatology Alliance Member

O regon Medical Professional ReviewOrganization (OMPRO) has been workingwith Oregon nursing homes for the past threeyears as part of the national Nursing Home Qual-ity Initiative. One of the key areas of focus hasbeen improving pain management for residents,which is often under-detected and under-treated.An estimated 45% to 83% of nursing home resi-dents are reported to be in pain at any one time.

Arthritis is a common condition that is thecause of pain among nursing home residents. Westrongly support the objective of increasing educa-tional opportunities for long term care providers topromote better recognition and appropriate man-agement of pain in Oregon’s elders.

—Jennifer Martin, MPH, Nursing HomeQuality Initiative—Team Lead, OMPRO

After a year of no severe inflammation, Ellie’s pediatricrheumatologist suggested that she might be in remis-sion. For now, Ellie taps and swims and climbs rockwalls—when just years ago, she couldn’t climb thestairs in her house.

[ 18 ]

Management and TreatmentArthritis can occur at any age and in all

races. Early and correct diagnosis is the firstand probably most important step in reducinglong-term disability by making it possible tostart appropriate therapy before irreversibledamage has occurred.

Ongoing EducationAlthough there is no single remedy to cure

arthritis, there are different options to help man-age many different types of arthritis. Research

shows that early diagnosis and appropriatemanagement can help lessen the consequencesassociated with many types of arthritis.11

Early diagnosis requires adequate publiceducation so that people with arthritis symp-toms can seek help from health care providers.Organizations such as the Arthritis Founda-tion and various disease specific foundationsand patient support groups are key partners inreaching the public to provide useful infor-mation about treatment and prevention ofarthritis. The lay press and television media canreach individuals in remote areas of the state.

Health care providers need ongoing trainingto diagnose, treat and appropriately referpatients with arthritis. Correct diagnosis is im-portant and adequate training is required tomanage these disorders appropriately and safely.

Self-ManagementPeople with chronic diseases live with the

condition on a daily basis; they are the “leaderof their own team.”

Self-management programs teach peopleto take control of their arthritis by acquiringthe skills, knowledge and attitudes toempower themselves to make better decisionsthat involve pain relief, problem solving,behavior changes with exercise and reducingstress in their lives.

FOCUS ON MANAGEMENT & TREATMENT

“Physical Activity. The Arthritis Pain Reliever” isa campaign designed to promote physical activity as amethod of arthritis self-management. Physical activitycan have an important and beneficial effect on arthritispain and associated disability.

The campaign promotion materials are designed to:

• Raise awareness of physical activity as a way tomanage arthritis pain and increase function.

• Increase understanding of how to use physicalactivity (types and duration) to ease arthritis symp-toms and prevent further disability.

• Enhance the confidence or belief of persons witharthritis that they can be physically active.

• Increase trial of physical activity behaviors.

Dr. Barkhuizen enjoys teaching residents about arthritis.

[ 19 ]

Health care providers, long term care,health educators and social services need tobe educated about local communityresources that provide education and sup-port for people with arthritis. These agen-cies can make referrals to programs locallyand educate patients on the importance ofself-management, exercise programs andeducational resources that are found intheir community.

Occupational and Physical TherapyWhen people are diagnosed with arthritis, they

are often referred to an occupational or a physicaltherapist. These professionals are experts in evalu-ating a person’s movement and recommendingchanges to maximize function.

The therapist will assess the patient’s strength,range of motion, coordination and endurance beforedeveloping a plan of care to address any deficits andto assist with the management of symptoms. Inmost cases, the therapist will provide the patientwith strategies for protecting the inflamed joints.These strategies could include fabricating a splint,recommending a brace or an assistive device (like awalker or cane), or prescribing an exercise programthat will develop the surrounding muscles to sup-port the joint. Therapists are experts in providing“hands on” care to improve joint and soft tissuemobility. The most important goal of occupationalor physical therapy, though, is to provide patientswith the tools to begin to manage their diseaseindependently and to serve as a bridge to othercommunity resources.

—Robert Love, OTR/L, American Occupa-tional Therapy Association & Chris Murphy,PT, Outpatient Rehabilitation, Providence

MedicationsMedications commonly used to treat rheu-

matic diseases provide relief from pain andinflammation. Other medications can helpreduce structural damage done to the joint.

The very effective yet costly injectablebiological medications promise to greatlyimprove quality of life for inflammatory ar-thritis sufferers.

For example, early use of disease modify-ing anti-rheumatic drugs (DMARDs) forrheumatoid arthr itis can improve long-term health outcomes.11 DMARDs areintended to slow or prevent damage to thejoints and thereby prevent disability anddiscomfort.

SurgeryJoints are sophisticated structures that are

designed to work precisely. Surgery may benecessary to drain excess fluid from swellingor to trim away a jagged piece of cartilage thatis causing pain. In some cases, a proceduresuch as total joint replacement may be neces-sary to completely replace a joint in whichcartilage and bone are damaged severely.12

The goal of joint replacements is to improvemobility by relieving pain and restoring thefunction in the joint.

The most common reason for having a hip or kneereplaced is osteoarthritis, according to the National

Institute of Arthritis and Musculoskeletal and SkinDiseases (NIAMS). Osteoarthritis commonly affectspeople over 45, although younger men and womencan get this disease and need a joint replacement.

In 2004, the cost for hip, knee and shoulderreplacements due to rheumatoid and osteoarthritis

in Oregon was $144 million.13

[ 20 ]

OBJECTIVE NO. 1

Monitor Oregon-specific arthritis datarelated to prevalence, activity limitations,use of health care services, costs of healthcare services, overall quality of life, andself-management.

Strategies:1. Continue to monitor Oregon-specific

arthritis data related to prevalence, activitylimitations, quality of life, self-management,and cost of health care services.

2. Continue evaluation of Oregon’s ArthritisFoundation Exercise Program.

OBJECTIVE NO. 2

Maintain and expand Oregon-specific data.

Strategies:1. Collaborate with coalition members and

other organizations on the collection, for-matting and dissemination of useful arthri-tis information.

2. Identify other sources of arthritis relateddata.

OBJECTIVE NO. 3

Increase the disseminationof data and information collected.

Strategies:1. Combine data with compelling stories.2. Present data to healthcare purchasers and

providers demonstrating the potential long-term positive impact of providing appropri-ate interventions.

DataData provides an eloquent language that

we can use to describe the impact of arthritisamong Oregonians. Through data, we canshare the scope of this impact with policy-makers, we can determine whether treat-ments are effective in controlling disease, andwe can learn what strategies might be mostbeneficial in our efforts to lessen the burdenof arthritis in Oregon.

Goal MONITOR THE IMPACT of ARTHRITIS5

EACH YEAR, ARTHRITIS IN THEUNITED STATES CONTRIBUTES TO:

• 9,500 deaths• 750,000 hospitalizations• 16 million people with limitations• 36 million ambulatory care visits• 43 million people with self-reported,

doctor-diagnosed arthritis• $51 billion in medical costs and $86

billion in total costs14

[ 21 ]

CANDACE MUELLER

I was a very happy commercial artist whoswam a mile, did half-an-hour of yoga and anhour of meditation every morning. Arthritisforced me to reinvent myself. Self-pity isn’treally my cup of tea, so I simply found thenext “open door,” and my husband and Istarted a small electronics manufacturingbusiness.

JAN COCHRAN

I have always lived by this motto—“Thechoices you make dictate the life you lead.”

Being diagnosed with rheumatoid arthritiswasn’t my choice, but the choosing how tolive with RA has definitely dictated my life.Having a half full basket instead of a half-empty one is first on my list. The field ofarthritis has come a long way, hope is on thehorizon.

MARCI EDWARDS

I am a 48-year-old special educationteacher who continues to work even thoughtyping is difficult, so I now use voice-activatedsoftware. I am currently taking three medica-tions to control my arthritis, and this year Ihad surgeries on my right and left hands.

LIONEL KRONER

I developed pain in my hands and wriststhen a body flare, while at a camp for childrenwith cancer in the 1980’s. I have remained inremission due to medications since 1996. I ama very social person living in a retirementcommunity and continue my volunteeractivities with young people.

Left to right: Candace, Jan, Marci, Lionel

FOCUS ON PROGRESS

MUSCULOSKELETAL PATIENTEDUCATORS PROGRAM

We partner with the supervising doc-tors to teach a musculoskeletal exam tosecond year medical students, pharmacystudents, physician assistants, nurse practi-tioners, resident and doctors in practice.We use our joints in the exam to showwhat arthritis truly looks like by teachingstudents and providers how to inspect,palpate and measure range of motion andfunction of every joint. We also teach stu-dents and providers about the impact ofarthritis on our activities of daily livingand use of assistive devices to open a door,turning a key, opening jars and manyother tasks to maintain independencewhile living with a chronic condition.

[ 22 ]

HOW CAN YOU GET INVOLVED?

If you would like to get involvedin the Arthritis Coalition and the

efforts being made to reduce the growingburden of arthritis among Oregonians ofall ages and communities, or would likeadditional copies of this report, contact

the Oregon Arthritis Coalitionat 971-673-0984,or via the web at

www.oregonhealth.org/arthritis.

There are opportunities forinvolvement working on statewide

arthritis activities throughout Oregon.

There is room for everyoneto participate.

Please join us!

[ 23 ]

LYNN ADAMS, MA, Fibromyalgia SolutionsILYAS AHMAD, PhD; FAIC, Senior Health

Insurance Benefits Assistance ProgramANDRÉ BARKHUIZEN, MD, Arthritis and

Rheumatic Diseases, Oregon Health &Science University, Portland VA, OregonRheumatology Alliance

CHAD CHERIEL, PhD, Institute on Aging,Portland State University

JOHN CHISM, MS, Physical Activity, Nutritionand Arthritis, DHS Public Health

CAROL CLARK, Master Trainer for the ArthritisFoundation Exercise and Aquatic Programs

KATE CLEMENS, Office of Rural Health,Oregon Health & Science University

JAN COCHRAN, Musculoskeletal Patient EducatorsProgram, Oregon Health & Science University

JANE FAULKNER, CareOregonSONDRA FRASURE, AARPNAMITA GANDHI, MA, Integrative

Movement ClinicJERE HIGH, Oregon’s Primary Care AssociationJEANETTE HILL, Volunteer for the Arthritis

Foundation, Pacific Northwest ChapterDORIS HOOTS, Elders in ActionSHELLEY IMMEL, Aging and Disability

Services Department, Multnomah CountyMARK JONES, Clackamas County Social ServicesDAWN KIMBALL, Juvenile Arthritis Task ForceCINDY KLUG, Providence Center on AgingBLANCHE KOBS, NW Parish Nurse MinistriesRICHARD LEMAN, MD, Health Promotion

and Chronic Disease Prevention, DHSPublic Health

JOHANNA LINDSAY, Arthritis Foundation,Pacific Northwest Chapter

ROBERT LOVE, OTR/L, American OccupationalTherapy Association

JENNIFER MARTIN, MPH, OMPROJUDY MCABEE, Arthritis Foundation,

National OfficeMARILEE MCCORRISTON, Arthritis

Foundation, Pacific Northwest ChapterJENNIFER MEAD, MPH, DHS-Seniors and

People with DisabilitiesJANE MOORE, PhD, RD, Health Promotion

and Chronic Disease Prevention, DHSPublic Health

CHRIS MURPHY, PT, OutpatientRehabilitation, Providence

DUYEN NGO, PhD, Health Promotionand Chronic Disease Prevention, DHSPublic Health

CINDY PRICE, Juvenile Arthritis Task ForceD’NORGIA PRICE, Senior Programs,

The Urban LeagueSHEILA RITTENBERG, National Psoriasis

FoundationRAY AND NORMA ROWE, Elders in ActionLAUREN RYKERT, OTR/L, OASIS

Health StagesJOEY SHEARER, National Psoriasis FoundationAUDREY SIENKIEWICZ, Arthritis Program,

DHS Public HealthTROY SOENEN, Office of Rural Health,

Oregon Health & Science UniversityANNETTE STIXRUD, NW Parish

Nurse MinistriesJUDITH WOODRUFF, Northwest Health Foundation

&ALL THOSE who were willing to contribute their

photos to the plan.

All Scenic photographs by Gary Halvorson,Senior Archivist, Oregon State Archivesexcept Portland Skyline; Portland OregonVisitors Association

Thanks to The Psoriasis Foundation forcoordinating the printing of the Plan.

CONTRIBUTORS

APPENDICES

[ 24 ]

LOCAL RESOURCES

ARTHRITIS FOUNDATION,PACIFIC NORTHWEST CHAPTER

The mission of the Arthritis Foundation is toimprove lives through the prevention, control andcure of arthritis and related diseases.3876 Bridge Way N., No. 300Seattle, WA 98103Phone: 206-547-2707, 1-800-542-0295Email: info.wa@arthritis.org

THE NATIONAL PSORIASIS FOUNDATION

Our mission is to improve the quality of life ofpeople who have psoriasis and psoriatic arthritis.6600 SW 92nd Avenue, Suite 300Portland, OR 97223Phone: 503-244-7404, 1-800-723-9166Website: www.psoriasis.org

SCLERODERMA FOUNDATION

To help patients and their families cope withscleroderma through supportive programs, promotepublic awareness and education, and supportresearch to improve treatment and find thecause and cure of scleroderma.Oregon ChapterP.O. Box 19296Portland, OR 97280Phone: 503-245-4588Email: SDForegon@comcast.net

THE OREGONRHEUMATOLOGY ALLIANCE (ORA)

ORA is a statewide non-profit advocacygroup of rheumatology specialists dedicated topatient care and education. ORA members includenearly all the rheumatologists in Oregon andsome rheumatologists in southern Washington aswell. ORA provides advocacy, education and qualityhealthcare for all patients with rheumatic disease.Phone: 541-344-4162Email: ora@efn.orgWebsite: www.oraonline.org/

JUVENILE ARTHRITIS TASK FORCE

In the Portland Metro area, a group of parentswith children who suffer from JRA created theOregon Juvenile Arthritis Task Force.Phone: 503-245-0684Email: orjasupport@comcast.net

NATIONAL RESOURCES

NATIONAL ARTHRITIS FOUNDATION

The Arthritis Foundation is the only nationalnot-for-profit organization that supports the morethan 100 types of arthritis and related conditionswith advocacy, programs, services and research.P.O. Box 7669Atlanta, GA 30357-0669Phone: 1-800-823-7800Website: www.arthritis.org

NATIONAL FIBROMYALGIA ASSOCIATION

To develop and execute programs dedicated toimproving the quality of life for people withfibromyalgia by increasing the awareness of thepublic, media, government and medical communities.2200 N. Glassell St., Suite AOrange, Ca 92865Phone: 714-921-0150, Fax: 714-921-6920Website: www.fmaware.org/

THE LUPUS FOUNDATION OF AMERICA

Our mission is to improve the diagnosisand treatment of lupus, support individuals andfamilies affected by the disease, increase awarenessof lupus among health professionals and thepublic, and find the causes and cure.2000 L Street, NW Suite 710Washington, DC 20036Office: 202-349-1155Health Educator: 202-349-1159To request a brochure about lupus:1-800-558-0121Website: www.lupus.org/

LOCAL & NATIONAL RESOURCES

[ 25 ]

NATIONAL OSTEOPOROSIS FOUNDATION

To prevent osteoporosis, to promote lifelong bonehealth, to help improve the lives of those affected byosteoporosis and related fractures, and to find a cure.1232 22nd Street NWWashington, D.C. 20037-1292Phone: 202-223-2226Website: www.nof.org

SJOGREN’S SYNDROME FOUNDATION

Our mission is to educate patients andtheir families, increase public and professionalawareness, and encourage research into newtreatments and a cure for sjogren’s syndrome.8120 Woodmont Avenue, Suite 530Bethesda, MD 20814Phone: 301-718-0300Website: www.sjogrens.org

SPONDYLITIS ASSOCIATION OF AMERICA

Our mission is to be a leader in the quest to cureankylosing spondylitis and related diseases, and toempower those affected to live life to the fullest.PO Box 5872Sherman Oaks, CA 91413Phone: 1-800-777-8189, 1-818-981-1616Email: info@spondylitis.orgWebsite: www.sponylitis.org

NATIONAL INSTITUTE OF ARTHRITIS& MUSCULOSKELETAL & SKIN DISEASES

Our mission is to support research into thecauses, treatment, and prevention of arthritis andmusculoskeletal and skin diseases, the training ofbasic and clinical scientists to carry out thisresearch, and the dissemination of informationon research progress in these diseases.1 AMS CircleBethesda, Maryland 20892-3675Phone: 301-495-4484, 1-877-22-NIAMS(toll free), TTY: 301-565-2966,Fax: 301-718-6366Email: niamsinfo@mail.nih.govWebsite: www.niams.nih.gov/

AMERICAN PAIN FOUNDATION

Our mission is to improve the quality of lifeof people with pain by raising public awareness,providing practical information, promotingresearch, and advocating to remove barriers andincrease access to effective pain management.210 North Charles Street, Suite 710Baltimore, Maryland 21201-4111Website: www.painfoundation.org

AMERICAN COLLEGEOF RHEUMATOLOGY

ACR works to better inform the medicalcommunity, the legislature and the public aboutthe importance of Rheumatology and the impactof Rheumatic Disease.1800 Century Place, Suite 250Atlanta, GA 30345Phone: 404-633-3777Website: www.rheumatology.org

[ 26 ]

There are over 100 different types of arthritis.The following list includes some of the most

common types and terms.

Ankylosing Spondylitis is a chronic, orlong-lasting disease, that primarily affects thespine and may lead to stiffness of the back. Thejoints and ligaments that normally permit theback to move become inflamed. The joints andbones may grow (fuse) together. Some patientsmay also have inflammation of hips or shouldersaffecting ability to walk or use their arms.

Fibromyalgia is a chronic syndrome thatcauses widespread pain in muscles and joints.Pain and localized tender points occur in themuscles and tendons, particularly those of theneck, spine, shoulders, and hips. Patients mayalso experience fatigue, memory problems,depression and sleep disturbances.

Gout is a form of arthritis that causes sud-den, severe episodes of pain, tenderness,redness, warmth and swelling of joints. Thistype of arthritis results from deposits ofneedle-like crystals of uric acid in the con-nective tissue, joint space, or both. Uric acid isa normal breakdown product of purines,which are present in body tissue and in manyfoods. Usually, uric acid passes through thekidney into urine and is eliminated.

Juvenile rheumatoid arthritis (JRA) isthe most common form of arthritis in childrenand is referred to as an autoimmune disease.Symptoms of JRA include fatigue, joint stiff-ness following sleep or inactivity, and weaknessin muscles and other soft tissues. There is nosingle test to diagnose JRA. The diagnosis isdetermined by the presence of active arthritisin one or more joints for at least six weeks afterother conditions have been ruled out.

Lupus is a disease of the immune system,which affects joints, skin, kidneys and otherparts of the body. The immune system is yourbody’s natural defense against infections, such

as bacteria and viruses. In lupus, the immunesystem produces antibodies that react with thebody’s own tissues. Because of this, lupus isreferred to as an autoimmune disease. In mostcases the term “lupus” refers to the formknown as systemic lupus erythematosus.

Osteoarthritis, or “degenerative joint dis-ease, ”most often affects the knees, hips, lowerback and neck, small joints of the fingers andthe base of the thumb and big toe. Degenerationof joint cartilage and changes in underlyingbone and supporting tissues lead to pain, stiff-ness, difficulty with movement and activity.

Osteoporosis is a disease that causes bonesto weaken and have an increased risk for fracture.This can lead to rounded shoulders, loss ofheight and even painful fractures (broken bones).The word osteoporosis means bone (osteo) thatis porous or filled with holes (porosis).

Pseudogout is caused by the collection ofcalcium pyrophosphate crystals in joints. Theremay be attacks of joint swelling and pain in theknees, wrists, ankles, and other joints.

Psoriatic arthritis is a condition that causespain and swelling in and around joints. It canshow up in fingers and toes as well as the neck,lower back, knees, ankles, and other joints. Pso-riatic arthritis is related to psoriasis, a lifelongskin disease that causes dry, scaly patches of skin.

Rheumatoid arthritis is referred to as anautoimmune disease and is characterized bychronic inflammation of the joint lining.Symptoms include pain, stiffness, and swellingof multiple joints. The inflammation mayextend to other joint tissues and cause boneand cartilage erosion, joint deformities, move-ment problems, and activity limitation. Rheu-matoid arthritis can also affect connectivetissue and blood vessels throughout the body,triggering inflammation in a variety of organs,including the lungs and heart, and increasinga person’s risk of dying of respiratory andinfectious diseases.

ARTHRITIS DEFINITIONS

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1. Oregon’s Arthritis Burden Report 20032. CDC. Prevalence of arthritis—United States, 1997. MMWR 2001;50:334–6.3. Allan C. Gelber, MD, MPH, PhD; Marc C. Hochberg, MD, MPH; Lucy A. Mead, ScM; Nae-Yuh

Wang, MS, PhD; Fredrick M. Wigley, MD; and Michael J. Klag, MD, MPH “Joint Injury in YoungAdults and Risk for Subsequent Knee and Hip Osteoarthritis” Annals of Internal Medicine 2000;133(5) Sept. 5: 321–328

4. Oregon Health & Science University, Office of Rural Health. (cited on 2005 August 4) Availablefrom: http://www.ohus.edu/oregonruralhealth/centerforruralhealth.html

5. Minority Health, Cultural Competency of Health Care Providers could Reduce Disparities in CareRelated to Race/Ethnicity. AHRQ, United States Department of Health and Human ServicesNovember 2000. (cited on 2005 August 11) Available from: http://www.ahrq.gov/research/nov00/1100RA13.htm

6. CDC. Racial/Ethnic Differences in the Prevalence and Impact of Doctor-Diagnosed Arthritis—United States, 2002. MMWR 2005;54(05) 119–123

7. Leading Health Indicators, Healthy People 2010. (cited on 2005 August 11).8. CDC. Arthritis Prevalence and Activity Limitations—United States. 1990.MMWR

1994;34:433.9. CDC. Prevalence of Disabilities and Associated Health Conditions among Adults—United States.

1999.MMWR 2001;50:120–510. Pope AM, Tarlow AR, eds. Disability in America: toward a national agenda for prevention.

Washington.National Academy Press, 199111. Arthritis Foundation, ASTHO, Center for Disease Control and Prevention, 1999. National

Arthritis Action Plan. Atlanta, GA.12. All You Need to Know About Joint Surgery, Arthritis Foundation. Zimmer 2002.13. 2004 Hospital Dischard Index provided by Oregon Association of Hospitals and Health Systems;

Lake Oswego, OR.14. CDC. Targeting Arthritis: Reducing Disability for 43 million Americans. (cited on 2005 December 1)

http://www.cdc.gov/nccdphp/publications/aag/arthritis.htm

Scleroderma—also known as systemicsclerosis, Scleroderma means “hard skin.” Thisdisease could affect many parts of the body, suchas the skin, blood vessels, digestive system(esophagus, stomach and bowel), heart, lungs,kidneys, muscles and joints. The exact cause ofscleroderma is unknown. Evidence supports thenotion that Scleroderma is an autoimmune dis-ease because abnormalities of the immune sys-tem, particularly antinuclear antibodies (ANAs),are found in most people with scleroderma.

Septic arthritis develops when bacteriaspread from a source of infection through thebloodstream to a joint or the joint is directlyinfected by traumatic penetration or surgicalprocedures. The onset of the symptoms is usu-ally rapid with joint swelling, intense jointpain, and low-grade fever. Urgent treatment isrequired to prevent local damage to joints orspread of infection throughout the body.

REFERENCES

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OREGON ARTHRITIS COALITION800 NE OREGON STREET, SUITE 730PORTLAND, OR 97232

ARTHRITIS FROM A TO ZAchilles tendinitis, Achondroplasia, Acromegalic athropathy, Adhesive capsulitis, Adult

onset Still’s disease, Amyloidosis, Ankylosing spondylitis, Anserine bursitis, Avascular necrosis,Behcet’s syndrome, Bicipital tendinitis, Blount’s disease, Brucellar spondylitis, Bursitis,Calcaneal bursitis, Calcium pyrophosphate dihydrate (CPPD) crystal deposition disease,Caplan’s syndrome, Carpal tunnel syndrome, Chondrocalcinosis, Chondromalacia patellae,Chronic synovitis, Chronic recurrent multifocal osteomyelitis, Churg-Strauss syndrome,Cogan’s syndrome, Cortiocostero id-induced osteoporosis, Costosternal syndrome, CRESTsyndrome, Cryoglobulinemia, Degenerative joint disease, Dermatomyositis, Diabetic fingersclerosis, Diffuse idiopathic skeletal hyperostosis (DISH), Discitis, Discoid lupus erythemato-sus, Drug-induced lupus, Duchenne’s muscular dystrophy, Dupuytren’s contracture, Ehlers-Danlos syndrome, Enteropathic arthritis, Epicondylitis, Erosive inflammatory osteoarthritis,Exercise-induced compartment syndrome, Fabry’s disease, Familial Mediterranean fever,Farber’s lipogranulomatosis, Felty’s arthritis, Fibromyalgia, Fifth’s disease, Flat feet, Foreignbody synovitis, Freiberg’s disease, Fungal arthritis, Gaucher’s disease, Giant cell arteritis,Gonococcal arthritis, Goodpasture’s syndrome, Gout, Granulomatous arteritis, Hemarthrosis,Hemochromatosis, Henoch-Schonlein purpura, Hepatitis B surface antigen disease, Hipdysphasia, Hurler syndrome, Hypermobility syndrome, Hypersensitivity vasculitis, Hyper-trophic osteoarthropathy, Immune complex disease, Impingement syndrome, Jaccound’sarthropathy, Juvenile ankylosing spondylitis, Juvenile dermatomyositis, Juvenile rheumatoidarthritis, Kawasaki disease, Kienbock’s disease, Legg-Calve-Perthes disease, Lesch-Nyhansyndrome, Linear scleroderma, Lipoid dermatoarthritis, Lofgren’s syndrome, Lyme disease,Malignant synovioma, Marfan’s syndrome, Medial plica syndrome, Metastatic carcinoma-tous arthritis, Mixed connective tissue disease (MCTD), Mixed cryoglobulinemia,Mucopolysaccharidosis, Multicentric reticulohistiocytosis, Multiple epiphyseal dysplasia,Mycoplasmal arthritis, Myofascial pain syndrome, Neonatal lupus, Neuropathic arthropathy,Nodular panniculitis, Ochronosis, Olecranon bursitis, Osgood-Schlatter’s disease, Osteone-crosis, Osteoporosis, Overlap syndrome, Pachydermoperiostosis, Paget’s disease of bone,Palindromic rheumatism, Patellofemoral pain syndrome, Pellegrini-Stieda syndrome,Pigmented villonodular synovitis, Piriformis syndrome, Plantar fasciitis, Polyarteritis nodosa,Polymyalgia rheumatica, Polymyositis, Popliteal cysts, Posterior tibial tendinitis, Pott’s disease,Prepatellar bursitis, Prosthetic joint infection, Pseudoxanthoma elasticum, Psoratic arthritis,Raynaud’s phenomenon, Reactive arthritis/Reiter’s syndrome, Reflex sympathetic dystro-phy syndrome, Relapsing polychondritis, Retrocalaneal bursitis, Rheumatic fever, Rheuma-toid arthritis, Rheumatoid vasculitis, Rotator cuff tendinitis, Sacroiliitis, Salmonella osteo-myelitis, Sarcoidosis, Saturnine gout, Scheuermann’s osteochondritis, Scleroderma, Septicarthritis, Seronegative arthritis, Shigella arthritis, Shoulder-hand syndrome, Sickle cell arthr-opathy, Sjogren’s syndrome, Slipped capital femoral epiphysis, Spinal stenosis, Spondylolysis,Staphylococcus arthritis, Stickler syndrome, Subacute cutaneous lupus, Sweet’s syndrome,Sydenhan’s chorea, Syphilitic arthritis, Systemic lupus erythematosus (SLE), Takayasu’sarteritis, Tarsal tunnel syndrome, Tennis elbow, Tietse’s syndrome, Transient osteoporosis, Trau-matic arthritis, Trochanteric bursitis, Tuberculosis arthritis, Arthritis of Ulcerative colitis,Undifferentiated connective tissue syndrome (UCTS), Urticarial vasculitis, Viral arthritis,Wegener’s granulomatosis, Whipple’s disease, Wilson’s disease, Yersinial arthritis.