Asthma Prevalence and Management: Addressing the Barriers to Ideal Asthma Care

National Tribal ForumCamlesh Nirmul, MD, FAAP

Phoenix Indian Medical Center, Indian Health ServiceMay 2, 2013

Disclaimer: The views expressed in this lecture do not necessarily represent the view of the Phoenix Indian

Medical Center or the Indian Health Service.

The Asthma “Challenge”• There are a lot of people suffering from asthma – The burden of asthma is increasing among all

populations– Etiology of asthma is multi-factorial, with definite

disparities in the asthma prevalence between different racial/ethnic groups

• We know how to manage it successfully– National guidelines for the diagnosis and management

of asthma have existed for over a decade– Newer/more effective treatment and devices

• Yet we have not eliminated the burden of asthma!

The Burden of Asthma• Increasing prevalence (8-13%) in last decade– Involves up to 1 in 8 children– Rate is increased in certain groups (inner city, some

minorities)• Adult CDC BRFSS 2009 data– National prevalence rate (current asthma): 8.8% – Arizona rate (current asthma): 10.8%– Pediatric AZ rate (17yr and younger): 13.5%

• NC Asthma Program 2010: lifetime asthma– American Indian/Alaska Native – 16%– African-America – 15.5%– Non-Hispanic White – 12.2%

The Burden of Asthma

• Pediatric asthma prevalence– Disparities exist in the burden of asthma in

different subgroups but little is known about the AI/AN community

– AI/AN data limited but some suggestion that may be much higher than national average• NE Montana 1999 study at Ft. Peck IHS Unit –

15.5% children had a diagnosis of asthma• Jemez Pueblo 1995 study in NM found rate twice

the national average - 12.3%• Washington State 2012 data – 12 graders reported

twice the rate of general population – 17%

AI/AN Data – DHHS: Office of Minority Health

• “American Indian/Alaska Native adults are 30% more likely to have asthma as non-Hispanic Whites. Data on asthma conditions for American Indian/Alaska Natives is limited. “

• Percentage of asthma among persons 18 years of age and over, ever being told they had asthma, 2010– American Indian/Alaska Native – 12.3%– Non-Hispanic White – 12.9%

• Percent of current asthma prevalence, 2010 – American Indian/Alaska Native – 10.5%– Non-Hispanic White – 8%

• Source: CDC 2012. Summary Health Statistics for U.S. Adults: 2010. Table 4• Percentage of adults 18 years of age and over with asthma, 2004-2008

– American Indian/Alaska Native – 14.2%– Non-Hispanic White – 11.6%

• Source: CDC 2010. Health characteristics of the American Indian or Alaska Native adult population: United States, 2004–2008, Table 4.

The Burden of Asthma• Increasing morbidity/mortality from asthma– ED visits and hospitalization rates are increasing,

especially in young • 25% of children with asthma visited ED in last year

(Washington data: AI/AN rate, same as national rate)• 39% of pediatric asthma hospitalizations were under age 5 yrs

(2003) • Washington study found hospitalization rate 2-3x higher in

AI/AN children under 1 year age

– Death from asthma remains rare in pediatrics • However the death rate increased 30% in the last decade• Fatal asthma not just in severe asthma – 1/3 have mild

asthma

Effect of Asthma on Quality of Life

• Childhood asthma is leading cause of missed school days (loss of 14 million school days)– 52% missed school or day care at least once

• Over 60% of kids have some limitation in their lives from asthma (sleeping through the night, playing sports/exercising, etc)

• Over 1/3 of kids and parents avoid activities because of the child’s asthma

• Over 1/3 of parents miss work because of their child’s asthma

Management of asthma

• While there is no cure for asthma, asthma can be managed successfully

• Because of advances made in understanding the causes and management of asthma, asthma is now treatable and controllable– IF providers use and follow national asthma

guidelines to treat asthma optimally– IF patients/families adhere to this prescribed

management

Management of asthma

• Guidelines from the NIH’s National Asthma Education and Prevention Program outline how to achieve symptom-free days and normal quality of life through a multi-modal approach– Pharmacotherapy– Control of the environment and elimination of triggers– Treatment of associated conditions– Education and encouraging adherance

• Do these guidelines apply to and work across racial and ethnic lines?

Addressing the Challenge in the Native American (NA) Community

• What is known about the burden of asthma in the AI/AN population?

• If a disparity exists compared to national data and other groups, how can we overcome it to achieve optimal asthma care?

• What are the barriers that need to be addressed to improve asthma care and eliminate any disparity?

The Phoenix Native American Community

• The Phoenix Area IHS oversees delivery of health care to >140,000 AI/ANs in Arizona, Nevada and Utah– Includes over 40 tribal groups and 10 service units, the largest of

which is the Phoenix Service Unit

• Over 62% of the AI/AN population in Arizona lives in primarily urban areas– The majority of the population is Navajo, with significant

percentages from the Yaqui Pima and Apache nations– Estimated >80,000 children under age 15 in Arizona who may

receive care through the HIS– Found over 21% of patients under age 15 with physician diagnosis

of asthma

Burden of Asthma in the Phoenix Area

• Maricopa county/Phoenix urban environment with high levels of pollution, know trigger for asthma– Ozone high in the valley, leads to inflammation in airways and

triggers asthma– Particulates alerts are frequent (PM 2.5, PM 10)

• ADEQ 2008 report: Study of 5000 asthma events in 5-18yr olds in Maricopa County found 14% increase in asthma events when PM10 increased from 25% to 75%

• PM 10 large particulates stick to airways, leading to increased mucus in efforts to expel them

• PM 2.5 goes deep into the airways, where difficult to expel

– High construction areas – stir up mold/fungal spores in the dirt leading to increased asthma events in those sensitive to these molds

Barriers to successful asthma care• Paradigm shift over last decade– Goal was to aggressively treat symptoms of asthma– Current goal is long-term control of asthma

• Focus on asthma as a chronic disease • Aggressively treat airway inflammation• Control the environment and work on prevention• Teach self-management of asthma (asthma action plan)

• Goal of controlling asthma is difficult to meet– Definition of “control” is complex and involves

• Decreasing asthma symptoms• Improving lung function• Improving quality of life and maintaining normal activity

– Asthma control changes over time and needs to be measured at every visit

Barriers to successful asthma care

• Measuring asthma control is difficult– Measures of control correlate poorly with each other

• Symptom review, pulmonary function (spirometry), and patient questionnaires are various measures available

• Relying on just one measure does not give a complete picture of the patient’s asthma

– May be difficult to perform all measures at each visit• Cost and availability may prohibit performing PFTs/spirometry• Patient questionnaires may take time and effort to administer

• Poor adherence to guideline recommendations– While the guidelines are widely endorsed and

disseminated, they have not been effectively implemented and followed

– Involves providers, patients, and the health care system

Provider Adherence Factors

• Adherence to guidelines themselves– Inertia of previous practice - change is always difficult! – Guidelines have become more complicated– Problem is that poor adherence leads to under-

diagnosis and under-treatment of asthma• Visit time constraints and poor reimbursement– Creates less time and incentive for effective education– Does not allow environment conducive to asking

questions • Communication barriers– Language barriers for verbal but also written education– Lack of awareness of “medical speak” in talking with

families

Patient/Family Adherence Factors

• Poor adherence to treatment regimen– Medication issues

• Confusion over the difference in daily controller vs rescue medications

• Fears about side effects - “steroid phobia”• Poor technique in using medication delivery devices leading

to less efficacy– Environmental control is complicated, especially for

indoor allergens

• Literacy barriers– May not understand verbal or written instructions because of

language itself as well as literacy level of instructions

Patient/Family Adherence Factors

• Cultural barriers– May not trust medical system fully– Beliefs/perceptions about asthma and chronic disease

• Expectation that asthma can be “cured”• Variable disease makes it more difficult to get adherence

• Socioeconomic - limited access/resources – Can lead to overuse of ED/urgent care and lack of

continuity– May affect adherence to medications due to cost of

medications and access to delivery devices– Barrier for purchasing items important in home control

of allergens/asthma triggers (covers, HEPA filters, etc.)

Barriers to successful asthma care: Health Care System

• Limited access/resources – Decreased ability to schedule and receive appropriate follow-up

care • May lead to overuse of ED/urgent care and lack of continuity• Less access to specialized tests or providers (especially allergists,

allergy testing to identify specific triggers)

– Restricted access to medications and asthma equipment (especially spacers and peak flow meters)

• Communication/continuity of care issues – Lack of feedback loops between all the involved players (ED -

primary care provider - school - pharmacy) results in fragmented care for asthma in the system

Individual Barriers to Care in the NA Community

• Socioeconomic– Limited health insurance coverage is experienced by

60% of the population– Low income, single caregivers

• Over 35% of children live in single parent households • Over 30% live below the poverty line

– Housing options often limited and may not be able to control environment adequately (especially to limit indoor trigger exposure)

– Leads to limited resources and less ability to maintain adherence with daily meds and frequent visits

Individual Barriers to Care in the NA Community

• Environmental triggers – allergens and irritants– Tobacco smoke (Washington study)

• Higher rates of adult smoking– AI/AN adult smoking rate 2x general population– 1/3 AI/AN adults with asthma smoke

• High rates of secondhand tobacco smoke exposure– 1/7 non-smoking adults are exposed to secondhand tobacco smoke

– Indoor allergens (Washington study)• Carpets/rugs - 95% of AI/AN houses had carpets/rugs• Inside pets – 72% houses

– Wood burning – indoor and outdoor• Cultural events and ceremonies• Community events

Individual Barriers to Care in the NA Community

• Cultural/Psychosocial– Beliefs/perceptions about asthma and asthma

medications– Beliefs/perceptions about chronic disease– Lack of trust in provider/system may prevent optimal

asthma education and care– Health care practices with overuse of acute care vs

preventive (<10% of visits are for preventive screening)– Mobile/transient population (urban to reservation)– Multiple households (as well as caretakers)

Individual Barriers to Care in the NA Community

• Problems with adherence– Lack of understanding of the chronicity of asthma– Medications are often not taken appropriately

• Confusion over the difference in daily controller vs rescue medications

• Reluctance to use daily meds - “steroid phobia”• Poor technique in using medication delivery devices leading

to less efficacy

– Reliance on child when still young to be responsible for his/her asthma

– Primary use of unscheduled/acute care visits instead of regular follow-up

How can we meet this challenge and achieve optimal asthma care?

• Identify the individual and specific barriers to adherence– Include provider, patient/family, and health

system barriers

• Address these barriers systematically– Improve education– Improve communication– Attempt behavior change

Meeting the challenge: Providers• Read and know the guidelines!

– Most providers have seen the guidelines, yet adherence is low

• How closely do you follow the guidelines?– Do you diagnose asthma correctly?– Do you assess both impairment and risk?– Are you prescribing the correct medications for each classification

of asthma?– Are you educating patients and families on the differences in

medications, use of asthma delivery devices, and self-management of asthma (Asthma Action Plans, environmental control of triggers)?

– Are you seeing patients for regular follow-up and assessing asthma control on these visits? (And if asthma is uncontrolled, do you adjust treatment appropriately?)

Meeting the challenge: Providers• Tools/Teaching aides to increase awareness of and use of

guidelines– Pocket cards, posters of step classifications, medications charts,

and sample devices - “Toolkit” in every room– Patient encounter forms or worksheets specific for asthma

• Prompt providers to ask right questions so that reach right diagnosis• Guide providers to use preferred treatment

• Involve other personnel to help share the asthma care burden and overcome time constraints– Nursing/pharmacy/RT can assist with teaching use of

devices/meds– PHN can help with allergy/trigger avoidance, self-management

plans (asthma action plans) and adherence– Enlist someone to be an asthma champion or train to be a

certified asthma educator– Use school programs like ALA “Open Airways” program

Meeting the challenge: Communication/Education

• Administer asthma questionnaires to quickly assess control– Asthma Control Test (A.C.T.)– Asthma Therapy Assessment Questionnaire (ATAQ)

• Practice “active listening”– Elicit concerns and fears of families and patients– Create environment where questions are freely asked

• Make education more effective– Use non-medical language– Choose appropriate education materials

• Multilingual handouts, appropriate literacy level• Non-written education (video, CD, web-based, etc.)• Visual aides (posters, charts, etc.)

– Practice the “teach-back” method with patients

Meeting the challenge: Patients• Much harder to address - often involves behavior change

but good education and communication help• Discuss asthma as a chronic disease

– Lifelong nature, potential for severe disease (even death)– Lack of cure but existence of good treatment– Variable nature of disease, importance of frequent/regular f/up– Teach families how to recognize asthma control

• Establish an expectation for quality of life• “Rules of 2” (Baylor)

• Address adherence to treatment recommendations– Discuss difference between medications

• Use medication charts/pictures to ensure patients know which medication is being talked about

• Discuss role of daily control medications– Dispel fears about side effects (especially steroids)– Simplify dosing regimen

Meeting the challenge: Patients• Make asthma care relevant to each family/patient

– Look for the measure or outcome that matters most– Identify the specific triggers/allergens that they can avoid or

control best– Understand the disease from their perspective

• Ask what is most important to them in treating or addressing asthma • Determine their attitude toward asthma and the disease itself

• Identify and directly address any concerns/fears– Try to find common ground that is acceptable to the provider and

the family– Maintain open environment to encourage ongoing

communication• Key is to consider all these barriers and individualize

asthma care plan to each patient and family situation

Meeting the challenge: Patients• Socioeconomic factors

– More aggressive identification of need for extra resources • Most of NA pediatric community qualifies for state resources

– Assist with transportation and help advocate for housing/environmental changes

• Cultural issues– Often involves challenge of attempting behavior change in a

culturally sensitive way– Establish trust with family/patient

• Listen to their concerns about the disease• Offer support for traditional practices/beliefs but reinforce need

to also follow prescribed treatment plans• Involve extended family/all caretakers

Meeting the challenge: Patients• Environmental control/avoidance– Indoor triggers

• Aggressively work on tobacco cessation and avoidance of second hand smoke

• Individual plan with the family on what allergen control measures work best for their housing and financial resouces

– Outdoor triggers• Wood burning/smoke avoidance

– Dry wood, not wet, avoid paper burning, consider wood pellets

• Community/school partnership – Flag programs (Outdoor vs indoor activity days)– Grass cutting coordination for sport fields

How can we meet this challenge and achieve optimal asthma care?

• Identify specific barriers to adherence in your own practice and in your patients/families

• Use quality management tools to overcome these barriers- work to achieve outcomes that matter – Patients/Families care about quality of life, simple treatment

plans, no hospitalization or urgent visits, decreased stress and fears about asthma and its impact on their lives, low costs

– Clinicians care about increased asthma control and quality of life, decreased symptoms, decreased rescue medication use, increased lung function, decreased unscheduled visits

– Health care systems care about correct drug ratios, decreased ED/urgent care visits and hospitalizations

• Key to success: individualize plans to each patient/family situation = PATIENT CENTERED MEDICINE

Ultimate Goals

• With the burden of asthma in the NA community, how can we meet the challenge to achieve optimal asthma care?– Identify any risk factors contributing to this high

burden of asthma and target efforts to decrease them – Attempt to eliminate any disparities in the burden of

disease – Identify any barriers to care– Address these barriers in a culturally sensitive way

REFERENCESNAEPP of NIH: www.nhlbi.nih.gov/guidelines/asthma/index.htm - 2007

asthma guidelines.2009 AZ Asthma Burden Report; AZ Dept. Health Services, November 20112012 Asthma Among AI/AN in Washington; Washington Dept. of Health.MMWR: Key Clinical Activities for Quality Asthma Care, March 2003.AZ Hospital Discharge Database - 2003 data.“Regional Differences in Indian Health,” 5/03 publication by the DHHS (of

data from FY 2000-2001).“Maricopa County Children with Asthma,” April 2005 Community Report by

the Health and Disability Research Group. www.asthmainamerica.com; “Children and Asthma in AZ/NM” - subset of

the Children and Asthma in America study conducted by the Asthma Action America campaign in 2004.

www.gappsurvey.org – Global Asthma Physician and Patient Survey, 2005.www. cdc.gov/health/asthma.htm - links to data and surveillence; “Key

Clinical Activities for Quality Asthma Care,” March 2003. CDC 2009 BRFSS Asthma Prevalence Data.

REFERENCES Asthma burden statistics and barriers to care in the PIMC community

originate from a planning grant funded by the AAP CATCH program. IRB protocol number PXR 05.02

Bukstein, Don, et al. Asthma end points and outcomes: What have we learned?,” Journal of Allergy and Clinical Immunology, 2006, 118: S1-15.

Clark, Donald, et al. “Asthma in Jemez Pueblo schoolchildren,” American Journal of Respiratory and Critical Care Medicine, 1995, 151: 1625-1627.

Fuhlbrigge, Al, et al. “The burden of asthma in the US,” American Journal of Respiratory and Critical Care Medicine, 2002, 166: 1044-1049.

Hendrickson, R. et al. “High frequency of asthma in Native American children among the Assiniboine and Sioux tribe of northeast Montana,” IHS Provider, February 2003, 38-39.

Kurzius-Spencer, M. et al. “The presentation and treatment of asthma among Alaska Native children in the Yukon-Kuskokwim Delta,” preliminary paper from Dr. Anne L. Wright, Arizona Respiratory Center.

REFERENCES Li, James T., et al. “Attaining optimal asthma control: A practice parameter,”

Journal of Allergy and Clinical Immunology, 2005 draft.Liu, LL et al. Asthma and bronchiolitis hospitalizations among American

Indian children,” Archives of Pediatric and Adolescent Medicine, 2000, 154: 991-996.

Peterson, K. et al. “A Qualitative Study of the Importance and Etiology of Chronic Respiratory Disease in Alaska Native Children,” Alaska Medicine, 2003, 14-20.

Rose, Diane and Ann Garwick. “Urban American Indian family caregivers’ perceptions of barriers to management of childhood asthma,” Journal of Pediatric Nursing, 2003, 18: 2-11.

Schatz, Michael, et al. Asthma Control Test: Reliability, validity, and responsiveness in patients nor previously followed by asthma specialists,” Journal of Allergy and Clinical Immunology, 2006, 117: 549-56.

Van Sickle, David and Anne L. Wright. “Navajo perceptions of asthma and asthma medications: Clinical implications,” Pediatrics, 2001, 108: 1-7.

Wind, S. et al. “Health, place and childhood asthma in southwest Alaska,” preliminary paper from Dr. Anne L. Wright, Arizona Respiratory Center.

RESOURCESwww.azasthma.org- AZ’s asthma coalition website; links to Provider,

Patient/Family, and School Toolkits; links to 2007 guidelines, STEPS Program Quick Guidelines

www.epa.gov/asthma- Home environmental checklist, brochures, Tools for Schools kit, home visiting program development, etc.

www.naecb.org – National asthma educator certification board websitewww.aafa.org - Asthma and Allergy Foundation of America site; ACT

(Asthma Care Training); CME based Asthma Management Program for nurses/RTs; “You can control asthma” and validated “Wee Wheezers” education program for patients and families

www.breatherville.org - AANMA (Network of mothers of asthmatics) – user-friendly site for patients, schools and providers

www.starbright.org - free asthma CD-ROM game for kids to learn about triggers and asthma

www.nhlbi.nih.gov/health/prof/lung/asthma/pace/index.htm - link to PACE program and it’s resources and online education seminar

RESOURCESwww.getasthmahelp.org – Michigan asthma program (AIM); compilation

of asthma resources (for family and providers)www.calasthma.org/resources and www.betterasthmacare.org- excellent

CA asthma sites that compile extensive patient handouts (multiple languages), education materials/posters, provider tools (under the Health Professionals resources tabs), worksheets, etc.

www.oregon.gov/dhs/ph/asthma - Oregon’s asthma site with provider tools like pocket card, patient handouts, etc.

www.ttuhsc.edu/elpaso/som/asthma- print “Multicolored Simplified Asthma Guidelines Reminder” asthma worksheets

www.mainehealth.org/mh_body.cfm?id=364 – website of the Maine AH! Asthma health program; go to the “clinical tools” and will find multiple resources and performance improvement examples

www.asthmanow.net - NH asthma site, with great toolbox of office resources (chart audit, checklists, etc.) as well as section on health professional education (multiple powerpoints)

www.asthma-iAAP.com - Minnesota Asthma Program interactive Asthma Action Plan (iAAP).