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

1. Asthma Prevalence and Management: Addressing the Barriers to Ideal Asthma Care National Tribal Forum Camlesh Nirmul, MD, FAAP Phoenix Indian Medical Center, Indian Health Service May 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.

2. 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!

3. 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%

4. 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%

5. 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.

6. 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

7. 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

8. 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

9. 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?

10. 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?

11. 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

12. 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

13. 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

14. 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

15. 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

16. 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

17. 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.)

18. 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

19. 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

20. 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

21. 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)

22. 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

23. 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

24. 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?)

25. 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

26. 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

27. 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

28. 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

29. 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

30. 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

31. 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

32. 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

33. REFERENCES NAEPP of NIH: www.nhlbi.nih.gov/guidelines/asthma/index.htm - 2007 asthma guidelines. 2009 AZ Asthma Burden Report; AZ Dept. Health Services, November 2011 2012 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.

34. 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.

35. 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.

36. RESOURCES www.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 website www.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

37. RESOURCES www.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).