Provision and Disclosures Outcomes Beyond Cultural …• The most popular and most well studied...

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Disparities in Health Care Provision andOutcomes – Thinking Beyond Cultural

Competence

Charles Ellis, PhD CCC‐SLP

Professor, East Carolina University

Director of Research, East Carolina University Center for Health Disparities

Presentation at the 50th Annual Mid‐South Conference on Communicative Disorders

March 5, 2020

Memphis, Tennessee.

Disclosures

• Financial• Salaried employee of East Carolina University & Agency

• Grant support for 1 R03 HS025043‐01A1 from Agency for Healthcare Research & Quality

• Non‐financial• None

Outline

• Brief history of health disparities

• Disparities in adult neurogenic communication disorders outcomes

• Contributors to disparities in adult neurogenic communication disorders outcomes

• Exploring the role of cultural competence and diversity in SLP

• Novel strategies and considerations to reduce disparities in adult neurogenic disorders

Objectives

• Participants will be able to describe the historical state of health disparities in the US.

• Participants will be able to describe the nature of disparities in adult neurogenic communication outcomes.

• Participants will be able to verbalize strategies to reduce disparities in adult neurogenic communication outcomes.

Race and Health Outcomes: Historical Perspectives and Implications for Aphasia Outcomes

• 2000 – Congress passed the Minority Health and Health Disparities Research and Education Act of 2000 (Public Law 106‐525)

• Authorized the Institute of Medicine’s (IOM) landmark study “Unequal Treatment” documenting longstanding disparities in healthcare across a variety of settings and health conditions.

• The report also noted that racial minorities were far less likely to receive routine medical procedures, were more likely to experience lower quality healthcare services, but more likely to receive lower limb amputations and other less desirable treatment options for diabetes and other conditions.

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Ellis, Peach & Briley (2019). Race and Outcomes: Implications for Speech‐Language Pathologists Managing Adults with Acquired Aphasia.

Unequal Treatment: Confronting Racial and Ethnic Disparities

in Healthcare

Institute of Medicine (2003)

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• Disparities consistently found across a wide range of disease areas and clinical services

• Disparities are found even when clinical factors, such as stage of disease presentation, co‐morbidities, age, and severity of disease are taken into account

• Disparities are found across a range of clinical settings, including public and private hospitals, teaching and non‐teaching hospitals, etc.

• Disparities in care are associated with higher mortality among minorities

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Unequal Treatment Race and Health Outcomes: Historical Perspectives and Implications for Aphasia Outcomes

• 2010 ‐ Patient Protection and Affordable Care Act (PPACA) designed to reduce the nation’s continually rising healthcare costs by emphasizing coverage, costs, and care.

• PPACA also designed to reduce healthcare disparities by improving access to health care for all US citizens

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10‐year General Inflation vs Healthcare Inflation Rates

Disparities are Not New

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Evans County Heart Study (1958 – 1995)

Public Health Reports (1963)Vol. 78, No. 12, pp. 1051-1059.

Journal of Chronic Disease1965, Vol. 18, pp. 443-468.

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Evans County Heart Study

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Disparities in Aphasia

Aphasia Outcomes• Aphasia is communication disorder resulting from an impairment of language, affecting the production or comprehension of speech and the ability to read or write. Aphasia is always due to injury to the brain‐most commonly from a stroke, particularly in older individuals. But brain injuries resulting in aphasia may also arise from head trauma, from brain tumors, or from infections.

• There is believe to be ~2,500,000 people in the US living with aphasia• Aphasia in North America (2018)

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What is the impact of aphasia?

• “Life satisfaction is a global assessment of a person’s quality of life according to his chosen criteria (Shin & Johnson, 1978, p. 478).”

• “Understanding life satisfaction among PWA is important as it reflects the individual’s response to this life changing communication disorder.”

• “Life satisfaction is not a stable construct. Even in the absence of a life changing event such as the onset of aphasia, life satisfaction is not unwavering.”

• “Aphasia is a communication disability contributes to reduced life participation……….resulting in reduced life satisfaction.”

• “Factors that influence life satisfaction among PWA include:• Post‐stroke depression• Post‐stroke declining health • Changes in social support post‐stroke.”

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How common is aphasia?

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How Costly is Aphasia?

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Disparity Factor 1 – Race/Ethnicity

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Race and Aphasia Clinical Outcomes

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Ellis, C. (2018). African Americans and Aphasia: A 25 year review. Journal of the National Black Association for Speech‐Language and Hearing, 13(1), 31‐42.

Ellis, C. (2018). African Americans and Aphasia: A 25 year review. Journal of the National Black Association for Speech‐Language and Hearing, 13(1), 31‐42.

Race and Aphasia Clinical Outcomes

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Total=290Whites=261Blacks=29

Ellis, C. & Peach, R.K. (2016). Racial‐ethnic differences in the Boston Naming Test among persons with aphasia: Disparity or diagnostic inaccuracy. Archives of Physical Medicine and Rehabilitation, 97(10), e.108.

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Total=290Whites=261Blacks=29

Race and Service Utilization

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Disparity Factor 2 ‐ Residence

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The Impact of Rural Residence in America

• Many rural residents are self‐employed or engage in jobs that do not provide health insurance, leaving them with no access to regular healthcare.

• Life expectancy is lower in rural counties due to an inadequate number of healthcare providers.

• Healthcare delivery in rural areas is influenced by population density, the remoteness of these communities and regional cultural norms.

• Unique characteristics of rural communities can translate into rural‐urban differences in health, disease, and disease‐related outcomes

• Merchant J, Coussens C, Gibert D, eds. Rebuilding the Unity of Health and the Environment in Rural America. Washington, DC: The National Academies Press; 2006.

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Rural Residence in NC: Implications for Speech‐Language Pathology

• 88 of 100 counties in NC are rural

• Rural SLP service providers are limited due to high vacancy rates, high turnover rates and long delays in hiring SLPs in rural areas.

• NC has five SLP clinical training programs but SLPs tend to largely reside and provide care in urban areas.

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*Rural – population density of ≤ 250 people per square mile

Rural Residence and Tennessee

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• Objective: to use discharge‐level hospital inpatient data to examine the influence of patient residence (rural vs. urban) and race‐ethnicity on service utilization and cost of care among PWA.

• Administrative data from acute care hospitals in the state of North Carolina

• Participants: Individuals with post‐stroke aphasia

• Main Outcome Measures: length of stay, speech‐language pathology service utilization, costs of care

• Methods: 2011‐2012 Healthcare Cost and Utilization Project (HCUP) State Inpatient Database (SID) data were analyzed to examine the impact of rural/urban residence to lengths of stay (LOS), Speech‐Language Pathology (SLP) service utilization, as well as total inpatient and SLP service costs. These outcomes were further analyzed across both residence and racial groups (Non‐Hispanic White and Non‐Hispanic Black). Outcomes were analyzed using generalized linear models (GLM).

• Results: Both rural and urban Black PWA experienced longer average LOS after controlling for demographics, illness severity, and the hospital where they received care. Rural Blacks experienced longer LOS, received greater SLP services,and incurred greater average total hospital costs than their rural White counterparts after adjusting for differences in their demographics and stroke/illness severity. The differences were attenuated after controlling for the hospital where they received care.

• Conclusions: For PWA, race‐ethnicity has a larger impact on average total medical costs, SLP service utilization, and LOS than residence. It is unclear how and why Blacks with aphasia have greater service utilization and costs in acute care, yet their aphasia outcomes are worse. Future studies are required to explore potential factors such as quality of care.

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Hardy, R.Y., Lindrooth, R.C., Peach, R.K., & Ellis, C. (2018). Urban‐rural differences in service utilization and costs of care for racial‐ethnic groups hospitalized with post‐stroke aphasia. Archives of Physical Medicine and Rehabilitation, 100(2):254‐260.

Hardy, R.Y., Lindrooth, R.C., Peach, R.K., & Ellis, C. (2018). Urban‐rural differences in service utilization and costs of care for racial‐ethnic groups hospitalized with post‐stroke aphasia. Archives of Physical Medicine and Rehabilitation, 100(2):254‐260.

Addressing Disparities in the Field of SLP

Step 1 – Understand there is no easy solution

Copyright © 2014 American Medical Association. All rights reserved.

From: The Anatomy of Health Care in the United States JAMA. 2013;310(18):1947-1964.

Medicine’s Triangle of Conflicting Expectations

AND THERE ARE CONFLICTS IN GOALS, OBJECTIVES AND BELIEFS/ATTITUDES

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Step 2 – Understand we must think beyond culture competence

• Reducing health disparities and achieving equitable health care remains an important goal for the U.S. healthcare system. Cultural competence is widely seen as a foundational pillar for reducing disparities through culturally sensitive and unbiased quality care. Culturally competent care is defined as care that respects diversity in the patient population and cultural factors that can affect health and health care, such as language, communication styles, beliefs, attitudes, and behaviors.

• A lack of conceptual clarity around cultural competence persists in the field and the research community. There is confusion about what cultural competence means, and different ways in which it is conceptualized and operationalized. This confusion leads to disagreement regarding the topic areas and practices in which a provider should train to attain cultural competence.3 The populations to which the term cultural competence applies are also ill‐defined. Cultural competence is often seen as encompassing only racial and ethnic differences, omitting other marginalized population groups who are ethnically and racially similar to a provider but who are at risk for stigmatization or discrimination, are different in other identities, or have differences in healthcare needs that result in health disparities.

• The most popular and most well studied type of cultural competence intervention is cultural competency training for healthcare providers. Two general approaches have been used in creating educational interventions to address cultural competence: programs aimed at improving knowledge that is group‐specific, and programs that apply generic or universal models. Concerns have been raised about cultural competency programs that use a group‐specific approach to teach providers about the attitudes, values, and beliefs of a specific cultural group leading to stereotyping and oversimplifying the diversity within a particular priority group.4 The universal approach to training proposes that cultural competence can be taught through reflective awareness, empathy, active listening techniques, and the cognitive mechanisms contributing to cultural insensitivity or blindness, such as implicit biases or stereotype threats. Therefore, of interest is identifying the effect of varying types of cultural competence training on patient‐level outcomes.

Available at: https://effectivehealthcare.ahrq.gov/sites/default/files/pdf/cultural‐competence_research.pdf

Improving Cultural Competence to Reduce Health Disparities (AHRQ 2016)• Objective ‐ To examine existing system‐, clinic‐, provider‐, and individual‐level interventions to improve culturally appropriate health care for people with disabilities; lesbian, gay, bisexual, and transgender (LGBT) populations; and racial/ethnic minority populations.

• Methods ‐ Ovid MEDLINE®, PsycINFO®, Ovid Embase®, and the Cochrane EPOC (Effective Practice and Organisation of Care) register; hand searches of references of relevant studies.

• Results – Over 37,000 nonduplicated English‐language citations were reviewed; 56 unique studies were identified as of June 2015: 20 randomized controlled trials (RCTs) and 5 observational studies for individuals with disabilities; 5 RCTs (6 manuscripts) and 6 observational studies for LGBT populations; and 14 RCTs (15 manuscripts), 4 observational studies, and 2 systematic reviews for members of racial and ethnic minorities. Interventions fell into four broad categories: (1) provider trainings and education; (2) interventions providing alteration of an established protocol, or the delivery of an established protocol, to meet the needs of a target population; (3) interventions prompting patients to interact with the formal health care system or health care providers; and (4) interventions aimed at providing culturally competent care at the point of service.

• ……………………Educational programs and trainings to improve professional students' and providers' cultural competence behavior are the most prevalent type of cultural competence intervention.


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Improving Cultural Competence to Reduce Health Disparities (AHRQ 2016)• Conclusions

• None of the included studies measured the effect of cultural competence interventions on health care disparities.

• Most of the training interventions measured changes in professional attitudes toward the population of interest but did not measure the downstream effect of changing provider beliefs on the care delivered to patients. Interventions that altered existing protocols, empowered patients to interact with the formal health care system, or prompted provider behavior at the point of care were more likely to measure patient‐centered outcomes. The medium or high risk of bias of the included studies, the heterogeneity of populations, and the lack of measurement consensus prohibited pooling estimates or commenting about efficacy in a meaningful or responsible way. The term "cultural competence" is not well defined for the LGBT and disability populations, and is often conflated with patient‐centered or individualized care. There are many gaps in the literature; many large subpopulations are not represented.


ASHA‐Cultural Competence• Cultural competence involves understanding and appropriately responding to the unique combination of cultural variables and the full range of dimensions of diversity that the professional and client/patient/family bring to interactions.

• "Culture and cultural diversity can incorporate a variety of factors, including but not limited to age, disability, ethnicity, gender identity (encompasses gender expression), national origin (encompasses related aspects e.g., ancestry, culture, language, dialect, citizenship, and immigration status), race, religion, sex, sexual orientation, and veteran status. Linguistic diversity can accompany cultural diversity." (ASHA, 2017)

Available at:https://www.asha.org/PRPSpecificTopic.aspx?folderid=8589935230&section=Overview

ASHA‐Cultural Competence• Developing cultural competence is a dynamic and complex process requiring ongoing self‐assessment and continuous expansion of one's cultural knowledge. It evolves over time, beginning with an understanding of one's own culture, continuing through interactions with individuals from various cultures, and extending through one's own lifelong learning.

• Clinical approaches—such as interview style, assessment tools, and therapeutic techniques—that are appropriate for one individual may not be appropriate for another. It is important to recognize that the unique influence of an individual's cultural and linguistic background may change over time and according to circumstance (e.g., interactions in the workplace, with authority figures, within a social context), necessitating adjustments in clinical approaches.

Available at:https://www.asha.org/PRPSpecificTopic.aspx?folderid=8589935230&section=Overview

ASHA‐Cultural Competence

• Developing cultural competence is an ongoing process. It involves self‐awareness and cultural humility, and it may require audiologists and SLPs to recognize what they do not know about the languages and cultures of the individuals, families, and communities they serve. As a result, they may seek out culture‐specific knowledge and experience in these areas. The culturally competent clinician has the ability to

• simultaneously appreciate cultural patterns and individual variation;• engage in cultural self‐scrutiny to assess cultural biases and improve self‐awareness;• utilize evidence‐based practice to include client/patient/family characteristics, clinician expertise, and empirical evidence in clinical decisions; and

• understand the communication contexts and needs of clients/patients and their families by considering communication disorders within a social context (Kohnert, 2008).

• Developing cultural competence includes• self‐assessment, including a review of the clinician's personal history, values, beliefs, and biases;

• an understanding of how these factors might influence perceptions of communication abilities and patterns; and

• an understanding of how personal perceptions might influence interactions and service delivery to a variety of clients/patients/families.

Available at: https://www.asha.org/PRPSpecificTopic.aspx?folderid=8589935230&section=Key_Issues

Step 3 – Understand the complexity of issuesbeyond cultural competence

Cultural Competence +………………..

• Understanding upstream effects

• Understanding how families, social networks and other support impact outcomes (positively and negatively)

• Understanding the reality of evidence‐based practice and the impact on clinical outcomes

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Towards an Understanding of Racial Differences in Post‐stroke Disability

Towards an Understanding of Racial Differences in Post‐stroke Disability

Stroke‐related “upstream factors” associated with racial differences in stroke outcomes that potentially influence aphasia outcomes

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Disease severityDisease duration

Disease comorbidity

Ellis, C., Peach, R.K., & Briley (Forthcoming). Race and Outcomes: Implications for Speech‐Language Pathologists Managing Adults with Acquired Aphasia. In G. Wallace (Ed.), Cultural competence in neurorehabilitation: A community based rehabilitation approach for speech‐language pathologists. San Diego, CA: Plural Publishing, Inc.

The Impact of Belief and Attitudes about Healthcare use

It’s not always cost of care

• Disparities in access and utilization also occur across many dimensions. Living in rural areas, lack of usual care, etc.

Taken from: http://interactioninstitute.org/illustrating‐equality‐vs‐equity/

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• Social networks, or the structure and “connectedness” of interpersonal relationships associated with an individual, are known to influence neurological outcomes for conditions such asstroke.

• Evidence from animal research has shown that social environments are critical to recovery from ischemic stroke.

• Social networks change frequently after stroke leaving PWA in isolation and feeling disconnected from society due to a combination of communication issues and general disability.

• Friendships existing at the onset of stroke and aphasia are critical to the lives and recovery of PWA

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Evidence‐Based Practice and Aphasia

Commonly Utilized “Disconnected” Approach

Revised Approach Bringing Together Four Key Elements

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Scientific Evidence

Clinical Expertise

Patient Values & Preferences

Upstream

Disease Effects

Scientific Evidence

Clinical Expertise

Evidence‐

Based Practice

Evidence‐

Based Practice

Conclusions

• Disparities in speech‐language‐cognitive outcomes are multidimensional

• Patient/family• Providers• Systems

• Cultural competence is just one aspect of complex plan that will be needed to reduce disparities in speech‐language cognitive outcomes

• Systematic and programmatic research related to disparities is urgently needed to identify the best strategies to reduce the disparity gap

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Conclusions

• There are no simple solutions

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Acknowledgements

• Richard K. Peach, PhD, CCC‐SLP, BC‐ANCDS• Rush University, Chicago, IL

• Richard C. Lindrooth, PhD• Univ of CO‐Denver, Aurora, CO

• Rose Y. Hardy, PhD• Univ of Co‐Denver, Aurora, CO

• Patrick Briley, PhD CCC‐SLP• East Carolina University

• Rhiannon Phillips, MS CCC‐SLP• East Carolina University

• Agency for Healthcare Quality and Research 1 R03 HS025043‐01A1 Speech Telerehabilitation after Stroke: Proof of Concept and Feasibility

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Works Cited• Ellis, C., Peach, R.K., & Briley (Forthcoming). Race and Outcomes: Implications for Speech‐Language Pathologists Managing Adults

with Acquired Aphasia. In G. Wallace (Ed.), Cultural competence in neurorehabilitation: A community based rehabilitation approach for speech‐language pathologists. San Diego, CA: Plural Publishing, Inc.

• Ellis, C., Phillips, R. Hill, T. & Briley, P.M.* (2019). Social network structure in young stroke survivors with aphasia: A case series report. Seminars in Speech and Language, 40(5), 359‐369.

• Ellis, C. (2018). African Americans and Aphasia: A 25 year review. Journal of the National Black Association for Speech‐Language and Hearing, 13(1), 31‐42.

• Ellis, C., Hardy, R.Y.*, Lindrooth, R.C. & Peach, R.K. (2018). Rate of aphasia among stroke patients discharged from hospitals in the United States. Aphasiology, 32(9), 1075‐1086.

• Ellis, C., Peach, R.K., Hardy, R.Y. & Lindrooth, R.C. (2017). The Influence of race on SLP utilization and costs among persons with aphasia. Aphasiology, 31(12), 1433‐1440.

• Ellis, C. & Peach, R.K. (2017). Life Satisfaction and Aphasia: An integrative review with recommendations for future research. Aphasiology, 31(6), 631‐642.

• Ellis, C. & Peach R.K. (2017). Racial‐ethnic differences in word fluency and auditory comprehension among persons with post‐stroke aphasia. Archives of Physical Medicine and Rehabilitation, 98(4):681‐686.

• Ellis, C., Hardy, R.Y., Lindrooth, R.C. & Peach, R.K. (2016). Racial‐ethnic differences in Speech‐Language Pathology utilization and cost among persons with aphasia. Archives of Physical Medicine and Rehabilitation, 97(10), e.94.

• Ellis, C. & Peach, R.K. (2016). Racial‐ethnic differences in the Boston Naming Test among persons with aphasia: Disparity or diagnostic inaccuracy. Archives of Physical Medicine and Rehabilitation, 97(10), e.108.

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Works Cited‐cont.• Ellis, C., Simpson, A.N., Bonilha, H.S., Mauldin, P.D., & Simpson, K.N. (2012). The one‐year attributable cost of post‐stroke

aphasia. Stroke, 43(5):1429‐1431.

• Griffith, K., Evans, L. & Bar, J. (2017). The affordable care act reduced socioeconomic disparities in health care access. Health Affairs, 36(8), 1503‐1510.

• Hardy, R.Y., Lindrooth, R.C., Peach, R.K., & Ellis, C. (2018). Urban‐rural differences in service utilization and costs of care for racial‐ethnic groups hospitalized with post‐stroke aphasia. Archives of Physical Medicine and Rehabilitation, 100(2):254‐260.

• Institute of Medicine. 2003. Unequal treatment: Confronting racial and ethnic disparities in health care. Washington, DC: The National Academies Press.

• Magwood, G.S., Burns, S.P., Jenkins, C., Nichols, M., Woodbury, M., Adams, R.J. & Ellis, C. (2019). Barriers and facilitators ofstroke recovery: Perspectives from African Americans with stroke, caregivers, and healthcare professionals. Journal of Stroke and Cerebrovascular Diseases, 28, 9, 2506‐2516.

• McDonough J., Hames, C. Stulb, S. & Garrison, G. (1963). Cardiovascular disease field study in Evans County, Ga. Public Health Reports. Public Health Reports, 78(12), pp. 1051‐1059.

• Moses, H., Matheson, D., Dorsey, R., George, B., Sadoff, D., Yoshimura, S. The anatomy of health care in the United States. JAMA. 2013;310(18):1947‐1964.

• Plowman, E., Hentz, B., & Ellis, C. (2012). Post‐stroke aphasia prognosis: A review of patient‐related and stroke‐related factors. Journal of Evaluation in Clinical Practice, 18, (3), 689‐694.

• Simmons‐Mackie, N. (2018). Aphasia in North America: Frequency, demographics, impact of aphasia, communication access, services and service gaps. Available at: https://www.aphasiaaccess.org/state‐of‐aphasia.

• Skolarus, L & Burke, J. (2015). Towards an understanding of racial differences in post‐stroke disability. Curr Epidemiol Rep, 2:191–196

• The Patient Protection and Affordable Care Act (PPACA). Pub. L. No. 111‐148, 124 Stat. 119., 2010.

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