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Keywords:

  • disabled persons;
  • healthcare disparities;
  • Patient Protection and Affordable Care Act

Abstract

  1. Top of page
  2. Abstract
  3. Challenges with Developing Disability Status Questions
  4. Challenges with Administering Disability Status Questions
  5. Research Recommendations
  6. Conclusions
  7. Acknowledgments
  8. Conflict of Interest
  9. References
  10. Objectives
  11. Multiple Choice Questions
  12. Biographies

Individuals with disabilities are at a greater risk of experiencing healthcare disparities. To address these disparities, healthcare organizations (HCOs) need to consistently and accurately document patients’ disability status. Unfortunately, the evidence base does not yet exist to guide HCOs in determining what data to collect or the best method to collect the data. The authors propose a research agenda for developing and administering disability status questions. To determine what data to collect, researchers need to addresses the following challenges: disability is a complex concept, a wide range of types of disabilities exists, severity levels of disability can differ and, finally, patients might use assistive devices or aids to mitigate or ameliorate their disability. Additionally, research is needed to determine the frequency with which to administer questions due to the dynamic nature of disability, and to develop protocols for assessing the most appropriate person to answer disability status questions. Targeted research will lead to disability status questions that accurately and consistently identify individuals with disabilities and produce actionable data that HCOs can use to detect and address potential disparities in care.

Fifty-four million people, or 19% of the U.S. population, live with a disability (Shapiro, 1994; U.S. Census Bureau, 2010) with the number increasing, in part because of the aging population (Institute of Medicine, 2006). Although the Institute of Medicine's report Crossing the Quality Chasm states that most Americans will have a disability at some point in their lives (Institute of Medicine, 2001), to date, little attention has been paid to improving the quality of healthcare delivered to people with disabilities (Iezzoni, 2011). A growing body of literature demonstrates that people with disabilities are at greater risk for experiencing healthcare disparities and differences in diagnosis, treatments, and health outcomes as compared to people without disabilities (Chevarley, Thierry, Gill, Ryerson, & Nosek, 2006; Havercamp, Scandlin, & Roth, 2004; Iezzoni, 2011; Iezzoni, McCarthy, Davis, & Siebens, 2000; Lawthers, Pransky, Peterson, & Himmelstein, 2003; Lewis, Lewis, Leake, King, & Lindemann, 2002; Smeltzer, 2006; Smith, 2008; Wisdom et al., 2010).

To date, a major problem has been the identification of patients with disabilities (Iezzoni & Freedman, 2008) and the disparities they experience in healthcare. The Joint Commission's report Advancing Effective Communication, Cultural Competence, and Patient- and Family- Centered Care: A Roadmap for Hospitals has provided some guidance in documenting disability, although this report is limited to hospitals and focuses only on select disabilities (The Joint Commission, 2010). The report explicitly recommends that hospitals document the following characteristics of the populations they serve: race, ethnicity, primary language, and patients’ communication, mobility, and health literacy needs.

The Patient Protection and Affordable Care Act (ACA) outlines the first policy for the documentation of disabilities in the healthcare system for the purpose of detecting disparities (Dorsey & Graham, 2011). Section 4302, entitled “Understanding Health Disparities: Data Collection and Analysis,” now provides standards for healthcare organizations (HCOs) to document specific demographic characteristics of patients, including race, ethnicity, language, and disability status for the purpose of identifying populations at risk for experiencing disparities in care (Dorsey & Graham, 2011; U.S. Department of Health and Human Services, 2011). Following the passage of the ACA, the Department of Health and Human Services published six required disability status questions, which are derived from the American Community Survey (ACS; U.S. Department of Health and Human Services, 2011). See Table 1 for a list of the questions. Although the U.S. Census Bureau conducted rigorous testing to create the ACS questions, they designed the questions to fulfill agency needs and to provide information to the government for administering services to individuals with disabilities (U.S. Census Bureau, 2007). The questions were not designed to gather disability data within the healthcare system. Therefore, it is questionable whether the questions can accurately identify people with disabilities within the healthcare system and create actionable data that HCOs can use to target disparities.

Table 1. Section 4302 Data Standard Questions for Disability Status
1. Are you deaf or do you have serious difficulty hearing?
2. Are you blind or do you have serious difficulty seeing, even when wearing glasses?
3. Because of a physical, mental, or emotional condition, do you have serious difficulty concentrating, remembering, or making decisions?
4. Do you have serious difficulty walking or climbing stairs?
5. Do you have difficulty dressing or bathing?
6. Because of a physical, mental, or emotional condition, do you have difficulty doing errands alone such as visiting a doctor's office or shopping?

Although the Joint Commission provides guidance for hospitals in collecting disability status information from patients and the ACA provides the policy foundation for doing so, the evidence base does not exist yet for which data to collect and how best to collect disability status information for the purposes of improving quality and reducing disparities for individuals with disabilities. Current methods for collecting data about race, ethnicity, and language in HCOs may prove applicable in terms of where and how disability information should be collected. However, the type of information and method for collecting disability status may be unique, and requires targeted exploration. This paper outlines the challenges and potential research priorities for developing and administering disability status questions that will generate actionable data for HCOs to address healthcare disparities.

Challenges with Developing Disability Status Questions

  1. Top of page
  2. Abstract
  3. Challenges with Developing Disability Status Questions
  4. Challenges with Administering Disability Status Questions
  5. Research Recommendations
  6. Conclusions
  7. Acknowledgments
  8. Conflict of Interest
  9. References
  10. Objectives
  11. Multiple Choice Questions
  12. Biographies

Definition of Disability

Disability is a complex concept that is difficult to define. The authors of the ACS questions report using the World Health Organization's framework of disability: the International Classification of Functioning, Disability and Health (ICF; U.S. Census Bureau, 2007). This framework is becoming widely used in the United States and is the recommended disability framework of the IOM (Institute of Medicine, 2006; Roush & Sharby, 2011). The ICF is a multilevel, complex framework that takes into account the individual and the environment in which he or she lives (World Health Organization, 2001). In this framework, disability is viewed as a result of impairments in body functions and structures, and limitations in activities and participation, with environmental and personal factors influencing the impairments and limitations (Roush & Sharby, 2011; World Health Organization, 2001).

One of the most important characteristics of the ICF is its comprehensiveness and inclusion of multiple factors that contribute to disability (Iezzoni & Freedman, 2008). Despite its comprehensiveness, the authors of the ACS questions focused only on a few dimensions of the ICF. Specifically, the ACS questions focus on impairments and limitations and do not take into account environmental or personal factors that are represented in the ICF. This is potentially problematic for two reasons. First, by excluding personal and environmental factors, the questions might miss key components of a patient's disability. Many of the questions ask about patients’ abilities to perform certain tasks, such as dressing or bathing but ignore other factors that could impact the disability. For example, two people with difficulty bathing (limitations) could have significantly different disability experiences based on the presence of an accessible bathroom at home (environmental factors). These two people, while having the same limitation, have very different environments that greatly affect their disability, and potentially their health. Second, focusing on personal characteristics of a disability, what a patient can and cannot do, potentially produces limited actionable data for HCOs to use to address disparities. Disparities in care have been defined as differences not only at the patient level, but also at the provider and system level, which results in differential treatment (Kilbourne, Switzer, Hyman, Crowley-Matoka, & Fine, 2006). If questions only inquire about a patient's limitations, the questions then potentially will only produce actionable data for person-level interventions, not provider or system-level interventions that address disparities.

Diverseness of Disability

People with disabilities are a diverse population and it is difficult to fully capture their experiences in the healthcare system. The ACS questions are quite limited and target only a few categories of disabilities and exclude categories such as communication and learning disabilities. Patients with communication or learning barriers are important to identify, because they may have difficulty with doctor–patient communication or health literacy, two important factors shown to affect patients’ quality of care and contribute to disparities (Institute of Medicine (U.S.) Forum on the Science of Health Care Quality Improvement and Implementation, Institute of Medicine (U.S.) Roundtable on Health Disparities, & Institute of Medicine (U.S.) Roundtable on Health Literacy, 2009; Timmins, 2002).

The ACS questions focus on different functions and activities (climbing stairs or doing errands), which do not necessarily correspond to useable disability categories. For example, no one would refer to a population of people as “people with a ‘doing errands’ disability.” Instead one might categorize a patient as having a mobility or cognitive disability that results in difficulty doing errands. It is unclear whether defining a population by the ability to conduct specific functions or activities will yield actionable data for HCOs to use to target quality improvement interventions to decrease disparities.

Different Levels of Disabilities

Defining disability has the added complexity that severity levels of disability can vary and can significantly affect how HCOs’ staffs provide high quality of care to patients. For example, hearing disabilities can range from patients who are completely deaf and require a sign language interpreter for effective communication to patients with moderate hearing losses and simply need people to speak loudly. The ACS questions do not gather information about different severity levels but probe only about “serious difficulty” with activities. It is unknown whether this is sufficient or if patients with “less serious” disabilities experience disparities and could benefit from targeted quality improvement interventions. Furthermore, the term “serious” could be subjective, and it is unknown if this could affect how patients answer the disability status questions.

Use of Assistive Devices or Aids

Finally, to further complicate defining disability, many patients use assistive devices or aids such as canes, hearing aids, or glasses to mitigate the severity of, or even eliminate, their disability. Some patients might not consider themselves disabled when using an assistive device. For example, someone who uses a cane to ambulate up and down stairs might not consider him/herself as having a serious mobility disability because he/she is independent when using the cane. Only one of the ACS questions, the visual disability question, asks responders to take into account using an aid when answering the question. Consequently, the ACS questions are likely to underestimate the number of disabled patients who use assistive devices or aids.

Challenges with Administering Disability Status Questions

  1. Top of page
  2. Abstract
  3. Challenges with Developing Disability Status Questions
  4. Challenges with Administering Disability Status Questions
  5. Research Recommendations
  6. Conclusions
  7. Acknowledgments
  8. Conflict of Interest
  9. References
  10. Objectives
  11. Multiple Choice Questions
  12. Biographies

Administering disability status questions also presents with unique complexities. First, disability is not always a static condition; it can increase, as with a progressive disorder, or decrease, as when a patient recovers from an injury. Also, not all disabilities are permanent. Capturing patients’ disability status at one point in time may be inadequate for detecting disparities at the HCO level. Tracking disability status across time is important in measuring the effectiveness of quality improvement interventions. Although no established standards exist for the frequency with which to document disability status, researchers and the authors of the Joint Commission's A Roadmap for Hospitals report recommend documenting disability at multiple points during a patient's hospital stay (Patak et al., 2009; The Joint Commission, 2010). These recommendations do not specify the frequency and focus only on the inpatient setting.

Asking staff to ask disability status questions is fraught with difficulty. For example, staff may have difficulty understanding what patients with communication disabilities are saying, may be uncertain that patients with cognitive disabilities understand the questions, or feel uncomfortable asking potentially sensitive questions (Martin, Rowell, Reid, Marks, & Reddihough, 2005; Zivianni, Lennox, Allison, Lyons, & Del Mar, 2004). Relying on staff observation could result in underreporting of patients with invisible disabilities, such as learning or emotional disabilities. Conversely, a common complaint of patients with physical or communication disabilities is that they are often assumed to also have cognitive disabilities (Morris, Dudgeon, & Yorkston, 2013; Nordehn, Meredith, & Bye, 2006). These assumptions could lead to overreporting of certain disabilities. Data collection can also be complicated by the presence of support persons, including family members, friends, paid aides, and even taxi drivers, who accompany patients with disabilities to their medical appointments. Staff often direct questions toward the support person (Morris et al., 2013; Nordehn et al., 2006; Zivianni et al., 2004). It might not be appropriate for the third person to answer questions about the patient's disability status.

Research Recommendations

  1. Top of page
  2. Abstract
  3. Challenges with Developing Disability Status Questions
  4. Challenges with Administering Disability Status Questions
  5. Research Recommendations
  6. Conclusions
  7. Acknowledgments
  8. Conflict of Interest
  9. References
  10. Objectives
  11. Multiple Choice Questions
  12. Biographies

The ACA should be applauded for recognizing the need for documenting patients’ disability status for the purpose of detecting potential disparities at the HCO level. Unfortunately, the current questions overlook the diversity and breadth of the types and levels of disability, and potentially misrepresent the number of patients with disabilities and the disparities they experience. Additionally, the ACA does not provide standards or recommendations for administering the questions.

To date, no research has explored appropriate and concise disability status questions that produce actionable data for HCOs to use in the identification of healthcare disparities. To address the unique challenges in creating disability questions, we recommend targeted research in the following areas: (1) explore how to incorporate all levels of the ICF model, including environmental or personal factors that could affect disability disparities. (2) Develop questions that translate into categories that capture the range of disabilities and produce actionable data that HCOs can use to direct quality improvements initiatives. (3) Determine if it is necessary to capture other severity levels of disability other than “serious” levels and if a more objective criteria is needed. (4) Determine whether it is important to inquire about assistive devices and aids for all or only select disability status questions.

Iezzoni and Freedman (2008) argue that defining disability is critical as “Definitions implicitly connote goals, which in turn suggest potential solutions and targets for action.” Disability definitions and categories designed with the goal of identifying possible healthcare disparities will lead to quality improvement interventions. Current disability questionnaires, such as the ICF Checklist or Activities of Daily Living questionnaires, are not only lengthy but designed for clinicians to use to inform rehabilitation services (Johnson, Barion, Rademaker, Rehkemper, & Weintraub, 2004; Katz, Ford, Moskowitz, Jackson, & Jaffe, 1963; World Health Organization, 2003). Although these questionnaires can provide a starting point, incorporating a broader perspective, one in which environmental and social factors are included, will be more successful in identifying potential healthcare disparities. Additionally, research should try to elucidate which disability questions are most meaningful and actionable with regard to improving quality and reducing disparities for individuals with disabilities, to avoid undue data collection burden on HCOs and patients and families they serve. Individuals with disabilities, their families, and disability advocacy groups need to be involved in the conception and development of the questions as their insight is critical.

Once questions are developed, research is needed to determine the best and most efficient methods for administering the questions so there is consistent and accurate data collection. Outlined in this paper are two potential areas that require research. First, research is needed to determine frequency that staff should ask disability status questions. Due to the possibility of a changing disability, it is likely that regularly asking patients in both the outpatient and inpatient setting about their disability status will yield the most informative data. This will need to be weighed against the burden of asking disability status questions repeatedly. Additionally, if disability status is recorded repeatedly, research is needed to explore how to capture and track disability status data across time within medical record systems that is meaningful for HCOs. Second, research is needed to develop evidence-based methods and policies that ensure consistent documentation, including staff directly asking patients disability status questions and avoiding relying on observation. One area of possible exploration is the development scripts for the staff so that all disability status questions are asked in the same manner across all patients. Included in such scripts could be protocols for when patients have difficulty answering the questions.

Conclusions

  1. Top of page
  2. Abstract
  3. Challenges with Developing Disability Status Questions
  4. Challenges with Administering Disability Status Questions
  5. Research Recommendations
  6. Conclusions
  7. Acknowledgments
  8. Conflict of Interest
  9. References
  10. Objectives
  11. Multiple Choice Questions
  12. Biographies

Investment is needed in research that examines the challenges in developing and administering disability status questions. Targeted research addressing these challenges will lead to disability status questions that accurately identify people with disabilities and produce data that HCOs can use to detect disparities and improve care. Detecting these disparities will allow HCOs to direct quality improvement initiatives toward the disability disparities that may exist within their organizations.

Acknowledgments

  1. Top of page
  2. Abstract
  3. Challenges with Developing Disability Status Questions
  4. Challenges with Administering Disability Status Questions
  5. Research Recommendations
  6. Conclusions
  7. Acknowledgments
  8. Conflict of Interest
  9. References
  10. Objectives
  11. Multiple Choice Questions
  12. Biographies

The authors would like to thank Dr. Kristi Kirschner for her guidance and assistance throughout the project. Dr. Morris was supported on a Department of Education NIDRR ARRT grant (Heinemann: grant number H133P080006) while this was being written.

References

  1. Top of page
  2. Abstract
  3. Challenges with Developing Disability Status Questions
  4. Challenges with Administering Disability Status Questions
  5. Research Recommendations
  6. Conclusions
  7. Acknowledgments
  8. Conflict of Interest
  9. References
  10. Objectives
  11. Multiple Choice Questions
  12. Biographies
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Journal for Healthcare Quality is pleased to offer the opportunity to earn continuing education (CE) credit to those who read this article and take the online posttest at http://www.nahq.org/education/content/jhq-ce.html. This continuing education offering, JHQ 247, will provide 1 contact hour to those who complete it appropriately.

Core CPHQ Examination Content Area

III. Performance Measurement & Improvement

Objectives

  1. Top of page
  2. Abstract
  3. Challenges with Developing Disability Status Questions
  4. Challenges with Administering Disability Status Questions
  5. Research Recommendations
  6. Conclusions
  7. Acknowledgments
  8. Conflict of Interest
  9. References
  10. Objectives
  11. Multiple Choice Questions
  12. Biographies
  • Describe barriers and challenges with identifying and administering disability status questions.
  • Describe the importance of defining disability in a disparities context.
  • Describe the Joint Commission and Affordable Care Act.s recommendations for healthcare organizations to document patients. disability status.

Multiple Choice Questions

  1. Top of page
  2. Abstract
  3. Challenges with Developing Disability Status Questions
  4. Challenges with Administering Disability Status Questions
  5. Research Recommendations
  6. Conclusions
  7. Acknowledgments
  8. Conflict of Interest
  9. References
  10. Objectives
  11. Multiple Choice Questions
  12. Biographies
  1. Policy recommendations and guidance for documenting patients' disability status include:
    1. Joint Commission's A Roadmap for Hospitals report and the Affordable Care Act.
    2. Americans with Disability Act and the Joint Commission's A Roadmap for Hospitals report.
    3. Americans with Disability Act and the Affordable Care Act.
    4. Affordable Care Act and Institute of Medicine's Crossing the Quality Chasm report.
  2. The purpose of Section 4302 is to:
    1. Develop interventions that improve the quality of care for at risk populations.
    2. Identify populations at risk for experiencing disparities in care.
    3. Create electronic health record standards for documenting disparities in care.
    4. Provide recommendations for how to best document healthcare disparities.
  3. The Roadmap for Hospitals report outlines recommendations for:
    1. Hospitals to document patients' mobility and communication needs.
    2. The frequency with which medical staff should document patients' mobility needs.
    3. Which staff members should ask patients about health literacy needs.
    4. Outpatient medical clinics to document patients' mobility needs.
  4. The disability status questions that were recommended by Department Health and Human Services' were:
    1. Created specifically for the Affordable Care Act.
    2. Designed to be used by healthcare organizations.
    3. Based on the American Community Survey.
    4. Designed to identify healthcare disparities.
  5. The following are all true about the International Classification of Functioning, Disability and Health (ICF) except for:
    1. The ICF is a multilevel, complex framework that was used in creating the American Community Survey disability questions.
    2. According to the ICF, disability as a result of impairments and limitations that are influenced by environmental and personal factors.
    3. In the United States the ICF is widely used and is the recommended disability framework by the Institute of Medicine.
    4. The ACS disability status questions capture all levels and areas of the ICF.
  6. Challenges with defining disability include all of the following except for:
    1. Differing levels of severity.
    2. Patients who use assistive devices.
    3. Diverseness of disability.
    4. Scarcity of disability in the population.
  7. Challenges with administering disability status questions include:
    1. Possibility of patients' disability status changing over time.
    2. Lack of qualified staff to assess patients' disability status.
    3. Implementing the extensive standards provided by the ACA.
    4. Lack of available assistive devices and aids.
  8. The Joint Commission's A Roadmap for Hospitals report recommended the following characteristics of patients be documented except for:
    1. Race/ethnicity.
    2. Mobility disability needs.
    3. Visual disability needs.
    4. Primary language.
  9. Questions that ask about patients' functional limitations:
    1. Take into account the patients' personal factors.
    2. Provides a comprehensive perspective of patients' disability.
    3. Potentially produce limited actionable data for system-level disparities.
    4. Capture societal level factors that affect patients' disability.
  10. Future research should do all the follow except:
    1. Include persons with disabilities in the development disability status questions.
    2. Identify which disability status questions will produce actionable data for HCOs but minimize staff burden.
    3. Explore how to capture and track disability status across time for medical record systems.
    4. Identify disability status questions that capture only patients with serious disabilities.

Biographies

  1. Top of page
  2. Abstract
  3. Challenges with Developing Disability Status Questions
  4. Challenges with Administering Disability Status Questions
  5. Research Recommendations
  6. Conclusions
  7. Acknowledgments
  8. Conflict of Interest
  9. References
  10. Objectives
  11. Multiple Choice Questions
  12. Biographies
  • Megan Morris, PhD, MPH, is a postdoctoral fellow at the Center for Healthcare Studies at Northwestern University, Chicago, IL. Dr. Morris is a speech-language pathologist and has a doctoral degree in rehabilitation sciences.

  • Romana Hasnain-Wynia, PhD, is the Director and Scientific Program Leader for Addressing Health Disparities at the Patient-Centered Outcomes Research Institute (PCORI) in Washington, DC. The work on this manuscript was conducted while Dr. Hasnain-Wynia was an associate professor and Director, Center for Health Care Equity at Northwestern University, Feinberg School of Medicine.