Documentation of Disability Status and Accommodation Needs in the Electronic Health Record: A Qualitative Study of Health Care Organizations' Current Practices.

BACKGROUND: This qualitative study aimed to understand how early adopting health care organizations (HCOs) implement the documentation of patients' disability status and accommodation needs in the electronic health record (EHR). METHODS: The authors conducted qualitative interviews with HCOs that had active or past initiatives to implement systematic collection of disability status in the EHR. The interviews elicited participants' current experiences, desired features of a standard EHR build, and challenges and successes. A team-based analysis approach was used to review and summarize quotations to identify themes and categorize text that exemplified identified themes. RESULTS: Themes identified from the interviews included "why" organizations collected disability status; of "what" their EHR build consisted, including who collected, how often data were collected, and what data were collected; and "how" organizations were implementing systematic collection. The main purpose for collection of disability status and accommodation needs was to prepare for patients with disabilities. Due to this priority, participants believed collection should (1) occur prior to patients' clinical encounters, (2) be conducted regularly, (3) use standardized language, and (4) be available in a highly visible location in the EHR. Leadership support to integrate collection into existing workflows was essential for success. CONCLUSION: Patients with disabilities experience significant disparities in the receipt of equitable health care services. To provide equitable care, HCOs need to systematically collect disability status and accommodation needs in the EHR to ensure that they are prepared to provide equitable care to all patients with disabilities.

Preferred Communication Strategies for People with Communication Disabilities in Health Care Encounters: a Qualitative Study.

BACKGROUND: People with communication disabilities (CDs), which includes disabilities in speech, language, voice and/or hearing, experience health and healthcare disparities. A barrier to accessing high-quality, equitable care is the lack of effective communication between patients and their providers. OBJECTIVE: In designing a patient-prompted tool to facilitate communication, we analyzed qualitative feedback on communication strategies and the experience of people with CDs, caregivers, and providers in healthcare encounters. We aimed to describe communication strategies that patients with CDs find most useful and optimize a tool for patients to share their communication strategy preferences during clinical encounters. While patient-provider communication is paramount in every interaction, we aimed to highlight the intricacies of optimizing communication for this population. DESIGN: We performed a qualitative study utilizing focus groups and interviews with patients with CDs, their caregivers, and healthcare providers. PARTICIPANTS: A total of 46 individuals participated in focus groups or interviews; 26 participants self-reported a CD, nine were caregivers, and 11 were providers. Participants represented diverse types of CDs, including stuttering, aphasia, hearing loss, and people with autism or cerebral palsy who use assistive technology to communicate. APPROACH: Analysis of qualitative interview and focus group data was guided by a qualitative content analysis approach. KEY RESULTS: We identified three themes: (1) While communication strategies should be individualized, participants agreed upon a consolidated list of best strategies and accommodations. We used this consolidated list to finalize tool development. (2) Patients and providers preferred disclosure of the CD and desired communication strategies before the appointment. (3) Providers often do not use communication strategies and accommodations during clinical encounters. CONCLUSIONS: For patients with CDs, it is critical to acknowledge and document the CD and individualize communication strategies during healthcare visits to facilitate communication. Studies are needed to evaluate whether improved communication strategy usage leads to improved health outcomes for this population.

A coordinated approach for managing polypharmacy among children with medical complexity: rationale and design of the Pediatric Medication Therapy Management (pMTM) randomized controlled trial.

BACKGROUND: Children with medical complexity (CMC) often rely upon the use of multiple medications to sustain quality of life and control substantial symptom burden. Pediatric polypharmacy (≥ 5 concurrent medications) is prevalent and increases the risk of medication-related problems (MRPs). Although MRPs are associated with pediatric morbidity and healthcare utilization, polypharmacy is infrequently assessed during routine clinical care for CMC. The aim of this randomized controlled trial is to determine if a structured pharmacist-led Pediatric Medication Therapy Management (pMTM) intervention reduces MRP counts, as well as the secondary outcomes of symptom burden and acute healthcare utilization. METHODS: This is a hybrid type 2 randomized controlled trial assessing the effectiveness of pMTM compared to usual care in a large, patient-centered medical home for CMC. Eligible patients include all children ages 2-18 years old, with ≥ 1 complex chronic condition, and with ≥ 5 active medications, as well as their English-speaking primary caregivers. Child participants and their primary parental caregivers will be randomized to pMTM or usual care before a non-acute primary care visit and followed for 90 days. Using generalized linear models, the overall effectiveness of the intervention will be evaluated using total MRP counts at 90 days following pMTM intervention or usual care visit. Following attrition, a total of 296 CMC will contribute measurements at 90 days, which provides > 90% power to detect a clinically significant 1.0 reduction in total MRPs with an alpha level of 0.05. Secondary outcomes include Parent-Reported Outcomes of Symptoms (PRO-Sx) symptom burden scores and acute healthcare visit counts. Program replication costs will be assessed using time-driven activity-based scoring. DISCUSSION: This pMTM trial aims to test hypotheses that a patient-centered medication optimization intervention delivered by pediatric pharmacists will result in lower MRP counts, stable or improved symptom burdens, and fewer cumulative acute healthcare encounters at 90 days following pMTM compared to usual care. The results of this trial will be used to quantify medication-related outcomes, safety, and value for a high-utilization group of CMC, and outcomes may elucidate the role of integrated pharmacist services as a key component of outpatient complex care programs for this priority pediatric population. TRIAL REGISTRATION: This trial was prospectively registered at clinicaltrials.gov (NCT05761847) on Feb 25, 2023.

Have Almost Fifty Years Of Disability Civil Rights Laws Achieved Equitable Care?

For almost fifty years, federal civil rights laws such as Section 504 of the Rehabilitation Act of 1973, the Americans with Disabilities Act (ADA) of 1990 and the ADA Amendments Act of 2008, and Section 1557 and other provisions of the 2010 Patient Protection and Affordable Care Act have prohibited discrimination against Americans with disabilities, including in health care. Despite these laws, disabled Americans continue to experience disparities in health and health care, from preventive care to home and community-based services. In its 2022 Health Equity Framework for People with Disabilities, the National Council on Disability highlighted some of these disparities and recommended remedies. To explore these concerns, this article examines disability inequities and potential solutions within six areas. It concludes by recommending the ratification of the 2006 United Nations Convention on the Rights of Persons with Disabilities to reinvigorate US efforts to maximize the health and dignity of disabled Americans and support their full participation in the community.

Research to Advance Health and Health Care Equity for People With Communication Disabilities: An Overview of Research Symposium Papers.

Presentation Video: https://doi.org/10.23641/asha.21235632.

Striving Toward Equity in Health Care for People With Communication Disabilities.

PURPOSE: Approximately 10% of the U.S. adult population has a speech, language, and/or voice disability, collectively referred to as communication disabilities. An increasing number of studies demonstrate that persons with communication disabilities have worse health and health care outcomes as compared to those without communication disabilities. Understanding the state of the science, including potential contributing factors is critical to begin to address the disparities. METHOD: Applying a historical lens and integrating multiple models of disability provide a comprehensive perspective of the health and health care outcomes of persons with communication disabilities. RESULTS: Three phases for addressing health care disparities exist: detecting, understanding, and reducing. Results from a 2012 National Health Interview Survey provide compelling population-level results of the health and health care disparities experienced by persons with communication disabilities. To understand the disparities, factors within the health care system, such as availability of communication aids and services, as well as provider and staff biases, assumptions, and lack of knowledge need to be considered. To date, few interventions exist to address disparities in care for persons with communication disabilities. Consequently, researchers need to engage with stakeholders in innovative study designs and methods to facilitate the rapid development, implementation, and dissemination of interventions that address the disparities. CONCLUSION: To ensure equity for the large and growing population of persons with communication disabilities, researchers, policy makers, patients, and health care systems need to collaborate in identifying and addressing the factors contributing to health and health care disparities. Presentation Video: https://doi.org/10.23641/asha.21215804.

Implementation of Collection of Patients' Disability Status by Centralized Scheduling.

BACKGROUND: Collection of disability status in electronic health records (EHRs) is critical to addressing the significant health care disparities experienced by patients with disabilities. Despite this, little evidence exists to inform implementation. METHODS: This pilot trial evaluated the implementation of collection of patients' disability status during primary care new patient registration by centralized call center staff. The study took place over six weeks at an academic hospital system in Colorado. Staff received a 30-minute training on how to ask and document disability status in the EHR. Completion rate of collection, fidelity, and concordance were assessed through chart reviews and recordings of patient registration calls. Focus groups with staff and phone interviews with patients assessed the experience of including disability screeners in patient registration. RESULTS: A total of 3,673 new patients were registered at one of the 53 primary care clinics during the study period. Completion of disability status in the EHR increased from 9.5% at baseline to 53.5% by the last week of the trial, which was then maintained for eight weeks. Challenges were identified in the recorded calls with fidelity of if and how the questions were asked. No patient complaints were reported, and patients reported no concerns regarding collection of disability status during interviews. CONCLUSION: Documenting disability status during patient registration was effective and was not concerning to patients. To make initial steps to providing equitable care, efforts should be made to implement this type of screening universally across the clinical encounter.

Perspectives of Patients with Diverse Disabilities Regarding Healthcare Accommodations to Promote Healthcare Equity: a Qualitative Study.

BACKGROUND: Patients with disabilities often require healthcare accommodations in order to access high-quality, equitable healthcare services. While attention has been paid to accommodation needs in specific disability populations, limited research to date has explored healthcare accommodations that cross-cut diverse disability populations. OBJECTIVE: To identify a deeper understanding regarding accommodations in healthcare settings that could apply across disability populations and promote equitable healthcare. DESIGN: We conducted qualitative focus groups with patients with disabilities and caregivers to understand their experiences and preferences for healthcare accommodations. PARTICIPANTS: We recruited patients and caregivers across all major disability categories to participate in focus groups. Participants were recruited through advocacy organizations and healthcare settings in Southeastern Minnesota. APPROACH: A total of eight focus groups were conducted with 56 participants. Participants described their healthcare experiences and desires for healthcare accommodations. The multidisciplinary research team recorded, transcribed verbatim, and coded all focus groups. The team thematically coded transcripts using content analysis within and across focus groups to identify major themes. KEY RESULTS: Patients identified four challenges and corresponding steps healthcare team could take to promote equitable care: (1) consistent documentation of disabilities and needed accommodations in the medical record; (2) allowance for accommodations to the environment, including adapting physical space, physical structures, and scheduling and rooming processes; (3) provide accommodations for administrative tasks, such as completing paper or electronic forms; and (4) adapt communication during interactions, such as speaking slower or using terms that patients can easily understand. CONCLUSION: These identified themes represent specific opportunities for healthcare teams to effectively provide accessible care to patients with disabilities. Many of the accommodations require minimal financial investment, but did require behavioral changes by the healthcare team to ensure equitable healthcare.

"It's Like a Death Sentence but It Really Isn't" What Patients and Families Want to Know About Hospice Care When Making End-of-Life Decisions.

BACKGROUND: Hospice is underutilized, due to both lack of initiation from patients and late referral from clinicians. Prior research has suggested the reasons for underuse are multifactorial, including clinician and patient lack of understanding, misperceptions about the nature of hospice care, and poor communication during end-of-life discussions about hospice care. Little is known about the decisional needs of patients and families engaging in hospice decision-making. OBJECTIVES: To understand the decisional needs of patients and families making decisions about hospice care. METHODS: We conducted focus groups with family caregivers and hospice providers and one-on-one interviews with patients considering or enrolled in hospice care. We identified participants through purposeful and snowball sampling methods. All interviews were transcribed verbatim and analyzed using a grounded theory approach. RESULTS: Four patients, 32 family caregivers, and 27 hospice providers participated in the study. Four main themes around decisional needs emerged from the interviews and focus groups: (1) What is hospice care?; (2) Why might hospice care be helpful?; (3) Where is hospice care provided?; and (4) How is hospice care paid for? DISCUSSION: Hospice may not be the right treatment choice for all with terminal illness. Our study highlights where patients' and families' understanding could be enhanced to assure that they have the opportunity to benefit from hospice, if they so desire.

Surgeons' Perceptions Toward Providing Care for Diverse Patients: The Need for Cultural Dexterity Training.

OBJECTIVE: We sought to understand the experiences of surgical residents and faculty with treating culturally diverse patients, and identify recommendations for establishing and implementing structured cultural competency training. SUMMARY BACKGROUND DATA: Cultural competency training for medical professionals could reduce healthcare disparities, yet is currently not a standard part of surgical residency training. Few studies have explored the perspectives of surgical residents and faculty on the skills needed to provide cross-cultural care. STUDY DESIGN: A purposeful sample of surgical residents and faculty from 4 academic institutions was recruited for semistructured qualitative interviews. We developed an in-depth interview guide and performed interviews to thematic saturation. Interviews were audio-recorded, transcribed, and analyzed using grounded theory methodology. RESULTS: We interviewed 16 attending surgeons and 15 surgical residents. Participant demographics were: male (51.6%), White (58.1%), Black (9.7%), Asian (22.5%), and Hispanic (9.7%). Four main themes emerged from the data: 1) aspects of culture that can inform patient care; 2) specific cultural challenges related to surgical care, including informed consent, pain management, difficult diagnoses and refusal of treatment, emergency situations, and end-of-life issues; 3) need for culturally competent care in surgery to navigate cultural differences; 4) perceived challenges and facilitators to incorporating cultural competency into the current training paradigm. CONCLUSIONS: Surgeons identified the need to provide better cross-cultural care and proposed tenets for training. Based on these findings, we suggest the development and dissemination of a cultural dexterity training program that will provide surgeons with specific knowledge and skills to care for patients from diverse sociocultural backgrounds.

Adults with Communication Disabilities Experience Poorer Health and Healthcare Outcomes Compared to Persons Without Communication Disabilities.

BACKGROUND: Persons with speech, language, and/or voice disabilities (collectively referred to as communication disabilities (CD)) represent 10% of the US population, yet their healthcare outcomes have not been described. Generally, research shows that persons with disabilities have poorer health and healthcare outcomes than their non-disabled peers. OBJECTIVES: To examine the health and healthcare outcomes of persons with CD compared to persons without CD. DESIGN: Retrospective cohort study of the 2012 National Health Interview Survey, which contained the first supplemental questions on CD. We compared proportional differences in outcomes; logistic and ordered logistic regression assessed the outcome measures across CD categories, controlling for demographics, non-communication disabilities, and chronic conditions. Findings are weighted to permit national inferences. PARTICIPANTS: Adults (≥ 18 years old) were divided into 4 mutually exclusive groups: people with voice disabilities only; speech/language disabilities only; speech/language and voice disabilities; and people without CD. MAIN MEASURES: Chronic health conditions; self-rated health; access to care; unmet needs for care; healthcare utilization. KEY RESULTS: Adults with CD more frequently had ≥ 1 chronic condition (voice 67.9%, speech/language 68.6%, speech/language and voice 79.9%, no CD 50.1%, p < 0.001) and reported fair/poor health (voice 19.5%, speech/language 32.5%, speech/language and voice 48.3%, no CD 11.2%, p < 0.001) compared to those without CD. Adults with CD more frequently utilized healthcare compared to those without CD. However, persons with CD endorsed greater difficulties accessing care than those without CD, including identifying a usual source of care, trouble finding a physician, and delaying or foregoing care (e.g., delayed due to availability of care: voice 26.1%, speech/language 37.2%, speech/language and voice 30.8% no CD 16.1%, p < 0.001). CONCLUSIONS: Persons with CD are medically complex and experience greater challenges accessing healthcare than persons without CD. Healthcare providers need support and tools to provide equitable care that addresses the medical needs of persons with CD.

Development of Patient-Centered Disability Status Questions to Address Equity in Care.

BACKGROUND: Patients with disabilities experience disparities in accessing and receiving high-quality health care services as compared to patients without disabilities. To address the disparities, health care organizations need to identify which of their patients have disabilities to track quality of care and provide appropriate health care accommodations. To date, no evidence-based sets of disability questions exist that serve these purposes. A study was conducted to identify patient-centered disability questions for health care organizations to determine which patients require health care accommodations and to track the quality of care experienced by patients with disabilities. METHODS: In the first of three phases, a focus group with patients and caregivers (N = 54) and interviews with providers (N = 15) were conducted to explore the disability questions that they believed were important. In the second phase, nationally recognized experts (N = 17) participated in a modified Delphi panel to develop a set of disability questions. The third phase entailed cognitive interviews (N = 46) with patients with and without disabilities to refine the wording of the disability questions identified through the previous rounds. RESULTS: Through the three phases, six essential questions and three additional recommended questions were identified. Questions addressed hearing, visual, motor, cognitive, communication, and learning disabilities, and the ability to conduct activities of daily living. An overall question for disabilities not included in the previous questions was also identified. CONCLUSION: Through a rigorous, three-stage process that engaged multiple stakeholders, patient-centered disability questions were identified for health care organizations to use to identify disparities within their organizations and accommodations that address these disparities.

Use of Accessible Examination Tables in the Primary Care Setting: A Survey of Physical Evaluations and Patient Attitudes.

BACKGROUND: Accessible diagnostic equipment, including height-adjustable examination tables, is necessary to accommodate patients with disabilities. Studies demonstrate that only a minority of clinics provide accessible equipment. For clinics with this equipment, no studies have examined the use of such equipment in routine clinical care. OBJECTIVE: In primary care clinics with and without height-adjustable examination tables, we compared the frequency and variation in physical evaluations on examination tables and patients' perceptions of quality care. DESIGN: Survey administered to patients at two primary care clinics in Rochester, MN, in 2015. One clinic had height-adjustable examination tables in every exam room; the other clinic had none. PATIENTS: A total of 399 English-speaking adult primary care patients (61% participation). MAIN MEASURES: Participants were asked whether they were physically evaluated on a table during their clinical encounter. In addition, they completed two subscales of the Patient Perception of Quality of Care survey: Perceptions of Provider's Bedside Manner and Perceptions of Provider's Work. KEY RESULTS: Overall, there were no differences between clinics in the likelihood of patients being examined on an exam table or in their perceptions of quality of care. Across both clinics, patients who reported a disability were 27% less likely to be examined on a table, were less likely to rate their provider's bedside manner favorably (74% vs. 59%) and to have positive perceptions of their provider's work (46% vs. 32%) than patients without disabilities. CONCLUSIONS: The presence of accessible medical equipment was not associated with care delivered to patients. While this might not be meaningful for most patients, it could be problematic for patients with disabilities, who are less likely to be examined. Therefore, accessible equipment alone may not be sufficient to reduce disparities in the care experience. Provider- and organization-level factors must thus be considered in efforts to provide equitable care to patients with disabilities.

Introduction to Disability and Health for Preclinical Medical Students: Didactic and Disability Panel Discussion.

INTRODUCTION: Millions of American patients have a disability, and their health care outcomes depend on the attitudes of their health care providers towards persons with disabilities. Overly negative health care provider attitudes lead to significant misunderstandings about what it means to have a disability, inappropriate assumptions, and poor care. However, very few medical schools teach about disability. METHODS: We developed a preclinical medical student curriculum that addresses the complexity of disability, focusing on health care disparities and bias. Our curriculum was designed with significant input from people with disabilities and was constructed from their perspective. In addition to didactic and discussion sessions on disability history, models of disability, and health disparities, we include a discussion panel with community members who have a disability. RESULTS: The curriculum has been effective at promoting discussion and is well received by students. When rating the relevance to future clinical practice, students gave the curriculum an average of 3.9 on a 5-point Likert scale (1 = poor, 5 = excellent). The majority of students commented that the community involvement in the session was the most meaningful aspect. DISCUSSION: It is possible to integrate community-driven discussions on the social context of disability into traditional medical school preclinical curricula, and students find it valuable to their education.

Using photovoice to explore patient perceptions of patient-centered care in the Veterans Affairs Health Care System.

BACKGROUND: Accounting for patient views and context is essential in evaluating and improving patient-centered care initiatives, yet few studies have examined the patient perspective. In the Veterans Affairs (VA) Health Care System, several VA facilities have transitioned from traditionally disease- or problem-based care to patient-centered care. We used photovoice to explore perceptions and experiences related to patient-centered care among Veterans receiving care in VA facilities that have implemented patient-centered care initiatives. DESIGN: Participants were provided prompts to facilitate their photography, and were asked to capture salient features in their environment that may describe their experiences and perceptions related to patient-centered care. Follow-up interviews were conducted with each participant to learn more about their photographs and intended meanings. Participant demographic data were also collected. RESULTS: Twenty-two Veteran patients (n = 22) across two VA sites participated in the photovoice protocol. Participants defined patient-centered care broadly as caring for a person as a whole while accommodating for individual needs and concerns. Participant-generated photography and interview data revealed various contextual factors influencing patient-centered care perceptions, including patient-provider communication and relationships, physical and social environments of care, and accessibility of care. CONCLUSIONS: This study contributes to the growing knowledge base around patient views and preferences regarding their care, care quality, and environments of care. Factors that shaped patient-centered care perceptions and the patient experience included communication with providers and staff, décor and signage, accessibility and transportation, programs and services offered, and informational resources. Our findings may be integrated into system redesign innovations and care design strategies that embody what is most meaningful to patients.

A research agenda for documenting disability status within healthcare organizations to address disparities in care.

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.