Implications of Disability Definition for Quality Measurement
Developing Quality of Care Measures for People with Disabilities: Summary of Expert Meeting
The discussion of disability definitions transitioned into considering the implications of these definitions for constructing health care quality measures for persons with disabilities. Comments again fell into several broad categories, as follows.
Considering the Environment
As Dr. Andresen observed, embedding the environment within the definition of disability identifies, from the start, a critical quality measurement domain: accessibility of health care environments to patients with disabilities. Access here is viewed broadly, encompassing not only physical access but also access involving the senses (vision, hearing), speech, and cognitive abilities (e.g., communication access). Access barriers along any of these lines would constitute a quality problem.
Dr. Sandel raised another environmental concern. As noted in the ICF, environmental factors encompass not only physical structures but also policies (e.g., health insurance benefit packages), societal attitudes, and other social practices.13 She focused specifically on unconscious bias among health care professionals concerning persons with disabilities. According to Dr. Sandel, that unconscious bias shapes the environment within which patients receive care, including the physical environment. For example, unconscious bias could affect the extent to which clinicians ensure that equipment is operational and lift teams in place when people with mobility disabilities arrive for care.
Research Question (RQ): How does unconscious bias concerning disability affect the care that health care professionals provide to persons with disabilities?
Broadly considered, clinician training is also part of the environment within which patients seek care. Dr. Kirschner raised the issue of training of health care professionals about disability. She noted that many physicians and health care providers simply do not recognize disability. They also are uninformed about how disability affects patients' daily lives and the need for supports for patients to remain functionally independent. According to Dr. Kirschner, clinicians fail to recognize disability, especially among certain subgroups of patients:
Kirschner: I have seen a lot of pediatric cancer patients in my practice over the years, persons who had cancer treatment as children and are growing up and having a lot of secondary functional disabilities and complications, which need to be managed and treated in an ongoing fashion. Would that be considered classic disability in many health care providers' minds? I don't think so.... How can we be very broad in terms of looking at where disability exists? How do we recognize it? And then what is the appropriate role of medical providers?
RQ: How can clinicians be trained to recognize disability? What is the appropriate role of different health care professionals in addressing disability?
Considering the environment might have other consequences for designing quality metrics. In her work on preventing pressure ulcers among individuals with spinal cord injuries, Florence Clark, PhD, adopts an ecological perspective: taking patients' "habitat into consideration [is critical in addressing] their ability to flourish." The problem comes with statutory and other limitations on paying for interventions that target the environment rather than patients' bodily functions. Typically, "medical necessity" requirements prohibit reimbursement for environmental modifications and certain assistive technologies. Thus, quality measures based on "best practices" for improving patients' safety within their environments might target interventions not covered by insurers. If patients cannot pay for these interventions themselves, they may be unlikely to receive them.
Dr. Schyve stated that the patient-centered perspective is essential to drive quality measures: "We need to elicit, as health care providers, what are the particular perceptions and views of the individual, and how do we then address those in terms of the quality of care? So this linkage of patient-centered [thinking] and whatever the barrier, including barriers that may come from disability, is an important connection."
Dr. Strickland concurred with the need to consider quality of life, the quintessential patient-centered outcome. She urged the group to remember that, depending on their underlying disabling condition, some persons with disabilities can have excellent physical health. That recognition is especially critical among children and youth early in their physical development. In these instances, health care quality metrics should assume a future-oriented, developmental perspective. Furthermore, this perspective should extend beyond physical health to examine the outcomes of social engagement and a broad concept of participation in community life. Dr. Sandel similarly urged a focus on wellness, even when the patient has significant medical conditions requiring clinical interventions. She gave the example of providing exercise and nutritional consultations to persons with spinal cord injury.
Rosaly Correa-de-Araujo, MD, MSc, PhD, indicated that similar concepts underlie current community living initiatives from the U.S. Department of Health and Human Services: "When we talk about quality of life, we immediately link this to having or living a meaningful life in their communities. This is a definition that people with disabilities have to establish. What is meaningful for them, what works for them, what is happening in their lives that makes them comfortable?" Anita Yuskauskas, PhD, mentioned efforts by the Centers for Medicare & Medicaid Services (CMS) involving the home- and community-based service delivery system, which was developed to help people with long-term-care needs to live in the community.
RQ: How does health care interface with quality of life for persons with disabilities? What are the community-based services and supports required to maximize social engagement, community participation, and quality of life for people with disabilities? What quality metrics could be based on these concepts and approaches?
RQ: What are the best models of wellness programs for persons with disabilities? How can wellness concepts be integrated into routine care of persons with disabilities?
Margaret Turk, MD, raised another question related to patient-centeredness involving patients" perceptions of their care, broadly considered satisfaction with care. She cited studies that find that people with chronic health conditions and disabilities approach the satisfaction question differently than do individuals without these conditions. Furthermore, satisfaction perceptions may vary by type of disability.
RQ: How do persons with different disabilities perceive their health care and rate satisfaction with care? How do these perceptions vary across disabilities and by different types of chronic health conditions?
Multidimensional Nature of Disability
As the ICF explicitly states,13 disability is an umbrella term encompassing multiple dimensions, ranging from impairments relating to specific diseases and disorders to participation limitations from various environmental barriers. Dr. Stineman summarizes this multidimensionality using the phrase "bio-psycho-ecological model." Implicit within this bio-psycho-ecological approach is the need for services addressing the different components. Generally, this requires an interdisciplinary team of clinicians, and perhaps community-based supports, raising risks of fragmentation of care. Jay Himmelstein, MD, MPH, raised the issue of the role of personal care assistants (PCAs) as one critical component of the community-based services. As Dr. Kirschner noted, care often is provided in disciplinary silos, without adequate coordination. In particular, as Dr. Stineman observed, transitions across settings of care (e.g., from inpatient to outpatient settings) can be marked by temporary exacerbations of disability, requiring explicit oversight to ensure that community supports are in place to minimize this risk. Dr. Sandel wondered whether patient-centered medical home models might achieve the required coordination and improved outcomes.
Both Drs. Clark and Himmelstein highlighted the need for better research that clearly links health outcomes, including patient-reported quality of life, to the components of the bio-psycho-ecological model of disability. For this research, Dr. Clark emphasized environmental modifications, while Dr. Himmelstein concentrated on specific processes of care. Dr. Himmelstein also raised concerns about specific subpopulations of persons with disabilities, such as individuals with psychiatric disabilities.
RQ: What are the major barriers to coordinating care across various disciplines caring for persons with disabilities? What are the major barriers to implementing a bio-psychoecological model of care? Are there condition-specific challenges to care coordination that must be addressed and, if so, how? How might patient-centered medical homes work to improve care and outcomes for persons with disabilities?
RQ: What are the links between different components of the bio-psycho-ecological model of care and patient outcomes, including quality of life? In particular, how do aspects of the environment link to medical conditions, such as pressure ulcers and other secondary conditions?
Dr. Strickland reminded the group about the need to keep a life course perspective, recognizing that some dimensions of the multidimensional concept of disability may appear more or less important at different points over the life course. This could have implications for quality measurement in terms of emphasizing different factors at different points during the life span. In particular, children should not be treated simply as miniature adults; rather, developmental factors require explicit consideration.
RQ: How should relative differences in the effects of disability dimensions be considered across the life span? What quality indicators reflect a life course approach?
Dr. Schyve made comments that summarized well the general sense of the discussion around the implications of the disability definition for quality measurement:
Schyve: In reality, for any kind of complex system or situation, no one model is ever going to actually tell us everything we need to know about that. Different models help us look at it in different ways and understand different things.... The fact is that there are probably different measures, different ways to measure, depending on which model we're using to look at the phenomenon that we're trying to understand.
Nonetheless, the multidimensional concept contains various core concepts, as delineated by the ICF definition,13 that in turn suggest directions for quality measurement.
RQ: What might be a way of identifying disability in the context of routine care that could identify patients needing accommodations and advance care coordination, quality improvement activities, and new practice models (e.g., patient-centered medical homes)?