Fig. 10.1
Patient-centered outcomes: a paradigm shift
In 2001, patient centered care was formally described by the Institute of Medicine as care that encompasses “qualities of compassion, empathy, and responsiveness to needs, values, and expressed preferences of the individual patient” [1] and was acknowledged as one of the six tenets of quality of care. Most recently, the importance of patient centered outcomes to quality and quality improvement has been reinforced with the creation of the Patient Centered Outcomes Research Institute (PCORI).
In spite of the current momentum, however, the definition of patient-centeredness is not entirely clear and many may take an “I know it when I see it” approach. For example, Stewart defined patient centeredness in the negative, stating “It may be most commonly understood for what it is not—technology centered, doctor centered, hospital centered, disease centered” [2]. This imprecision results in difficulty comparing relative patient centeredness or even determining how to assess patient centeredness. Moreover, the relationship between patient centered care and clinical outcomes or health status is poorly understood. Thus significant fundamental work remains in order to understand how to measure and operationalize patient centered care and outcomes in the quality improvement process.
10.2 Principles of Patient Centered Care
The basic concepts of patient centeredness have been described for nearly 50 years [3] and ultimately have been refined into various models by research and policy groups. In common, they describe recognition of the whole patient as an individual with unique preferences, needs, and values; transparency and coordination of treatment in partnership with the patient and their caregivers; and bi-directional patient-provider communication as a means for accomplishing treatment. Perhaps the most comprehensive model of patient centered care is described by the Picker Institute and Commonwealth Fund centered on eight principles (Table 10.1) [4]:
Table 10.1
Picker Institute/Commonwealth Fund Principles of Patient Centered Care
Respect for patients’ values, preferences and expressed needs |
Coordination and integration of care |
Information, communication and education |
Physical comfort |
Emotional support and alleviation of fear and anxiety |
Involvement of family and friends |
Transition and continuitya |
Access to carea |
Respect for patients’ values, preferences and expressed needs . The patient-provider encounter should include discussion of the patient’s quality of life or subjective sense of well-being, expectations of treatment, and desired involvement in decision making, including desired caregiver involvement. The encounter should incorporate attention to patient autonomy and cultural values.
Coordination and integration of care . Care across services should be coordinated with clear designation of points of contact among services.
Information, communication and education . The patient and family should be consistently and reliably informed about clinical status, clinical progress, prognosis, and processes of care in order to facilitate autonomy and the care partnership.
Physical comfort . Pain management should be a priority with attention to assistance with activities of daily living and a clean, comfortable environment within the healthcare setting.
Emotional support and alleviation of fear and anxiety . The provider should elicit and discuss patients concerns and anxieties especially as they pertain to clinical status, treatment, prognosis, and the impact of illness on self and family.
Involvement of family and friends . The care encounter should include identification of key caregivers and acknowledgment of their impact on the clinical course, including decision making as advocate, proxy, or surrogate, and recognition of the family caregiver roles and needs.
Transition and continuity . Transitions in the setting of care should include information that will help patients care for themselves away from a clinical setting, as well as coordination among providers and support of the patient and family to ease transitions.
Access to care . Access to care should include not only availability of appropriate care but also minimization of time spent waiting for admission or an appointment in the outpatient setting.
Given the breadth of patient centered care principles, distinguishing patient-centered outcomes from “usual care” or traditional clinical outcomes presents a challenge. From a pragmatic perspective, an outcome that results from implementation of any of the principles of patient centered care is a patient centered outcome. Therefore, the family of patient centered outcomes is comprised of a heterogeneous group of variables that may be difficult to compare across studies.
10.3 Defining Patient-Centered Outcomes
In a recent systematic review of randomized trials to improve patient centered care, Dwamena and colleagues organized outcomes into four major categories: the consultation processes, health behavior, satisfaction, and health status (Table 10.2) [5]. Although it was not required for inclusion, the randomized intervention for every study that met criteria was a patient-centered care training program directed at providers. Notably, the review authors found that interventions to transfer patient centered care skills to providers were effective at improving provider communication but that this did not necessarily result in improvement of other outcomes.
Table 10.2
Measuring patient centered outcomes
Patient centered outcome categories | Types of variables | Examples of variables | Data sources |
|---|---|---|---|
Care processes | Patient-provider communication | Elicitation of patient preferences | Medical records |
Shared decision making | Time from diagnosis to surgery | Administrative records | |
Administrative processes | Appropriate post-discharge follow-up | Observational or recorded data | |
Timeliness | Patient reported (survey, interview) | ||
Transparency | |||
Coordination | |||
Health Behavior | Health related habits | Routine exercise | Medical records (physiologic or laboratory tests, provider notes) |
Adherence to recommendations | Smoking cessation | Patient reported (survey, interview) | |
Utilization of care
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