Fig. 7.1
Characteristics of patient-reported outcomes
PROs are tools that enable the elicitation, collection, and assessment of PRO information. A PRO measure, referred to by some as PROM, is “any standardized or structured questionnaire regarding the status of a patient’s health condition, health behavior, or experience with health care that comes directly from the patient” [50]. PRO measures are standardized tools—developed through qualitative methods to identify top patient concerns—that allow comparison of quantitative data across patient groups and/or providers [50]. The use of PRO measures has been described as critical to enhance understanding of how treatments impact patient functioning and well-being from the perspective of patients themselves [49]. They show immense promise for enhancing value in health by strengthening supportive care, improving symptom control, and enhancing the quality of healthcare delivery [51]. Moreover, implementation and discussion of actual patient reports during clinic visits can help facilitate shared decision making, resulting in improved patient satisfaction with provider communication, particularly regarding emotional concerns [51, 52].
Health-related quality of life (HRQL) measures are multidimensional and commonly encompass the physical, emotional, and social well-being associated with illness and/or treatment [50]. The Patient Reported Outcomes Measurement Information System (PROMIS® ) is a good example of an HRQL measurement tool that provides patient-reported health status measures for physical, mental, and social well-being [53]. PROMIS tools are available for use across various conditions and chronic diseases and in the general population. Clinicians can use PROMIS measures to understand how treatments affect patient function and the symptoms they experience. Such information is useful for enhancing patient-provider communication, informing treatment plan design, and improving chronic illness management [53]. Neuro-QOL is another HRQL measurement system that captures different areas of functioning and well-being in adults and children with neurologic diseases [54]. Neither PROMIS nor Neuro-QOL specifies a disease within the item phrasing, making possible a comparison across conditions [54, 55]. In order to assess the value of healthcare services, patient HRQL must be included in the calculation.
Functional status is included in Porter’s three-tier outcome hierarchy. Functional status measures assess the patient’s ability to perform basic and advanced activities of daily living. For example, functional status could include cognitive function, physical function, and sexual function [50].
Symptoms and symptom burden are also important outcome measures for assessing value. Symptom assessment should be conducted prior to beginning treatment and should be continually assessed throughout recovery to determine treatment effectiveness. Patient symptoms commonly occur in clusters rather than in isolation. Symptom burden is a concept that refers to the impact of multiple symptoms on the patient, encompassing both the severity of symptoms and the impact of the symptoms from the patient’s perspective [56]. For example, the PROMIS Pain Interference is a highly reliable and valid measure that enables quantification of the impact of pain on functioning that can be used across conditions [57].
Likewise, the Functional Assessment of Chronic Illness Therapy (FACIT)-Fatigue questionnaire can be used to accurately measure symptoms and symptom burden. The FACIT-F is not condition specific, and therefore can be used for comparisons between a variety of conditions [58, 59]. There are, however, disease-specific FACIT questionnaires such as FACIT-Dyspnea, which is a measurement tool that has been specifically tailored to assess dyspnea for chronic obstructive pulmonary disease [60]. Additional examples of disease-focused symptom assessments tools can be obtained from the National Comprehensive Cancer Network (NCCN) , which catalogues disease-specific symptom indexes for various types of cancer. In collaboration with the NCCN , Cella and colleagues addressed the need for brief and clinically relevant measures by creating a series of 11 disease-specific symptom indexes (bladder, brain, breast, colorectal, head and neck, hepatobiliary, kidney, lung, lymphoma, ovarian, prostate) that reflect the highest priority symptoms and concerns of patients [61, 62]. While HRQL, functional status, and symptom PROs are necessary to assess the quality of health care, the patient experience is another type of PRO that must be included as a measure of quality in high-value calculations.
Patient Experience of Care
Patient ratings of healthcare experiences are central to the provision and promotion of patient-centered care, which in turn enhances the value of care. Patient experience involves the perceived needs, care expectations, and actual experience of care received [63–67]. In the past, patient experience and healthcare quality were assessed through patient satisfaction PROMs. Patient satisfaction is a construct that includes multiple dimensions such as evaluations of patient-provider communication, level of trust or confidence in physicians, treatment affordability, service availability, quality-of-care facilities, and satisfaction with treatment explanations and medications [68, 69]. However, in recent years, the construct of patient satisfaction has been criticized for its lack of clarity in how it is defined and its basis upon subjective patient experiences, which are largely influenced by patient care preferences and expectations [43, 70]. Today, patient-reported experience has been distinguished as a more objective measure of patient experience and care quality. Often, patient satisfaction is conflated with patient experience creating confusion between the two; yet the two concepts are distinct [43].
Patient experience is a multidimensional construct that involves patient feedback on what actually happened during the course of care including observable processes and outcomes, objective experiences, and subjective experiences [48]. Patient experience, therefore, involves a range of variables including experiences with scheduling appointments, wait times, facility cleanliness, provision of information, and interactions with all healthcare staff (e.g., doctors, nurses, assistants, receptionists). Thus, patient experience consists of patient reports of what happened as well as the patient’s evaluation or ratings of the experience reports [43, 48].
Patient-reported experience measures are tools used to evaluate the patient-centeredness and quality of health care. They obtain patient feedback on specific care experiences that capture key components of patient-centered care [48, 71]. Experience of care measures yield valuable insights into the quality of healthcare delivery from the patient’s perspective. Moreover, enhanced patient experience is associated with promising outcomes, such as increased adherence, improved clinical outcomes, improved patient safety, enhanced clinical effectiveness, and reduced healthcare utilization [48, 72, 73]. In 1995, AHRQ began the Consumer Assessment of Healthcare Providers and Systems (CAHPS) project, a multi-year initiative to promote and support assessment of patients’ healthcare experiences through the development of standardized questionnaires and resources that provide both patients and providers with intelligible and comparative information [74].
Likewise, in a joint effort, Centers for Medicare and Medicaid and AHRQ developed the CAHPS Hospital Survey (i.e., HCAHPS). HCAHPS is the first standardized, publicly reported, national survey of patients’ perspectives of hospital care in the US. HCAHPS is a 32-item standardized survey of patient perspectives regarding hospital care that enables objective comparisons of hospital performance on topics important to patients. HCAHPS measures nurse and doctor communication, level of responsiveness to patient needs, pain management, communication regarding new medications, provision of critical information at discharge, patient understanding of care needed following discharge, reports on patient room cleanliness and quietness, likelihood to recommend to friends and family, and an overall hospital rating. HCAHPS surv ey results are publicly reported four times per year on the Hospital Care website, which allows comparisons across national, regional, and local hospitals. The website also provides HCAHPS Star Ratings that summarize and legibly report results to make it easier for consumers and patients to identify and compare hospitals on healthcare quality and excellence. HCAHPS is among the measures identified in the Patient Protection and Affordable Care Act of 2010 for use in calculating value-based incentive payments in the Hospital Value-Based Purchasing program [75]. Both the CAHPS and HCAHPS are measures that assess patient experience on healthcare dimensions for which patients are the only or best informational source [70].
Measuring Quality in Surgical Care
To date, no validated measurement system of surgical care quality exists. In order to align health care with efforts to improve quality, Mayer and colleagues (2009) suggested a multidimensional approach to assess the quality of surgical care that incorporates measures of both clinical and PROs over the full cycle of care [76]. Clinical pathway measures include structured measures (e.g., ratios of doctors to population served, doctors and nurses per bed, management capabilities), process measures (e.g., preoperative, intraoperative, postoperative facets of care), clinical outcome measures (e.g., procedure-specific outcomes, 30-day mortality, follow-up diagnostics, length of stay, readmission rates), and economic measures (e.g., the amount of cost created per unit of quality-adjusted output). In addition to measuring clinical pathways, the quality framework must include PRO measures. For Mayer and colleagues, these measures include patient-reported treatment outcome measures (e.g., patient reports of treatment outcomes including symptoms and/or functional status), HRQL measures (e.g., general, physical, social/family, emotional, functional well-being), and patient satisfaction/experience (e.g., patient expectations and characteristics, psychosocial determinants, interpersonal aspects, care accessibility and convenience, care environment, care continuity).
While great strides have been made in outlining high-value care principles and priorities, much work is yet to be done. The transformation into a high-value healthcare delivery system will require participation from every stakeholder in the healthcare system. Clinicians must open their minds beyond traditional clinical practice and begin to prioritize the needs and values of patients, which should be a central focus of healthcare delivery regardless. Patients too must be open to change in how health care is delivered and be open to considerations of cost when choosing among screening or treatment options. Patients play a significant role in producing high-value care, which involves engaging in shared decision making with providers, becoming well-informed participants, and taking a more active role in their health and healthcare planning. Incorporating PRO measures into standard care practice will not only help providers assess the impact of treatments on patients, but it will also give providers an opportunity to facilitate shared decision making and to practice medicine that is centered around the patient. Most of all, the priorities and preferences of patients must be considered when determining the value of screening or treatments, and PRO measures are valuable tools for achieving such goals. In sum, high-value care enables the practice of patient-centered care by ensuring that healthcare decision making and choices are both responsive and considerate of individual patient needs and priorities while simultaneously enhancing efficiency and reducing costs .
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