About the book
The patient-reported outcomes refer to reports of the status of a patient’s health condition that comes directly from the patient. The patient-reported outcome tools measure the experience of patients' journeys, how they feel about the process and outcomes of treatment by asking questions. These tools enable assessment of patient-reported health status for physical, mental, and social well–being. While well established as a clinical research approach, they are less commonly used in health care practice, especially in the care of patients with chronic conditions. Also, not enough is currently known about aggregating these patient-level self-reports for measuring the performance of the healthcare entity delivering care. There are two main groups of patient-reported outcome measures. A Patient Reported Experience Measure (PREM) is a measure of a patient's perception of their personal experience of the healthcare they have received. PREM instruments should focus on the aspects of the care that matter to the patient. Patient Experience Outcome Measures (PROM) are self-report questionnaires, completed by patients, and seek to measure their perceptions of their health status and health-related quality of life. The information gained from these responses can be used to provide a more patient-centered service, improve the quality of care, and optimize the responsiveness of health services to legitimate expectations of health consumers.
Especially with regards to subjective ailments such as severe pain or certain types of mental illness, patient reports of quality of care are increasingly used as prime measures of the effectiveness of care. Commonly required performance data in healthcare tend to focus principally on inputs (e.g. workforce and medicines) and outputs (e.g. life expectancy), but they are silent on a range of other things valued by patients, including pain, function, communication, quality of life as well as the experience of care itself.
Health care system responsiveness may be described as the ability of the health care infrastructure to meet the population's legitimate expectations regarding their interaction with the health system, apart from expectations for improvements in health. It is a major goal of health systems. Poor responsiveness may negatively affect the utilization of services and the effectiveness of interventions. Information on responsiveness plays a critical advocacy role for echoing the voice of health consumers. Two major facets of healthcare responsiveness are respecting for persons/health consumers (e.g. that the health system should treat patients with dignity, facilitate shared decision making, provide for clear communication with their health care providers and assure confidentiality of their medical encounters, and client orientation (e.g. that health care systems provide prompt attention, access to social support, choice of provider and aesthetically pleasant care environments.
This book project will cover these and related issues about patient-reported outcomes and their measures and provides a solid platform for sharing and learning about initiatives to measure health care outcomes that matter to patients, such as quality of life. We invite health care researchers, patients, health policymakers, and clinicians as well as other health care providers.