Measuring the quality of patient-centered care: why patient-reported measures are critical to reliable assessment.

PURPOSE: The Institute of Medicine (IOM) identified patient-centeredness as crucial to quality health care. The IOM endorsed six patient-centeredness dimensions that stipulated that care must be: respectful to patients' values, preferences, and expressed needs; coordinated and integrated; provide information, communication, and education; ensure physical comfort; provide emotional support; and involve family and friends. Patient-reported measures examine the patient's perspective and are essential to the accurate assessment of patient-centered care. This article's objectives are to: 1) use the six IOM-endorsed patient-centeredness dimensions as a framework to outline why patient-reported measures are crucial to the reliable measurement of patient-centered care; and 2) to identify existing patient-reported measures that assess each patient-centered care dimension.
METHODS: For each IOM-endorsed patient-centeredness dimension, the published literature was searched to highlight the essential role of patients in assessing patient-centered care and informing quality improvement efforts. Existing literature was also searched to identify examples of patient-reported measures that assess each patient-centeredness dimension.
CONCLUSION: Patient-reported measures are arguably the best way to measure patient-centeredness. For instance, patients are best positioned to determine whether care aligns with patient values, preferences, and needs and the Measure of Patient Preferences is an example of a patient-reported measure that does so. Furthermore, only the patient knows whether they received the level of information desired, and if information was understood and can be recalled. Patient-reported measures that examine information provision include the Lung Information Needs Questionnaire and the EORTC QLQ-INFO25. In relation to physical comfort, only patients can report the severity of physical symptoms and whether medications provide adequate relief. Patient-reported measures that investigate physical comfort include the Pain Care Quality Survey and the Brief Pain Inventory. Using patient-reported measures to regularly measure patient-centered care is critical to identifying areas of health care where improvements are needed.

Measuring the quality of patient-centered care

The Institute of Medicine (IOM) recommended that to achieve high quality health care, improvements were needed to the delivery of patient-centered care.1 Patient-centered care is responsive to patients’ values and needs and patient preferences guide decision-making.1 The IOM endorsed six dimensions of patient-centered care which stated that care must be: 1) respectful to patients’ values, preferences, and expressed needs; 2) coordinated and integrated; 3) provide information, communication, and education; 4) ensure physical comfort; 5) provide emotional support – relieving fear and anxiety; and 6) involve family and friends.1 The six dimensions of patient-centered care endorsed by the IOM1 were established by the Picker Institute.2 During the development of the six patient-centeredness dimensions, Gerteis et al drew on empirical research, theory, and patient and provider surveys to maximize validity.2 The Picker Institute3 and the International Association of Patients’ Organizations (IAPO)4 have proposed alternative frameworks of patient-centered care. However, the principles in the Picker Institute’s3 and IAPO’s4 models of patient-centered care are similar to and largely overlap with the IOM-endorsed patient-centeredness dimensions.

Patient-reported measures developed to assess the quality of patient-centered care include measures of satisfaction with care and measures of experiences of care.5,6 Patient-reported measures are essential to quality improvement efforts as they provide the patient’s perspective in relation to areas of health care that are of high quality and aspects of care where improvements are needed.7 Patient-reported measures are arguably the best way to assess constructs that relate to patient-centeredness given that patient-centered care is responsive to the patient and is guided by patient preferences.1 Patient-reported measures are also able to collect information that can only be obtained from patients themselves such as whether the patient received adequate pain relief.8

Given the IOM used the six patient-centeredness dimensions developed by Gerteis et al2 to recommend improvements to the delivery of patient-centered care,1 the IOM-endorsed patient-centeredness framework is used in this article. The objectives were: 1) to use the six IOM-endorsed dimensions of patient-centered care as a framework1 to highlight the crucial role of patient-reported measures in the accurate assessment of the quality of patient-centered care; and 2) to identify examples of existing patient-reported measures that measure each IOM-endorsed patient-centeredness dimension. To examine these objectives, the published literature was searched to obtain evidence in relation to the role of patients in the assessment of patient-centered care and the importance of patients’ perspectives for informing quality improvement efforts. The published literature was also searched to identify examples of patient-reported measures that assessed each IOM-endorsed dimension of patient-centered care.

This article makes an important contribution to the literature by collectively examining all six IOM-endorsed patient-centeredness dimensions and discussing reasons why it is important to measure each dimension of patient-centered care. Examples of measures that assess the patient-centeredness dimensions are provided to encourage rigorous assessment of patient-centered care. Using a suite of measures to comprehensively and accurately assess from the patient’s perspective all dimensions of patient-centered care could assist with prioritizing areas of patient-centeredness where improvements are most needed and facilitate quality improvement efforts.

Respectful to patients’ values, preferences, and expressed needs

The IOM recommended that health care should be respectful of patients’ cultural and other values, preferences, and needs.1 Patients should feel able to express views, be involved in decision-making according to their preferences, and receive respectful care.1 Patient-centered communication delivered by health care providers has been associated with better patient emotional health,9 and answering patient questions associated with better long-term patient psychosocial adjustment.10 Furthermore, patients with a good health care provider relationship indicated greater satisfaction with care and adherence to prescribed treatment.11

A mismatch between physicians’ understanding of patients’ preferences for treatment and decision-making has been found.11 However, patients themselves are most knowledgeable about whether care aligns with their values, preferences, and needs. The mismatch between physicians’ perspectives and patients’ views regarding the delivery of care highlights the need to regularly measure patients’ preferences and experiences to ensure that care is responsive to patient values and needs. Examples of patient-reported measures that assess patient values, preferences, and needs include the Measure of Patient Preferences, that examines the manner physicians deliver care about cancer diagnosis and management12 and the modified version of the Perceived Involvement in Care Scale.13

Coordinated and integrated care

The IOM stated that health care should be coordinated and integrated and include timely transfer of up-to-date patient information to health care professionals, and efficient transition of patients between health care settings.1 A systematic review reported that effective interventions that improved the coordination of cancer care were those that provided follow-up, case management, and one-stop clinics.14 Research with newly diagnosed colorectal cancer patients indicated that problems with coordination of care were associated with poorer ratings of overall cancer care.15 Furthermore, a specialized respiratory coordinated care community program for people with advanced chronic obstructive pulmonary disease, demonstrated improvements to length of stay, readmission rates, and hospital admissions per patient per year.16

As health care increasingly occurs across various settings and involves several health care professionals, it may be difficult for these providers to determine whether overall patient care was coordinated and integrated. Therefore, patient-reported measures could be used to capture patients’ perspectives of the delivery of coordinated and integrated care and this information could supplement health care records in order to assess the quality of this aspect of care. Patient-reported measures that assess the delivery of coordinated and integrated care include the Cancer Care Coordination Questionnaire for Patients,17 the Client Perceptions of Coordination Questionnaire,18 and the Care Coordination Measure for the Consumer Assessment of Healthcare Providers and Systems (CAHPS®) Medicare Survey.19

Information, communication, and education

The IOM recommended that patients receive clear, accurate, and understandable information about all aspects of care according to the patient’s preference, including in relation to diagnosis, prognosis, treatments, follow-up, and support services.1 A systematic review of cancer patient informational needs indicated that 10%–24% of patients had unmet information needs at diagnosis and 11%–97% had unmet information needs during treatment.20 A survey of advanced cancer patients reported that they were least satisfied with information regarding prognosis and pain management.21 Diabetes patients have also reported dissatisfaction with information received at diagnosis (20%), and wanted further information about the disease and medications (24%).22

Only the patient knows whether they received the level of information desired, communication was appropriate, and if information was understood and recalled, highlighting the importance of using patient-reported measures to accurately assess the quality of information delivery in regards to patient care. Examples of patient-reported measures that assess information provision in relation to health care include the Lung Information Needs Questionnaire, developed with chronic obstructive pulmonary disease patients,23 and the EORTC QLQ-INFO25 a measure for cancer patients.24

Physical comfort

The IOM recommended that health care promptly provide appropriate pain relief to patients and attend to physical symptoms and needs.1 Cancer patients, particularly those with advanced disease, commonly experience fatigue (60%–90%)25,26 and pain (64%).27 Fatigue after stroke ranges between 38% and 77%,28 and nociceptive pain is experienced by 5%–84% of stroke patients.29 Despite the availability of efficacious treatments, almost 50% of cancer patients with pain are under-treated,30 and 40%–73% reported receiving no assistance or treatment for cancer-related fatigue.26,31 Cancer patients who experience fatigue use health care services more frequently than those who do not experience fatigue.32 Additionally, more than two-thirds of stroke patients with long-term pain had no or inadequate prescribed pain treatment.29

Patient-reported measures are recognized as the gold standard for assessing cancer pain and fatigue.33 Only patients themselves can report the severity of fatigue, pain or physical symptoms, and whether medications provide adequate pain relief. This highlights the importance of using patient-reported measures to determine whether health care appropriately attends to patient comfort. Patient-reported measures that assess physical comfort include the Pain Care Quality Survey,34 the Brief Pain Inventory used for clinical pain assessment across cultures,35 and the Patient-Reported Outcomes Measurement Information System Pain Interference measure.36

Emotional support – relieving fear and anxiety

The IOM stated that health care should address patients’ emotional and spiritual concerns, including anxiety due to uncertainty, fear, financial impact, or effect on family.1 Anxiety ranges from 10%–49% in cancer patients and depression from 0%–49% and are highest during cancer diagnosis and recurrence.37 A literature review indicated that 9%–26% of stroke survivors experience severe depression, 16%–52% acute depression, and 17% agoraphobia.38 Unmet need among cancer patients for psychological assistance ranges from 12%–85%, with such unmet needs most common during treatment.20 Furthermore, almost one quarter (23%) of people with diabetes wanted more reassurance and psychological support.22

Clinician accuracy of patient psychosocial well-being can be poor, as demonstrated by only 17% of cancer patients classified as clinically anxious and 6% as clinically depressed perceived as such by oncologists.39 Using patient-reported measures to assess the level of emotional support provided can inform quality improvement efforts by determining if health care services adequately address patients’ emotional needs and reduce psychological distress. Widely used patient-reported measures for assessing the emotional well-being of patients include the Hospital Anxiety and Depression Scale40 and Beck Depression Inventory.41

Involvement of family and friends

The IOM recommended that family and friends are involved in patient care and decision-making according to patient preferences and that care is responsive to the needs of family and friends.1 Family and friends can improve patient-provider rapport, facilitate information exchange, encourage decision-making involvement, and increase patient satisfaction.42 However, families and friends of stroke patients have reported feeling inadequately informed about and involved in patient care.43 A review found that major issues faced by cancer caregivers included managing their own and patient’s psychological concerns, medical symptoms, side effects, and daily activities.44 Family members of cancer patients have been found to be more likely to have unmet needs about information in relation to supportive care than for medical information.45

Only the patient can determine if family and friends were involved in care according to the patient’s wishes. A systematic review of patient-reported measures examining patient-centered care among cancer patients reported that few patient-reported measures assess whether the involvement of family and friends in health care aligns with patient preferences.7 Family and friends are best able to accurately assess if their own concerns and needs were adequately addressed during the provision of health care. Measures that assess the needs and experiences of family and friends include the Support Person Unmet Needs Survey46 and the Quality of Family Experience measure, that assesses the experiences of families with a patient with a serious illness.47

Conclusion

Accurate measurement of the quality of patient-centered care is essential to informing quality improvement efforts. Using patient-reported measures to measure patient-centered care from patients’ perspectives is critical to identifying and prioritizing areas of health care where improvements are needed. Patients are well positioned to provide reliable and valid information about the delivery of patient-centered care. For instance, only patients are able to accurately determine whether care was respectful to patients’ values, preferences, and needs. Regularly using patient-reported measures to accurately assess the quality of patient-centered care could assist with promptly identifying areas of care where improvements are required and consequently may facilitate advancements to the delivery of patient-centered care.