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http://dx.doi.org/10.2147/PPA.S81975

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

Flora tzelepis robert W sanson-Fisher Alison c Zucca elizabeth A Fradgley Priority research centre for Health Behaviour, University of Newcastle and Hunter Medical research institute, Newcastle, NsW, Australia

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 inte-

grated; 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.

Keywords: patient-centered care, quality of care, quality assessment, patient-reported measures

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

correspondence: Flora tzelepis Priority research centre for Health Behaviour, University of Newcastle, University Drive, callaghan, NsW 2308, Australia tel +61 2 4924 6275 Fax +61 2 4924 6490 email [email protected]

Journal name: Patient Preference and Adherence Article Designation: Perspectives Year: 2015 Volume: 9 Running head verso: Tzelepis et al Running head recto: Measuring the quality of patient-centered care DOI: http://dx.doi.org/10.2147/PPA.S81975

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tzelepis et al

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 develop-

ment 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 dimen-

sions 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 dimen-

sions 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 experi-

ences 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 effi-

cient 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

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Measuring the quality of patient-centered care

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 dif-

ficult for these providers to determine whether overall patient

care was coordinated and integrated. Therefore, patient-

reported measures could be used to capture patients’ per-

spectives 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 Coor-

dination 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 informa-

tional 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 infor-

mation 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 Addi-

tionally, 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 Interfer-

ence 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 com-

mon 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

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tzelepis et al

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 involve-

ment 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 improve-

ments are required and consequently may facilitate advance-

ments to the delivery of patient-centered care.

Acknowledgments This research was undertaken by the Priority Research Centre

for Health Behaviour at the University of Newcastle which

receives infrastructure support from the Hunter Medical

Research Institute. Dr Flora Tzelepis was supported by a Leu-

kaemia Foundation of Australia and Cure Cancer Australia

Foundation Post-Doctoral Research Fellowship.

Disclosure The authors declare that they have no conflict of interest.

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