Elizabeth Fradgley

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.

A systematic review of barriers to optimal outpatient specialist services for individuals with prevalent chronic diseases: what are the unique and common barriers experienced by patients in high income countries?

Health utilization and need assessment data suggest there is considerable variation in access to outpatient specialist care. However, it is unclear if the types of barriers experienced are specific to chronic disease groups or experienced universally. This systematic review provides a detailed summary of common and unique barriers experienced by chronic disease groups when accessing and receiving care, and a synthesized list of possible health service initiatives to improve equitable delivery of optimal care in high-income countries. Quantitative articles describing barriers to specialist outpatient services were retrieved from CINAHL, MEDLINE, Embase, and PyscINFO. To be eligible for review, studies: were published from 2002 to May 2014; included samples with cancer, diabetes mellitus, osteoporosis, arthritis, ischaemic heart disease, stroke, asthma, chronic pulmonary disorder (COPD) or depression; and, were conducted in high-income countries. Using a previously validated model of access (Penchansky and Thomas’ model of fit), barriers were grouped according to five overarching domains and defined in more detail using 33 medical subject headings. Results from reviewed articles, including the scope and frequency of reported barriers, are conceptualized using thematic analysis and framed as possible health service initiatives. A total of 3181 unique records were screened for eligibility, of which 74 studies were included in final analysis. The largest proportion of studies reported acceptability barriers (75.7 %), of which demographic disparities (44.6 %) were reported across all diseases. Other frequently reported barriers included inadequate need assessment (25.7 %), information provision (32.4 %), or health communication (20 %). Unique barriers were identified for oncology, mental health, and COPD samples. Based on the scope, frequency and measurement of reported barriers, eight key themes with associated implications for health services are presented. Examples include: common accommodation and accessibility barriers caused on service organization or physical structure, such as parking and appointment scheduling; common barriers created by poor coordination of care within the healthcare team; and unique barriers resulting from inadequate need assessment and referral practices. Consideration of barriers, across and within chronic diseases, suggests a number of specific initiatives are likely to improve the delivery of patient-centered care and increase equity in access to high-quality health services.

Consumer participation in quality improvements for chronic disease care: development and evaluation of an interactive patient-centered survey to identify preferred service initiatives.

Background With increasing attention given to the quality of chronic disease care, a measurement approach that empowers consumers to participate in improving quality of care and enables health services to systematically introduce patient-centered initiatives is needed. A Web-based survey with complex adaptive questioning and interactive survey items would allow consumers to easily identify and prioritize detailed service initiatives. Objective The aim was to develop and test a Web-based survey capable of identifying and prioritizing patient-centered initiatives in chronic disease outpatient services. Testing included (1) test-retest reliability, (2) patient-perceived acceptability of the survey content and delivery mode, and (3) average completion time, completion rates, and Flesch-Kincaid reading score. Methods In Phase I, the Web-based Consumer Preferences Survey was developed based on a structured literature review and iterative feedback from expert groups of service providers and consumers. The touchscreen survey contained 23 general initiatives, 110 specific initiatives available through adaptive questioning, and a relative prioritization exercise. In Phase II, a pilot study was conducted within 4 outpatient clinics to evaluate the reliability properties, patient-perceived acceptability, and feasibility of the survey. Eligible participants were approached to complete the survey while waiting for an appointment or receiving intravenous therapy. The age and gender of nonconsenters was estimated to ascertain consent bias. Participants with a subsequent appointment within 14 days were asked to complete the survey for a second time. Results A total of 741 of 1042 individuals consented to participate (71.11% consent), 529 of 741 completed all survey content (78.9% completion), and 39 of 68 completed the test-retest component. Substantial or moderate reliability (Cohen’s kappa>0.4) was reported for 16 of 20 general initiatives with observed percentage agreement ranging from 82.1%-100.0%. The majority of participants indicated the Web-based survey was easy to complete (97.9%, 531/543) and comprehensive (93.1%, 505/543). Participants also reported the interactive relative prioritization exercise was easy to complete (97.0%, 189/195) and helped them to decide which initiatives were of most importance (84.6%, 165/195). Average completion time was 8.54 minutes (SD 3.91) and the Flesch-Kincaid reading level was 6.8. Overall, 84.6% (447/529) of participants indicated a willingness to complete a similar survey again. Conclusions The Web-based Consumer Preferences Survey is sufficiently reliable and highly acceptable to patients. Based on completion times and reading level, this tool could be integrated in routine clinical practice and allows consumers to easily participate in quality evaluation. Results provide a comprehensive list of patient-prioritized initiatives for patients with major chronic conditions and delivers practice-ready evidence to guide improvements in patient-centered care.

The ‘price signal’ for health care is loud and clear: A cross-sectional study of self-reported access to health care by disadvantaged Australians

Objective: To describe self‐reported inability to access health care and factors associated with lack of access among a socioeconomically disadvantaged group.

Collaborative patient-centered quality improvement: a cross-sectional survey comparing the types and numbers of quality initiatives selected by patients and health professionals

Identification of patients’ and health professionals’ quality improvement preferences is an essential first step in collaborative improvement models. This includes experience-based codesign (EBCD), where service change is strategically introduced following stakeholder consultation. This study compared the number and types of improvement initiatives selected by outpatients and health professionals. Using electronic surveys designed to inform EBCD studies, 541 outpatients (71.1% consent) and 124 professionals (47.1% response) selected up to 23 general initiatives. On average, outpatients selected 2.4 (median = 1, interquartile range = 1–3) initiatives and professionals selected 10.7 (median = 10; interquartile range = 6–15) initiatives. Outpatients demonstrated a strong preference for improvements to clinic organization, such as appointment scheduling and clinic contact. Outpatients selected relatively fewer initiatives potentially reducing the complexity of service change and resources required to address preferences. Comparatively, professionals indicated a greater degree of change is needed and selected initiatives related to communication with patients and other professionals, including coordinating multidisciplinary care. Improvements to information provision were commonly selected by both groups and offered a strategic opportunity to address patients’ and professionals’ preferences. By quantifying the ways in which preferences differed, this study emphasizes the need for collaborative approaches to health service change and may be used to initiate an informed discussion on patients’ and professionals’ quality improvement preferences in tertiary care.

Web-based Support for Population-based Medical Research

This paper discusses the needs of medical researchers working in the area of patient-centred medicine, in particular their use of survey data in measuring patient opinions, needs, perceived quality of care received, and priorities of health service interventions. Until quite recently, collection of survey data has been either paper-based, or achieved using computer software that largely duplicated paper-based processes with limited additional functionality. The authors investigate the use of web-based technology to support collection of such data from patients, including experiences and observations on enhanced/additional functionality made possible by its adoption. A novel software design termed QuON is presented, together with examples of its capabilities and uses in current research projects.

System-Wide and Group-Specific Health Service Improvements: Cross-Sectional Survey of Outpatient Improvement Preferences and Associations with Demographic Characteristics

Efficient patient-centred quality improvement requires an understanding of the system-wide areas of dissatisfaction along with evidence to identify the programs which can be strategically targeted according to specific patient characteristics and preferences. This cross-sectional study reports the proportion of chronic disease outpatients selecting 23 patient-centred improvement initiatives. Using univariate tests and multivariable logistic regressions, this multi-site study also identifies initiatives differentially selected by outpatients according to clinical and demographic characteristics. A total of 475 outpatients participated (49% response). Commonly selected initiatives included: reducing wait-times (22.3%); convenient appointment scheduling (16.0%); and receiving up-to-date treatment information (16.0%). Within univariate tests, preferences for information and service accessibility initiatives were not significantly associated with specific subgroups. However, seven initiatives were preferred according to age, gender, diagnosis status, and chronic disease type within multivariate models. For example, neurology outpatients were more likely to select assistance to manage psychological symptoms when compared to oncology outpatients (OR: 2.89). Study findings suggest that system-wide programs to enhance information provision are strategic approaches to improve experiences across patient characteristics. Furthermore, a few initiatives can be targeted to specific groups and emphasized the importance of detailed scoping analyses and tailored implementation plans when designing patient-centred quality improvement programs.

Consumer input into health care: Time for a new active and comprehensive model of consumer involvement

To ensure the provision of patient‐centred health care, it is essential that consumers are actively involved in the process of determining and implementing health‐care quality improvements. However, common strategies used to involve consumers in quality improvements, such as consumer membership on committees and collection of patient feedback via surveys, are ineffective and have a number of limitations, including: limited representativeness; tokenism; a lack of reliable and valid patient feedback data; infrequent assessment of patient feedback; delays in acquiring feedback; and how collected feedback is used to drive health‐care improvements.

Patients’ experiences and preferences for opt-in models and health professional involvement in biobanking consent: A cross-sectional survey of Australian cancer outpatients

Many biobanks rely upon patients’ willingness to donate biospecimens and healthcare professionals to initiate opt‐in consent processes. This study explored if: (1) patients accept opt‐in or opt‐out consent models with varying levels of professional involvement; (2) professionals discuss participation with specific patient groups; and (3) this discussion is associated with patient knowledge of biobanking processes.