The use of Patient-Reported Measures in the Province of Alberta, Canada

Transcription

1 The use of Patient-Reported Measures in the Province of Alberta, Canada An Environmental Scan O Brien Institute for Public Health, Cumming School of Medicine, University of Calgary Calgary, Alberta Canada

2 Table of Contents I. Acknowledgements... 2 II. Executive Summary... 3 Highlights III. Background... 4 IV. Objectives... 5 V. Methods... 5 Survey Development Data Collection Data Analysis VI. Results... 6 VII. Discussion... 9 VIII. Appendix IX. References P AGE

3 Acknowledgements Dr. Maria J Santana contributed to the conception and design, interpretation of data, drafted the article and revised it critically for important intellectual content. Danielle A Southern contributed to the conception and design, analysis and interpretation of data, drafted the article and revised it critically for important intellectual content. Rachel J Jolley contributed to analysis and interpretation of the data, drafted the article and revised it critically for important intellectual content. All above authors gave final approval of the version to be published, and agreed to act as guarantor of the work (ensuring that questions related to any part of the work are appropriately investigated and resolved). 2 P AGE

4 Executive Summary Patient-centred care is at the forefront of discussion in research and practice, however little is known about the use of patient reported measures. We sought to identify the types of patient reported measures collected and how they are applied across the province of Alberta. We performed a structured environmental scan using a web-based survey between June 5th 2014 and March 31st Questions surveyed included types of measures, settings collected in, and socio-demographic questions of the respondent (e.g. job position and organization). We identified key users through Alberta Health Services, Alberta Health and Campus Alberta partners networks. Data analysis included descriptive and simple reporting of means and proportions of the survey responses. Through this environmental scan, we identified a wide array of measures collected in a diverse set of patient populations. A standardized set of patient reported measures to implement and benchmark in clinical practice across healthcare institutions should be created to measure and understand patient-centred care. Highlights 31% 33% 64% Regional Health Authority Healthcare Delivery Organization Academic Institution 15 different types of PROMs 8 different types of PREMs 3 P AGE

5 Background Patient-centred care is increasingly a priority in discussions about quality of care and healthcare services. The Institute of Medicine (IOM) in its landmark report, Crossing the Quality Chasm, defines patient centred care as care that is respectful and responsive to individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions. (1). The measures from patient perspectives however, have not been routinely integrated into the evaluation of healthcare system performance, and rather system performance measurement has traditionally relied on routinely collected clinical data including surgical procedures and outcomes and laboratory data (2-4). Patient reported measures were developed to support the evaluation of the quality of health care received by patients and families, and have been used to monitor improvement in healthcare services (5,6). Patient-reported experience measures (PREMs) and patient-reported outcome measures (PROMs) are examples of patient reported measures used to understand and measure the patient view-point. PROMs and PREMs are validated questionnaires that place the values and perspectives of the patient at the center. While PROMs are concerned with the outcomes of a patient s health condition or disability, PREMs are concerned with a patients experiences with healthcare delivery. A diverse group of measures fall under the PROMs umbrella, including psychological and emotional health indicators, adverse reactions and symptoms (7). Generally, PROMs include measures of symptom burden that report the frequency, severity, and impact of symptoms (8-10). In clinical practice PROMS can be used as a surveillance system; for instance, patients can report their symptoms and health status periodically, via their home computer or their electronic mobile system and be monitored for changes in health, leading to adjustments in the frequency of clinic visits depending on how their health changes (8-10). PROMs data can be stored in the patients electronic medical records (EMRs) and integrated with other patient clinical data (8-10). PREMs may provide a resource for clinicians for including the patients perspective of their symptoms, quality of life and disease activity in decisions about their management (10-12). 4 PAGE

6 Both PROMs and PREMs should play a central role in health policy as a lever to improve the quality of patient oriented research (8-13). However, despite the discussion surrounding the collection and use of PROMs and PREMs in Canada, the diversity and resulting heterogeneity of these measures impedes benchmarking across institutions and provinces (14). In addition, standardized approaches for linking PROMs and PREMs data with EMRs is far from present (14). Objectives In response to this challenge, we undertook a provincial initiative that included conducting an environmental scan to explore the collection of PROMs and PREMs and the linkage of this data to EMRs, disease registries, and administrative data in the province of Alberta, Canada. In this study, we sought to determine the purpose of using the measures (e.g. research, quality improvement; clinical care), identify the different uses and applications and explore the standardization of the use of measures across the province of Alberta. Methods Survey Development An environmental scan is a tool that can be used to collect information and data to assess what is occurring in the community thus designing research and health programs uniquely tailored to the community needs. Through the Strategic Clinical Networks (SCNs) with the support of the provincial health authority, Alberta Health Services (AHS), Alberta is moving forward and leading patient oriented research in Canada. To assess what information is available and what is being collected within Alberta, a structured environmental scan using a web-based survey was developed through collaboration between the research team and the AHS SCNs. The webbased survey was created in fluid survey (15) ( including both free text writing boxes and open-ended questions that were aimed to inform the objectives of the study 5 P AGE

7 about the use of PROMs and PREMs. The survey was structured to not provide any information to the participants regarding the types of measures that could be measured, or to influence any response in this respect free text writing boxes were used for questions specifically towards types of measures used if any. The survey included socio-demographic questions, such as job position (e.g., quality improvement manager) and organization (e.g., Health Quality Council Alberta). (Appendix) outlines the components from the survey that were collected. Data Collection We used a snowball sampling technique to identify and survey PROMs and PREMS users. Key users were identified through both the SCN leads and through information collected during the Café scientific at the Campus Alberta Health Outcomes and Public Health event (May 5 th, 2014, University of Calgary) (16). An additional list of users was identified from a local symposium on PROMs and PREMs (14). Identified users were invited to participate via and a link to the web-based survey with instructions on how to complete this was included in the message. After the first wave of invites, reminder s were sent to any non-respondents up to one week before the deadline for completion of the survey. The survey ran from June 5 th 2014 through March 31 st Data Analysis Survey responses were downloaded and Microsoft Excel was used to perform analyses and to create bar charts and tables of aggregated responses. Data analysis was purely descriptive with simple reporting of means and proportions. Results We identified a list of 70 stakeholders to contact across the province of Alberta, a maximum of 7 reminder s were sent to those who did not respond initially the survey. Forty-one individuals participated in the survey (59%), with 36 having identified as studying or collecting PROMs and/or PREMs. The majority of respondents belonged to a university/academic institution (64%), 6 P AGE

8 33% belonged to a healthcare delivery organization and 31% belonged to a regional health authority (Table 1). Sixty-one percent held the role of researcher with 22% in the roles of each senior managers and/or clinicians. Table 1: Organizations and Roles Organizations N (%) University, academic health science centre or research 24 (58.5%) institute Health care/delivery organization (e.g., hospital, health 12 (29.3%) management organization) Regional health authority/local health integration 11 (26.8%) network Government 5 (12.2%) Other 4 (9.8%) Health quality council or patient safety institute 1 (2.4%) Role in Organizations Researcher 24 (58.5%) Senior Management (e.g. CEO, VP, Director) 9 (22.0%) Analyst / Statistician 4 (9.8%) Project 3 (7.3%) Coordinator/Manager Program Lead (e.g., 3 (7.3%) Manager) Other 3 (7.3%) Thirty three (91.7%) of respondents who identified as collecting PROMs or PREMs indicated the use of health related quality of life measures (e.g. EQ-5D) (17), 18 (50%) identified as collecting PREMS (e.g. Consumer Assessment of Healthcare Providers and Systems- CAHPS Survey) (18), and 7 (19.4%) reported other measures collected. The specific measures identified by respondents for both PROMS and PREMS can be seen in the figures below. The EQ-5D was the most common measure identified (51.5%) collected by those using PROMs whereas, CAHPS and its several versions was the most common PREM collected (22.2%). The indicated methods frequently used to collect PROMs and PREMs were by phone (50%) or in-person (50%) using paper and pencil, followed by online survey (36%) and by mail (33%). 7 P AGE

9 30 25 Types of PROMS collected Frequency Types of PREMS collected Frequency The types of patient population were varied. General populations included Albertan emergency department patients and inpatients to acute care facilities, elderly patients, and children. Specific cohorts included patients with diabetes, surgical patients, patients with 8 P AGE

10 chronic obstructive pulmonary disease (COPD), patients with osteoarthritis, patients with chronic pain, patients admitted to intensive care unit, patients with hip and knee problems, cardiovascular patients, mentally disordered offenders, patients receiving concurrent disorders treatment for addiction and mental health issues, patients with rheumatoid arthritis, families with young children, gynecologic cancer patients, high risk patients, hospice patients, intensive palliative care unit patients and patients who come in contact with SCN projects. The main reason for collection of these measures was for quality improvement (72%) and/or research (72%). Forty-four percent of measures were collected for clinical practice (e.g., Health Utilities Index in lung transplant clinics). Some additional, less common, reasons for collection were identified as administrative purposes, evaluation and/or surveillance. Discussion This provincial environmental scan identified both the users of PROMs and PREMs in the province of Alberta. The scan also identified the PROMs and PREMs actively implemented across Alberta as well as it described the purpose of these measures. Through this environmental scan, we determined that there is a wide array of organizations collecting PROMs and PREMs and a diversity of measures being used across the province with the majority collected for healthrelated quality of life measures (specifically EQ-5D) and a smaller proportion collected for patient experience (specifically CAHPs and Systems-CAHPs). This study may mirror the use of PROMs and PREMs collected and implemented in practice in the national and even international landscape. At a national level, in Canada, different jurisdictions are collecting different measures. In British Columbia for instance, the University of British Columbia Centre for Health Services and Policy Research has reported on the different items and scales used in publicly available questionnaires to measure patient experiences in primary care settings (19). At the national level, the Canadian Institute for Health Information (CIHI) has developed a preliminary set of core patient experience measures the Canadian Patient 9 PAGE

11 Experience Reporting systems (CPERs) (20-22). Alberta is one of the provinces where CPERs has been collected routinely in hospitalized patients (21). Another example is a patient experience measure to use in primary care available in an array of languages developed by Health Quality Ontario (23). Last February, CIHI gather stakeholders across the country to share the measures most commonly used in Canada (21, 22). Undoubtedly, CIHI with their initiative in PREMs and the development of CPERs will drive Canada towards a patient centric country. The first step in standardizing the use of PROMs and PREMs is in understanding the multitude of PROMs and PREMs that exist along with their strengths and weaknesses. For instance the EQ-5D is a generic standardized measure for health outcomes that is widely used as it can be applied and compared across many patient groups (25) and it has a low burden of completion on patients. As well, the utilities scores from the EQ-5D are used in cost-utility analysis and by policy makers to evaluate healthcare programs (17). However, the EQ-5D has substantial ceiling effects and attenuated responsiveness (17). Another generic outcome measure used in Canada is the SF-36 that presents substantial floor effects and therefore attenuated responsiveness in cohorts with lots of moderately and severely burdened patients (24). These measures have commonalities in terms of the items and dimensions that they measure (e.g. pain, ambulation, etc.) however patient reporting systems must be used in a manner as to not burden patients or provide information that is not valuable to the patients or the clinicians which could potentially misdirect the focus of the clinical encounter (25). Understanding the strengths and weaknesses of these measures is very important when deciding what to use in terms of developing a standard set of PROMs and PREMs that could translate across disease- specific populations and give meaningful, useable information that can be utilized by the patients, clinicians and healthcare system. Issues that may hinder the standardization of PROMs are that those collected in clinical practice may be highly specific to a disease condition. Examples include cancer care-specific instruments such as the Functional Assessment of Cancer Therapy - General (FACT-G) (26, 27). 10 P AGE

12 The FACT-G evaluates both functional dimensions and global quality of life, however each was developed with specific involvement from cancer patients and include symptoms and treatments particular to cancer. There is evidence that PROMs can predict survival, for instance the FACT-G (28) and the HUI (29). Our study identified multiple populations of patients including both disease-specific (COPD, diabetes, osteoarthritis, gynecologic cancer, mental health, and rheumatoid arthritis) and setting-specific patients (ICU, surgical, hospice/long-term care, intensive palliative care unit). In order to understand the scope of disease-specific PROMs, identifying the different types of measures collected within these patient-specific settings will aid in determining if they can be translated and standardized across the different clinical care settings and different patient cohorts. This environmental scan also highlights the increasing use of PROMs and PREMs by individual research teams and clinics, however these are being collected in individual data repositories with some linked to highly specific clinical /medical record data for particular patient cohorts. This linking of PROMs and PREMs data to electronic medical record data could be an important step forward in utilizing and standardizing these measures to inform multiple stakeholders, including healthcare providers, managers and patients in facilitating and supporting multiple tasks, including improving clinical care, enhancing quality improvement, research, and public reporting. Recently, major federal agencies such as the National Institutes of Health (NIH), Agency for Healthcare Research and Quality (AHRQ), Patient Centered Outcomes Research Institute (PCORI), and the Food and Drug Administration (FDA) have developed systems to link EMRs to the collection of PROMs and PREMs data. Our study has some limitations. First, our scan used a snowball sampling method. This method can produce non-representative study samples. For the purposes of this study, such a sample is actually quite desirable, because we are seeking the views of invested stakeholders and the limited number of researchers studying patient oriented outcomes and experiences in Alberta seem to be concentrated at Universities and Organizations well known to the research 11 PAGE

13 community. Second, we had a large number of non-respondents (41%). Because this was a snowball sample we over sampled our eligible population and therefore those that did not respond provided other contacts who they felt better represented our survey eligibility. The array of measures used in diverse patient population makes difficult to standardize and therefore benchmark across healthcare institutions across the province. The results from this scan are important as it highlights the problems revealing how far Alberta is from providing patientcentred care. We hope that the new initiative, strategy for patient oriented research (SPOR) - a multimillion endeavor- will lead not only Alberta but the entire country towards a new way of providing care, care that is respectful to patients and includes the patient s voice. 12 P AGE

14 Appendix Environmental Scan Survey Components Component Collection or study of patient reported outcome (PROMs) and/or experience (PREMs) measures Type of organization Role in the organization Response categories Y/N Government Regional health authority/local health integration network Health quality council or patient safety institute Health care/delivery organization Professional association University, academic health science center/research institute Insurance company, program or fund Health information technology organization or Vendor Other Senior Management (e.g., CEO, VP, Director) Program Lead (e.g., Manager) Analyst / Statistician Project Coordinator/Manager Health Care Provider / Clinician Researcher Student Other Patient reported outcomes collected Health-related quality of life (e.g., EQ-5D) - specify measure Patient Experience (e.g., CAHPS) - specify measure Other Population for which the measures are Free text collected Collection methods used Free text How data is collected Phone Mail Online Other How data is stored Single Spreadsheet (e.g. excel) On servers (note whether seperate tables) Paper records Other Data Dictionaries/Manuals available Y/N 13 P AGE

15 Reasons for data collection How data is currently used Outputs from the data Additional documentation related to the data Name of database Contact/Principal Investigator of data Research Quality Improvement Clinical Practice Administrative Other Free text Free text Free text Free text Free text 14 P AGE

16 References 1. Institute of Medicine Committee on the Quality of Health Care in America. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington DC: National Academy Press; Basch E, Spertus J, Adams Dudley R, Wu A, Chuahan C, Cohen P, Smith ML, Black N, Crawford A, Christensen A, Blake K, Goertz C. Methods for Developing Patient-Reported Outcome-Based Performance Measures (PRO-PMs). Value in Health 2015; 18 (4): Greenhalgh, J., & Meadows, K. (1999). The effectiveness of the use of patient-based measures of health in routine practice in improving the process and outcomes of patient care: A literature review. Journal Evaluation Clinical Practice, 5, Patient Reported Outcomes (PROs) in Performance Measurement. National Quality Forum. January 10, Reported_Outcomes_in_Performance_Measurement.aspx. Accessed on September 29, Weldring T, Smith SMS. Patient-Reported Outcomes (PROs) and Patient-Reported Outcome Measures (PROMs). Health Services Insights. 2013; 6: Black N. Patient reported outcome measures could help transform healthcare. BMJ 2013; 346:f Guidance for industry. Patient-reported outcome measures: Use in medical products development to support labeling claims Snyder C F, Aaronson N K, Choucair A K, et al. Implementing patient-reported outcomes assessment in clinical practice: A review of the options and considerations. Quality Life Research 2012; 21: User s Guide to Implementing Patient-reported Outcomes Assessment in Clinical Practice. Aaronson N, Elliot T, Greenhalgh J, Halyard M, Hess R, Miller D, Reeve B, Santana M, Snyder C. Accessed October 30, P AGE

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