Patient-driven research priorities for patient-centered measurement.

BACKGROUND: Patient-centred measurement (PCM) emphasizes a holistic approach wherein the voices of patients are reflected in the standardized use of patient-reported outcome and experience measures and are represented throughout the continuum of measurement activities. Given the challenges of routinely integrating patient self-reports into clinical care decisions, the perspectives of all healthcare system stakeholders, especially patients, is necessary to advance the science of PCM. The purpose of the analysis we report on here was to identify patient-driven research priorities for advancing the science of PCM. METHODS: We analyzed data from seven focus groups that were conducted across British Columbia, Canada and that included a total of 73 patients, using qualitative inductive analysis and constant comparative methods. RESULTS: We found that the patients conveyed a desire for PCM to contribute to healthcare decisions, specifically that their individual healthcare needs and related priorities as they see them are always front and centre, guiding all healthcare interactions. The patients' commentaries highlighted intersecting priorities for research on advancing the science of PCM that would help transform care by (1) enhancing the patient-provider relationship, (2) giving voice to patients' stories, (3) addressing inclusivity, (4) ensuring psychological safety, (5) improving healthcare services and systems to better meet patient needs, and (6) bolstering healthcare system accountability. CONCLUSIONS: These priorities provide direction for future research efforts that would be positioned to make progress towards better health, better care, and better use of resources for individuals and for society.

Quality of life of the Canadian population using the VR-12: population norms for health utility values, summary component scores and domain scores.

OBJECTIVES: To estimate Canadian population norms (health utility values, summary component scores and domain scores) for the VR-12. METHODS: English and French speaking Canadians aged 18 and older completed an online survey that included sociodemographic questions and standardized health status instruments, including the VR-12. Responses to the VR-12 were summarized as: (i) a health utility value; (ii) mental and physical component summary scores (MCS and PCS, respectively), and (iii) eight domain scores. Norms were calculated for the full sample and by gender, age group, and province/territory (univariate), and for several multivariate stratifications (e.g., age group and gender). Results were summarized using descriptive statistics, including number of respondents, mean and standard deviation (SD), median and percentiles (25th and 75th), and minimum and maximum. RESULTS: A total of 6761 people who clicked on the survey link completed the survey (83.4% completion rate), of whom 6741 (99.7%) were included in the analysis. The mean health utility score was 0.698 (SD = 0.216). Mean health utility scores tended to be higher in older age groups, ranging from 0.661 (SD = 0.214) in those aged 18-29 to 0.728 (SD = 0.310) in those aged 80+. Average MCS scores were higher in older age groups, while PCS scores were lower. Females consistently reported lower mean health utility values, summary component scores and domain scores compared with males. CONCLUSIONS: This is the first study to present Canadian norms for the VR-12. Health utility norms can serve as a valuable input for Canadian economic models, while summary component and domain norms can help interpret routinely-collected data.

Validation of an Adapted Version of the Veterans RAND 12-Item Health Survey for Older Adults Living in Long-Term Care Homes.

BACKGROUND AND OBJECTIVES: The Veterans RAND 12-Item Health Survey (VR-12) is a generic patient-reported outcome measure of physical and mental health status. An adapted version of the VR-12 was developed for use with older adults living in long-term residential care (LTRC) homes in Canada: VR-12 (LTRC-C). This study aimed to evaluate the psychometric validity of the VR-12 (LTRC-C). RESEARCH DESIGN AND METHODS: Data for this validation study were collected via in-person interviews for a province-wide survey of adults living in LTRC homes across British Columbia (N = 8,657). Three analyses were conducted to evaluate validity and reliability: (1) confirmatory factor analyses were conducted to validate the measurement structure; (2) correlations with measures of depression, social engagement, and daily activities were examined to evaluate convergent and discriminant validity; and (3) Cronbach's alpha (r) statistics were obtained to evaluate internal consistency reliability. RESULTS: A measurement model with 2 correlated latent factors (representing physical health and mental health), 4 cross-loadings, and 4 correlated items resulted in an acceptable fit (root-mean-square error of approximation = 0.07; comparative fit index = 0.98). Physical and mental health were correlated in expected directions with measures of depression, social engagement, and daily activities, though the magnitudes of the correlations were quite small. Internal consistency reliability was acceptable for physical and mental health (r > 0.70). DISCUSSION AND IMPLICATIONS: This study supports the use of the VR-12 (LTRC-C) to measure perceived physical and mental health among older adults living in LTRC homes.

The Use of Generic Patient-Reported Outcome Measures in Emergency Department Surveys: Discriminant Validity Evidence for the Veterans RAND 12-Item Health Survey and the EQ-5D.

OBJECTIVES: This study aimed to compare discriminant validity evidence of 2 generic patient-reported outcome measures (PROMs), the Veterans RAND 12-Item Health Survey (VR-12) and level 5 of EQ-5D (EQ-5D-5L), for use in emergency departments (EDs). METHODS: Data were obtained via a cross-sectional survey of 5876 patients in British Columbia (Canada) who completed a questionnaire after visiting an ED in 2018. We compared the extent to which the VR-12 and the EQ-5D-5L distinguished among groups of ED patients with different levels of comorbidity burden and self-reported physical and mental or emotional health status. Multivariable logistic regression was used to evaluate the ability of the 2 PROMs to identify patients presenting with a mental health (MH) condition. RESULTS: All the measures produced small effect sizes (ESs) for discriminating comorbidity levels (R2 range: 0.00 [VR-12 mental component summary {MCS}] to 0.10 [VR-12 physical component summary score]). The EQ-5D visual analog scale offered the largest ES for discriminating self-reported physical health (R2 = 0.48), whereas the MCS, the VR-12 MH domain, and the EQ-5D-5L anxiety/depression dimension had the largest ESs for discriminating self-reported mental or emotional health (R2 = 0.42, 0.40, and 0.38, respectively). The MCS produced a medium ES (R2 = 0.42) along with the VR-12 utility score (R2 = 0.27) compared with the EQ-5D-5L index (R2 = 0.19). Having a MH condition was predominantly identified by the MCS (Pratt index = 0.56). CONCLUSIONS: The VR-12 PROM provides a more comprehensive measurement of MH than the EQ-5D-5L, which is important to inform healthcare service needs for patients who present in EDs with MH challenges.

Measuring Health Status in Long-Term Residential Care: Adapting the Veterans RAND 12 Item Health Survey (VR-12©).

Objectives: Measuring the perceived mental and physical health status of older adults living in long-term residential care (LTRC) is central to patient-centered care. This study examined the qualitative content validity of the Veterans RAND 12 Item Health Survey (VR-12) for LTRC and, based on the findings, the authors developed an adapted version of the generic patient-reported outcome measure for this population.Methods: Content validity was evaluated in two steps: (1) initial resident feedback (n = 9) and research team consensus discussions and (2) cognitive interviews with residents (n = 18) and a research team consensus discussion. The cognitive interviews examined comprehension, acceptability, and relevance of the VR-12 items.Results: Two VR-12 items had limited acceptability in the LTRC setting, the reference to "work" in items was irrelevant to residents, and the lack of a frame of reference ("During the past week … ") impacted comprehension of several items.Conclusions: Study findings informed the development of an adapted version of the VR-12 for older adults living in Canadian LTRC homes and provided content validity evidence regarding its relevance and appropriateness for this population.Clinical implications: Measuring the health status of older adults living in LTRC can help to monitor changes in health status over time and support person-centered care.

Knowledge translation resources to support the use of quality of life assessment tools for the care of older adults living at home and their family caregivers.

PURPOSE: To support the use of quality of life (QOL) assessment tools for older adults, we developed knowledge translation (KT) resources tailored for four audiences: (1) older adults and their family caregivers (micro), (2) healthcare providers (micro), (3) healthcare managers and leaders (meso), and (4) government leaders and decision-makers (macro). Our objectives were to (1) describe knowledge gaps and resources and (2) develop corresponding tailored KT resources to support use of QOL assessment tools by each of the micro-, meso-, and macro-audiences. METHODS: Data were collected in two phases through semi-structured interviews/focus groups with the four audiences in Canada. Data were analyzed using qualitative description analysis. KT resources were iteratively refined through formative evaluation. RESULTS: Older adults and family caregivers (N = 12) wanted basic knowledge about what "QOL assessment" meant and how it could improve their care. Healthcare providers (N = 13) needed practical solutions on how to integrate QOL assessment tools in their practice. Healthcare managers and leaders (N = 14) desired information about using patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in healthcare programs and quality improvement. Government leaders and decision-makers (N = 11) needed to know how to access, use, and interpret PROM and PREM information for decision-making purposes. Based on these insights and evidence-based sources, we developed KT resources to introduce QOL assessment through 8 infographic brochures, 1 whiteboard animation, 1 live-action video, and a webpage. CONCLUSION: Our study affirms the need to tailor KT resources on QOL assessment for different audiences. Our KT resources are available: www.healthyqol.com/older-adults .

An economic valuation technique identified different inpatient care experience as priorities for older Canadians than a traditional approach.

OBJECTIVES: To (1) estimate the relative value of older adults' healthcare experiences based on the Canadian Patient Experience Survey for Inpatient Care (CPES-IC) using an economic valuation technique, and (2) compare the results with those of a conventional key-driver analysis of healthcare experiences based on bivariate correlations. STUDY DESIGN AND SETTING: An online survey of 1,074 Canadians aged 60 and older who had been hospitalized within five years. Participants completed the CPES-IC and a best-worst scaling (BWS) valuation task. BWS data were analyzed using a conditional logit model. These results were compared to a conventional key-driver analysis that estimates importance through Spearman's correlations between experiences and a global rating of overall experience. RESULTS: The valuation approach found that the three experiences most valued by patients were: that staff seemed informed and up-to-date about their hospital care, doctors explained things in a way that they could understand, and that they got all the information they needed about their care and treatment. Three of the top five most valued experiences from the valuation approach were among the top five in the key driver analysis. However, there were noteworthy differences in rank order. CONCLUSION: The results of the valuation exercise can inform local and/or system level quality improvement efforts by identifying priorities from an economic evaluation point of view, which are different than those based on a conventional key-driver analysis. Given the degree of uncertainty in estimates both the rank order and confidence intervals should be used to guide decision-making.

The patient experience of peripheral intravenous therapy: development of a patient survey, initial findings, and next steps.

Peripheral intravenous cannulation (PIVC) is one of the most commonly performed invasive procedures in healthcare and can be a stressful experience for patients. Co-creating a patient journey map of intravenous therapy (IVT) together with patients highlighted the need to better understand patient experiences of IVT and informed the development of a patient-reported experience measure of intravenous therapy (IVT). The British Columbia (BC) Lower Mainland IVT Working Group, the BC Office of Patient-Centred Measurement and the provincial supplier of IVT products, hypothesized patient feedback about their IVT experiences would garner new insights to improve both patient experiences and outcomes related to IVT. Leveraging BC's province-wide, coordinated, scientifically rigorous patient-centred measurement program (BCPCM), a module of eight questions were developed, tested and fielded with the 2018 BC Emergency Department patient survey (n=14 076). Weekly monitoring of patient responses, through the BCPCM's web-based Dynamic Analysis and Reporting Tool (the DART), showed key themes and opportunities for improvement, leading to a test of change that introduced a patient information card (Why do I need an IV, What will happen when I get an IV, Tell a nurse if the following happens). This paper outlines the development of the IVT patient experience survey, and presents initial findings and the next steps to take action on the results. Additional data collection is now underway to solicit patient feedback of IVT across BC in outpatient cancer care and acute care hospital settings.

Using Patient- and Family-Reported Outcome and Experience Measures Across Transitions of Care for Frail Older Adults Living at Home: A Meta-Narrative Synthesis.

BACKGROUND AND OBJECTIVES: Our aim was to create a "storyline" that provides empirical explanation of stakeholders' perspectives underlying the use of patient- and family-reported outcome and experience measures to inform continuity across transitions in care for frail older adults and their family caregivers living at home. RESEARCH DESIGN AND METHODS: We conducted a meta-narrative synthesis to explore stakeholder perspectives pertaining to use of patient-reported outcome and experience measures (PROMs and PREMs) across micro (patients, family caregivers, and healthcare providers), meso (organizational managers/executives/programs), and macro (decision-/policy-makers) levels in healthcare. Systematic searches identified 9,942 citations of which 40 were included based on full-text screening. RESULTS: PROMs and PREMS (54 PROMs; 4 PREMs; 1 with PROM and PREM elements; 6 unspecified PROMs) were rarely used to inform continuity across transitions of care and were typically used independently, rarely together (n = 3). Two overarching traditions motivated stakeholders' use. The first significant motivation by diverse stakeholders to use PROMs and PREMs was the desire to restore/support independence and care at home, predominantly at a micro-level. The second motivation to using PROMs and PREMs was to evaluate health services, including cost-effectiveness of programs and hospital discharge (planning); this focus was rarely at a macro-level and more often split between micro- and meso-levels of healthcare. DISCUSSION AND IMPLICATIONS: The motivations underlying stakeholders' use of these tools were distinct, yet synergistic between the goals of person/family-centered care and healthcare system-level goals aimed at efficient use of health services. There is a missed opportunity here for PROMs and PREMs to be used together to inform continuity across transitions of care.

A Practical Guide for Item Generation in Measure Development: Insights From the Development of a Patient-Reported Experience Measure of Compassion.

BACKGROUND AND PURPOSE: Although various measure development guidelines exist, practical guidance on how to systematically generate items is nascent. This article provides practical guidance on item generation in measure development and the use of a Table of Specifications (TOS) in this process. METHODS: In addition to a review of the literature, the item generation process within an ongoing study to develop a valid and reliable patient-reported measure of compassion is provided. RESULTS: Consensus on an initial pool of 109 items and their response scale was achieved with the aid of a TOS. CONCLUSIONS: Dynamic, experiential, and relational care constructs such as compassion lie at the heart of nursing. Practical guidance on item generation is needed to allow nurses to identify, measure, and improve compassion in research and practice.

Initial Validation of a Patient-Reported Measure of Compassion: Determining the Content Validity and Clinical Sensibility among Patients Living with a Life-Limiting and Incurable Illness.

BACKGROUND: Although compassionate care is considered a cornerstone of quality palliative care, there is a paucity of valid and reliable measures to study, assess, and evaluate how patients experience compassion/compassionate care in their care. OBJECTIVE: The aim was to develop a patient-reported compassion measure for use in research and clinical practice with established content-related validity evidence for the items, question stems, and response scale. METHODS: Content validation for an initial 109 items was conducted through a two-round modified Delphi technique, followed by cognitive interviews with patients. A panel of international Subject Matter Experts (SMEs) and a Patient Advisory Group (PAG) assessed the items for their relevancy to their associated domain of compassion, yielding an Item-level Content Validity Index (I-CVI), which was used to determine content modifications. The SMEs and the PAG also provided narrative feedback on the clarity, flow, and wording of the instructions, questions, and response scale, with items being modified accordingly. Cognitive interviews were conducted with 16 patients to further assess the clarity, comprehensibility, and readability of each item within the revised item pool. RESULTS: The first round of the Delphi review produced an overall CVI of 72% among SMEs and 80% among the PAG for the 109 items. Delphi panelists then reviewed a revised measure containing 84 items, generating an overall CVI of 84% for SMEs and 86% for the PAG. Sixty-eight items underwent further testing via cognitive interviews with patients, resulting in an additional 14 items being removed. CONCLUSIONS: Having established this initial validity evidence, further testing to assess internal consistency, test-retest reliability, factor structure, and relationships to other variables is required to produce the first valid, reliable, and clinically informed patient-reported measure of compassion.

Patient-Centred Measurement in British Columbia: Statistics without the Tears Wiped Off.

At the heart of every data point in healthcare is a person. British Columbia's (BC) province-wide, coordinated survey program, established in 2002, gives people who use BC's healthcare services a voice in improving the quality of the care and services they receive. Survey data or statistics are presented without the tears wiped off by integrating quantitative results along with a "human" voice or story annotated directly into reports to illustrate the numerical feedback. In this way the data represent the true lived experiences of people who use our healthcare services and allow us to evaluate our progress towards providing truly patient-centred care. After over a decade of measurement and reporting of patient experiences, BC will pioneer a new approach. People who receive healthcare services in BC will be asked to provide feedback across their entire episode of care. And, because routine measurement of patient experiences and patient outcomes in healthcare is a provincial strategic objective, patients will be asked to assess both their experiences of care (patient self-reported experiences) and their outcomes of care (patient self-reported outcomes). This change in measurement strategy builds on 13 years of continuous improvement in patient-centred data collection, reporting and action based on feedback from BC's patients and families.