Designing a Patient Outcome Clinical Assessment Tool for Modified Rankin Scale: “You Feel the Same Way Too”

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The modified Rankin Scale (mRS) is a widely used outcome measure for assessing disability in stroke care; however, its administration is often affected by subjectivity and variability, leading to poor inter-rater reliability and inconsistent scoring. Originally designed for hospital discharge evaluations, the mRS has evolved into an outcome tool for disability assessment and clinical decision-making. Inconsistencies persist due to a lack of standardization and cognitive biases during its use. This paper presents design principles for creating a standardized clinical assessment tool (CAT) for the mRS, grounded in human–computer interaction (HCI) and cognitive engineering principles. Design principles were informed in part by an anonymous online survey conducted with clinicians across Canada to gain insights into current administration practices, opinions, and challenges of the mRS. The proposed design principles aim to reduce cognitive load, improve inter-rater reliability, and streamline the administration process of the mRS. By focusing on usability and standardization, the design principles seek to enhance scoring consistency and improve the overall reliability of clinical outcomes in stroke care and research. Developing a standardized CAT for the mRS represents a significant step toward improving the accuracy and consistency of stroke disability assessments. Future work will focus on real-world validation with healthcare stakeholders and exploring self-completed mRS assessments to further refine the tool.

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Enhancing patient-reported outcomes in stroke care: a path to improved well-being
  • Sep 12, 2025
  • Frontiers in Neurology
  • Irene L Katzan + 3 more

Patient-reported outcomes (PROs) present a valuable opportunity to enhance stroke care by capturing symptoms and experiences often missed by traditional outcome measures like the modified Rankin Scale. Despite similar clinician-reported scores, stroke survivors frequently experience varied symptoms across physical, emotional, and social domains that significantly impact their well-being. This commentary examines the evolving role of PROs in stroke care, highlighting their potential to guide personalized treatment strategies. We present cases demonstrating how PROs reveal meaningful clinical differences among seemingly similar patients and discuss implementation challenges in clinical practice. While barriers exist, including time constraints and the complexity of post-stroke symptoms, solutions such as specialized recovery clinics and digital health programs could help bridge the gap between identifying patient needs and delivering targeted interventions. As stroke care evolves, incorporating PROs may unlock new opportunities for improving outcomes by addressing the comprehensive needs of stroke survivors throughout their recovery journey.

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  • 10.1093/intqhc/mzv038
Processes and outcomes of ischemic stroke care: the influence of hospital level of care.
  • Jun 8, 2015
  • International Journal for Quality in Health Care
  • Yu-Chi Tung + 3 more

Processes of stroke care play an increasingly important role in comparing hospital performance. The relationship between processes of care and outcomes for stroke is unclear. Moreover, in terms of stroke care regionalization, little information is available with regard to the relationships among hospital level of care, processes and outcomes of stroke care. We used nationwide population-based data to examine the relationship between processes of care and mortality and the relationships among hospital level of care, processes and mortality for ischemic stroke. Cross-sectional study. General acute care hospitals throughout Taiwan. A total of 31 274 ischemic stroke patients admitted in 2010 through Taiwan's National Health Insurance Research Database. Processes of care and 30-day mortality. Multilevel models were used after adjustment for patient and hospital characteristics to test the relationship between processes of care and 30-day mortality and the relationships among hospital level of care, processes and 30-day mortality. The use of thrombolytic therapy, antithrombotic therapy, statin treatment and rehabilitation assessment was associated with lower mortality. Hospital level of care was associated with the use of thrombolytic therapy, antithrombotic therapy, statin treatment and rehabilitation assessment, and mortality. These processes of care were mediators of the relationship between hospital level of care and mortality. Outcomes among patients with ischemic stroke can be improved by thrombolytic therapy, antithrombotic therapy, statin treatment and rehabilitation assessment. Among patients with ischemic stroke, admission to designated stroke center hospitals may be associated with lower mortality through better processes of care.

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  • Research Article
  • Cite Count Icon 21
  • 10.1186/s12874-019-0864-z
Value-based healthcare in ischemic stroke care: case-mix adjustment models for clinical and patient-reported outcomes
  • Dec 1, 2019
  • BMC Medical Research Methodology
  • Arvind Oemrawsingh + 12 more

BackgroundPatient-Reported Outcome Measures (PROMs) have been proposed for benchmarking health care quality across hospitals, which requires extensive case-mix adjustment. The current study’s aim was to develop and compare case-mix models for mortality, a functional outcome, and a patient-reported outcome measure (PROM) in ischemic stroke care.MethodsData from ischemic stroke patients, admitted to four stroke centers in the Netherlands between 2014 and 2016 with available outcome information (N = 1022), was analyzed. Case-mix adjustment models were developed for mortality, modified Rankin Scale (mRS) scores and EQ-5D index scores with respectively binary logistic, proportional odds and linear regression models with stepwise backward selection. Predictive ability of these models was determined with R-squared (R2) and area-under-the-receiver-operating-characteristic-curve (AUC) statistics.ResultsAge, NIHSS score on admission, and heart failure were the only common predictors across all three case-mix adjustment models. Specific predictors for the EQ-5D index score were sex (β = 0.041), socio-economic status (β = − 0.019) and nationality (β = − 0.074). R2-values for the regression models for mortality (5 predictors), mRS score (9 predictors) and EQ-5D utility score (12 predictors), were respectively R2 = 0.44, R2 = 0.42 and R2 = 0.37.ConclusionsThe set of case-mix adjustment variables for the EQ-5D at three months differed considerably from the set for clinical outcomes in stroke care. The case-mix adjustment variables that were specific to this PROM were sex, socio-economic status and nationality. These variables should be considered in future attempts to risk-adjust for PROMs during benchmarking of hospitals.

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  • Research Article
  • Cite Count Icon 62
  • 10.1186/s12913-019-4654-4
Scoping review of acute stroke care management and rehabilitation in low and middle-income countries
  • Nov 4, 2019
  • BMC health services research
  • George Lameck Chimatiro + 1 more

BackgroundStroke is a major public health concern, affecting millions of people worldwide. Care of the condition however, remain inconsistent in developing countries. The purpose of this scoping review was to document evidence of stroke care and service delivery in low and middle-income countries to better inform development of a context-fit stroke model of care.MethodsAn interpretative scoping literature review based on Arksey and O’Malley’s five-stage-process was executed. The following databases searched for literature published between 2010 and 2017; Cochrane Library, Credo Reference, Health Source: Nursing/Academic Edition, Science Direct, BioMed Central, Cumulative Index to Nursing and Allied Health Literature (CINNAHL), Academic Search Complete, and Google Scholar. Single combined search terms included acute stroke, stroke care, stroke rehabilitation, developing countries, low and middle-income countries.ResultsA total of 177 references were identified. Twenty of them, published between 2010 and 2017, were included in the review. Applying the Donebedian Model of quality of care, seven dimensions of stroke-care structure, six dimensions of stroke care processes, and six dimensions of stroke care outcomes were identified. Structure of stroke care included availability of a stroke unit, an accident and emergency department, a multidisciplinary team, stroke specialists, neuroimaging, medication, and health care policies. Stroke care processes that emerged were assessment and diagnosis, referrals, intravenous thrombolysis, rehabilitation, and primary and secondary prevention strategies. Stroke-care outcomes included quality of stroke-care practice, functional independence level, length of stay, mortality, living at home, and institutionalization.ConclusionsThere is lack of uniformity in the way stroke care is advanced in low and middle-income countries. This is reflected in the unsatisfactory stroke care structure, processes, and outcomes. There is a need for stroke care settings to adopt quality improvement strategies. Health ministry and governments need to decisively face stroke burden by setting policies that advance improved care of patients with stroke. Stroke Units and Recombinant Tissue Plasminogen Activator (rtPA) administration could be considered as both a structural and process necessity towards improvement of outcomes of patients with stroke in the LMICs.

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  • 10.12968/bjnn.2022.18.3.142
Effectiveness of quality improvement collaboratives in improving clinical processes and patient outcomes in stroke care.
  • Jun 2, 2022
  • British Journal of Neuroscience Nursing
  • Oliver Hamer + 3 more

Stroke remains one of the leading causes of death worldwide. In order to tackle the negative impacts of stroke, a high standard of clinical practice and a commitment to continuous quality improvement is needed across the stroke care pathway. One approach to quality improvement is the formation and implementation of quality improvement collaboratives (QIC's). However, there are several barriers to the implementation of a QIC for stroke care which may impact on their success. This article critically appraises a systematic review which assessed the effectiveness of QIC's for driving improvements in stroke care and explored the barriers to implementing a QIC's to improve care.

  • Research Article
  • Cite Count Icon 12
  • 10.1136/bmjopen-2017-020098
Protocol for a randomised controlled trial to evaluate the effectiveness of the ‘Care for Stroke’ intervention in India: a smartphone-enabled, carer-supported, educational intervention for management of disabilities following stroke
  • May 1, 2018
  • BMJ Open
  • K Sureshkumar + 2 more

IntroductionThe rising prevalence of stroke and stroke-related disability witnessed globally over the past decades may cause an overwhelming demand for rehabilitation services. This situation is of concern for low-income and...

  • Research Article
  • Cite Count Icon 2
  • 10.1016/j.jen.2016.10.016
A Rural Hospital’s Journey to Becoming a Certified Acute Stroke–Ready Hospital
  • Jan 1, 2017
  • Journal of Emergency Nursing
  • Denise C Rhew + 3 more

A Rural Hospital’s Journey to Becoming a Certified Acute Stroke–Ready Hospital

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  • Cite Count Icon 7
  • 10.1055/s-0043-1772679
Improving Patient-Reported Outcomes in Stroke Care using Remote Blood Pressure Monitoring and Telehealth
  • Oct 1, 2023
  • Applied Clinical Informatics
  • Ian M Kronish + 11 more

Background Inequities in health care access leads to suboptimal medication adherence and blood pressure (BP) control. Informatics-based approaches may deliver equitable care and enhance self-management. Patient-reported outcomes (PROs) complement clinical measures to assess the impact of illness on patients' well-being in poststroke care. Objectives The aim of this study was to determine the feasibility of incorporating PROs into Telehealth After Stroke Care (TASC) and to explore the effect of this team-based remote BP monitoring program on psychological distress and quality of life in an underserved urban setting. Methods Patients discharged home from a Comprehensive Stroke Center were randomized to TASC or usual care for 3 months. They were provided with a BP monitor and a tablet that wirelessly transmitted data to a cloud-based platform, which were integrated with the electronic health record. Participants who did not complete the tablet surveys were contacted via telephone or e-mail. We collected the Patient-Reported Outcomes Measurement Information System Managing Medications and Treatment (PROMIS-MMT), Patient Activation Measure (PAM), Neuro-QOL (Quality of Life in Neurological Disorders) Cognitive Function, Neuro-QOL Depression, and Patient Health Questionnaire-9 (PHQ-9). T-tests and linear regression were used to evaluate the differences in PRO change between the arms. Results Of the 50 participants, two-thirds were Hispanic or non-Hispanic Black individuals. Mechanisms of PRO submission for the arms included tablet (62 vs. 47%), phone (24 vs. 37%), tablet with phone coaching (10 vs. 16%), and e-mail (4 vs. 0%). PHQ-9 depressive scores were nominally lower in TASC at 3 months compared with usual care (2.7 ± 3.6 vs. 4.0 ± 4.1; p = 0.06). No significant differences were observed in PROMIS-MMT, PAM, or Neuro-QoL measures. Conclusion Findings suggest the feasibility of collecting PROs through an interactive web-based platform. The team-based remote BP monitoring demonstrated a favorable impact on patients' well-being. Patients equipped with appropriate resources can engage in poststroke self-care to mitigate inequities in health outcomes.

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  • 10.1161/str.45.suppl_1.wp274
Abstract W P274: Developmental Evaluation Enhances Utility of the Toronto Stroke Networks Virtual Community of Practice
  • Feb 1, 2014
  • Stroke
  • Joanne Fortin + 5 more

Background: The Toronto Stroke Networks (TSNs) Virtual Community of Practice (VCoP) was developed to connect stroke healthcare providers (HCPs), enhance professional and organizational stroke expertise, foster implementation of best practices, and improve patient outcomes in stroke care. The VCoP is a secure social media platform fostering cross system interprofessional collaboration (IPC). Purpose: To use formative developmental evaluation to inform further improvement of the VCoP’s content and performance and to measure its efficacy as a KT tool to support IPC. Methods: An evaluation framework was developed based on “Promoting and assessing value creation in communities and networks” (Wengar, 2011). Stroke HCPs from 15 organizations in the TSNs were provided VCoP training to build virtual competence and to seek feedback for enhanced utility. The TSNs Education and KT Implementation Plan for 2013-2014 integrated activities that encourage VCoP use. These activities include co-development of educational material across sites, information sharing between meetings, and to support implementation of specific activities. Qualitative (e.g. value stories, narratives) and quantitative indicators (e.g. membership and usage) data are evaluated. Results: The TSNs VCoP currently has: 287 members and 26 groups (open and private groups with 4-19 members). There are 8 interprofessional discussions, with a total of 20 pre-populated and requested forums. Feedback from the membership has prompted investments to improve search features and identification of members within the site for more efficient collaborations. Uploading of Provincial Stroke Rounds, provision of a Research and Knowledge Translation Widget, and securing a space for HCPs to submit recommended presentations were added to increase the value-add of the site as a one-stop shop for Stroke HCPs seeking stroke care information. Qualitative analysis of value stories demonstrating the efficacy of the VCoP for IPC is in progress and will be available at time of publishing. Conclusions: The VCoP is an innovative approach to enhancing the system of stroke care. This formative developmental evaluation approach has enhanced the utility of the VCoP as a source for stroke information and HCP connections.

  • Research Article
  • Cite Count Icon 2
  • 10.29011/2688-8734.100017
Disparities and Temporal Trends in Stroke Care Outcomes in Patients with Atrial Fibrillation: The FLiPER-AF Stroke Study.
  • Jul 22, 2019
  • International journal of cerebrovascular disease and stroke
  • Chuanhui Dong + 14 more

Atrial Fibrillation (AF) is the most common cardiac cause of ischemic stroke. However, the relation between AF and stroke care outcomes in diverse populations is understudied. We aimed to evaluate sex and race-ethnic disparities associated with AF in hospital stroke outcomes utilizing data from the FLorida PuErto Rico Atrial Fibrillation (FLiPER-AF) Stroke Study. The study included 104,308 ischemic stroke cases with available information on AF status enrolled in a state-wide stroke registry from 2010 to 2016. Multivariable logistic regression models were performed to evaluate the association between AF and stroke outcomes and the modification effects on the associations by sex and by race-ethnicity, adjusted for socio-demographic status, vascular risk factors and stroke severity. AF was present in 23% of ischemic stroke cases. AF was associated with worse disability at discharge (OR=1.11, 95% CI, 1.04-1.18), less discharge to home (OR=0.89, 0.85-0.92), and longer length of hospital stay (LOS>6 days, OR=1.53, 1.46-1.60). Interaction analyses showed that the association between AF and less discharge to home was stronger in women than men (p for interaction <0.001), as well as in FL-whites than in FL-blacks, FL-Hispanics or PR-Hispanics (p for interaction=0.002). The association between AF and prolonged LOS was more prominent in PR-Hispanics than in FL-blacks, FL-Hispanics, or FL-whites (p for interaction <0.001). From 2010 to 2016, the effects of AF on hospital length of stay attenuated (p for interaction<0.001). AF was associated with poor disability at discharge, less discharge to home, and prolonged hospital length of stay for acute stroke care. The effect of AF on length of stay attenuated over time. Sex and race-ethnic disparities were observed in the effect of AF on being less discharge to home and prolonged hospital stay. Further research is needed to identify and modify the biologic and systems of care contributors to these disparities.

  • Research Article
  • Cite Count Icon 26
  • 10.1016/j.jstrokecerebrovasdis.2020.105321
Stroke Care Trends During COVID-19 Pandemic in Zanjan Province, Iran. From the CASCADE Initiative: Statistical Analysis Plan and Preliminary Results
  • Sep 16, 2020
  • Journal of Stroke and Cerebrovascular Diseases
  • Abdoreza Ghoreishi + 46 more

Stroke Care Trends During COVID-19 Pandemic in Zanjan Province, Iran. From the CASCADE Initiative: Statistical Analysis Plan and Preliminary Results

  • Research Article
  • Cite Count Icon 361
  • 10.1161/01.str.0000157596.13234.95
Reliability of the Modified Rankin Scale Across Multiple Raters
  • Feb 17, 2005
  • Stroke
  • J T Lindsay Wilson + 5 more

The modified Rankin Scale (mRS) is widely used to assess global outcome after stroke. The aim of the study was to examine rater variability in assessing functional outcomes using the conventional mRS, and to investigate whether use of a structured interview (mRS-SI) reduced this variability. Inter-rater agreement was studied among raters from 3 stroke centers. Fifteen raters were recruited who were experienced in stroke care but came from a variety of professional backgrounds. Patients at least 6 months after stroke were first assessed using conventional mRS definitions. After completion of initial mRS assessments, raters underwent training in the use of a structured interview, and patients were re-assessed. In a separate component of the study, intrarater variability was studied using 2 raters who performed repeat assessments using the mRS and the mRS-SI. The design of the latter part of the study also allowed investigation of possible improvement in rater agreement caused by repetition of the assessments. Agreement was measured using the kappa statistic (unweighted and weighted using quadratic weights). Inter-rater reliability: Pairs of raters assessed a total of 113 patients on the mRS and mRS-SI. For the mRS, overall agreement between raters was 43% (kappa=0.25, kappa(w)=0.71), and for the structured interview overall agreement was 81% (kappa=0.74, kappa(w)=0.91). Agreement between raters was significantly greater on the mRS-SI than the mRS (P<0.001). Intrarater reliability: Repeatability of both the mRS and mRS-SI was excellent (kappa=0.81, kappa(w) > or =0.94). Although individual raters are consistent in their use of the mRS, inter-rater variability is nonetheless substantial. Rater variability on the mRS is thus particularly problematic for studies involving multiple raters. There was no evidence that improvement in inter-rater agreement occurred simply with repetition of the assessment. Use of a structured interview improves agreement between raters in the assessment of global outcome after stroke.

  • Research Article
  • Cite Count Icon 47
  • 10.1161/01.str.0000245083.97460.e1
Economic Evaluation of Australian Stroke Services
  • Sep 28, 2006
  • Stroke
  • Marjory Moodie + 6 more

Level I evidence from randomized controlled trials demonstrates that the model of hospital care influences stroke outcomes; however, the economic evaluation of such is limited. An economic appraisal of 3 acute stroke care models was facilitated through the Stroke Care Outcomes: Providing Effective Services (SCOPES) study in Melbourne, Australia. The aim was to describe resource use up to 28 weeks poststroke for each model and examine the cost-effectiveness of stroke care units (SCUs). A prospective, multicenter, cohort study design was used. Costs and outcomes of stroke patients receiving 100% treatment in 1 of 3 inpatient care models (SCUs, mobile service, conventional care) were compared. Health-sector resource use up to 28 weeks was measured in 1999. Outcomes were thorough adherence to a suite of important clinical processes and the number of severe inpatient complications. The sample comprised 395 participants (mean age 73 [SD 14], 77% first-ever strokes, males 53%). When compared with conventional care (n=84), costs for mobile service (n=209) were significantly higher (P=0.024), but borderline for SCU (n=102, P=0.08; 12,251 Australian dollars; 15,903 Australian dollars; 15,383 Australian dollars respectively). This was primarily explained by the greater use of specialist medical services. The incremental cost-effectiveness of SCUs over conventional care was 9867 Australian dollars per patient achieving thorough adherence to clinical processes and 16,372 Australian dollars per patient with severe complications avoided, based on costs to 28 weeks. Although acute SCU costs are generally higher, they are more cost-effective than either mobile service or conventional care.

  • Research Article
  • 10.1161/str.43.suppl_1.a2533
Abstract 2533: Statewide System Approach has Positive Impact on Stroke Care
  • Feb 1, 2012
  • Stroke
  • Barbara Cysyk + 6 more

Background and Issues: Approximately 83% of acute-care hospitals in Maryland are designated as primary stroke centers. The Maryland Stroke Center Consortium (MSCC) is a network of representatives from all hospitals in the state of Maryland that have been designated as stroke centers. In collaboration with the Maryland Institute of Emergency Medicine Services Systems (MIEMSS)--the body that provides state oversight, the American Heart Association (AHA), and the Maryland Stroke Alliance (MSA), the MSCC works to improve stroke care outcomes statewide. Since 2007, the MSCC has met bi-monthly to network, review data, mentor, educate, and share best practices. Registry participation and data collection are standardized across the state. Purpose: To determine if a statewide consortium can have a positive impact on the quality of care for patients with stroke via the nursing-focused measures of Dysphagia Screening and Patient Education. Methods: All primary stroke centers in Maryland participate in AHA’s Get with the Guidelines (GWTG) Stroke Program. Data were collected using the internet-based Patient Management Tool TM (Outcome, Inc.). A 4-year retrospective review was performed of the Stroke Core Measures and Dysphagia Screening data in the Maryland Stroke Registry. Results: Although over time, improvement was seen in all Stroke Core Measures at both state and national levels, in 2010, Maryland stroke centers demonstrated a higher level of compliance in seven measures compared to all centers participating in the GWTG stroke registry. Moreover, statistically significant higher levels of compliance were found for Dysphagia Screening (82.1% versus 78.3%, p = &lt;0.01) and Patient Education (85.4% versus 81.1%, p = &lt;0.01). Conclusions: Participation in a statewide consortium, paired with oversight at the state level, results in a positive impact on the quality of stroke care and patient outcomes. The critical thinking, open communication, and sharing of information that occur at the consortium level translate into improved care consistent with evidence-based best practices at individual facilities.

  • Research Article
  • Cite Count Icon 417
  • 10.1161/01.str.32.2.392
Characteristics, outcome, and care of stroke associated with atrial fibrillation in Europe: data from a multicenter multinational hospital-based registry (The European Community Stroke Project).
  • Feb 1, 2001
  • Stroke
  • Maria Lamassa + 11 more

The role of atrial fibrillation (AF) as a determinant of stroke outcome is not well established. Studies focusing on this topic relied on relatively small samples of patients, scarcely representative of the older age groups. We aimed at evaluating clinical characteristics, care, and outcome of stroke associated with AF in a large European sample. In a European Concerted Action involving 7 countries, 4462 patients hospitalized for first-in-a-lifetime stroke were evaluated for demographics, risk factors, clinical presentation, resource use, and 3-month survival, disability (Barthel Index), and handicap (Rankin scale). AF was present in 803 patients (18.0%). AF patients, compared with those without AF, were older, were more frequently female, and more often had experienced a previous myocardial infarction; they were less often diabetics, alcohol consumers, and smokers (all P:<0.001). At 3 months, 32.8% of the AF patients were dead compared with 19.9% of the non-AF patients (P:<0.001). With control for baseline variables, AF increased by almost 50% the probability of remaining disabled (multivariate odds ratio 1.43, 95% CI 1.13 to 1.80) or handicapped (multivariate odds ratio 1.51, 95% CI 1.13 to 2.02). Before stroke, only 8.4% of AF patients were on anticoagulants. The chance of being anticoagulated was reduced by 4% per year of increasing age. AF patients underwent CT scan and other diagnostic procedures less frequently and received less physiotherapy or occupational therapy. Stroke associated with AF has a poor prognosis in terms of death and function. Prevention and care of stroke with AF is a major challenge for European health systems.

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