An International Standard Set of Patient-Centered Outcome Measures After Stroke

Salinas, Joel; Sprinkhuizen, Sara M.; Ackerson, Teri; Bernhardt, Julie; Davie, Charlie; George, Mary G.; Gething, Stephanie; Kelly, Adam G.; Lindsay, Patrice; Liu, Liping; Martins, Sony; Morgan, Louise; Norrving, Bo; Ribbers, Gerard M.; Silver, Frank L.; Smith, Eric E.; Williams, Linda S.; Schwamm, Lee H

doi:10.1161/strokeaha.115.010898

Cited by 188 publications

(183 citation statements)

References 30 publications

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“…29 Registry expertise and experience shared across countries could stimulate further development in how to use comprehensive process and results data in improving, for example, stroke care. 30 In Sweden, one of the limitations of registries such as Riksstroke is evidently the burden of registering data. 29 This is most likely reflected in that merely 65% of the Riksstroke respondents considered the gain from partaking in the registry, justifying the resources spent on working with it.…”

Section: Discussionmentioning

confidence: 99%

“…The following indexes, serving as independent variables, were constructed to capture: Support from Outer Setting; Management Request for Registry Data; Management Involvement in Registry-based Quality Improvement; Data Quality and Usefulness, and Resources. In addition, a number of single questions (items8,24,28,29,30,31 and 46) were included as independent variables comprising: the unit's local results; support from the local department and the registry; simplicity of retrieving data from the registry and explaining the results to colleagues and managers; motivation and colleagues' interest in Riksstroke data.Validation of indexesA factor analysis was conducted using SPSS V.23 to validate that our indexes contained relevantly grouped individual items. The factors were first extracted using direct oblimin rotation.…”

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confidence: 99%

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Factors facilitating a national quality registry to aid clinical quality improvement: findings of a national survey

Eldh¹,

Wallin

Fredriksson

et al. 2016

BMJ Open

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Objectives: While national quality registries (NQRs) are suggested to provide opportunities for systematic follow-up and learning opportunities, and thus clinical improvements, features in registries and contexts triggering such processes are not fully known. This study focuses on one of the world's largest stroke registries, the Swedish NQR Riksstroke, investigating what aspects of the registry and healthcare organisations facilitate or hinder the use of registry data in clinical quality improvement. Methods: Following particular qualitative studies,we performed a quantitative survey in an exploratory sequential design. The survey, including 50 items on context, processes and the registry, was sent to managers, physicians and nurses engaged in Riksstroke in all 72 Swedish stroke units. Altogether, 242 individuals were presented with the survey; 163 responded, representing all but two units. Data were analysed descriptively and through multiple linear regression.

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Section: Discussionmentioning

confidence: 99%

mentioning

confidence: 99%

Factors facilitating a national quality registry to aid clinical quality improvement: findings of a national survey

Eldh¹,

Wallin

Fredriksson

et al. 2016

BMJ Open

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“…A previous review included studies up to 2007, 3 so we reviewed studies from 2007 onwards that examined sex differences in patient reported outcome measures (PROMs) at ≤12 months after stroke, including activity limitations, HRQoL, participation restriction, impaired cognition, and mood. 6 Full results tables are shown in the online-only Data Supplement. …”

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confidence: 99%

Focused Update of Sex Differences in Patient Reported Outcome Measures After Stroke

Gall

Phan

Madsen

et al. 2018

Stroke

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W omen experience worse outcomes after stroke than men 1 despite their lower age-adjusted incidence of stroke.2 Previous reviews of sex differences in select stroke outcomes, including activity limitations, 3-5 participation restriction, 4 poststroke depression (PSD), 3 and health-related quality of life (HRQoL), 3,4 demonstrated that women had worse outcomes than men across many of these measures. Women's greater age and stroke severity, as well as poorer prestroke function, seem to contribute to the sex difference in outcomes, but data on other contributing factors are limited.4 Existing reviews included studies published >5 years ago, and given the rapid increase in the number of studies addressing sex differences in stroke outcomes, an updated review is warranted. MethodsFull details of our methods are provided in the online-only Data Supplement. A previous review included studies up to 2007, 3 so we reviewed studies from 2007 onwards that examined sex differences in patient reported outcome measures (PROMs) at ≤12 months after stroke, including activity limitations, HRQoL, participation restriction, impaired cognition, and mood. 6 Full results tables are shown in the online-only Data Supplement. Results Activity LimitationsOf 1875 articles identified, 22 studies (3 population based) that were designed to examine sex differences (Results and Table I in the online-only Data Supplement) met criteria for inclusion. The most common instrument to assess activity limitations was the modified Rankin Scale, followed by the Barthel Index.In 8 studies including ischemic and hemorrhagic strokes, unadjusted estimates showed that women had more activity limitations than men through significantly lower odds of good outcome (odds ratio [OR] range: 0.44-0.61) 7-9 or greater odds of poor outcome (OR range: 1.29-1.62).10-14 In multivariable adjusted analyses, women had worse outcome than men with significantly lower odds of good outcome (OR range: 0.37-0.75) or greater odds of poor outcome (OR range: 1.17-1.74). 7,8,10,12,13 In 2 studies, there was no statistically significant difference between women and men.11,14 Adjustment for covariates, most commonly age, stroke severity, comorbidities, and prestroke function, reduced the associations between 9% and 20%, suggesting these factors partly explain the greater activity limitations for women after stroke.In 11 studies of ischemic stroke ( Table I in the online-only Data Supplement), women generally had worse outcome than men demonstrated by greater odds of poor outcome (mostly modified Rankin Scale ≥3 versus <3; range in ORs: 1.13-2.40) or lower odds of good outcome (eg, modified Rankin Scale ≤1 versus >1 or independent walking).15-25 Among 13 multivariable adjusted comparisons between men and women (some studies had >1 comparison), women's significantly worse outcome compared with men persisted in 7 comparisons with a greater odds of poor outcome (range, 1.30-3.40) or a higher activities of daily living score. [17][18][19][22][23][24] Common covariates included age, stro...

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“…31 Laboratory-based tests of motor gains may be standardized, but do not inherently reflect what is actually performed in the real world or reflect patient-centered outcome measurements. 32 Studies of self-report instruments about participation, within the definition of the International Classification of Functioning, Disability and Health, show that available tools meet very limited success. 33 The need here is great.…”

Section: The Problemsmentioning

confidence: 99%

A Rehabilitation-Internet-of-Things in the Home to Augment Motor Skills and Exercise Training

Dobkin

2016

Neurorehabil Neural Repair

111

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Although motor learning theory has led to evidence-based practices, few trials have revealed the superiority of one theory-based therapy over another after stroke. Nor have improvements in skills been as clinically robust as one might hope. We review some possible explanations, then potential technology-enabled solutions. Over the Internet, the type, quantity, and quality of practice and exercise in the home and community can be monitored remotely and feedback provided to optimize training frequency, intensity, and progression at home. A theory-driven foundation of synergistic interventions for walking, reaching and grasping, strengthening, and fitness could be provided by a bundle of home-based Rehabilitation Internet-of-Things (RIoT) devices. A RIoT might include wearable, activity-recognition sensors and instrumented rehabilitation devices with radio transmission to a smartphone or tablet to continuously measure repetitions, speed, accuracy, forces, and temporal spatial features of movement. Using telerehabilitation resources, a therapist would interpret the data and provide behavioral training for self-management via goal setting and instruction to increase compliance and long-term carryover. On top of this user-friendly, safe, and conceptually sound foundation to support more opportunity for practice, experimental interventions could be tested or additions and replacements made, perhaps drawing from virtual reality and gaming programs or robots. RIoT devices continuously measure the actual amount of quality practice; improvements and plateaus over time in strength, fitness, and skills; and activity and participation in home and community settings. Investigators may gain more control over some of the confounders of their trials and patients will have access to inexpensive therapies.

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An International Standard Set of Patient-Centered Outcome Measures After Stroke

Abstract: Supplemental Digital Content is available in the text.

Cited by 188 publications

References 30 publications

Factors facilitating a national quality registry to aid clinical quality improvement: findings of a national survey

Factors facilitating a national quality registry to aid clinical quality improvement: findings of a national survey

Focused Update of Sex Differences in Patient Reported Outcome Measures After Stroke

A Rehabilitation-Internet-of-Things in the Home to Augment Motor Skills and Exercise Training

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