Scaling Family Voices and Engagement to Measure and Improve Systems Performance and Whole Child Health: Progress and Lessons from the Child and Adolescent Health Measurement Initiative.

BACKGROUND: The 1997 legislation authorizing the United States Child Health Insurance Program sparked progress to measure and publicly report on children's healthcare services quality and system performance. To meet the moment, the national Child and Adolescent Health Measurement Initiative (CAHMI) public-private collaboration was launched to put families at the center of defining, measuring and using healthcare performance information to drive improved services quality and outcomes. METHODS: Since 1996 the CAHMI followed an intentional path of collaborative action to (1) articulate shared goals for child health and advance a comprehensive, life-course and outcomes-based healthcare performance measurement and reporting framework; (2) collaborate with families, providers, payers and government agencies to specify, validate and support national, state and local use of dozens of framework aligned measures; (3) create novel public-facing digital data query, collection and reporting tools that liberate data findings for use by families, providers, advocates, policymakers, the media and researchers (Data Resource Center, Well Visit Planner); and (4) generate field building research and systems change agendas and frameworks (Prioritizing Possibilities, Engagement In Action) to catalyze prevention, flourishing and healing centered, trauma-informed, whole child and family engaged approaches, integrated systems and supportive financing and policies. CONCLUSIONS: Lessons call for a restored, sustainable family and community engaged measurement infrastructure, public activation campaigns, and undeterred federal, state and systems leadership that implement policies to incentivize, resource, measure and remove barriers to integrated systems of care that scale family engagement to equitably promote whole child, youth and family well-being. Population health requires effective family engagement.

Effect of Biologic Therapies on Airway Hyperresponsiveness and Allergic Response: A Systematic Literature Review.

Background: Airway hyperresponsiveness (AHR) is a key feature of asthma. Biologic therapies used to treat asthma target specific components of the inflammatory pathway, and their effects on AHR can provide valuable information about the underlying disease pathophysiology. This review summarizes the available evidence regarding the effects of biologics on allergen-specific and non-allergen-specific airway responses in patients with asthma. Methods: We conducted a systematic review in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines, including risk-of-bias assessment. PubMed and Ovid were searched for studies published between January 1997 and December 2021. Eligible studies were randomized, placebo-controlled trials that assessed the effects of biologics on AHR, early allergic response (EAR) and/or late allergic response (LAR) in patients with asthma. Results: Thirty studies were identified for inclusion. Bronchoprovocation testing was allergen-specific in 18 studies and non-allergen-specific in 12 studies. Omalizumab reduced AHR to methacholine, acetylcholine or adenosine monophosphate (3/9 studies), and reduced EAR (4/5 studies) and LAR (2/3 studies). Mepolizumab had no effect on AHR (3/3 studies), EAR or LAR (1/1 study). Tezepelumab reduced AHR to methacholine or mannitol (3/3 studies), and reduced EAR and LAR (1/1 study). Pitrakinra reduced LAR, with no effect on AHR (1/1 study). Etanercept reduced AHR to methacholine (1/2 studies). No effects were observed for lebrikizumab, tocilizumab, efalizumab, IMA-638 and anti-OX40 ligand on AHR, EAR or LAR; benralizumab on LAR; tralokinumab on AHR; and Ro-24-7472 on AHR or LAR (all 1/1 study each). No dupilumab or reslizumab studies were identified. Conclusion: Omalizumab and tezepelumab reduced EAR and LAR to allergens. Tezepelumab consistently reduced AHR to methacholine or mannitol. These findings provide insights into AHR mechanisms and the precise effects of asthma biologics. Furthermore, findings suggest that tezepelumab broadly targets allergen-specific and non-allergic forms of AHR, and the underlying cells and mediators involved in asthma.

Efficacy of Biologics in Severe, Uncontrolled Asthma Stratified by Blood Eosinophil Count: A Systematic Review.

INTRODUCTION: Randomized controlled trials (RCTs) of biologics in patients with severe, uncontrolled asthma have shown differential results by baseline blood eosinophil count (BEC). In the absence of head-to-head trials, we describe the effects of biologics on annualized asthma exacerbation rate (AAER) by baseline BEC in placebo-controlled RCTs. Exacerbations associated with hospitalization or an emergency room visit, pre-bronchodilator forced expiratory volume in 1 s, Asthma Control Questionnaire score, and Asthma Quality of Life Questionnaire score were also summarized. METHODS: MEDLINE (via PubMed) was searched for RCTs of biologics in patients with severe, uncontrolled asthma and with AAER reduction as a primary or secondary endpoint. AAER ratios and change from baseline in other outcomes versus placebo were compared across baseline BEC subgroups. Analysis was limited to US Food and Drug Administration-approved biologics. RESULTS: In patients with baseline BEC ≥ 300 cells/µL, AAER reduction was demonstrated with all biologics, and other outcomes were generally improved. In patients with BEC 0 to < 300 cells/µL, consistent AAER reduction was demonstrated only with tezepelumab; improvements in other outcomes were inconsistent across biologics. In patients with BEC 150 to < 300 cells/µL, consistent AAER reduction was demonstrated with tezepelumab and dupilumab (300 mg dose only), and in those with BEC 0 to < 150 cells/µL, AAER reduction was demonstrated only with tezepelumab. CONCLUSION: The efficacy of all biologics in reducing AAER in patients with severe asthma increases with higher baseline BEC, with varying profiles across individual biologics likely due to differing mechanisms of action.

Understanding Clinician Trust in Health Care Organizations Should Be a Research Priority.

This Viewpoint discusses the urgent need to build trust between physicians and the organizations in which they work.

The relationship between Rating of Everyday Arm-use in the Community and Home (REACH) scale affected arm-use assessment, activity and participation after stroke.

BACKGROUND AND OBJECTIVES: While arm function has been traditionally used as a primary goal for upper extremity rehabilitation post-stroke, we propose a simple measure of arm use, which may translate into better activities and participation. The aim was to determine the relationship between arm use and measures of activity and participation. METHODS: This was a cross-sectional study with evaluative components involving community-dwelling individuals with chronic stroke. The Rating of Everyday Arm-Use in the Community and Home (REACH) Scale was used to assess affected arm use, Barthel Index and activity domain of the Stroke Impact Scale (SIS) for activities, and participation domain of the SIS for participation. The participants were also asked if they resumed driving after the stroke. RESULTS: Forty-nine individuals (mean age = 70.3 ± 11.5 years, male sex = 51%) living with the effects of a stroke for at least 3 months participated in this study. There was a positive relationship between affected arm use and activities (Barthel Index score - rs  = 0.464; SIS activities - rs  = 0.686), participation (rs  = 0.479), and driving (rs  = 0.581). The Barthel Index scores were higher for individuals with dominant arm hemiparesis (p = 0.003) or left hemisphere lesions (p = 0.005). There was also greater arm use in left hemisphere lesions (p = 0.018). CONCLUSIONS: Affected arm use in individuals with chronic stroke is related to activities and participation. Given the importance of arm use in activities and participation after stroke, rehabilitation therapists may consider utilizing the REACH Scale, a simple and quick outcome measure, as a means to assess arm use and implement effective interventions for improving arm use.

A Pilot Study for Remote Evaluation of Upper Extremity Motor Function After Stroke: The Arm Capacity and Movement Test (ArmCAM).

IMPORTANCE: A simple measure that can be administered remotely by means of videoconferencing is needed for telerehabilitation. OBJECTIVE: To develop a valid and reliable measure, the Arm Capacity and Movement Test (ArmCAM), that can be administered remotely by means of videoconferencing to evaluate upper extremity motor function poststroke. DESIGN: Cross-sectional. SETTING: Participants' homes. PARTICIPANTS: A sample of people with stroke (N = 31). OUTCOMES AND MEASURES: Test-retest and interrater reliabilities were assessed through intraclass correlation coefficients (ICCs), Cohen's κ, standard error of measurement (SEM), and minimal detectable change (MDC). Interrater reliability validity was examined with Pearson and Spearman rank correlation coefficients. RESULTS: The ArmCAM (range = 0-30) consists of 10 items and takes 15 min to administer with no special equipment except for a computer and internet access. The ICCs for test-retest reliability and interrater reliability were .997 and .993, respectively. The SEM and MDC95 were 0.74 and 2.05 points, respectively. Individual items' test-retest reliability and interrater levels of agreement ranged from .811 to .957 and from .475 to .842, respectively, as measured with Cohen's κ. Correlations between the ArmCAM and the Rating of Everyday Arm-use in the Community and Home scale; the Stroke Impact Scale, hand function domain; the Fugl-Meyer Assessment for upper extremity; and the Action Research Arm Test were good to excellent. CONCLUSIONS AND RELEVANCE: The ArmCAM has good reliability and validity. It is an easy-to-use assessment designed to be administered remotely by means of videoconferencing. What This Article Adds: The ArmCAM is a psychometrically sound instrument that can be easily administered remotely by means of videoconferencing to evaluate upper extremity motor function after stroke.

Responsiveness and trajectory of changes in the rating of everyday arm-use in the community and home (REACH) scale over the first-year post-stroke.

OBJECTIVE: To examine the trajectory of the Rating of Everyday Arm-use in the Community and Home (REACH) scores over the first-year post-stroke, determine if REACH scores are modified by baseline impairment level and explore the responsiveness of the REACH scale through hypothesis testing. DESIGN: Consecutive sample longitudinal study. SETTING: Participants were recruited from an acute stroke unit and followed up at three, six, and 12 months post-stroke. PARTICIPANTS: Seventy-three participants with upper limb weakness (Shoulder Abduction and Finger Extension score ≤ 8). MAIN MEASURES: The REACH scale is a six-level self-report classification scale that captures how the affected upper limb is being used in one's own environment. The Fugl-Meyer Upper Limb Assessment (FMA-UL), Stroke Upper Limb Capacity Scale (SULCS), accelerometer-based activity count ratio and Global Rating of Change Scale (GRCS) were used to capture upper limb impairment, capacity, and use. RESULTS: The following proportions of participants improved at least one REACH level: 64% from baseline to three months, 37% from three to six months and 13% from six to 12 months post-stroke. The trajectory of REACH scores over time was associated with baseline impairment. Change in REACH had a moderate correlation to change in SULCS and the GRCS but not FMA-UL or the activity count ratio. CONCLUSIONS: Results of hypothesis testing provide preliminary evidence of the responsiveness of the REACH scale. On average, individuals with severe impairment continued to show improvement in use over the first year, while those with mild/moderate impairment plateaued and a small proportion decreased in the early chronic phase.

Virtual Arm Boot Camp (V-ABC): study protocol for a mixed-methods study to increase upper limb recovery after stroke with an intensive program coupled with a grasp count device.

BACKGROUND: Encouraging upper limb use and increasing intensity of practice in rehabilitation are two important goals for optimizing upper limb recovery post stroke. Feedback from novel wearable sensors may influence practice behaviour to promote achieving these goals. A wearable sensor can potentially be used in conjunction with a virtually monitored home program for greater patient convenience, or due to restrictions that preclude in-person visits, such as COVID-19. This trial aims to (1) determine the efficacy of a virtual behaviour change program that relies on feedback from a custom wearable sensor to increase use and function of the upper limb post stroke; and (2) explore the experiences and perceptions of using a program coupled with wearable sensors to increase arm use from the perspective of people with stroke. METHODS: This mixed-methods study will utilize a prospective controlled trial with random allocation to immediate or 3-week delayed entry to determine the efficacy of a 3-week behaviour change program with a nested qualitative description study. The intervention, the Virtual Arm Boot Camp (V-ABC) features feedback from a wearable device, which is intended to increase upper limb use post stroke, as well as 6 virtual sessions with a therapist. Sixty-four adults within 1-year post stroke onset will be recruited from seven rehabilitation centres. All outcomes will be collected virtually. The primary outcome measure is upper limb use measured by grasp counts over 3 days from the wearable sensor (TENZR) after the 3-week intervention. Secondary outcomes include upper limb function (Arm Capacity and Movement Test) and self-reported function (Hand Function and Strength subscale from the Stroke Impact Scale). Outcome data will be collected at baseline, post-intervention and at 2 months retention. The qualitative component will explore the experiences and acceptability of using a home program with a wearable sensor for increasing arm use from the point of view of individuals with stroke. Semi-structured interviews will be conducted with participants after they have experienced the intervention. Qualitative data will be analysed using content analysis. DISCUSSION: This study will provide novel information regarding the efficacy and acceptability of virtually delivered programs to improve upper extremity recovery, and the use of wearable sensors to assist with behaviour change. TRIAL REGISTRATION: ClinicalTrials.gov NCT04232163 . January 18, 2020.

Eukaryotic initiation factor 6 regulates mechanical responses in endothelial cells.

The repertoire of extratranslational functions of components of the protein synthesis apparatus is expanding to include control of key cell signaling networks. However, very little is known about noncanonical functions of members of the protein synthesis machinery in regulating cellular mechanics. We demonstrate that the eukaryotic initiation factor 6 (eIF6) modulates cellular mechanobiology. eIF6-depleted endothelial cells, under basal conditions, exhibit unchanged nascent protein synthesis, polysome profiles, and cytoskeleton protein expression, with minimal effects on ribosomal biogenesis. In contrast, using traction force and atomic force microscopy, we show that loss of eIF6 leads to reduced stiffness and force generation accompanied by cytoskeletal and focal adhesion defects. Mechanistically, we show that eIF6 is required for the correct spatial mechanoactivation of ERK1/2 via stabilization of an eIF6-RACK1-ERK1/2-FAK mechanocomplex, which is necessary for force-induced remodeling. These results reveal an extratranslational function for eIF6 and a novel paradigm for how mechanotransduction, the cellular cytoskeleton, and protein translation constituents are linked.

Prevalence of Walking Limitation After Acute Stroke and Its Impact on Discharge to Home.

OBJECTIVE: The purpose of this study was to provide contemporary estimates of the prevalence of lower extremity motor impairment and walking limitation after first-ever stroke and to characterize the predictive nature of early walking ability for being discharged home after acute hospitalization. METHODS: In this cohort study, data were collected from a metropolitan acute care hospital in Canada at admission for 487 adults with first-ever acute ischemic or hemorrhagic stroke. Lower extremity motor impairment and walking limitation were measured using the National Institutes of Health Stroke Scale and AlphaFIM, respectively. Parallel multivariable logistic regression models were built to predict discharge home after acute hospitalization compared with further hospitalization. RESULTS: For patients surviving a first-ever stroke, 44.1% presented with some degree of lower extremity motor impairment and 46.0% were unable to walk. In a multivariable model built around a binary classification of walking (Nagelkerke R2 = 0.41), those with any ability to walk at admission (with or without therapist assistance) had 9.48 times greater odds of being discharged home (odds ratio = 9.48, 95% CI = 6.11-14.92) than those who were unable. In a parallel multivariable model built around an ordinal classification of walking (Nagelkerke R2 = 0.49), patients had 2.07 times greater odds (odds ratio = 2.07, 95% CI = 1.82-2.38) of being discharged home for each increment on a 6-point walking scale (total dependence to complete independence) assessed at acute admission. CONCLUSION: Approximately one-half of patients with first-ever stroke present with lower extremity weakness and walking limitation. Early walking ability is a significant predictor of returning home after acute hospitalization, independent of stroke severity. Discharge planning may be facilitated early after stroke with the familiar assessment of walking ability. IMPACT: An early assessment of walking function within days of stroke admission can help to streamline discharge planning. LAY SUMMARY: Nearly one-half of all individuals who experience a first-time stroke have walking difficulty when they arrive at the hospital. The severity of the walking limitation can predict whether a patient will eventually be discharged home or go on to further hospitalization.

Clinicians' perceptions of a potential wearable device for capturing upper limb activity post-stroke: a qualitative focus group study.

BACKGROUND: There is growing interest in the use of wearable devices that track upper limb activity after stroke to help determine and motivate the optimal dose of upper limb practice. The purpose of this study was to explore clinicians' perceptions of a prospective wearable device that captures upper limb activity to assist in the design of devices for use in rehabilitation practice. METHODS: Four focus groups with 18 clinicians (occupational and physical therapists with stroke practice experience from a hospital or private practice setting) were conducted. Data were analyzed thematically. RESULTS: Our analysis revealed three themes: (1) "Quantity and quality is ideal" emphasized how an ideal device would capture both quantity and quality of movement; (2) "Most useful outside therapy sessions" described how therapists foresaw using the device outside of therapy sessions to monitor homework adherence, provide self-monitoring of use, motivate greater use and provide biofeedback on movement quality; (3) "User-friendly please" advocated for the creation of a device that was easy to use and customizable, which reflected the client-centered nature of their treatment. CONCLUSIONS: Findings from this study suggest that clinicians support the development of wearable devices that capture upper limb activity outside of therapy for individuals with some reach to grasp ability. Devices that are easy to use and capture both quality and quantity may result in greater uptake in the clinical setting. Future studies examining acceptability of wearable devices for tracking upper limb activity from the perspective of individuals with stroke are needed.

Real-World Functional Grasping Activity in Individuals With Stroke and Healthy Controls Using a Novel Wearable Wrist Sensor.

Background. While wrist-worn accelerometers have been used to measure upper extremity use in the past, they primarily measure arm motion and lack the ability to capture functional hand opening and grasping activities which are essential for activities of daily living. Objectives. To characterize real-world functional hand opening and grasping activities captured over multiple days in adults with stroke and in matched controls using a novel wrist-worn device. Methods. Twenty-eight individuals (fourteen individuals with stroke and 14 healthy controls) wore the devices on both wrists for 3 days. Functional hand activity was characterized by daily hand counts, hourly hand counts, and asymmetry between hands. The Mann-Whitney U test was used to evaluate differences in functional hand activities between the two groups. Results. The stroke group had 1480 and 4691 daily hand counts in their affected and nonaffected hands, respectively. The control group had 3559 and 5021 daily hand counts in their nondominant and dominant hands, respectively. Significantly fewer daily hand counts (P = .019), fewer hourly hand counts (P = .024), and a larger asymmetry index (P = .01) of the affected hand in the stroke group were found compared to that of the nondominant hand in the control group. Conclusions. Real-world functional upper extremity activity can be measured using this novel wrist-worn device. Unlike wrist-worn accelerometers, this wrist-worn device can provide a measurement of functional grasping activity. The findings have implications for clinicians and researchers to monitor and assess real-world hand activity, as well as to apply specific doses of repetitions to improve neural recovery after stroke.

Challenges of Estimating Accurate Prevalence of Arm Weakness Early After Stroke.

Background. Recent studies have reported lower statistics of upper limb (UL) weakness (48-57%) compared to widely cited values collected over 2 decades ago (70-80%). Objective. To explore potential factors contributing to the accuracy of prevalence values of UL weakness using a case study from a single regional centre. Methods. All patients admitted to the acute stroke unit with suspected diagnosis of stroke were screened from February 2016 to August 2017. Upper limb weakness was captured (a) prospectively using the Shoulder Abduction and Finger Extension (SAFE) score performed by unit physical therapists within 7 days post-stroke and (b) retrospectively via chart review using the National Institutes of Health Stroke Scale (NIHSS) arm score at admission and 24 hours post-admission. Results. A total of 656 patients were admitted with a first-ever stroke, and 621 (95%) individuals were administered the SAFE score. A total of 40% of individuals had UL weakness using the SAFE score (SAFE ≤8) at a mean time of 1.9 (SD 1.5) days post-stroke. In the same sample, 57% and 49% had UL weakness using the admission and 24-hour post-admission NIHSS arm score, respectively. Conclusions. The accuracy of population-level UL weakness prevalence values can be affected by weakness measure and score cut-off, time post-stroke weakness is captured, sample characteristics and use of single or multiple sites. Researchers using prevalence values for clinical trial planning should consider these attributes when using prevalence data for estimating recruitment rates and resource needs.

Service user experiences of a novel in-reach rehabilitation and recovery service for people with profound and enduring mental health needs.

This article provides an organizational case study using exploratory qualitative and visual research methods. We address the research question: What are the experiences of service users who use a novel in-reach rehabilitation and recovery service for people with severe and enduring mental health needs? Fifteen purposefully sampled service users were recruited from across a Service that is novel in embedding community sectors within inpatient provision. The sample reflects approximately the demographic of the Service and comprises: 10 men, 5 women; 12 white British, 3 ethnic minority; aged 18-60 years; and across inpatient care and supported community living. Photo-elicitation was used to enrich data collection through lightly structured interviews focused on the images brought by participants. Interview transcripts were analysed using interpretative phenomenological analysis. Analysis indicates that participants oriented towards four 'meta-questions': What does mental well-being mean to you? What difficulties have you encountered? What do you appreciate about the Service? What do you need for change to occur? We also identified six themes which told the story of a journey. The journey begins with challenge and moves towards making connections with others. Here, power dynamics are often experienced and addressed in the development of a greater sense of independence. This then provides opportunities for raised awareness around possibilities of recovery and a new-found hope. Our three main conclusions are all relevant to clinical practice: service users (a) place great importance on building relationships; (b) aspire to make informed choices throughout their recovery journey; and (c) desire greater transparency regarding treatment options.

Governance and funding best practices for embedded research programs.

Health systems are increasingly embracing embedded research (ER) program models that allow researchers to integrate into operational and clinical practices. Successful ER programs rely on unique funding streams and bidirectional relationships with health system operational and executive leaders. This commentary summarizes current practices and recommendations for funding and governing ER programs. Three funding best practices are recommended: a mixed portfolio of short-term and long-term projects funded through a combination of internal and external sources; leveraging the community benefit requirement of non-profit hospitals and forming connections in the development office; and a research and implementation franchise model. Governance best practices include a strong relationship between researchers, operational and executive leaders and an external advisory committee to ensure that research topics are relevant to the needs of patients, the health system, and other stakeholders. These recommended best practices can help lay the foundation for early attempts to identify shared challenges and successes as health systems establish new ER programs and existing programs continue to mature.