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Background: The Episodic Disability Questionnaire (EDQ) is a generic 35-item patient-reported outcome measure of presence, severity and episodic nature of disability. We assessed the measurement properties of the Episodic Disability Questionnaire (EDQ) with adults living with HIV. Methods: We conducted a measurement study with adults living with HIV in eight clinical settings in Canada, Ireland, United Kingdom, and United States. We electronically administered the EDQ followed by three reference measures (World Health Organization Disability Assessment Schedule; Patient Health Questionnaire; Social Support Scale) and a demographic questionnaire. We administered the EDQ only 1 week later. We assessed the internal consistency reliability (Cronbach's alpha; > 0.7 acceptable), and test–retest reliability (Intra Class Correlation Coefficient; > 0.7 acceptable). We estimated required change in EDQ domain scores to be 95% certain that a change was not due to measurement error (Minimum Detectable Change (MDC95%)). We evaluated construct validity by assessing 36 primary hypotheses of relationships between EDQ scores and scores on the reference measures (> 75% hypotheses confirmed indicated validity). Results: Three hundred fifty nine participants completed the questionnaires at time point 1, of which 321 (89%) completed the EDQ approximately 1 week later. Cronbach's alpha for internal consistency ranged from 0.84 (social domain) to 0.91 (day domain) for the EDQ severity scale, and 0.72 (uncertainty domain) to 0.88 (day domain) for the EDQ presence scale, and 0.87 (physical, cognitive, mental-emotional domains) to 0.89 (uncertainty domain) for the EDQ episodic scale. ICCs for test–retest reliability ranged from 0.79 (physical domain) to 0.88 (day domain) for the EDQ severity scale and from 0.71 (uncertainty domain) to 0.85 (day domain) for the EDQ presence scale. Highest precision was demonstrated in the severity scale for each domain (MDC95% range: 19–25 out of 100), followed by the presence (MDC95% range: 37–54) and episodic scales (MDC95% range:44–76). Twenty-nine of 36 (81%) construct validity hypotheses were confirmed. Conclusions: The EDQ possesses internal consistency reliability, construct validity, and test–retest reliability, with limited precision when administered electronically with adults living with HIV across in clinical settings in four countries. Given the measurement properties, the EDQ can be used for group level comparisons for research and program evaluation in adults living with HIV. [ABSTRACT FROM AUTHOR]

Purpose: We assessed the sensibility, utility, and implementation considerations of the Short-Form HIV Disability Questionnaire (SF-HDQ) in community-based settings. Methods: We conducted a mixed-methods study with adults living with HIV and community providers in seven community sites in Canada. We administered the SF-HDQ, a sensibility questionnaire and conducted semi-structured interviews. The SF-HDQ was sensible if median scores were ≥5/7(adults living with HIV) and ≥4/7(community providers) for ≥80% of the sensibility questionnaire items. Qualitative interview data were analyzed using content analysis. Results: Median sensibility scores were ≥5 for adults living with HIV (n = 44) and ≥4 for community providers (n = 10) for 95% and 100% of items, respectively. The SF-HDQ is comprehensive, represented disability, captured its episodic nature, and was easy to complete. Community utility included: facilitating communication and engagement with community; taking a snapshot of disability and tracking changes over time; guiding referrals; fostering self-reflection; and informing community programs. Considerations for implementation included flexible, person-centered approaches to mode and processes of administration, and communicating scores based on personal preferences among persons living with HIV. Conclusion: The SF-HDQ possesses sensibility and utility for use in community-based settings. [ABSTRACT FROM AUTHOR]

Aim: Our aim was to describe how the probability of walking, wheeled mobility, and assisted mobility changes with environmental setting and age in children and adolescents with cerebral palsy (CP). Method: The parents of a population-based sample of 642 children and adolescents (360 males, 282 females; age range 16mo-21y) reported their children's mobility at home, school, and outdoors at 6- or 12-month intervals a mean of 5.2 times. Generalized mixed-effects analyses were used to model the probabilities. Results: By age 3 years, children with motor function classified as level I according to the Gross Motor Function Classification System (GMFCS) walked in all three settings. Children/adolescents classified as level V used assisted mobility, with a small number using wheeled mobility. In the case of children classified as GMFCS level II, the probability of walking varied with the environmental setting, which, at age 18, is outdoors 90% of the time. Among children classified as GMFCS level III, the probability of walking was highest at age 9 at school (68%), and at age 18 was approximately 50% in all three settings. Among children/adolescents rated as GMFCS level IV, the probability of wheeled mobility increased with age and, at age 18, 57% of mobility took place outdoors. Interpretation: The results provide evidence that age and environmental setting influence method of mobility of children/adolescents with CP. The method that is preferred in one setting may not be preferred in another setting or at another age. (Contains 4 figures.)

This paper reports the construction of gross motor development curves for children and youth with cerebral palsy (CP) in order to assess whether function is lost during adolescence. We followed children previously enrolled in a prospective longitudinal cohort study for an additional 4 years, as they entered adolescence and young adulthood. The resulting longitudinal dataset comprised 3455 observations of 657 children with CP (369 males, 288 females), assessed up to 10 times, at ages ranging from 16 months to 21 years. Motor function was assessed using the 66-item Gross Motor Function Measure (GMFM-66). Participants were classified using the Gross Motor Function Classification System (GMFCS). We assessed the loss of function in adolescence by contrasting a model of function that assumes no loss with a model that allows for a peak and subsequent decline. We found no evidence of functional decline, on average, for children in GMFCS Levels I and II. However, in Levels III, IV, and V, average GMFM-66 was estimated to peak at ages 7 years 11 months, 6 years 11 months, and 6 years 11 months respectively, before declining by 4.7, 7.8, and 6.4 GMFM-66 points, in Levels III, IV, and V respectively, as these adolescents became young adults. We show that these declines are clinically significant.

Researchers have created five different motor development graphs for assessing children with cerebral palsy based on 2,632 assessments of 657 children between the ages of 1 and 13 who were followed for up to four years. These graphs can be used to determine the child's prognosis.

Background: Events associated with the COVID-19 pandemic, such as physical distancing, closure of community services, postponement of health appointments, and loss of employment can lead to social isolation, financial uncertainty, and interruption of antiretroviral adherence, resulting in additional health-related challenges (disability) experienced among adults living with chronic illness such as HIV. 'Living strategies' is a concept derived from the perspectives of people living with HIV, defined as behaviors, attitudes and beliefs adopted by people living with HIV to help deal with disability associated with HIV and multi-morbidity. Our aim was to describe disability among adults living with HIV and self-care living strategies used during the COVID-19 pandemic. Methods: Adults living with HIV in Toronto, Ontario, Canada, including some with pre-pandemic HIV Disability Questionnaire (HDQ) data, completed a cross-sectional web-based survey between June–August 2020. The survey included the HDQ and questions about self-care living strategy use during the pandemic. We compared disability (HDQ) scores prior to versus during the pandemic using paired t-tests. We reported the proportion of participants who engaged in various living strategies at least 'a few times a week' or 'everyday' during the pandemic. Results: Of the 63 respondents, 84% were men, median age 57 years, and 62% lived alone. During the pandemic the greatest disability severity was in the uncertainty [median 30; Interquartile range (IQR): 16, 43] and mental-emotional (25; IQR: 14, 41) domains. Among the 51 participants with pre-pandemic data, HDQ severity scores were significantly greater (worse) during the pandemic (vs prior) in all domains. Greatest change from prior to during the pandemic was in the mental-emotional domain for presence (17.7; p < 0.001), severity (11.4; p < 0.001), and episodic nature (9.3; p < 0.05) of disability. Most participants (> 60%) reported engaging a 'few times a week' or 'everyday' in self-care strategies associated with maintaining sense of control and adopting positive attitudes and beliefs. Conclusions: People living with HIV reported high levels of uncertainty and mental-emotional health challenges during the pandemic. Disability increased across all HDQ dimensions, with the greatest worsening in the mental-emotional health domain. Results provide an understanding of disability and self-care strategy use during the COVID-19 pandemic. [ABSTRACT FROM AUTHOR]

Because coping with uncertainty is an important aspect of close relationships and is critical to issues of trust, the authors expected individual differences in uncertainty orientation to play a central role in shaping people's representations of their relationships. For a 3-week period, 77 couples completed a series of questionnaires and kept diaries on their interactions. As expected, certainty-oriented persons' need for cognitive closure resulted in either high or low trust for their partners, whereas uncertainty-oriented persons typically attained only a moderate level of trust. Several other measures indicated that certainty-oriented partners found their relationships most aversive under moderate trust. Memory data indicated that certainty-oriented individuals, but not uncertainty-oriented individuals, used conclusions about trust as a heuristic for reconstructing the past in ways that maintained cognitive clarity. Uncertainty orientation also combined with gender in many interesting ways.

Abstract Introduction Little is known about the long-term health related quality of life outcomes in patients with West Nile virus associated acute flaccid paralysis. We describe the quality of life scores of seven patients with acute flaccid paralysis who presented to hospital between 2003 and 2006, and were followed for up to two years. Case presentations Between 2003 and 2006, 157 symptomatic patients with West Nile virus were enrolled in a longitudinal cohort study of West Nile virus in Canada. Seven patients (4%) had acute flaccid paralysis. The first patient was a 55-year-old man who presented with left upper extremity weakness. The second patient was a 54-year-old man who presented with bilateral upper extremity weakness. The third patient was a 66-year-old woman who developed bilateral upper and lower extremity weakness. The fourth patient was a 67-year-old man who presented with right lower extremity weakness. The fifth patient was a 60-year-old woman who developed bilateral lower extremity weakness. The sixth patient was a 71-year-old man with a history of Parkinson's disease and acute onset bilateral lower extremity weakness. The seventh patient was a 52-year-old man who presented with right lower extremity weakness. All were Caucasian. Patients were followed for a mean of 1.1 years. At the end of follow-up the mean score on the Physical Component Summary of the Short-Form 36 scale had only slightly increased to 39. In contrast, mean score on the Mental Component Summary of the Short-Form 36 scale at the end of follow-up had normalized to 50. Conclusion Despite the poor physical prognosis for patients with acute flaccid paralysis, the mental health outcomes are generally favorable.

Abstract Background The use of measurement tools is an essential part of good evidence-based practice; however, physiotherapists (PTs) are not always confident when selecting, administering, and interpreting these tools. The purpose of this study was to evaluate the impact of a multifaceted knowledge translation intervention, using PTs as knowledge brokers (KBs) to facilitate the use in clinical practice of four evidence-based measurement tools designed to evaluate and understand motor function in children with cerebral palsy (CP). The KB model evaluated in this study was designed to overcome many of the barriers to research transfer identified in the literature. Methods A mixed methods before-after study design was used to evaluate the impact of a six-month KB intervention by 25 KBs on 122 practicing PTs' self-reported knowledge and use of the measurement tools in 28 children's rehabilitation organizations in two regions of Canada. The model was that of PT KBs situated in clinical sites supported by a network of KBs and the research team through a broker to the KBs. Modest financial remuneration to the organizations for the KB time (two hours/week for six months), ongoing resource materials, and personal and intranet support was provided to the KBs. Survey data were collected by questionnaire prior to, immediately following the intervention (six months), and at 12 and 18 months. A mixed effects multinomial logistic regression was used to examine the impact of the intervention over time and by region. The impact of organizational factors was also explored. Results PTs' self-reported knowledge of all four measurement tools increased significantly over the six-month intervention, and reported use of three of the four measurement tools also increased. Changes were sustained 12 months later. Organizational culture for research and supervisor expectations were significantly associated with uptake of only one of the four measurement tools. Conclusions KBs positively influenced PTs' self-reported knowledge and self-reported use of the targeted measurement tools. Further research is warranted to investigate whether this is a feasible, cost-effective model that could be used more broadly in a rehabilitation setting to facilitate the uptake of other measurement tools or evidence-based intervention approaches.

Abstract Context Significant resources and time are invested in the production of research knowledge. The primary objective of this randomized controlled trial was to evaluate the effectiveness of three knowledge translation and exchange strategies in the incorporation of research evidence into public health policies and programs. Methods This trial was conducted with a national sample of public health departments in Canada from 2004 to 2006. The three interventions, implemented over one year in 2005, included access to an online registry of research evidence; tailored messaging; and a knowledge broker. The primary outcome assessed the extent to which research evidence was used in a recent program decision, and the secondary outcome measured the change in the sum of evidence-informed healthy body weight promotion policies or programs being delivered at health departments. Mixed-effects models were used to test the hypotheses. Findings One hundred and eight of 141 (77%) health departments participated in this study. No significant effect of the intervention was observed for primary outcome (p < 0.45). However, for public health policies and programs (HPPs), a significant effect of the intervention was observed only for tailored, targeted messages (p < 0.01). The treatment effect was moderated by organizational research culture (e.g., value placed on research evidence in decision making). Conclusion The results of this study suggest that under certain conditions tailored, targeted messages are more effective than knowledge brokering and access to an online registry of research evidence. Greater emphasis on the identification of organizational factors is needed in order to implement strategies that best meet the needs of individual organizations. Trial Registration The trial registration number and title are as follows: ISRCTN35240937 -- Is a knowledge broker more effective than other strategies in promoting evidence-based physical activity and healthy body weight programming?

Abstract Background Information on early recovery after arthroplasty is needed to help benchmark progress and make appropriate decisions concerning patient rehabilitation needs. The purpose of this study was to model early recovery of physical function in patients undergoing total hip (THA) and knee (TKA) arthroplasty, using physical performance and self-report measures. Methods A sample of convenience of 152 subjects completed testing, of which 69 (mean age: 66.77 ± 8.23 years) underwent THA and 83 (mean age: 60.25 ± 11.19 years) TKA. Postoperatively, patients were treated using standardized care pathways and rehabilitation protocols. Using a repeated measures design, patients were assessed at multiple time points over the first four postoperative months. Outcome measures included the Lower Extremity Function Scale (LEFS), the physical function subscale of the Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC PF), the 6 minute walk test (6 MWT), timed up and go test (TUG) and a timed stair test (ST). Average recovery curves for each of the measures were characterized using hierarchical linear modeling. Predictors of recovery were sequentially modeled after validation of the basic developmental models. Results Slopes of recovery were greater in the first 6 to 9 weeks with a second-degree polynomial growth term (weeks squared) providing a reasonable fit for the data over the study interval. Different patterns of recovery were observed between the self-report measures of physical function and the performance measures. In contrast to the models for the WOMAC PF and the LEFS, site of arthroplasty was a significant predictor (p = 0.001) in all of the physical performance measure models with the patients post TKA initially demonstrating higher function. Site of arthroplasty (p = 0.025) also predicted the rate of change for patients post THA and between 9 to 11 weeks after surgery, the THA group surpassed the function of the patients post TKA. Conclusion Knowledge about the predicted growth curves will assist clinicians in referencing patient progress, and determining the critical time points for measuring change. The study has contributed further evidence to highlight the benefit of using physical performance measures to learn about the patients' actual level of disability.

Purpose: This study aims to present developmental trajectories for physical activity (PA) and walking performance for children with cerebral palsy (CP). Materials and methods: Seventy-nine children with CP, 39 (49%) female, Gross Motor Functional Classification System levels I–V, and mean age 91.3 months (+/−27.7 SD) participated. Participants in levels I–V wore the Actigraph to capture PA and children in levels I-II also wore a StepWatch (SW) (n = 43) to measure walking performance. Trajectories for average PA counts/minute and number of minutes of moderate to vigorous PA were generated for levels I, II, and III/IV/V (aggregate). Single leg strides/day and average strides faster than 30 strides/min trajectories were generated for levels I–II. Results: Participants did not display plateaus in PA or walking performance based on functional level. Children in all levels showed a decrease in amount and intensity of PA from 3.0 to 12 years old, with participants in level I demonstrating the steepest decline. Children in level I decreased slightly, and level II increased slightly in both walking performance measures from 3.0 to 12 years old. Conclusions: Longitudinal curves demonstrate variations in PA and walking performance by functional level and provide prognostic information as to what changes may be anticipated for children with CP. Longitudinal developmental trajectories for physical activity and walking performance for children with cerebral palsy across functional levels are documented. Trajectories have potential to support collaborative intervention planning between therapists and families relative to physical activity and walking performance. [ABSTRACT FROM AUTHOR]

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Background Children with cerebral palsy (CP) characteristically present with impairments in balance. Currently, the pattern and timing of the development of balance ability have not been described for children with CP of varying Gross Motor Function Classification System (GMFCS) levels. Objective The purpose of this study was to document longitudinal developmental trajectories in a measure of balance, the Early Clinical Assessment of Balance (ECAB) scores, along with age-specific reference percentiles and the amount of change typical over a 1-year period for children within different GMFCS levels. Design The design was a longitudinal cohort study. Methods Participants included 708 children with CP, aged 18 months through their 12th birthday, and their families. Children participated in 2 to 5 assessments using the GMFCS and ECAB. Results Longitudinal trajectories describing the average change in the ECAB score with respect to age were created by fitting separate nonlinear mixed-effect models for children in each GMFCS level. Reference percentiles were constructed using quantile regression of ECAB data from the first visit (baseline) and 12-month and 24-month visits. Using these reference points, the amount of change in percentiles was calculated for all children by subtracting the baseline percentile score from the 12-month percentile score. Children whose percentile changes are within the 80% limits can usually be described as "developing as expected" for their age and GMFCS levels. Limitations Limitations of this study included use of a convenience sample, a ceiling effect of the ECAB for some children in GMFCS levels I and II, and the use of both a 12-month and 24-month study protocol that impacted the number of children available for each assessment session. Conclusions When used appropriately to monitor development and change over time for children with CP, the ECAB longitudinal trajectories, reference percentiles, and the associated change scores presented here should assist therapists and families in collaborative interaction to proactively plan services and interventions relative to balance ability. [ABSTRACT FROM AUTHOR]