Understanding participation of children with cerebral palsy in family and recreational activities.

AIMS: The primary aim of this study was to determine the effect of age, sex, gross motor, manual ability, and communication functions on the frequency and enjoyment of children\u27s participation in family and recreational activities. The secondary aim was to determine the relationships between motor and communication functions and participation. METHODS: Participants were 694 children, 1.5-12 years old, with cerebral palsy (CP) and their parents across the US and Canada. Parents rated children\u27s frequency and enjoyment of participation using the Child Engagement in Daily Life measure. Parents and therapists identified children\u27s level of function using Gross Motor Function Classification System (GMFCS), Manual Ability Classification System (MACS), and Communication Function Classification System (CFCS). RESULTS: Differences in frequency and enjoyment of participation were found based on children\u27s GMFCS, MACS, and CFCS levels but not age or sex. Children with higher gross motor, manual, and communication functions had higher frequency and enjoyment of participation, compared to children with lower functions. Frequency of participation was associated with GMFCS and CFCS levels whereas enjoyment of participation was only associated with CFCS level. IMPLICATIONS: Knowledge of child\u27s gross motor, manual ability, and communication functions of children with CP is important when setting goals and planning interventions for participation

A Collaborative Approach to Decision Making Through Developmental Monitoring to Provide Individualized Services for Children With Cerebral Palsy.

In this Perspective, we suggest a process to improve physical and occupational therapists’ and families’ collaboration to provide appropriate, efficient, and effective evidence-based services to improve motor function, self-care performance, and participation in family and recreation activities for children with cerebral palsy (CP). This process is informed by 2 multisite prospective cohort studies (Move & PLAY and On Track). The heterogeneity of children with CP is described, limiting the utility of evidence from randomized controlled trials and systematic reviews to inform service planning for children with CP. An evidence-based alternative using prospective cohort studies that produce knowledge of determinants of outcomes important to children and families and methods for developmental monitoring using longitudinal developmental and reference percentile curves to inform individualized care is suggested. Guiding questions are provided to explore how knowledge of determinants and developmental monitoring can inform family-centered, collaborative, strengths-based, and focused service programs to support early development and function. Although this perspective paper is focused on children with CP, the research approach described for collection of useful information and the clinical method of data use may be helpful for people with other heterogeneous chronic health conditions in which physical and occupational therapists face similar challenges

Longitudinal Changes in Physical Caregiving for Parents of Children with Cerebral Palsy.

Aims: To determine changes in physical caregiving for parents of children with cerebral palsy (CP) over a two-year period based on children’s gross motor function level and age. Methods: 153 parents of children with CP rated their physical caregiving using the Ease of Caregiving for Children three times over two years. Parents and assessors classified children’s gross motor function using the Gross Motor Function Classification System (GMFCS). Physical caregiving was compared at three test times among parents of children grouped by GMFCS level (I, II–III, and IV–V) and age (1.7–5.9 and 6–11 years) using a three-way mixed ANOVA. Results: Among all analyses, a two-way interaction was found between children’s GMFCS level and test time on ease of caregiving, p \u3c 0.01. Change over two-year period was found for parents of children in level I and II–III, p \u3c 0.01, but not parents of children in levels IV–V. At each test time, parents of children in level I reported the greatest ease of caregiving followed by parents of children in levels II–III, and levels IV–V, who reported the lowest ease of caregiving, p \u3c 0.001. Conclusions: Findings support evaluation and monitoring of physical caregiving for parents of children with CP over time

Determinants of gross motor function of young children with cerebral palsy: A prospective cohort study

Aim: The aim of this study was to test a model of determinants of gross motor function of young children with cerebral palsy (CP). Method: Four hundred and twenty-nine children with CP (242 males, 187 females; mean age 3y 2mo, SD 11mo) representing all levels of the Gross Motor Function Classification System (GMFCS) participated. Children in levels I to II and III to V were classified as Groups 1 and 2 respectively. Distribution of CP was quadriplegia, 44%; hemiplegia, 24%; diplegia, 23%; triplegia, 6%; and monoplegia, 2% (data not available for 1%). Impairment and motor function data were collected by reliable assessors; parents completed questionnaires on health conditions and adaptive behavior. Seven months later, parents were interviewed about family life and services received. One year after the study onset, motor function was re-evaluated. Analysis involved structural equation modeling. Results: The well-fitting model explained 58% and 75% of the variance in motor function at study completion for Groups 1 and 2 respectively. Primary impairments (spasticity, quality of movement, postural stability, and distribution of involvement; β=0.52-0.68) and secondary impairments (strength, range of motion limitations, and reduced endurance; β=0.25-0.26) explained the most variance. Adaptive behavior was a significant determinant only for Group 2 (β=0.21) and participation in community programs was significant only in Group 1 (β=0.13). Interpretation: Motor function is supported by optimizing body structures and function for all children and enhancing adaptive behavior for children with greater motor challenges. © 2013 Mac Keith Press

The medically managed patient with severe symptomatic aortic stenosis in the TAVR era: Patient characteristics, reasons for medical management, and quality of shared decision making at heart valve treatment centers

Background Little is known about patients with severe symptomatic aortic stenosis (AS) who receive medical management despite evaluation at a heart valve treatment center. Objective We identified patient characteristics associated with medical management, physician-reported reasons for selecting medical management, and patients’ perceptions of their involvement and satisfaction with treatment selection. Methods and results Of 454 patients evaluated for AS at 9 established heart valve treatment centers from December 12, 2013 to August 19, 2014, we included 407 with severe symptomatic AS. Information was collected using medical record review and survey of patients and treating physicians. Of 407 patients, 212 received transcatheter aortic valve replacement (TAVR), 124 received surgical aortic valve replacement (SAVR), and 71 received medical management (no SAVR/TAVR). Thirty-day predicted mortality was higher in patients receiving TAVR (8.7%) or medical management (9.8%) compared with SAVR (3.4%) (P<0.001). Physician-reported reasons for medical management included patient preference (31.0%), medical futility (19.7%), inoperability/anatomic infeasibility (11.3%), and inadequate vascular access (8.5%). Compared with patients receiving AVR, medically managed patients were less likely to report that they received enough information about the pros and cons of treatment options (P = 0.03), that their physicians involved them in treatment decisions (P<0.001), and that final decisions were the right ones (P<0.001). Conclusions Patient preference was the most common physician-reported reason for selecting non-invasive AS management, yet patients not undergoing AVR after valve center evaluation reported being less likely to receive sufficient education about treatment options and more likely to feel uncertain about final treatment decisions. Greater attention to shared decision making may improve the experience of care for this vulnerable group of patients

HealthMpowerment.org: Feasibility and acceptability of delivering an Internet intervention to young Black men who have sex with men

Young Black men who have sex with men (BMSM) are disproportionately affected by HIV/AIDS in the United States and continue to experience rapidly increasing HIV incidence. We designed a tailored, theory-based interactive HIV/STI prevention website for young BMSM, called HealthMpowerment.org (HMP) and conducted a small pilot trial comparing HMP to currently available HIV/STI websites. We present findings demonstrating feasibility and acceptability of delivering the intervention to the target population of young BMSM. Retention rates were 90% and 78% at one and three month follow-ups, respectively. Evaluation immediately after the intervention’s completion revealed that participants who used the HMP website reported high levels of user satisfaction and interest and low levels of website difficulty and frustration. At the end of the intervention, there was a trend in increased behavioral intentions to use condoms and engage in preparatory condom use behaviors in the intervention group compared to the control group (p=.10). We observed a reduction in mean scores on the CES-D scale among those in the intervention group that was not seen in the control group at the one-month follow-up, though this was not statistically significant. Feedback from exit interviews with study participants suggested that HMP is relevant to the prevention needs of young BMSM. Overall, the findings support the acceptability and feasibility of delivering this prevention program to a group that has few interventions despite bearing a significant burden of the epidemic. Future trials, combining internet and mobile phone technologies, are planned to test HMP among larger and more diverse populations of young BMSM

Use of Stress Testing and Diagnostic Catheterization after Coronary Stenting: Association of Site-level Patterns with Patient Characteristics and Outcomes in 247,052 Medicare Beneficiaries

To determine diagnostic testing patterns after percutaneous coronary intervention (PCI)

Patterns of Stress Testing and Diagnostic Catheterization After Coronary Stenting in 250 350 Medicare Beneficiaries

Patterns of non-invasive stress test (ST) and invasive coronary angiography (CA) utilization after percutaneous coronary intervention (PCI) are not well described in older populations

Development and initial testing of a computer-based patient decision aid to promote colorectal cancer screening for primary care practice

BACKGROUND: Although colorectal cancer screening is recommended by major policy-making organizations, rates of screening remain low. Our aim was to develop a patient-directed, computer-based decision aid about colorectal cancer screening and investigate whether it could increase patient interest in screening. METHODS: We used content from evidence-based literature reviews and our previous decision aid research to develop a prototype. We performed two rounds of usability testing with representative patients to revise the content and format. The final decision aid consisted of an introductory segment, four test-specific segments, and information to allow comparison of the tests across several key parameters. We then conducted a before-after uncontrolled trial of 80 patients 50–75 years old recruited from an academic internal medicine practice. RESULTS: Mean viewing time was 19 minutes. The decision aid improved patients' intent to ask providers for screening from a mean score of 2.8 (1 = not at all likely to ask, 4 = very likely to ask) before viewing the decision aid to 3.2 afterwards (difference, 0.4; p < 0.0001, paired t-test). Most found the aid useful and reported that it improved their knowledge about screening. Sixty percent said they were ready to be tested, 18% needed more information, and 22% were not ready to be screened. Within 6 months of viewing, 43% of patients had completed screening tests. CONCLUSION: We conclude that a computer-based decision aid can increase patient intent to be screened and increase interest in screening. Practice Implications: This decision aid can be viewed by patients prior to provider appointments to increase motivation to be screened and to help them decide about which modality to use for screening. Further work is required to integrate the decision aid with other practice change strategies to raise screening rates to target levels