Inter‐relationships of functional status in cerebral palsy: analyzing gross motor function, manual ability, and communication function classification systems in children

Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/92118/1/j.1469-8749.2012.04312.x.pd

Classification Systems of Communication for use in Epidemiological Surveillance of Children with Cerebral Palsy

Children with cerebral palsy (CP) often experience communication difficulties. We aimed to identify a classification system for communication of children with CP suitable for epidemiological surveillance. METHOD: Systems to classify the communication of children with CP were identified. The Communication Function Classification System (CFCS), Functional Communication Classification System (FCCS), and Viking Speech Scale (VSS) were chosen for further investigation and translated. They were administered to 155 children aged 4 to 13 years with CP (across all motor severity levels) from eight European countries. Children's parents/carers, speech therapists, and other health professionals applied the systems through direct observation. Other professionals applied them from case notes only. The systems were assessed for agreement, stability, ease, and feasibility of application. RESULTS: Test-retest stability was moderate-to-high for VSS (k=0.66-0.88), CFCS (k=uncomputed-0.91), and FCCS (k=0.52-0.91). Overall interrater agreement was fair to very good for every classification system. VSS achieved the best agreement between parents/carers and speech therapists. VSS was considered the easiest instrument to apply. INTERPRETATION: Because of its ease of use by a range of healthcare professionals, the VSS should be considered for CP registers which intend to survey speech intelligibility. For a wider assessment of communication, the CFCS or FCC should be consideredinfo:eu-repo/semantics/publishedVersio

Communication and eating data collected by cerebral palsy registries

Purpose: Motor impairments in cerebral palsy (CP) can disrupt communication and eating. CP registries were asked for communication and eating definitions and data collection methods. Methods: CP registries staff answered a 21-question survey. Questions included the types of communication and eating data collected (if any), frequency of collection, registries' operational definitions, and reasons for data not being collected.Results: Twenty-five of 26 active CP registries responded to the survey. Lack of resources, outside the registry's purpose, and lack of available instruments or data sources were reasons given for no data collection. Most registries' data collection occurred once when children were five-years-old or younger. Communication and eating definitions varied by registries, but most definitions focused on underlying hearing, speech, language, eating, and swallowing skills as well as assistive technology use. Hearing data were collected by 96% (n=25 registries); speech data were collected by 85% (n=22 registries); eating data were collected by 65% (n=17 registries); and language data were collected by 42% (n=11 registries). Conclusions: To compare or pool data across population-based CP registries, definitions of communication, speech, language, hearing, and eating should be standardized and a consensus minimal data set for communication and eating established. The frequency and timing of data collection need to be explicitly considered in surveillance and clinical research. A working group of CP registry staff and communication and eating clinical researchers should be convened to standardize definitions and data collection methods.Thesis (M.S.)--Michigan State University. Epidemiology, 2011Includes bibliographical reference

Coordinated Speech Therapy, Physiotherapy, and Pharmaceutical Care Telehealth for People with Parkinson Disease in Rural Communities: An Exploratory, 8-Week Cohort Study for Feasibility, Safety, and Signal of Efficacy

Introduction: The potential for coordinated, multidisciplinary telehealth to help connect people with Parkinson disease (PD) in rural areas to PD specialists is crucial in optimizing care. Therefore, this study aimed to test the feasibility, safety, and signal of efficacy of a coordinated telehealth program, consisting of speech therapy, physiotherapy, and pharmaceutical care, for people with PD living in some rural US communities. Methods: Fifteen individuals with PD living in rural Wyoming and Nevada, USA, participated in this single-cohort, 8-week pilot study. Participants were assessed before and after 8 weeks of coordinated, one-on-one telehealth using the following outcomes: (1) feasibility: session attendance and withdrawal rate; (2) safety: adverse events; and (3) signal of efficacy: Communication Effectiveness Survey, acoustic data (intensity, duration, work (intensity times duration)), Parkinson’s Fatigue Scale, 30 second Sit-to-Stand test, Parkinson’s Disease Questionnaire – 39, Movement Disorder Society Unified Parkinson’s Disease Rating Scale – Part III, and medication adherence. Results: Average attendance was greater than 85% for all participants. There were no serious adverse events and only nine minor events during treatment sessions (0.9% of all treatment sessions had a participant report of an adverse event); all nine cases resolved without medical attention. Although 14 of 16 outcomes had effect sizes trending in the direction of improvement, only two were statistically significant using non-parametric analyses: 30 second Sit-to-Stand (pre-test median=11.0 (interquartile range (IQR)=6.0); post-test median=12.0 (IQR=3.0) and acoustic data work (pre-test median=756.0 dB s (IQR=198.4); post-test median=876.3 dB s (IQR=455.5), p \u3c 0.05. Conclusion: A coordinated, multidisciplinary telehealth program was safe and feasible for people in rural communities who have PD. This telehealth program also yielded a signal of efficacy for most of the outcomes measured in the study

Parkinson’s Disease Support Groups in Rural America: Barriers, Resources, and Opportunities

People with Parkinson’s disease who live in rural communities may lack information and support regarding their condition, compared to those in urban or suburban areas. For the study described herein, the researchers sought to gain a deeper understanding of support group experiences of rural Parkinson’s disease stakeholders through merging an interpretive phenomenological design with Community-based Participatory Research (CBPR). Using this merged approach, we collected qualitative data from five focus groups to gain a community perspective. The qualitative data was analyzed thematically, first, and then further explored for an overall essence. The theme, Support Group Benefits: Opportunities for Communication expounded upon the importance of support groups to Parkinson’s disease stakeholders. Barriers to Support Group Participation represented how the disease and the rural living conditions inhibited support group participation. Strategies to Improve Support Group Access demonstrated the different ways that the stakeholders had tried to overcome barriers and strengthen support groups. Notably, some participants discussed ways that support groups could increase their accessibility to more individuals with Parkinson’s living rurally so that they endured as a future resource. The themes and accessibility recommendations that emerged led the researchers to interpret the overall essence of this work as, experiencing support group benefits despite barriers, leaving a legacy

PREDICT-CP: study protocol of implementation of comprehensive surveillance to predict outcomes for school-aged children with cerebral palsy

Objectives: Cerebral palsy (CP) remains the world’s most common childhood physical disability with total annual costs of care and lost well-being of $A3.87b. The PREDICT-CP (NHMRC 1077257 Partnership Project: Comprehensive surveillance to PREDICT outcomes for school age children with CP) study will investigate the influence of brain structure, body composition, dietary intake, oropharyngeal function, habitual physical activity, musculoskeletal development (hip status, bone health) and muscle performance on motor attainment, cognition, executive function, communication, participation, quality of life and related health resource use costs. The PREDICT-CP cohort provides further follow-up at 8–12 years of two overlapping preschool-age cohorts examined from 1.5 to 5 years (NHMRC 465128 motor and brain development; NHMRC 569605 growth, nutrition and physical activity). Methods and analyses: This population-based cohort study undertakes state-wide surveillance of 245 children with CP born in Queensland (birth years 2006–2009). Children will be classified for Gross Motor Function Classification System; Manual Ability Classification System, Communication Function Classification System and Eating and Drinking Ability Classification System. Outcomes include gross motor function, musculoskeletal development (hip displacement, spasticity, muscle contracture), upper limb function, communication difficulties, oropharyngeal dysphagia, dietary intake and body composition, participation, parent-reported and child-reported quality of life and medical and allied health resource use. These detailed phenotypical data will be compared with brain macrostructure and microstructure using 3 Tesla MRI (3T MRI). Relationships between brain lesion severity and outcomes will be analysed using multilevel mixed-effects models. Ethics and dissemination: The PREDICT-CP protocol is a prospectively registered and ethically accepted study protocol. The study combines data at 1.5–5 then 8–12 years of direct clinical assessment to enable prediction of outcomes and healthcare needs essential for tailoring interventions (eg, rehabilitation, orthopaedic surgery and nutritional supplements) and the projected healthcare utilisation

Improving Participation Outcomes and Interventions in Neurodisability: Co-designing Future Research

There is an urgent, agreed need to improve participation outcomes and interventions for children and young people with neurodisability. We worked together with service users and providers to design research into participation outcomes and interventions in neurodisability. We built on existing evidence about participation outcomes and interventions, and the WHO International Classification of Functioning, Disability and Health. We: (1) specified seven participation outcome categories for measurement; (2) prioritised these for improvement: self-care, friends and social, and physical activity ranked the highest; (3) identified eleven potential intervention categories for targeting the top priority, self-care, through eight hypothesised change mechanisms; and agreed for the interventions to be delivered as a ‘Menu of Interventions’ for personalised self-care support; and (4) designed a before-and-after mixed methods feasibility study to evaluate the Menu with children and young people (0-12 years), and their parents and therapists

Minimising impairment: Protocol for a multicentre randomised controlled trial of upper limb orthoses for children with cerebral palsy.

BACKGROUND: Upper limb orthoses are frequently prescribed for children with cerebral palsy (CP) who have muscle overactivity predominantly due to spasticity, with little evidence of long-term effectiveness. Clinical consensus is that orthoses help to preserve range of movement: nevertheless, they can be complex to construct, expensive, uncomfortable and require commitment from parents and children to wear. This protocol paper describes a randomised controlled trial to evaluate whether long-term use of rigid wrist/hand orthoses (WHO) in children with CP, combined with usual multidisciplinary care, can prevent or reduce musculoskeletal impairments, including muscle stiffness/tone and loss of movement range, compared to usual multidisciplinary care alone. METHODS/DESIGN: This pragmatic, multicentre, assessor-blinded randomised controlled trial with economic analysis will recruit 194 children with CP, aged 5-15 years, who present with flexor muscle stiffness of the wrist and/or fingers/thumb (Modified Ashworth Scale score =1). Children, recruited from treatment centres in Victoria, New South Wales and Western Australia, will be randomised to groups (1:1 allocation) using concealed procedures. All children will receive care typically provided by their treating organisation. The treatment group will receive a custom-made serially adjustable rigid WHO, prescribed for 6 h nightly (or daily) to wear for 3 years. An application developed for mobile devices will monitor WHO wearing time and adverse events. The control group will not receive a WHO, and will cease wearing one if previously prescribed. Outcomes will be measured 6 monthly over a period of 3 years. The primary outcome is passive range of wrist extension, measured with fingers extended using a goniometer at 3 years. Secondary outcomes include muscle stiffness, spasticity, pain, grip strength and hand deformity. Activity, participation, quality of life, cost and cost-effectiveness will also be assessed. DISCUSSION: This study will provide evidence to inform clinicians, services, funding agencies and parents/carers of children with CP whether the provision of a rigid WHO to reduce upper limb impairment, in combination with usual multidisciplinary care, is worth the effort and costs. TRIAL REGISTRATION: ANZ Clinical Trials Registry: U1111-1164-0572