Development of the Gross Motor Function Family Report (GMF-FR) for Children with Cerebral Palsy.

Purpose: To describe the initial steps in the development of a family-completed, modified version of the Gross Motor Function Measure (GMFM-88) to report gross motor function of young people with cerebral palsy in their natural environments. Methods: Development of the Gross Motor Function - Family Report (GMF-FR) was based on expert opinion involving 13 experienced clinicians and researchers, in four steps: (1) item identification to target items that reflect functional gross motor performance; (2) item selection; (3) critical analysis of the items; and (4) item and scoring modification. Results: Several modifications to existing items and scoring were made, including wording changes to optimize ease of families' understanding, the addition of photographs to illustrate all items, changes to the items to enable use of furniture instead of specialized equipment, and modifications to scoring criteria to ensure a focus on functional motor skills. Ultimately, 30 items were selected, and specific testing/scoring instructions were created for each item. Conclusions: GMF-FR is a new family-report tool, based on the GMFM-88. When validated, it can be used as a telehealth outcome measure to capture family-reported functional motor skill performance in home and community environments.

Objectif : décrire les premières étapes de l'élaboration d'une version modifiée de la mesure de la fonction motrice globale (GMFM-88) remplie par la famille pour rendre compte de la fonction motrice globale des jeunes ayant la paralysie cérébrale dans leur environnement naturel. Méthodologie : l'élaboration de l'outil de fonction motrice globale ­ rapport familial (GMF-FR), qui repose sur l'avis d'experts ­ soit 13 cliniciens et chercheurs d'expérience ­, s'est déclinée en quatre étapes : 1) détermination des points, pour cibler ceux qui reflète le rendement de la fonction motrice globale; 2) sélection des points; 3) analyse critique des points et 4) modifications aux points et aux scores. Résultats : les experts ont apporté plusieurs modifications aux points et aux scores en place, y compris de la reformulation pour que les familles comprennent plus facilement, l'ajout de photos pour illustrer tous les points, des changements aux points pour utiliser des meubles plutôt que du matériel spécialisé et la modification des critères des scores afin de se concentrer sur les habiletés motrices fonctionnelles. Au bout du compte, les experts ont retenu 30 points, chacun étant assorti de directives précises sur le test et le score. Conclusions : La mesure GMF-FR est un nouvel outil de déclaration par la famille, inspiré du GMFM-88. Une fois validé, il peut être utilisé comme mesure de résultats en télésanté, afin de saisir le rendement des habiletés motrices fonctionnelles à la maison et dans les environnements communautaires.

Acute coronary syndromes.

Although substantial progress has been made in the diagnosis and treatment of acute coronary syndromes, cardiovascular disease remains the leading cause of death globally, with nearly half of these deaths due to ischaemic heart disease. The broadening availability of high-sensitivity troponin assays has allowed for rapid rule-out algorithms in patients with suspected non-ST-segment elevated myocardial infarction (NSTEMI). Dual antiplatelet therapy is recommended for 12 months following an acute coronary syndrome in most patients, and additional secondary prevention measures including intensive lipid-lowering therapy (LDL-C <1·4 mmol/L), neurohormonal agents, and lifestyle modification, are crucial. The scientific evidence for diagnosis and management of acute coronary syndromes continues to evolve rapidly, including adapting to the COVID-19 pandemic, which has impacted all aspects of care. This Seminar provides a clinically relevant overview of the pathobiology, diagnosis, and management of acute coronary syndromes, and describes key scientific advances.

Building a culture of engagement at a research centre for childhood disability.

BACKGROUND: Engaging patients and family members as partners in research studies has become a widespread practice in healthcare. However, relatively little has been documented about what happens after the research study ends. For example, is patient and family engagement embedded in the wider infrastructure of organizations, and if so how? What are the long-term effects of engaging parents on research teams on the culture of how research is conducted? This study seeks to address these two gaps by examining how a culture of family engagement has been built over time at CanChild Centre for Childhood Disability Research at McMaster University in Ontario, Canada. METHODS: This study is based on ethnographic research methodology and combines elements of organizational ethnography, interviews, and collaborative auto-ethnography with parent partners, researchers, staff, and trainees. RESULTS: Since the inception of CanChild Centre for Childhood Disability Research at McMaster University in 1989, parents have been involved in research studies. Over time, this involvement evolved from being consulted on research studies to undertaking decision-making roles as partners and most recently as co-principal investigators. A growing infrastructure fosters a community of engagement that goes beyond the individual research study, and often beyond CanChild. This infrastructure consists of training, knowledge mobilization and social networking. In addition, the "softer" building blocks of CanChild's culture of engagement are an openness to learning from others, a commitment to relationship building, and a drive to grow and improve. These values are espoused by the leadership and are instilled in the next generation of researchers to inform both research and clinical work. While some challenges should be acknowledged when researchers and family partners work together on research studies, we identify a number of strategies that we have used in our studies to foster authentic and meaningful family-researcher partnerships. CONCLUSION: Engaging patients and families as partners in research constitutes a culture shift in health research, whereby studies about patients and families are carried out with them. Developing a community of engagement that transcends an individual research study is a step towards creating a culture of research that is truly shaped by the people about whom the research is being done.

More and more patients and family members are getting involved in health research studies as partners. However we do not know much about what happens after the research study ends. This article looks at how parents have been involved in research studies at CanChild Centre for Childhood Disability Research at McMaster University in Ontario, Canada. CanChild researchers, staff, students and parents were asked about their experiences of working together on research studies. One of the researchers then pooled together all of these stories, shared them with everyone to get their feedback, and wrote the initial draft of this article. All the people interviewed were invited to read the article and to add their thoughts and opinions until everyone was satisfied with the final product. Our shared stories show that a lot has changed since CanChild was established in 1989. At first, researchers consulted with parents when they were doing a study. Now, many parents are partners and co-principal investigators on research studies. CanChild has also developed opportunities for parents and researchers to get training in patient-family engagement and to network with each other outside of research studies. Researchers, staff, students and parents talked about what makes research partnerships successful, including: being open to learning from each other; taking the time to get to know each other as people; and always trying to do better. They also shared some of the challenges that come up on research studies and suggested strategies for working through them.

Scootering for Children and Youth Is More Than Fun: Exploration of a Feasible Approach to Improve Function and Fitness.

PURPOSE: Describe scootering as a physical therapy intervention for children/adolescents with mobility limitations within the "F-Words for Child Development" (fitness, function, family, friends, fun, and future) and through motion analysis. METHODS: Perspectives of scootering were explored using the holistic "F-words for Child Development" recommendations for pediatric rehabilitation and through 3-dimensional instrumented motion analysis of children/adolescents with cerebral palsy and children/adolescents with typical development. RESULTS: Scootering was consistent with the F-words tenets for rehabilitative best practice. Many of the motion characteristics of scootering reflected desirable exercise and gait attributes relevant to children/adolescents with cerebral palsy. CONCLUSIONS: Scootering is a feasible, functional, and fun activity that has the potential to address many aspects of fitness, function, and gait; meet the needs of families; and provide opportunities for interaction with friends. It is a physical therapy intervention that has the potential to contribute to future health and well-being of children with disabilities. VIDEO ABSTRACT: For more insights from the authors, see Supplemental Digital Content 1, available at: http://links.lww.com/PPT/A331.

Focus on Risk Factors for Cardiometabolic Disease in Cerebral Palsy: Toward a Core Set of Outcome Measurement Instruments.

OBJECTIVE: To identify existing outcome measurement instruments (OMIs) assessing risk factors for cardiometabolic disease in adolescents and adults with cerebral palsy (CP) reported on in the literature or used in the field. DATA SOURCES: The COnsensus-based Standards for the selection of health Measurement Instruments database of systematic reviews and 4 electronic databases (Embase, MEDLINE/Ovid, MEDLINE/Pubmed, PsychINFO) were searched up to June 19, 2017, that yielded 2594 articles. Experts in the field were consulted to identify any additional OMIs. STUDY SELECTION: Two reviewers independently applied inclusion criteria to select eligible studies using or evaluating measurement properties of OMIs assessing 1 of 8 outcomes: cardiorespiratory endurance, body size, body composition, physical behavior, sleep, nutrition, blood pressure, and blood lipids and glucose. Studies with an experimental or observational design including ≥10 adolescents or adults with CP were included. DATA EXTRACTION: One reviewer extracted data that were summarized for study and sample characteristics, outcomes, OMIs used, and if applicable data on measurement properties. Two reviewers rated the methodological quality and the quality of the OMIs. Feasibility for clinical practice and research was rated by experts in the field. DATA SYNTHESIS: Ninety OMIs were identified from 56 included articles and by the experts. Seventy OMIs pertained to cardiorespiratory endurance, body size, body composition, and physical behavior, whereas only 5 were identified for sleep and nutrition. Overall synthesis revealed that there is moderate to poor evidence for good quality of OMIs in this population. Based on feasibility for clinical practice, experts agreed on a single OMI per outcome (and 2 for cardiorespiratory endurance) to be included in a core set. CONCLUSION: Despite the range of available OMIs to assess risk factors for cardiometabolic disease in adolescents and adults with CP, evidence of good quality is often lacking. Nonetheless, a preliminary core set of 9 OMIs was systematically developed.

Comparison of Nest Defense Behaviors of Goshawks (Accipiter gentilis) from Finland and Montana.

As human impacts on wildlife have become a topic of increasing interest, studies have focused on issues such as overexploitation and habitat loss. However, little research has examined potential anthropogenic impacts on animal behavior. Understanding the degree to which human interaction may alter natural animal behavior has become increasingly important in developing effective conservation strategies. We examined two populations of northern goshawks (Accipiter gentilis) in Montana and Finland. Goshawks in Finland were not protected until the late 1980s, and prior to this protection were routinely shot, as it was believed that shooting goshawks would keep grouse populations high. In the United States, Goshawk were not managed as predator control. Though aggressive nest defense has been characterized throughout North America, goshawks in Finland do not show this same behavior. To quantify aggression, we presented nesting goshawks with an owl decoy, a human mannequin, and a live human and recorded their responses to each of the trial conditions. We evaluated the recordings for time of response, duration of response, whether or not an active stimulus was present to elicit the response (i.e., movement or sound), and the sex of the bird making the response. We used t-Test with unequal variance to compare mean number of responses and response duration. Our results suggested that goshawks in Montana exhibit more aggressive nest defense behaviors than those in Finland. While this could be due to some biotic or abiotic factor that we were not able to control for in a study on such a small scale, it is also possible that the results from this study suggest another underlying cause, such as an artificial selection pressure created by shooting goshawks.

Gait characteristics of children and youth with chemotherapy induced peripheral neuropathy following treatment for acute lymphoblastic leukemia.

Sensory changes and muscle weakness attributable to chemotherapy induced peripheral neuropathy (CIPN) are possible sequela of treatment for acute lymphoblastic leukemia (ALL) which can result in long-lasting difficulties with walking. The purpose of this study was to describe the gait characteristics of children and youth treated for ALL who exhibited CIPN compared to typically developing children and youth using 3D motion analyses and electromyography (EMG). Temporal-spatial, kinematic, kinetic, and electromyographic (EMG) data were collected from 17 youth (mean age 11.2 (5.7) years) with CIPN and compared to data from 10 typically developing youth. Although the gait of the CIPN group was heterogeneous between and within participants, the CIPN group demonstrated primary deviations attributable to CIPN and secondary deviations, both passive effects and active compensatory mechanisms. They had significantly less peak hip extension, knee flexion in loading, dorsiflexion at initial contact, plantarflexion at pre-swing, and dorsiflexion in swing, shorter step lengths, and lower ankle moments and powers than the comparison participants. EMG data from the gastrocnemius and tibialis anterior muscles showed excessive co-activation and atypical firing including out of phase firing of the gastrocnemius in late swing and loading and premature firing of the tibialis anterior in terminal stance. This study, using 3D motion analysis and EMG in youth with CIPN, showed variability in gait suggesting that clinical decision-making should be based on a detailed understanding of individual impairments and associated gait abnormalities.

Consensus Planning Toward a Community-Based Approach to Promote Physical Activity in Youth with Cerebral Palsy.

AIMS: To engage researchers and knowledge-users in six Ontario communities in knowledge translation initiatives to identify community-informed elements to guide the development of an optimal physical activity program for youth with cerebral palsy (CP) and to support research efforts. METHODS: The project included three iterative steps, i.e., an environmental scan of five communities, six regional planning meetings, and a member-checking survey, followed by a Delphi survey to reach consensus on the elements deemed most important. RESULTS: Twenty-four elements were identified to include in programs promoting physical activity in youth with CP, which were organized in five categories: raise awareness of the options and opportunities (n = 4); pique interest and motivate youth to become and stay active (n = 9); ensure community programs are ready for youth with a disability (n = 2); be fit, fit in, and finding the best fit (n = 5); and explore the layers of physical activity and how they interact (n = 4). CONCLUSIONS: The 24 elements established characterize the key concepts that families and community stakeholders value when developing physical activity programs for youth with CP. When incorporated into clinical practice, each of the elements may be used to evaluate key aspects of outcome for individuals with CP.

Physical Activity Participation and Preferences: Developmental and Oncology-Related Transitions in Adolescents Treated for Cancer.

PURPOSE: To describe motor function and participation in, barriers to, and preferences for physical activity (PA) in adolescents during and after treatment of cancer and to discuss PA promotion in the context of developmental and cancer transitions. METHOD: A cross-sectional survey study used the Transfer and Basic Mobility and Sports/Physical Functioning self-report and parent-report scales of the Pediatric Outcomes Data Collection Instrument (PODCI) and questions about PA participation and preferences to collect information from 80 adolescents and 63 parents. RESULTS: PODCI scores for adolescents receiving treatment were more variable and significantly lower than those of adolescents who had been off treatment for more than 2 years. Fatigue, pain, general health, and doctor's orders were frequently identified as barriers to PA for adolescents receiving treatment. Many did not achieve recommended levels of PA. The adolescents expressed preferences for being active with friends and family, at home or in school, in the afternoon or evening, and through daily recreational and sports activities typical of teenagers. CONCLUSIONS: Physical abilities and participation in and barriers to PA vary across the cancer journey. Interventions should be sensitive to variability and acknowledge individual preferences and environments throughout the trajectories and transitions of cancer treatment and youth development to achieve lifelong healthy lifestyles.

Objet: Décrire la fonction motrice, la participation, les obstacles et les préférences en matière d'activité physique chez les adolescents avant et après un traitement du cancer et discuter de la promotion de l'activité physique dans le contexte des transitions du développement et du cancer. Méthode: Une étude transversale a utilisé les échelles d'autodéclaration et de déclaration par les parents du questionnaire Pediatric Outcomes Data Collection Instrument (PODCI) et des questions sur la participation et les préférences en matière d'activité physique afin de recueillir des données sur la mobilité des transferts, la mobilité de base, le fonctionnement dans les sports et le fonctionnement physique auprès de 80 adolescents et de 63 parents. Résultats: Les résultats du questionnaire PODCI pour les adolescents recevant un traitement étaient plus variables et considérablement plus bas que pour les adolescents qui avaient terminé leur traitement il y a plus de deux ans. La fatigue, la douleur, la santé en général et les recommandations du médecin étaient fréquemment désignées comme étant des obstacles à l'activité physique chez les adolescents qui reçoivent un traitement. Bon nombre d'entre eux n'atteignaient pas les niveaux d'activité physique recommandés. Les adolescents ont exprimé des préférences pour l'activité physique pratiquée avec des amis ou en famille, à la maison ou à l'école, dans l'après-midi ou le soir et dans des loisirs et des sports que les adolescents choisissent habituellement. Conclusions: Les capacités physiques, la participation et les obstacles en matière d'activité physique varient au cours du parcours du cancer. Les interventions devraient tenir compte de la variabilité ainsi que des préférences et des environnements des individus au cours des trajectoires et des transitions du traitement du cancer et du développement du jeune pour que ce dernier puisse adopter de saines habitudes de vie tout au long de sa vie.

Physical Activity in Adolescents following Treatment for Cancer: Influencing Factors.

The purpose of this study was to examine physical activity levels and influencing individual and environmental factors in a group of adolescent survivors of cancer and a comparison group. Methods. The study was conducted using a "mixed methods" design. Quantitative data was collected from 48 adolescent survivors of cancer and 48 comparison adolescents using the Godin Leisure-Time Exercise Questionnaire, the Fatigue Scale-Adolescents, and the Amherst Health and Activity Study-Student Survey. Qualitative data was collected in individual semistructured interviews. Results. Reported leisure-time physical activity total scores were not significantly different between groups. Physical activity levels were positively correlated with adult social support factors in the group of adolescent survivors of cancer, but not in the comparison group. Time was the primary barrier to physical activity in both groups. Fatigue scores were higher for the comparison but were not associated with physical activity levels in either group. The qualitative data further supported these findings. Conclusions. Barriers to physical activity were common between adolescent survivors of cancer and a comparative group. Increased knowledge of the motivators and barriers to physical activity may help health care providers and families provide more effective health promotion strategies to adolescent survivors of pediatric cancer.

"It's the participation that motivates him": physical activity experiences of youth with cerebral palsy and their parents.

Youth with cerebral palsy (CP) face significant barriers to participation in physical activity (PA). There is little information available about the nature of these barriers. Seventeen (17) youth and/or their parents participated in focus groups and individual interviews to identify factors that make it easy or hard to be physically active. Four themes emerged across functional levels: environmental and personal factors, limitations related to impairment in body structure and function, the perception that health benefits alone do not motivate youth to be physically active, and variable preferences for activity delivery. Dialogue with participants revealed that interventions to promote PA in youth should mitigate the interactions between personal and environmental factors that act as barriers to PA, and enhance the interactions that facilitate PA. Partnerships between researchers, policy makers, service providers, and families must be developed to address system barriers and build capacity in youth with CP and their communities.

Effect of yoga exercise therapy on oxidative stress indicators with end-stage renal disease on hemodialysis.

BACKGROUND: Oxidative stress promotes endothelial dysfunction and atherosclerosis in chronic renal disease. OBJECTIVES: This study investigated the impact of Hatha yoga on oxidative stress indicators and oxidant status, in patients with end-stage renal disease (ESRD) on hemodialysis. DESIGN: This prospective randomized study consisted of 33 ESRD patients in the Hatha yoga exercise group who were matched with 35 ESRD patients in the control group. OUTCOME MEASURES: The oxidative stress indicators (malondialdehyde - MDA, protein oxidation - POX, phospholipase A2 - PLA2 activity) and the oxidative status (superoxide dismutase (SOD) and catalase activities) were determined in the blood samples taken at the pre-hemodialysis treatment, at baseline (0 months) and after four months. RESULTS: In patients in the Hatha yoga exercise group, lipid peroxidation, as indicated by MDA decreased by 4.0% after four months (P = 0.096). There was also a significant reduction in the activity of PLA from 2.68 ± 0.02 IU / L to 2.34 IU / L (- 12.7%; P = 0.010) and POX from 2.28 ± 0.02 nmol / mg to 2.22 ± 0.01 nmol / mg (- 22.6%; P = 0.0001). The activity of SOD significantly increased from 12.91 ± 0.17 U / L to 13.54 ± 0.15 U / L (4.65%; P = 0.0001) and catalase from 79.83 ± 0.63 U / L to 80.54 ± 0.80 U / L (0.90%; P = 0.0001). There was a significant correlation between the pre-hemodialysis oxidative stress parameters at the zero month and after four months for the activities of PLA (r = 0.440), catalase (r = 0.872), and SOD (r = 0.775). CONCLUSIONS: These findings suggest that the Hatha yoga exercise has therapeutic, preventative, and protective effects in ESRD subjects, by decreasing oxidative stress.

Effect of exercise therapy on lipid parameters in patients with end-stage renal disease on hemodialysis.

BACKGROUND: Dyslipidemia has been established as a well-known traditional risk factor for cardiovascular disease in chronic kidney disease patients. AIM: This study investigated the impact of Hatha yoga exercise on lipid parameters in patients with end-stage renal disease (ESRD) on hemodialysis. MATERIALS AND METHODS: This prospective randomized study consisted of 33 ESRD patients in the Hatha yoga exercise group that was matched with 35 ESRD patients in the control group. Serum total cholesterol, triglycerides, low-density lipoprotein (LDL)-cholesterol, and high-density lipoprotein (HDL)-cholesterol were determined at baseline (0 month) and after 4 months. RESULTS: Comparing values after 4 months versus baseline in the prehemodialysis Hatha yoga exercise group, there was found a significant decrease in total cholesterol from 5.126 ± 0.092 mmol/l to 4.891 ± 0.072 mmol/l (-4.58%; P = 0.0001), triglycerides from 2.699 ± 0.078 mmol/l to 2.530 ± 0.063 mmol/l (-6.26%; P = 0.0001), LDL-cholesterol from 2.729 ± 0.083 mmol/l to 2.420 ± 0.066 mmol/l (-11.32%; P = 0.0001), and total cholesterol/HDL-cholesterol ratio from 5.593 ± 0.119 mmol/l to 4.907 ± 0.116 mmol/l (-12.26%; P = 0.047). For patients in the Hatha yoga exercise group, 51.5% had normal total cholesterol at 0 month while 70.0% had normal total cholesterol (P < 0.05) after 4 four months and 54.5% of patients had normal LDL-cholesterol at 0 month while 84.9% had normal LDL-cholesterol after 4 months (P < 0.05). CONCLUSION: These findings suggest that Hatha yoga exercise has preventive and beneficial effects and may be a safe therapeutic modality in ESRD patients.

Performance of children on the Community Balance and Mobility Scale.

This study describes the performance of children 8-11 years of age on the Community Balance and Mobility Scale (CB&M) and associations between performance and age, body mass index (BMI), and sex. A convenience sample of 84 was recruited. The CB&M was administered using instructions we developed for children. Mean CB&M total scores (95% confidence intervals) for age groups were 8: 70.1 (64.2, 76.1); 9: 72.8 (68.7, 76.8); 10: 79.2 (76.6, 81.7); and 11: 82.9 (79.2, 86.5). None of the children achieved the maximum score. Scores increased with age, and overweight/obese children had relatively lower scores. There were no significant differences between males and females. A regression analysis found 28.1% of the variation in the CB&M total scores was explained by age (p < .001), BMI (p < .01), and sex (p = .25) suggesting that other factors contribute to variation in balance and mobility proficiency. The modified instructions and scoring patterns from this study can assist in using the CB&M in children of ages 8-11 years.

Children receiving treatment for cancer and their caregivers: a mixed methods study of their sleep characteristics.

BACKGROUND: Sleep has a significant impact on the daily functioning of children and their parents. The purpose of this study was to describe and gain an understanding of the sleep characteristics of children receiving treatment for cancer and their caregivers using a mixed methods concurrent triangulation design. PROCEDURE: Data were collected from questionnaires completed by 35 caregivers of children receiving treatment for cancer and compared to similar data from 64 caregivers of healthy children. RESULTS: There was considerable variability in the sleep characteristics of the children receiving treatment for cancer as reported by their caregivers. However, as a group, the magnitude of their sleep problems, particularly among the adolescents, was significantly greater than that of the comparison group and had the potential to impact negatively on their participation in everyday life. They had poorer sleep efficiency. Many impairments, particularly pain, nightmares, and symptoms associated with steroid administration, impacted their sleep. Their caregivers also experienced an increased prevalence of sleep issues, which impacted their daytime functioning. Suggestions to prevent and treat the sleep issues of children receiving treatment for cancer focused on practicing good sleep habits, ensuring a safe, secure, and comfortable sleep environment, and using non-pharmaceutical and pharmaceutical interventions to address impairments interfering with sleep. Caregivers noted that it was important to take care of themselves by getting sufficient sleep and accepting help from others. CONCLUSIONS: Sleep issues are prevalent in families of children receiving treatment for cancer and should be assessed routinely and addressed.

Identification of a core set of exercise tests for children and adolescents with cerebral palsy: a Delphi survey of researchers and clinicians.

AIM: Evidence-based recommendations regarding which exercise tests to use in children and adolescents with cerebral palsy (CP) are lacking. This makes it very difficult for therapists and researchers to choose the appropriate exercise-related outcome measures for this group. This study aimed to identify a core set of exercise tests for children and adolescents with CP. METHOD: Fifteen experts (10 physical therapists/researchers and five exercise physiologists; three from the Netherlands, two from the USA, one from the UK, five from Canada, and four from Australia) participated in a Delphi survey which took four stages to achieve a consensus. Based on the information that was collected during the survey, a core set of measures was identified for levels I to IV of the Gross Motor Function Classification System (GMFCS). RESULTS: For children with CP classified at GMFCS levels I and II, tests were identified for two motor skills (walking and cycling). For the subgroup of children with CP classified at GMFCS level III, the tests that were identified related to walking, cycling, and arm cranking. For children with CP classified at GMFCS level IV, the tests included in the core set were related to cycling and arm cranking. INTERPRETATION: The core set will help physical therapists, exercise physiologists, and other health professionals who work with children and adolescents with CP to decide which test(s) to use in clinical practice or research. This will facilitate comparability of results across studies and clinical programmes.

Communication regarding breathing support options for youth with Duchenne muscular dystrophy.

BACKGROUND: Ventilators for home use, manual and mechanically assisted coughing techniques, and the services of in-home respiratory therapists are options for youth with Duchenne muscular dystrophy (DMD). Evidence supports the use of these modalities, but there seems to be few youth who are receiving these therapies. Is there a knowledge transfer issue? Is there a lack of resources? What is the best way to discuss the issues? What do youth and parents want? OBJECTIVE: To determine practices, attitudes and beliefs regarding the timing and content of client/family communication related to ventilatory support decisions for individuals with DMD. METHODS: A questionnaire was sent to all 19 children's treatment centres in Ontario. The lead clinician responded on behalf of his or her centre. Another questionnaire was given to 11 families who attended a parent support meeting. RESULTS: Respondents from the treatment centres who provide services for youth with DMD indicated that there are resources in terms of personnel and an obligation to provide information about ventilatory support, but provision of information is often late and/or inconsistent. The family respondents wanted more information and they wanted it earlier than they are currently receiving it. CONCLUSIONS: Parents and youth dealing with DMD have many resources at their disposal in Ontario. The evidence is clear that there are long-term health benefits to providing ventilatory support as well as instruction in coughing assistance. Due to the classical nature of disease progression in DMD, information should be provided within reasonable timelines.

Distribution of contractures and spinal malalignments in adolescents with cerebral palsy: observations and influences of function, gender and age.

OBJECTIVE: To describe distributions of contracture and spinal malalignment in adolescents with cerebral palsy (CP) and determine associations with age, gender and function. METHODS: Data were collected using the Spinal Alignment and Range of Motion Measure (SAROMM), the Gross Motor Function Classification System (GMFCS) and the Activity Scale for Kids (ASK). RESULTS: Two hundred and twenty-five adolescents (122 males; mean age 14 years 8 months; SD 1 year 8 months) participated. SAROMM scores by GMFCS levels and item scores in various body regions are presented. Correlations between indices of function and SAROMM total score were >0.70 (p<0.001). Males in GMFCS levels I/V obtained higher total SAROMM scores than females. Age was significantly associated with SAROMM scores for GMFCS levels IV/V participants. CONCLUSIONS: These data provide benchmarks for evaluating impairments in adolescents with CP and support the role of function in contracture development and possibly prevention. Gender and age were factors that modified outcomes.