36 research outputs found
School Functioning in Adolescents With Chronic Fatigue Syndrome
Background: It is well known that adolescents with chronic fatigue syndrome (CFS) experience greater school absenteeism compared to healthy adolescents. Less is known about other important aspects of school functioning including school participation, school connectedness, and academic performance in students with CFS. The aim of this study was to compare school functioning as a multifaceted construct in adolescents with CFS to healthy adolescent peers. We also explored whether illness factors were associated with school functioning in adolescents with CFS.Methods: Thirty-nine participants with CFS and 28 healthy controls (aged 13â17 years) completed a range of subjective and objective measures of school functioning, as well as measures of fatigue and emotional symptoms.Results: Adolescents with CFS demonstrated significantly higher rates of school absence, as well as poorer school-related quality of life, reduced school participation, poorer connectedness with school, and reduced academic performance. Fatigue severity and emotional symptoms were significantly associated with most aspects of school function.Conclusions: Adolescents with CFS are at increased risk for poor school functioning across a range of indicators which extend beyond school absenteeism
Physical activity preferences of people living with brain injury : Formative qualitative research to develop a discrete choice experiment
Background and Objective
The World Health Organization physical activity guidelines for people living with disability do not consider the needs of people living with moderate-to-severe traumatic brain injury. This paper describes the qualitative co-development of a discrete choice experiment survey to inform the adaption of these guidelines by identifying the physical activity preferences of people living with moderate-to-severe traumatic brain injury in Australia.
Methods
The research team comprised researchers, people with lived experience of traumatic brain injury and health professionals with expertise in traumatic brain injury. We followed a four-stage process: (1) identification of key constructs and initial expression of attributes, (2) critique and refinement of attributes, (3) prioritisation of attributes and refinement of levels and (4) testing and refining language, format and comprehensibility. Data collection included deliberative dialogue, focus groups and think-aloud interviews with 22 purposively sampled people living with moderate-to-severe traumatic brain injury. Strategies were used to support inclusive participation. Analysis employed qualitative description and framework methods.
Results
This formative process resulted in discarding, merging, renaming and reconceptualising attributes and levels. Attributes were reduced from an initial list of 17 to six: (1) Type of activity, (2) Out-of-pocket cost, (3) Travel time, (4) Who with, (5) Facilitated by and (6) Accessibility of setting. Confusing terminology and cumbersome features of the survey instrument were also revised. Challenges included purposive recruitment, reducing diverse stakeholder views to a few attributes, finding the right language and navigating the complexity of discrete choice experiment scenarios.
Conclusions
This formative co-development process significantly improved the relevance and comprehensibility of the discrete choice experiment survey tool. This process may be applicable in other discrete choice experiment studies
International Consensus Statement on Rhinology and Allergy: Rhinosinusitis
Background: The 5 years since the publication of the first International Consensus Statement on Allergy and Rhinology: Rhinosinusitis (ICARâRS) has witnessed foundational progress in our understanding and treatment of rhinologic disease. These advances are reflected within the more than 40 new topics covered within the ICARâRSâ2021 as well as updates to the original 140 topics. This executive summary consolidates the evidenceâbased findings of the document. Methods: ICARâRS presents over 180 topics in the forms of evidenceâbased reviews with recommendations (EBRRs), evidenceâbased reviews, and literature reviews. The highest grade structured recommendations of the EBRR sections are summarized in this executive summary. Results: ICARâRSâ2021 covers 22 topics regarding the medical management of RS, which are grade A/B and are presented in the executive summary. Additionally, 4 topics regarding the surgical management of RS are grade A/B and are presented in the executive summary. Finally, a comprehensive evidenceâbased management algorithm is provided. Conclusion: This ICARâRSâ2021 executive summary provides a compilation of the evidenceâbased recommendations for medical and surgical treatment of the most common forms of RS
Post-operative rehabilitation procedures for children with cerebral palsy having lower limb orthopaedic surgery
Rehabilitation following lower limb orthopaedic surgery in cerebral palsy: Development of a âresources toolkitâ for families and healthcare professionals
Characteristics and assessment of children undergoing upper limb surgery for management of cerebral palsy
**Background**: Surgical intervention for improvement of upper limb function in children with cerebral palsy is reported to be of benefit where careful patient selection is taken into consideration. Currently there are no clinical guidelines to help determine selection of individuals best suited for operative management, nor does research exist that identifies characteristics of the patient cohort currently being selected as appropriate for surgery. The aim of this study is to determine the current trends in selection, assessment and management of patients with cerebral palsy undergoing upper limb surgery.
**Methods**: This retrospective study included data from 102 individuals with cerebral palsy who underwent upper limb surgical management during a 10-year time period at the Royal Childrenâs Hospital (RCH), Melbourne, Australia. There were 138 separate surgical events involving 579 procedures during this period. Data regarding the characteristics of the individuals and their perioperative assessment were collected and analysed. This study received ethics approval from the RCH Human Research Ethics Committee prior to commencement (reference number 37313A).
**Results**: The cohort was 56.9 per cent male, and the median age at time of surgery was 14.2 years old. Motor involvement was 51.0 per cent bilateral and 49.0 per cent unilateral, and 96.0 per cent of individuals had a spastic component. The most common surgical goal was position care (50.4% of cases), followed by activity and participation (47.9% of cases). Preoperative outcome measures were used in 69.6 per cent of cases.
**Conclusions**: Currently, individuals are selected for surgery using variable preoperative assessment. Selection has great potential to differ between clinicians. These compounding issues provide a rationale for initiating further research into understanding the characteristics of this patient group and promoting better standardisation of perioperative assessment
School Functioning in Adolescents With Chronic Fatigue Syndrome
Background: It is well known that adolescents with chronic fatigue syndrome (CFS) experience greater school absenteeism compared to healthy adolescents. Less is known about other important aspects of school functioning including school participation, school connectedness, and academic performance in students with CFS. The aim of this study was to compare school functioning as a multifaceted construct in adolescents with CFS to healthy adolescent peers. We also explored whether illness factors were associated with school functioning in adolescents with CFS. Methods: Thirty-nine participants with CFS and 28 healthy controls (aged 13-17 years) completed a range of subjective and objective measures of school functioning, as well as measures of fatigue and emotional symptoms. Results: Adolescents with CFS demonstrated significantly higher rates of school absence, as well as poorer school-related quality of life, reduced school participation, poorer connectedness with school, and reduced academic performance. Fatigue severity and emotional symptoms were significantly associated with most aspects of school function. Conclusions: Adolescents with CFS are at increased risk for poor school functioning across a range of indicators which extend beyond school absenteeism
Intrathecal baclofen therapy in children : An analysis of individualized goals
Aim
To determine whether intrathecal baclofen (ITB) therapy improves performance and performance satisfaction in goal areas identified by patients' parents.
Method
This study formed part of an ongoing multicentre national audit involving six paediatric ITB pump implant centres across Australia. The Canadian Occupational Performance Measure was the primary outcome measure utilized at baseline, 6 months, and 12 months after pump implants in paediatric patients receiving ITB therapy for the first time between 31st December 2009 and 31st December 2014.
Results
Twenty-five children had goals identified (mean age 11y 1mo), 19 had a diagnosis of cerebral palsy and 22 were at Gross Motor Function Classification System level IV, V, or equivalent. Strong evidence for an improvement in goal performance (2.33, 95% CI 1.70, 2.96, p<0.001) and performance satisfaction scores (3.08, 95% CI 2.28, 3.88, p<0.001) were demonstrated at 6 months, compared to baseline. The differences were clinically significant and were sustained to 12 months.
Interpretation
ITB therapy in paediatric patients with hypertonia results in clinically significant improvements in average performance and performance satisfaction scores.
What this paper adds
The most commonly identified goals of parents of children treated with intrathecal (ITB) therapy were: improving ease of dressing, positioning, and transfers.
ITB therapy is effective in improving performance and performance satisfaction in children with hypertonia.
Score improvements are mainly evident within the first 6 months of therapy