Comparison of the CHU-9D and the EQ-5D-Y instruments in children and young people with cerebral palsy: a cross-sectional study

Objective: To compare the performance of the EuroQol 5D youth (EQ-5D-Y) and child health utility 9D (CHU-9D) for assessing health-related quality of life (HRQoL) in children and young people (CYP) with cerebral palsy (CP). Design: Cross-sectional study. Setting: England. Participants: Sixty-four CYP with CP aged 10-19 years in Gross Motor Function Classification System (GMFCS) levels I-III. Main outcome measures: Missing data were examined to assess feasibility. Associations between utility values and individual dimensions on each instrument were examined to assess convergent validity. Associations between utility values and GMFCS level were examined to assess known-group differences. Results: Missing data were Conclusion: The EQ-5D-Y and CHU-9D are feasible measures of HRQoL in CYP with CP. However, the two instruments demonstrate poor agreement and should not be used to measure and value HRQoL in CYP with CP interchangeably. We propose that the CHU-9D may be preferable to use in this population as it assesses concepts that influence HRQoL among CYP with CP and provides less extreme utility values than the EQ-5D-Y.</p

NOSH data set.xlsx

DCE data set for analysis of women's preferences for a financial incentive scheme for breastfeeding. Ethical approval was obtained from Brunel University Research Ethics Committee.<br

Descriptive statistics (SYC): Respondents vs. non-respondents.

<p>Descriptive statistics (SYC): Respondents vs. non-respondents.</p

Results.

<p>Results.</p

Attributes, levels and level balance (24 choice sets with 2 hypothetical scheme options).

<p>Attributes, levels and level balance (24 choice sets with 2 hypothetical scheme options).</p

Sample characteristics (DCE).

<p>Sample characteristics (DCE).</p

Example of a choice set used in the DCE (coding options for effects coding in brackets).

<p>Example of a choice set used in the DCE (coding options for effects coding in brackets).</p

Ranking exercises–respondents [%] ranking types of benefits.

<p>Ranking exercises–respondents [%] ranking types of benefits.</p

Effect of RaceRunning on cardiometabolic disease risk factors and functional mobility in young people with moderate-to-severe cerebral palsy: protocol for a feasibility study

Introduction: There is consistent evidence that people with cerebral palsy (CP) do not engage in the recommended physical activity guidelines for the general population from a young age. Participation in moderate-to-vigorous physical activity is particularly reduced in people with CP who have a moderate-to-severe disability. RaceRunning is a growing disability sport that provides an opportunity for people with moderate-to-severe disability to participate in physical activity in the community. It allows those who are unable to walk independently to propel themselves using a RaceRunning bike, which has a breastplate for support but no pedals. The aim of this study is to examine the feasibility and acceptability of RaceRunning for young people with moderate-to-severe CP and the feasibility of conducting a definitive study of the effect of RaceRunning on cardiometabolic disease risk factors and functional mobility. Methods and analysis: Twenty-five young people (age 5-21 years) with CP or acquired brain injury affecting coordination will be included in this single-arm intervention study. Participants will take part in one RaceRunning session each week for 24 weeks. Outcomes assessed at baseline, 12 and 24 weeks include body mass index, waist circumference, blood pressure, muscle strength, cardiorespiratory fitness, physical activity and sedentary behaviour, functional mobility, activity competence and psychosocial impact. Adverse events will be systematically recorded throughout the 24 weeks. Focus groups will be conducted with participants and/or parents to explore their views and experiences of taking part in RaceRunning. Ethics and dissemination: Approval has been granted by Queen Margaret University Research Ethics Committee (REC) and the South East of Scotland REC. Results will be disseminated through peer-reviewed journals and distributed to people with CP and their families through RaceRunning and Athletic Clubs, National Health Service trusts and organisations for people with disabilities. Trial registration number: NCT04034342; pre-results.</p

Safety, feasibility, acceptability and preliminary effects of the Neurofenix platform for Rehabilitation via HOMe Based gaming exercise for the Upper-limb post Stroke (RHOMBUS): results of a feasibility intervention study

Objectives: To investigate the safety, feasibility and acceptability of the Neurofenix platform for home-based rehabilitation of the upper limb (UL). Design: A non-randomised intervention design with a parallel process evaluation. Setting: Participants' homes, South-East England. Participants: Thirty adults (≥18 years), minimum 12-week poststroke, not receiving UL rehabilitation, scoring 9-25 on the Motricity Index (elbow and shoulder), with sufficient cognitive and communicative abilities to participate. Interventions: Participants were trained to use the platform, followed by 1 week of graded game-play exposure and 6-week training, aiming for a minimum 45 min, 5 days/week. Outcomes: Safety was determined by assessing pain and poststroke fatigue at 8 and 12 weeks, and adverse events (AEs). Impairment, activity and participation outcomes were measured. Intervention feasibility was determined by the amount of specialist training and support required to complete the intervention, time and days spent training, and number of UL movements performed. Acceptability was assessed by a satisfaction questionnaire and semistructured interviews. Results: Participants (14 women; mean (SD) age 60.0 (11.3) years) were a median of 4.9 years poststroke (minimum-maximum: 1-28 years). Twenty-seven participants completed the intervention. The odds of having shoulder pain were lower at 8 weeks (OR 0.45, 95% CI 0.24 to 0.83, p=0.010) and 12 weeks (OR 0.46, 95% CI 0.25 to 0.86, p=0.014) compared with baseline. Fugl-Meyer upper extremity, Motor Activity Log and passive range of movement improved. No other gains were recorded. Poststroke fatigue did not change. Thirty mild and short-term AEs and one serious (unrelated) AE were reported by 19 participants. Participants trained with the platform for a median of 17.4 hours over 7 weeks (minimum-maximum: 0.3-46.9 hours), equating to a median of 149 min per week. The median satisfaction score was 36 out of 40. Conclusion: The Neurofenix platform is a safe, feasible and well accepted way to support UL training for people at least three months poststroke.</p