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

Acceptability of a progressive resistance training programme for ambulatory adolescents with spastic cerebral palsy in England: a qualitative study.

Purpose: The aim of this study was to explore the acceptability of a 10-week progressive resistance training programme from the perspective of ambulatory adolescents with CP and physiotherapists. Material and methods: Semi-structured interviews were conducted with 32 adolescents with spastic CP, aged 10-19 years in Gross Motor Function Classification System (GMFCS) levels I-III, and 13 physiotherapists. Adolescents had completed a 10-week progressive resistance training programme and physiotherapists had delivered the programme. The Framework Method was used to analyse data. Results: The analysis identified four themes. "It's do-able" described the acceptability of the programme structure, including the frequency of sessions and the duration of the programme. "They were difficult but I did it" described the acceptability of the exercises. "It is completely different," explored the experience of using equipment to progress the programme and "I wish I could do it on a permanent basis" discussed continuing to participate in resistance training. Conclusions: Findings suggest that resistance training is largely acceptable to adolescents and physiotherapists. Acceptability was enhanced by having a weekly supervised session and being able to adapt and progress the exercises to meet the individual's ability. However, there are challenges to implementing progressive resistance training as part of routine practice. Clinical trial registration number: ISRCTN90378161.</p

Associations between gait kinematics, gross motor function and physical activity among young people with cerebral palsy: a cross sectional study

INTRODUCTION:The aim of this study was to investigate the association between gait parameters, gross motor function and physical activity (PA) in young people with cerebral palsy (CP).  METHODS: Thirty-eight adolescents aged between 10–19 years with spastic CP in GMFCS levels I-III (mean [standard deviation] age 13.7 [2.4] yr; 53% female) were included in this cross-sectional study. Hip, knee and ankle joint excursion and stance time was assessed using 3D gait analysis. Self-selected walking speed was assessed during a timed 10 m overground walk and treadmill walking. Gross motor function was assessed using dimensions D and E of the Gross Motor Function Measure (GMFM-66). Moderate-to-vigorous PA, light PA and step-count were assessed using an accelerometer. Linear regression was used to examine associations.  RESULTS:After adjusting for age, sex and GMFCS level, percentage stance time was associated with dimension E of the GMFM-66 (β= –0.29, 95%CI –0.54 to –0.05). There was no evidence that any other gait parameters were associated with GMFM-66 dimensions D or E. There was also no evidence that gait parameters or GMFM-66 dimensions D or E were associated with step-count or time in PA after adjusting for age, sex and GMFCS level.  DISCUSSION: The findings provide an insight into the complexity of the relationship between gait quality or ability at the impairment level, function as measured in a controlled environment, and the performance of habitual PA, which is essential for health among children with CP.</p

Transition from child-centred to adult-oriented healthcare systems for young people with neurodisability: a scoping review protocol [version 1; peer review: 3 approved]

Background: The transition from child-centred to adult-oriented healthcare is a challenging time for young people with neurodisability. As the prevalence of neurodisability increases, greater numbers of young people will eventually transfer to the adult healthcare system. While there is a growing recognition of the importance of providing quality, transitional care, little is known about how to manage and optimise this process for young people with neurodisability. The objective of this scoping review is to examine and map existing literature related to the transition from child-centred to adult-oriented healthcare systems for young people with neurodisability.  Methods: Systematic literature searches of OVID MEDLINE, EMBASE, PsycINFO, CINAHL, Cochrane Library and Web of Science will be conducted from inception to present. A structured iterative search of grey literature will be conducted. This review will consider all study designs examining the transition from child to adult health services in neurodisability. Two reviewers will independently screen each retrieved title and abstract and assess full-text articles against the inclusion criteria to determine eligibility. Data will be extracted and synthesised quantitatively and qualitatively. The process and reporting will follow PRISMA-ScR guidelines.  Conclusion: This review will provide a broad and systematically mapped synthesis of the extent and nature of the available published and unpublished literature on transition from child-centred to adult-oriented healthcare systems in neurodisability. The results will be used to determine gaps in the current evidence base in order to prioritise areas for future research. </p

Transition from child to adult health services for young people with cerebral palsy in Ireland: a mixed-methods study protocol

Introduction: The transition from child to adult health services is a challenging and complex process for young people with cerebral palsy (CP). Poorly managed transition is associated with deterioration in health, increased hospitalisations and reduced quality of life. While international research identifies key practices that can improve the experience and outcomes of transition, there is a paucity of data in the Irish context. This research study aims to gain an insight into the experience of transition for young people with CP in Ireland. Methods and analysis: A convergent parallel mixed-methods design will be used to collect, analyse and interpret quantitative and qualitative data. Participants will be young people aged 16-22 years with CP, their parent(s)/carer(s) and service providers. Quantitative and qualitative data will be collected through questionnaires and interviews, respectively. Quantitative data will be reported using descriptive statistics. Where sufficient data are collected, we will examine associations between the experience of transition practices and sociodemographic and CP-related factors, respectively, using appropriate regression models. Associations between service provider characteristics and provision of key transition practices may also be explored using appropriate regression models. Qualitative data will be analysed using the Framework Method. A coding matrix based on key transitional practices identified from the literature will be used to identify convergence and divergence across study components at the integration stage. Ethics and dissemination: The study has been approved by the RCSI University of Medicine and Health Sciences Research Ethics Committee (REC201911010). Results will be presented to non-academic stakeholders through a variety of knowledge translation activities. Results will be published in open access, peer-reviewed journals and presented at national and international scientific conferences.</p

Co-designing resources to support the transition from child to adult health services for young people with cerebral palsy: a design thinking approach

Introduction: Design thinking is a human-centred process that aims to identify the needs of end-users and iteratively develop solutions. Involving end-users in the development and design of solutions may enhance effectiveness by increasing focus on the needs of the target population. This paper describes the process of co-designing resources to support the transition from child-centred to adult-orientated health services using a design thinking approach. Methods: Five co-design workshops were conducted remotely with a young person advisory group and parent advisory group. A design thinking process guided by the Stanford D.School approach was used to understand the transition needs of young people and their parents and iteratively develop solutions to improve end-user experience. Results: Eight resource prototypes were generated: (1) designated transition coordinator, (2) digital stories of transition experience (3) written informational support (4) transition website, (5) transition checklists and worksheets (6) transition app, (7) transition programme or course and (8) educational programme for health professionals. Conclusion: Design thinking is a feasible approach to identify, characterise and prioritise resources collaboratively with end-user partners.</p

Multilingual markers of depression in remotely collected speech samples: a preliminary analysis

BackgroundSpeech contains neuromuscular, physiological and cognitive components, and so is a potential biomarker of mental disorders. Previous studies indicate that speaking rate and pausing are associated with major depressive disorder (MDD). However, results are inconclusive as many studies are small and underpowered and do not include clinical samples. These studies have also been unilingual and use speech collected in controlled settings. If speech markers are to help understand the onset and progress of MDD, we need to uncover markers that are robust to language and establish the strength of associations in real-world data.MethodsWe collected speech data in 585 participants with a history of MDD in the United Kingdom, Spain, and Netherlands as part of the RADAR-MDD study. Participants recorded their speech via smartphones every two weeks for 18 months. Linear mixed models were used to estimate the strength of specific markers of depression from a set of 28 speech features.ResultsIncreased depressive symptoms were associated with speech rate, articulation rate and intensity of speech elicited from a scripted task. These features had consistently stronger effect sizes than pauses.LimitationsOur findings are derived at the cohort level so may have limited impact on identifying intra-individual speech changes associated with changes in symptom severity. The analysis of features averaged over the entire recording may have underestimated the importance of some features.ConclusionsParticipants with more severe depressive symptoms spoke more slowly and quietly. Our findings are from a real-world, multilingual, clinical dataset so represent a step-change in the usefulness of speech as a digital phenotype of MDD.</p

'I can do this': a qualitative exploration of acceptability and experiences of a physical activity behaviour change intervention in people with multiple sclerosis in the UK

Objectives: The purpose of this study was to explore the experiences of people with multiple sclerosis (MS) who participated in iStep-MS, a feasibility randomised controlled trial of a behaviour change intervention that aimed to increase physical activity and reduce sedentary behaviour. Design: A qualitative approach was undertaken embedded in the feasibility randomised controlled trial. One-to-one semi-structured interviews were conducted and analysed using Framework analysis. Setting: Participants were recruited from a single MS therapy centre in the southeast of England, UK. Participants: Sixty people with MS were randomly allocated in a 1:1 ratio to the intervention or usual care. Following a purposive sampling strategy, 15 participants from the intervention arm undertook 1:1 semi-structured interviews. Interventions: The iStep-MS intervention consisted of four therapist-led sessions over 12 weeks, supported by a handbook and pedometer. Results: Three themes were identified from the data. "I can do this": developing competence in physical activity highlights the enhanced physical activity confidence gained through goal setting and accomplishment. "I felt valued": the nurturing culture provides an overview of the supportive and non-judgemental environment created by the programme structure and therapeutic relationship. Finally, "What can I do?": empowered enactment describes the transition from the supported iStep-MS intervention to intrinsically motivated physical activity enactment. Conclusions: Overall, this study supports the acceptability of the iStep-MS intervention and identified key areas that supported participants to be physically active. Trial registration number: ISRCTN15343862.</p

Remote smartphone-based speech collection: acceptance and barriers in individuals with major depressive disorder

The ease of in-the-wild speech recording using smartphones has sparked considerable interest in the combined application of speech, remote measurement technology (RMT) and advanced analytics as a research and healthcare tool. For this to be realised, the acceptability of remote speech collection to the user must be established, in addition to feasibility from an analytical perspective. To understand the acceptance, facilitators, and barriers of smartphone-based speech recording, we invited 384 individuals with major depressive disorder (MDD) from the Remote Assessment of Disease and Relapse - Central Nervous System (RADAR-CNS) research programme in Spain and the UK to complete a survey on their experiences recording their speech. In this analysis, we demonstrate that study participants were more comfortable completing a scripted speech task than a free speech task. For both speech tasks, we found depression severity and country to be significant predictors of comfort. Not seeing smartphone notifications of the scheduled speech tasks, low mood and forgetfulness were the most commonly reported obstacles to providing speech recordings

The association between home stay and symptom severity in major depressive disorder: preliminary findings from a multicenter observational study using geolocation data from smartphones

Background: Most smartphones and wearables are currently equipped with location sensing (using GPS and mobile network information), which enables continuous location tracking of their users. Several studies have reported that various mobility metrics, as well as home stay, that is, the amount of time an individual spends at home in a day, are associated with symptom severity in people with major depressive disorder (MDD). Owing to the use of small and homogeneous cohorts of participants, it is uncertain whether the findings reported in those studies generalize to a broader population of individuals with MDD symptoms.Objective: The objective of this study is to examine the relationship between the overall severity of depressive symptoms, as assessed by the 8-item Patient Health Questionnaire, and median daily home stay over the 2 weeks preceding the completion of a questionnaire in individuals with MDD. Methods: We used questionnaire and geolocation data of 164 participants with MDD collected in the observational Remote Assessment of Disease and Relapse–Major Depressive Disorder study. The participants were recruited from three study sites: King’s College London in the United Kingdom (109/164, 66.5%); Vrije Universiteit Medisch Centrum in Amsterdam, the Netherlands (17/164, 10.4%); and Centro de Investigación Biomédica en Red in Barcelona, Spain (38/164, 23.2%). We used a linear regression model and a resampling technique (n=100 draws) to investigate the relationship between home stay and the overall severity of MDD symptoms. Participant age at enrollment, gender, occupational status, and geolocation data quality metrics were included in the model as additional explanatory variables. The 95% 2-sided CIs were used to evaluate the significance of model variables. Results: Participant age and severity of MDD symptoms were found to be significantly related to home stay, with older (95% CI 0.161-0.325) and more severely affected individuals (95% CI 0.015-0.184) spending more time at home. The association between home stay and symptoms severity appeared to be stronger on weekdays (95% CI 0.023-0.178, median 0.098; home stay: 25th-75th percentiles 17.8-22.8, median 20.9 hours a day) than on weekends (95% CI −0.079 to 0.149, median 0.052; home stay: 25th-75th percentiles 19.7-23.5, median 22.3 hours a day). Furthermore, we found a significant modulation of home stay by occupational status, with employment reducing home stay (employed participants: 25th-75th percentiles 16.1-22.1, median 19.7 hours a day; unemployed participants: 25th-75th percentiles 20.4-23.5, median 22.6 hours a day). Conclusions: Our findings suggest that home stay is associated with symptom severity in MDD and demonstrate the importance of accounting for confounding factors in future studies. In addition, they illustrate that passive sensing of individuals with depression is feasible and could provide clinically relevant information to monitor the course of illness in patients with MDD.</p