Muscle strengthening intervention for boys with haemophilia: Developing and evaluating a best-practice exercise programme with boys, families and health-care professionals

Background: Muscle strengthening exercises have the potential to improve outcomes for boys with haemophilia, but it is unclear what types of exercise might be of benefit. We elicited the views of health-care professionals, boys and their families to create and assess a home-based muscle strengthening programme. Objective: To design and develop a muscle strengthening programme with health-care professionals aimed at improving musculoskeletal health, and refine the intervention by engaging boys with haemophilia and their families (Study 1). Following delivery, qualitatively evaluate the feasibility and acceptability of the exercise programme with the boys and the study's physiotherapists (Study 2). Design: A person-based approach was used for planning and designing the exercise programme, and evaluating it post-delivery. The following methods were utilized: modified nominal group technique (NGT) with health-care professionals; focus group with families; exit interviews with boys; and interviews with the study's physiotherapists. Results: Themes identified to design and develop the intervention included exercises to lower limb and foot, dosage, age accommodating, location, supervision and monitoring and incentivization. Programme refinements were carried out following engagement with the boys and families who commented on: dosage, location, supervision and incentivization. Following delivery, the boys and physiotherapists commented on progression and adaptation, physiotherapist contact, goal-setting, creating routines and identifying suitable timeframes, and a repeated theme of incentivization. Conclusions: An exercise intervention was designed and refined through engagement with boys and their families. Boys and physiotherapists involved in the intervention's delivery were consulted who found the exercises to be generally acceptable with some minor refinements necessary

Valuing informal carers' quality of life using best-worst scaling-Finnish preference weights for the Adult Social Care Outcomes Toolkit for carers (ASCOT-Carer)

This study developed Finnish preference weights for the seven-attribute Adult Social Care Outcomes Toolkit for carers (ASCOT-Carer) and investigated survey fatigue and learning in best-worst scaling (BWS) experiments. An online survey that included a BWS experiment using the ASCOT-Carer was completed by a sample from the general population in Finland. A block of eight BWS profiles describing different states from the ASCOT-Carer were randomly assigned to each respondent, who consecutively made four choices (best, worst, second best and second worst) per profile. The analysis panel data had 32,160 choices made by 1005 respondents. A scale multinomial logit (S-MNL) model was used to estimate preference weights for 28 ASCOT-Carer attribute levels. Fatigue and learning effects were examined as scale heterogeneity. Several specifications of the generalised MNL model were employed to ensure the stability of the preference estimates. The most and least-valued states were the top and bottom levels of the control over daily life attribute. The preference weights were not on a cardinal scale. We observed the position effect of the attributes on preferences associated with the best or second-best choices. A learning effect was found. The established preference weights can be used in evaluations of the effects of long-term care services and interventions on the quality of life of service users and caregivers. The learning effect implies a need to develop study designs that ensure equal consideration to all profiles (choice tasks) in a sequential choice experiment

Dopamine Augmented Rehabilitation in Stroke (DARS): a multicentre double-blind, randomised controlled trial of co-careldopa compared with placebo, in addition to routine NHS occupational and physical therapy, delivered early after stroke on functional recovery

BACKGROUND: Dopamine is a key modulator of striatal function and learning, and may improve motor recovery after stroke. Seven small trials of dopamine agonists after stroke have provided equivocal evidence of the clinical effectiveness of dopamine agonists in improving motor recovery. DESIGN: Dopamine Augmented Rehabilitation in Stroke was a multicentre, randomised, double-blind, placebo-controlled trial with stroke patients randomised to receive 6 weeks of co-careldopa (Sinemet®, Merck Sharp & Dohme Ltd) or placebo in combination with occupational and physical rehabilitation. METHODS: The primary outcome measure was the proportion of patients walking independently at 8 weeks [Rivermead Mobility Index (RMI) score of ≥ 7 points and ‘yes’ to item 7 on the RMI]. Secondary outcome measures assessed physical functioning, pain, cognition, mood, fatigue and carer burden at 8 weeks, 6 months and 12 months. RESULTS: Between May 2011 and March 2014, 593 patients (mean age 68.5 years) and 165 carers (mean age 59.7 years) were recruited from stroke rehabilitation units; 308 patients were randomised to co-careldopa and 285 to placebo at a median of 15 days following stroke onset. The study drug was to be taken 45–60 minutes before therapy, which included motor activities (mean 23.2 and 24.8 sessions in the co-careldopa and placebo groups, respectively). The mean number of investigational medicinal product doses taken was 20.6 in the co-careldopa group and 22.4 in the placebo group. Ability to walk independently was not improved at 8 weeks [40.6% (co-careldopa) vs. 44.6% (placebo); odds ratio 0.78, 95% confidence interval (CI) 0.53 to 1.15], 6 months [51.6% (co-careldopa) vs. 53.3% (placebo)] or 12 months [51.6% (co-careldopa) vs. 56.8% (placebo)]. There were no significant differences for Barthel Index, Nottingham Extended Activities of Daily Living, ABILHAND Manual Ability Measure or Modified Rankin Scale, pain or fatigue at any time point. Montreal Cognitive Assessment scores did not significantly differ; the majority of participants had cognitive impairment at baseline, which improved during 12 months’ follow-up. No difference was observed in General Health Questionnaire 12-item version scores between groups at 8 weeks and 12 months but, at 6 months, those in the co-careldopa group reported significantly better general health [mean difference (MD) –1.33, 95% CI –2.57 to –0.10]. Mortality at 12 months was not significantly different. Carers in the placebo group reported significantly greater burden at 6 months (MD 5.05, 95% CI 0.10 to 10.01) and 12 months (MD 7.52, 95% CI 1.87 to 13.18). CONCLUSION: Co-careldopa in addition to routine NHS occupational and physical therapy is not clinically effective or cost-effective in improving walking, physical functioning, mood or cognition following stroke. We recommend further research to develop imaging and clinical markers that would allow identification of promising drug therapies that would enhance motor therapy in improving walking ability and arm function. Further research is needed to compare strategies of giving drug therapy intermittently immediately prior to therapy sessions or as continuous background daily administration. LIMITATIONS: In total, 10.3% of patients were lost to follow-up at 8 weeks and < 10% of patients met the strict per-protocol definition. Despite this, the findings are robust and generalisable to patients with limited mobility in the first few weeks after stroke. TRIAL REGISTRATION: Current Controlled Trials ISRCTN99643613. FUNDING: This project was funded by the Efficacy and Mechanism Evaluation programme, a Medical Research Council and National Institute for Health Research partnership

Evaluation study of diabetes and wellbeing (DWELL) - Report 4: Workforce training and cost effectiveness

The DWELL project was funded by the INTERREG 2 Seas Mers Zeeën Programme and ran between 2016 and March 2023. The overall aim of the project was to empower people living with Type 2 Diabetes Mellitus (T2DM) to enhance self-management of illness through a co-produced 12-week educational programme, and to improve targeted aspects of individual health and wellbeing. The project involved partners in the UK, France, Netherlands and Belgium. Canterbury Christ Church University (‘CCCU’) led Work Package 4: Evaluation of the DWELL programme, which commenced delivery in 2018. The evaluation comprised four key areas: patient outcomes; system/process benefits of the programme; staff training; cost benefits of the programme. For Output 4.1 of this Work Package, we present a set of four final project reports which relate to DWELL programme evaluation. These are as follows: • REPORT 1: DWELL Evaluation Methodology • REPORT 2: DWELL Participant Outcomes • REPORT 3: DWELL Process Evaluation • REPORT 4: DWELL Workforce training and Cost Effectiveness Report 4 presents feedback on Workforce Training and results of the Cost Effectiveness analysis undertaken for the DWELL programme

Evaluation study of diabetes and wellbeing (DWELL) - Report 2: Participant outcomes

he DWELL project was funded by the INTERREG 2 Seas Mers Zeeën Programme and ran between 2016 and March 2023. The overall aim of the project was to empower people living with Type 2 Diabetes Mellitus (T2DM) to enhance self-management of illness through a co-produced 12-week educational programme, and to improve targeted aspects of individual health and wellbeing. The project involved partners in the UK, France, Netherlands and Belgium. Canterbury Christ Church University (‘CCCU’) led Work Package 4: Evaluation of the DWELL programme, which commenced delivery in 2018. The evaluation comprised four key areas: patient outcomes; system/process benefits of the programme; staff training; cost benefits of the programme. For Output 4.1 of this Work Package, we present a set of four final project reports which relate to DWELL programme evaluation. These are as follows: • REPORT 1: Evaluation Methodology • REPORT 2: Participant Outcomes • REPORT 3: Process Evaluation • REPORT 4: Workforce training and Cost Effectiveness Report 2 presents the Participant Outcomes of the DWELL programme. Section one reports on participant demographics,referral to the DWELL programme, diabetes history, medication and comorbidities, and household, work and income. Section two presents the number of participants who were evaluated at each of the four time-points and causes for participant attrition. Section three outlines evidence of efficacy of the DWELL programme. Changes in participant outcomes are compared pre- post-DWELL, and longitudinal data are compared post-DWELL at 6 and 12 months