The development of a theory informed behaviour change intervention to improve adherence to dietary and physical activity treatment guidelines in individuals with familial hypercholesterolaemia (FH)

This study is funded by the National Institute for Health Research NIHR Bristol Biomedical Research Centre (Nutrition theme) at University Hospitals Bristol NHS Foundation Trust and The University of Bristol.Peer reviewedPublisher PD

Needs of patients with parkinsonism and their caregivers:a protocol for the PRIME-UK cross-sectional study

INTRODUCTION: People with parkinsonism are a highly heterogeneous group and the disease encompasses a spectrum of motor and non-motor symptoms which variably emerge and manifest across the disease course, fluctuate over time and negatively impact quality of life. While parkinsonism is not directly the result of ageing, it is a condition that mostly affects older people, who may also be living with frailty and multimorbidity. This study aims to describe the broad range of health needs for people with parkinsonism and their carers in relation to their symptomatology, disability, disease stage, comorbidities and sociodemographic characteristics. METHODS AND ANALYSIS: In this single site cross-sectional study, people with parkinsonism will be sent a study information pack for themselves and their primary informal caregiver, if relevant. Data are collected via questionnaire, with additional support, if required, to maximise participation. A specific strategy has been developed to target and proactively recruit patients lacking capacity to consent, including those in residential care settings, with input from a personal consultee prior to completion of a bespoke questionnaire by a representative. Caregivers are also recruited to look at various health outcomes. Results will be displayed as descriptive statistics and regression models will be used to test simple associations and interactions. ETHICS AND DISSEMINATION: This protocol was approved by the London—Brighton & Sussex Research Ethics Committee (REC reference 20/LO/0890). The results of this protocol will be disseminated through publication in an international peer-reviewed journal; presentation at academic meetings and conferences; and a lay summary uploaded to the PRIME-Parkinson website. TRIAL REGISTRATION NUMBER: ISRCTN11452969; Pre-results

Enablers and barriers to treatment adherence in heterozygous familial hypercholesterolaemia : a qualitative evidence synthesis

This evidence synthesis is funded by the National Institute for Health Research NIHR Bristol Biomedical Research Centre (Nutrition theme) at University Hospitals Bristol NHS Foundation Trust and The University of Bristol.Peer reviewedPublisher PD

Wearable and portable GPS solutions for monitoring mobility in dementia: A systematic review

Dementia is the most common neurodegenerative disorder globally. Disease progression is marked by declining cognitive function accompanied by changes in mobility. Increased sedentary behaviour and, conversely, wandering and becoming lost are common. Global positioning system (GPS) solutions are increasingly used by caregivers to locate missing people with dementia (PwD) but also offer a non-invasive means of monitoring mobility patterns in PwD. We performed a systematic search across five databases to identify papers published since 2000, where wearable or portable GPS was used to monitor mobility in patients with common dementias or mild cognitive impairment (MCI). Disease and GPS-specific vocabulary were searched singly, and then in combination, identifying 3004 papers. Following deduplication, we screened 1972 papers and retained 17 studies after a full-text review. Only 1/17 studies used a wrist-worn GPS solution, while all others were variously located on the patient. We characterised the studies using a conceptual framework, finding marked heterogeneity in the number and complexity of reported GPS-derived mobility outcomes. Duration was the most frequently reported category of mobility reported (15/17), followed by out of home (14/17), and stop and trajectory (both 10/17). Future research would benefit from greater standardisation and harmonisation of reporting which would enable GPS-derived measures of mobility to be incorporated more robustly into clinical trials

Comparing the effects of sun exposure and vitamin D supplementation on vitamin D insufficiency, and immune and cardio-metabolic function: the Sun Exposure and Vitamin D Supplementation (SEDS) Study

BACKGROUND Adults living in the sunny Australian climate are at high risk of skin cancer, but vitamin D deficiency (defined here as a serum 25-hydroxyvitamin D (25(OH)D) concentration of less than 50 nmol/L) is also common. Vitamin D deficiency may be a risk factor for a range of diseases. However, the optimal strategies to achieve and maintain vitamin D adequacy (sun exposure, vitamin D supplementation or both), and whether sun exposure itself has benefits over and above initiating synthesis of vitamin D, remain unclear. The Sun Exposure and Vitamin D Supplementation (SEDS) Study aims to compare the effectiveness of sun exposure and vitamin D supplementation for the management of vitamin D insufficiency, and to test whether these management strategies differentially affect markers of immune and cardio-metabolic function. METHODS/DESIGN The SEDS Study is a multi-centre, randomised controlled trial of two different daily doses of vitamin D supplementation, and placebo, in conjunction with guidance on two different patterns of sun exposure. Participants recruited from across Australia are aged 18-64 years and have a recent vitamin D test result showing a serum 25(OH)D level of 40-60 nmol/L. DISCUSSION This paper discusses the rationale behind the study design, and considers the challenges but necessity of data collection within a non-institutionalised adult population, in order to address the study aims. We also discuss the challenges of participant recruitment and retention, ongoing engagement of referring medical practitioners and address issues of compliance and participant retention. TRIAL REGISTRATION Australia New Zealand Clinical Trials Registry: ACTRN12613000290796 Registered 14 March 2013

Wearable GPS and Accelerometer Technologies for Monitoring Mobility and Physical Activity in Neurodegenerative Disorders:A Systematic Review

Neurodegenerative disorders (NDDs) constitute an increasing global burden and can significantly impair an individual’s mobility, physical activity (PA), and independence. Remote monitoring has been difficult without relying on diaries/questionnaires which are more challenging for people with dementia to complete. Wearable global positioning system (GPS) sensors and accelerometers present a cost-effective and noninvasive way to passively monitor mobility and PA. In addition, changes in sensor-derived outcomes (such as walking behaviour, sedentary, and active activity) may serve as potential biomarkers of disease onset, progression, and response to treatment. We performed a systematic search across four databases to identify papers published within the past 5 years, in which wearable GPS or accelerometers were used to monitor mobility or PA in patients with common NDDs (Parkinson’s disease, Alzheimer’s disease, motor neuron diseases/amyotrophic lateral sclerosis, vascular parkinsonism, and vascular dementia). Disease and technology-specific vocabulary were searched singly, and then in combination, identifying 4985 papers. Following deduplication, we screened 3115 papers and retained 28 studies following a full text review. One study used wearable GPS and accelerometers, while 27 studies used solely accelerometers in NDDs. GPS-derived measures had been validated against current gold standard measures in one Parkinson’s cohort, suggesting that the technology may be applicable to other NDDs. In contrast, accelerometers are widely utilised in NDDs and have been operationalised in well-designed clinical trials