Nurse-Led Mobile Phone Intervention to Promote Self-Management in Type 2 Diabetes in Ghana: A Randomized Controlled Trial.

Purpose: The purpose of the study was to test the effectiveness of a nurse-led mobile phone intervention (NMPI) on glycemic variability and self-management among people living with type 2 diabetes (T2DM) in Ghana.

Methods: In this randomized controlled trial, the intervention group received a 3-month NMPI program plus standard care, and the control group received standard care alone in a tertiary health care setting. Ninety-eight participants (baseline A1C > 7%) were randomized 1:1 to either NMPI or standard care group.

Heart rate variability biofeedback to reduce anxiety in autism spectrum disorder - a mini review.

There is a reported high prevalence of anxiety in people with autism spectrum disorder. This mini review appraises existing research investigating heart rate variability biofeedback to help manage symptoms of anxiety in people with autism spectrum disorder. A thorough search of electronic databases was conducted to find relevant literature.

Stakeholder Perceptions of Complementary and Integrative Medicines from People Living with Rare Diseases in Northern Ireland: A Mixed Methods Study.

Introduction: Only 5% of rare diseases have an approved treatment available, therefore patients often utilise complementary and integrative medicines (CIMs) to help manage their condition. Limited high-quality evidence-based studies are available which support the effectiveness of CIM, as it is difficult to show that an outcome is a direct result of the CIM intervention and not due to bias. Patients and healthcare professionals must weigh up the evidence quality, safety, efficacy, practical logistics, and financial implications of utilising CIM for rare diseases.

Feasibility of home-based exercise training during adjuvant treatment for metastatic castrate-resistant prostate cancer patients treated with an androgen receptor pathway inhibitor (EXACT).

Background: Exercise is an effective adjuvant therapy that can alleviate treatment-related toxicities for men with prostate cancer (PC). However, the feasibility of delivering exercise training to men with advanced disease and the wider impact on clinical outcomes remain unknown. The purpose of the EXACT trial was to determine the feasibility and effects of home-based exercise training in men with metastatic castrate-resistant prostate cancer (mCRPC).

Caregiver Burden in Informal Caregivers of Patients in Saudi Arabia Receiving Hemodialysis: A Mixed-Methods Study.

(1) Background: Long-term caregiving for patients receiving hemodialysis (HD), is associated with physical and psychological stress, which may impact on the well-being and quality of life of caregivers. Due to a lack of understanding of the experiences of informal caregivers of patients receiving HD, especially in Saudi Arabia, this study aimed to measure burden in informal caregivers of patients receiving HD, examine the factors that predict caregiver burden (CB), and explore the experience of burden in caregivers of patients receiving HD. (2) Methods: This study used a mixed-methods, sequential, explanatory design, which consisted of two phases.

Children and young people's experiences of living with rare diseases: An integrative review.

Problem: Rare diseases are any disease affecting fewer than five people in 10,000. More than 8000 rare diseases and 50-75% of all rare diseases affect children. The purpose of this review was to critically appraise and synthesize existing literature relating to the impact of rare diseases on children's day-to-day lives.

Children as innovators: harnessing the creative expertise of children to address practical and psychosocial challenges of the coronavirus disease 2019 (COVID-19) pandemic - COVISION study protocol.

We are currently in a period of transition, from the pre-COVID-19 (coronavirus disease 2019) era and the initial reactive lockdowns, to now the ongoing living with and potentially the after COVID-19 period. Each country is at its own individual stage of this transition, but many have gone through a period of feeling adrift; disconnected from normal lives, habits and routines, finding oneself betwixt and between stages, similar to that of liminality. Children and young people have been particularly affected.

The effect of different COVID-19 public health restrictions on mobility: A systematic review.

Background: In response to the COVID-19 pandemic, most countries have introduced non-pharmaceutical interventions, such as stay-at-home orders, to reduce person-to-person contact and break trains of transmission. The aim of this systematic review was to assess the effect of different public health restrictions on mobility across different countries and cultures. The University of Bern COVID-19 Living Evidence database of COVID-19 and SARS-COV-2 publications was searched for retrospective or prospective studies evaluating the impact of COVID-19 public health restrictions on Google Mobility.

Exploring the impact of ineligibility on individuals expressing interest in a trial aimed at improving daily functioning regarding perceptions of self, research and likelihood of future participation.

Background: Eligibility guidelines in research trials are necessary to minimise confounds and reduce bias in the interpretation of potential treatment effects. There is limited extant research investigating how being deemed ineligible for such trials might impact patients' perceptions of themselves and of research. Better understanding of the impact of patient ineligibility could enhance design and implementation of future research studies.

Investigating the physical activity, health, wellbeing, social and environmental effects of a new urban greenway: a natural experiment (the PARC study).

Background: Evidence for the health benefits of urban green space tends to stem from small, short-term quasi-experimental or cross-sectional observational research, whilst evidence from intervention studies is sparse. The development of an urban greenway (9 km running along 3 rivers) in Northern Ireland provided the opportunity to conduct a natural experiment. This study investigated the public health impact of the urban greenway on a range of physical activity, health, wellbeing, social, and perceptions of the environment outcomes.

Factors Associated with Burden in Caregivers of Patients with End-Stage Kidney Disease (A Systematic Review).

Background: Caring for a patient with end-stage kidney disease (ESKD) is highly stressful and can impact negatively on the physical and psychological well-being of caregivers. To accurately assess caregiver burden (CB), health care providers (HCPs) need to identify characteristics associated with an increase in CB.

Aim: The aim of this review is to explore CB in caregivers of adult patients with ESKD and to identify characteristics associated with any increase in CB.

Development of a complex arts-based intervention for patients with end-stage kidney disease whilst receiving haemodialysis.

Background: Patients with end-stage kidney disease who receive haemodialysis experience a protracted treatment regimen that can result in an increased risk of depression and anxiety. Arts-based interventions could address this unique issue; however, no arts-based interventions have been developed for delivery within a haemodialysis unit and evaluation within a randomised controlled trials (RCTs).

Aim: To develop a complex arts-based intervention for patients with end-stage kidney disease whilst receiving haemodialysis.

Carer reported experiences: Supporting someone with a rare disease.

This exploratory study aimed to gain an understanding of carer reported experiences derived specifically from persons caring for someone with a rare disease. The survey took place online on the SmartSurvey platform from November 2019 to January 2020. The facilitated workshop took place in Bangor Carnegie Library, Northern Ireland.

A nonrandomised pilot study to examine the feasibility and acceptability of reflexology in patients undergoing hospital-based haemodialysis (solitude study).

Background: Patients with end-stage kidney disease, receiving haemodialysis can experience complications-hypotension, headache, muscle cramp, chest pain, nausea and vomiting. Patients who experience all or some of these symptoms will often report reduced health-related quality of life (HRQOL) and poor sleep quality, which may lead to increased morbidity and mortality.

Objective: The objective of this pilot study is to evaluate the feasibility of a larger randomised controlled trial to determine the effect of foot reflexology on a cohort of patients undergoing hospital-based haemodialysis.

A mixed-methods feasibility study of an arts-based intervention for patients receiving maintenance haemodialysis.

Background: Haemodialysis can negatively impact quality of life and mental health. Arts-based interventions used successfully in other settings to improve health and well-being, could help address the impact of haemodialysis. This study aimed to evaluate the feasibility and acceptability of conducting a randomised controlled trial (RCT) of an arts-based intervention for patients receiving haemodialysis.

Improvements needed to support people living and working with a rare disease in Northern Ireland: current rare disease support perceived as inadequate.

Background: Many people living and working with rare diseases describe consistent difficulties accessing appropriate information and support. In this study an evaluation of the awareness of rare diseases, alongside related information and educational resources available for patients, their families and healthcare professionals, was conducted in 2018-2019 using an online survey and semi-structured interviews with rare disease collaborative groups (charities, voluntary and community groups) active across Northern Ireland (NI).

Methods: This study had 2 stages.

A scoping review and proposed workflow for multi-omic rare disease research.

Background: Patients with rare diseases face unique challenges in obtaining a diagnosis, appropriate medical care and access to support services. Whole genome and exome sequencing have increased identification of causal variants compared to single gene testing alone, with diagnostic rates of approximately 50% for inherited diseases, however integrated multi-omic analysis may further increase diagnostic yield. Additionally, multi-omic analysis can aid the explanation of genotypic and phenotypic heterogeneity, which may not be evident from single omic analyses.

Rinse-free hand wash for reducing absenteeism among preschool and school children.

Background: Illness-related absenteeism is an important problem among preschool and school children for low-, middle- and high- income countries. Appropriate hand hygiene is one commonly investigated and implemented strategy to reduce the spread of illness and subsequently the number of days spent absent. Most hand hygiene strategies involve washing hands with soap and water, however this is associated with a number of factors that act as a barrier to its use, such as requiring running water, and the need to dry hands after cleaning.

Complex arts-based interventions for patients receiving haemodialysis: A realist review.

Many patients with end-stage kidney disease require haemodialysis, a treatment that requires attending hospital three times a week for four hours each visit. This treatment impacts profoundly on mental health. Arts-based interventions for patients receiving haemodialysis could address the impact of this treatment; however, there is no consensus on methods of implementation and mechanisms underlying these interventions in specific clinical contexts.

Systematic review of differential methylation in rare ophthalmic diseases.

Rare ophthalmic diseases have a devastating impact on a patient's vision and consequently negatively affect their independence, ability to work and overall quality of life. Methylation is an important emerging biomarker of disease and may improve understanding of rare ophthalmic disorders. This systematic review sought to identify and evaluate literature on methylation and rare ophthalmic disease.

A Randomized Noninferiority Trial of Wearing Adjustable Glasses versus Standard and Ready-made Spectacles among Chinese Schoolchildren: Wearability and Evaluation of Adjustable Refraction III.

Purpose: To compare wear of standard, adjustable, and ready-made glasses among children.

Design: Randomized, controlled, open-label, noninferiority trial.

Participants: Students aged 11 to 16 years with presenting visual acuity (VA) ≤6/12 in both eyes, correctable to ≥6/7.

Communication Needs for Individuals With Rare Diseases Within and Around the Healthcare System of Northern Ireland.

By definition a rare disease affects fewer than 1 in 2,000 people but collectively 1 in 17 people are affected at some time in their lives. Rare disease patients often describe feeling isolated and unsupported. The needs of individuals living with rare disease(s) are not well met globally and have not been specifically explored in Northern Ireland.

The importance of social environment in preventing smoking: an analysis of the Dead Cool intervention.

Background: An adolescent's perceptions of their family's and friends' smoking attitudes and behaviour can influence their own uptake of smoking. There are two broad sources of such social influence: observing the behaviour directly, and assimilating attitudes.

Methods: We analysed data collected for the evaluation of Dead Cool, a school based smoking prevention intervention in Northern Ireland (n=480 in 20 clusters).

Exercise for advanced prostate cancer: a multicomponent, feasibility, trial protocol for men with metastatic castrate-resistant prostate cancer (EXACT).

Background: Men with metastatic castrate-resistant prostate cancer can experience an array of treatment-related side effects. Accumulating evidence suggests exercise may alleviate some of these adversities and assist in disease management. However, empirical evidence in advanced prostate cancer patients remains limited.