Background: People with a rare disease commonly experience long delays from the onset of symptoms to diagnosis. Rare diseases are challenging to diagnose because they are clinically heterogeneous, and many present with non-specific symptoms common to many diseases. We aimed to explore the experiences of people with myositis, primary immunodeficiency (PID), and sarcoidosis from symptom onset to diagnosis to identify factors that might impact receipt of a timely diagnosis.
View Article and Find Full Text PDFBackground: Sarcoidosis is a chronic inflammatory granulomatous disease of unknown cause. Delays in diagnosis can result in disease progression and poorer outcomes for patients. Our aim was to review the current literature to determine the overall diagnostic delay of sarcoidosis, factors associated with diagnostic delay, and the experiences of people with sarcoidosis of diagnostic delay.
View Article and Find Full Text PDFInt J Popul Data Sci
March 2024
Introduction: Randomised controlled trials (RCTs) conducted in care home settings address a range of health conditions impacting older people, but often include a common core of data about residents and the care home environment. These data can be used to inform service provision, but accessing these data can be challenging.
Methods: The Virtual International Care Home Trials Archive (VICHTA) collates care home RCTs conducted since 2010, with >100 participants, across multiple conditions, with documented eligibility criteria, initially identified from a scoping review.
Objective: This qualitative study explored the current barriers and enablers of diabetes care in the Indian Ocean Territories (IOT).
Methods: A constructivist grounded theory approach that incorporated semi-structured telephone interviews was employed. Initial analysis of the interview transcripts used a line-by-line approach, to identify recurring themes, connections, and patterns, before they were re-labelled and categorised.
Introduction: Sarcoidosis is a rare systemic inflammatory granulomatous disease of unknown cause. It can manifest in any organ. The incidence of sarcoidosis varies across countries, and by ethnicity and gender.
View Article and Find Full Text PDFObjective: To estimate the effectiveness, cost effectiveness (to be reported elsewhere), and safety of pharmacy independent prescribers in care homes.
Design: Cluster randomised controlled trial, with clusters based on triads of a pharmacist independent prescriber, a general practice, and one to three associated care homes.
Setting: Care homes across England, Scotland, and Northern Ireland, their associated general practices, and pharmacy independent prescribers, formed into triads.
Background: An important strategy to understand young people's needs regarding technologies for type 1 diabetes mellitus (T1DM) management is to examine their day-to-day experiences with these technologies.
Objective: This study aimed to examine young people's and their caregivers' experiences with diabetes technologies in an exploratory way and relate the findings to the existing technology acceptance and technology design theories. On the basis of this procedure, we aimed to develop device characteristics that meet young people's needs.
Introduction: The terms 'precision medicine' and 'personalised medicine' have become key terms in health-related research and in science-related public communication. However, the application of these two concepts and their interpretation in various disciplines are heterogeneous, which also affects research translation and public awareness. This leads to confusion regarding the use and distinction of the two concepts.
View Article and Find Full Text PDFIntroduction: Australians have substantial out-of-pocket (OOP) health costs compared with other developed nations, even with universal health insurance coverage. This can significantly affect access to care and subsequent well-being, especially for priority populations including those on lower incomes or with multimorbidity and chronic illness. While it is known that high OOP healthcare costs may contribute to poorer health outcomes, it is not clear exactly how these expenses are experienced by people with chronic illnesses.
View Article and Find Full Text PDFBackground: The in-hospital stay following childbirth is a critical time for education and support of new mothers to establish breastfeeding. The WHO/UNICEF 'Ten Steps to Successful Breastfeeding (Ten Steps)' was launched globally in 1989 to encourage maternity services to educate and support mothers to breastfeed. The strategy is effective, however its uptake within health systems and facilities has been disappointing.
View Article and Find Full Text PDFBackground: Idiopathic inflammatory myopathies (IIM) are a heterogenous group of rare muscular autoimmune diseases characterised by skeletal muscle inflammation with possible diagnostic delay. Our aim was to review the existing evidence to identify overall diagnostic delay for IIM, factors associated with diagnostic delay, and people's experiences of diagnostic delay.
Methods: Three databases and grey literature sources were searched.
Aim: This study aimed to explore primary health care nurses' coping strategies and evaluate the psychometric properties of the Brief Coping Orientation to Problems Experienced (COPE) scale.
Background: Primary health care nurses are experiencing significant COVID-19-related psychological impacts. Beyond understanding the impacts, there is a need to explore coping strategies.
Background: Multiple sclerosis (MS) is a neurological condition whose symptoms, severity, and progression over time vary enormously among individuals. Ideally, each person living with MS should be provided with an accurate prognosis at the time of diagnosis, precision in initial and subsequent treatment decisions, and improved timeliness in detecting the need to reassess treatment regimens. To manage these three components, discovering an accurate, objective measure of overall disease severity is essential.
View Article and Find Full Text PDFBackground: A key public health measure protecting the population from COVID-19 is vaccination. Unvaccinated people have higher COVID-19 case rates and death rates than those who are fully or partially vaccinated. It has, and continues to be, critical to optimise COVID-19 vaccination uptake in the community.
View Article and Find Full Text PDFBackground: Telehealth and other digital modes of care have been widely introduced in response to the COVID-19 pandemic and have enabled access to healthcare while reducing community transmission and keeping patients and practitioners safe. However, the benefits of telehealth are not evenly distributed, and may perpetuate some forms of disadvantage.
Objective: While the 'digital divide' is often understood in socioeconomic terms or geographic terms, the reasons for digital exclusion among older people may vary.
Background: Portable breath ketone sensors may help people with Type 1 Diabetes Mellitus (T1DM) avoid episodes of diabetic ketoacidosis; however, the design features preferred by users have not been studied. We aimed to elucidate breath sensor design preferences of young people with T1DM (age 12 to 16) and their parents to inform the development of a breath ketone sensor prototype that would best suit their diabetes management needs.
Research Designs And Methods: To elicit foundational experiences from which design preference ideas could be generated, two commercially available breath ketone sensors, designed for ketogenic diet monitoring, were explored over one week by ten young people with T1DM.
Background: Improvement in practitioners' consultation skills (CSs) can be driven by patient feedback, however, to date, no study has been conducted with reference to pharmacy consultations. The Interpersonal Skills Questionnaire (ISQ) is potentially appropriate for collecting patient feedback on pharmacists' CSs. This study aims to explore the feasibility of collecting patient feedback on hospital pharmacists' CSs using the ISQ, to identify the acceptability of the feedback process, and to identify methods to enhance the process in the future.
View Article and Find Full Text PDFBackground: The education and support of new mothers during the in-hospital stay for childbirth is a critical time to establish breastfeeding. The Baby-Friendly Hospital Initiative was launched in 1991 to encourage maternity services to support and educate mothers to breastfeed by implementing Ten Steps to Successful Breastfeeding.
Research Aim: To explore midwives' experiences of implementing the Baby-Friendly Hospital Initiative in a Baby-Friendly accredited public hospital in Australia.
Introduction: Idiopathic inflammatory myopathies (IIM). described as 'inflammatory myositis', are a heterogeneous group of rare muscular autoimmune diseases characterised by skeletal muscle inflammation. Its complex characteristics with lack of accurate diagnostic tests, unified classification system and comprehensive widely used diagnostic criteria could lead to diagnostic delay.
View Article and Find Full Text PDFObjectives: The aim of this study was to identify patient, hospital and transitional factors associated with unplanned 30-day readmissions in patients who had a total hip arthroplasty (THA).
Design: A cross-sectional survey was performed. All patients attending a 6-week follow-up after a THA in the Australian Capital Territory (ACT) at four public and private clinics in the ACT from 1 February 2018 to 31 January 2019, were invited to complete an .
Integrating primary care with the health response is key to managing pandemics and other health emergencies. In recognition of this, the Australian Government established a network of respiratory clinics led by general practitioners in response to the coronavirus disease 2019 (COVID-19) pandemic as part of broader measures aimed at supporting primary care. General practitioner (GP) respiratory clinics provide holistic face-to-face assessment and treatment to those with respiratory symptoms in an environment with strict protocols for infection prevention and control.
View Article and Find Full Text PDFThe COVID-19 pandemic has challenged the mental health of communities worldwide, with the triple pressures of financial insecurity, lockdowns, and worry about the infection. Australia rapidly deployed resources to protect the mental wellbeing of the community through supplementing existing services, supporting at-risk groups, investing in social supports, embracing technology, and supporting the health workforce. This paper describes the Australian Government's investment in mental health during the COVID-19 pandemic in relation to the 10 priority areas identified in Australia's National Mental Health Pandemic Response Plan.
View Article and Find Full Text PDFObjectives: The aim of this study was to investigate factors associated with unplanned 30-day readmissions following a total knee arthroplasty (TKA), including association with post-hospital syndrome, patient enablement and transition from hospital to home.
Design, Setting And Participants: A cross-sectional written survey of public and private patients attending a 6-week follow-up appointment after TKA at one of four clinical services in the Australian Capital Territory (ACT) between 1 February 2018 and 31 January 2019. Multiple logistic regression analyses were used to measure associations between patient, hospital and transitional care factors with unplanned 30-day readmissions, while controlling for known confounders.