Experiences of COVID-19 in an Australian community cohort of adults with epilepsy.

A number of studies have been conducted on the effects of the COVID-19 pandemic on people with epilepsy (PWE), some showing increased seizures, poorer psychosocial states, and reductions in Quality of Life (QoL). During the latter stages of COVID-19, well before the UN declared an end to the state of emergency, our study was conducted in Australia of a sample of women and men ≥ 18 years. The study was based on Wave 6 of the Australian Epilepsy Longitudinal Study (AELS).

Exploring the potential extended role of community pharmacy in the management of osteoarthritis: A multi-methods study with pharmacy staff and other healthcare professionals.

Introduction: Osteoarthritis is the commonest form of chronic joint pain, which patients often self-manage before seeking healthcare advice. Patients frequently seek advice from community pharmacies, and a recent policy has recommended integrating community pharmacies into long-term condition pathways. This study explored community pharmacy teams' (CPs) and other healthcare professionals' (HCPs) views on community pharmacies providing an extended role for osteoarthritis management, identifying potential barriers and facilitators to this.

Co-development and testing of an extended community pharmacy model of service delivery for managing osteoarthritis: protocol for a sequential, multi-methods study (PharmOA).

Background: Osteoarthritis is a common, painful and disabling long-term condition. Delivery of high-quality guideline-informed osteoarthritis care that successfully promotes and maintains supported self-management is imperative. However, osteoarthritis care remains inconsistent, including under use of core non-pharmacological approaches of education, exercise and weight loss.

A novel, multidomain, primary care nurse-led and mHealth-assisted intervention for dementia risk reduction in middle-aged adults (HAPPI MIND): study protocol for a cluster randomised controlled trial.

Introduction: Middle-aged multidomain risk reduction interventions targeting modifiable risk factors for dementia may delay or prevent a third of dementia cases in later life. We describe the protocol of a cluster randomised controlled trial (cRCT), HAPPI MIND (Holistic Approach in Primary care for PreventIng Memory Impairment aNd Dementia). HAPPI MIND will evaluate the efficacy of a multidomain, nurse-led, mHealth supported intervention for assessing dementia risk and reducing associated risk factors in middle-aged adults in the Australian primary care setting.

Alberta Spinal Muscular Atrophy Newborn Screening-Results from Year 1 Pilot Project.

Spinal muscular atrophy (SMA) is a progressive neuromuscular disease caused by biallelic pathogenic/likely pathogenic variants of the () gene. Early diagnosis via newborn screening (NBS) and pre-symptomatic treatment are essential to optimize health outcomes for affected individuals. We developed a multiplex quantitative polymerase chain reaction (qPCR) assay using dried blood spot (DBS) samples for the detection of homozygous absence of exon 7 of the gene.

Series: Public engagement with research. Part 1: The fundamentals of public engagement with research.

Background: In the first of a four-part series, we describe the fundamentals of public engagement in primary care research.

Objectives: The article's purpose is to encourage, inform and improve the researcher's awareness about public engagement in research. For a growing number of researchers, funders and patient organisations in Europe, public engagement is a moral and ethical imperative for conducting high-quality research.

Participatory Design and Evaluation of the "Stem Cells Australia" Website for Delivering Complex Health Knowledge: Mixed Methods Study.

Background: The internet has become a commonly used information source for people seeking to understand their health care options. However, inconsistent representation about what stem cell treatments are available and from whom, coupled with the lack of transparency about what has been shown to work or is even safe, can distract and mislead users. Given these challenges, there is a need to develop effective evidence-based tools for delivering information about health care options involving stem cells.

Mentoring as a potential means to assist consumer representatives contribute effectively to the assessment of health technologies in Australia: a pragmatic review.

Objectives: This project was implemented on behalf of the Health Technology Assessment (HTA) Consumer Consultative Committee (CCC) to explore training to support and retain new consumer representatives to participate effectively in HTA committees. These committees are key parts of the Australian Government's health system. Currently, there is no training available to them, specific to their roles in HTA committees.

Making community voices heard in a research-health service alliance, the evolving role of the Community Advisory Group: a case study from the members' perspective.

Background: The Melbourne Genomics Health Alliance (the Alliance) is a collaboration of leading hospitals, research and academic organisations, supported by its member organisations and the Victorian Government. The Alliance was set up by its members in 2013 to steer the translation of genomics, making it an integral part of health care in Victoria, Australia. The Community Advisory Group (CAG) was formed soon after, to give input and advice across the program.

Universal health care and political economy, neoliberalism and effects of COVID-19: A view of systems and complexity.

Sturmberg and Martin's application of systems and complexity theory to understanding Universal Health Care (UHC) and Primary Health Care (PHC) is evaluated in the light of the influence of political economy on health systems. Furthermore, the role that neoliberal approaches to governance have had in creating increased inequities is seen as a key challenge for UHC. COVID-19 has emphasized long standing discrepancies in health and these disadvantages require government will and cooperation together with adequate social services to redress these discrepancies in UHC.

Does pre-existing morbidity influences risks and benefits of total hip replacement for osteoarthritis: a prospective study of 6682 patients from linked national datasets in England.

Unlabelled: Total hip arthroplasty (THA) surgery for elderly people with multimorbidity increases the risk of serious health hazards including mortality. Whether such background morbidity reduces the clinical benefit is less clear.

Objective: To evaluate how pre-existing health status, using multiple approaches, influences risks of, and quality of life benefits from, THA.

Retrospective testing of respiratory specimens for COVID-19 to assess for earlier SARS-CoV-2 infections in Alberta, Canada.

Background: The first case of coronavirus disease 2019 (COVID-19) in Alberta, Canada, was confirmed on March 5, 2020. Because the virus testing criteria had changed significantly over this time period, we wanted to ascertain whether previous cases of COVID-19 had been missed in the province.

Methods: Our aim was to retrospectively evaluate specimens submitted for respiratory virus testing from December 1, 2019, through March 7, 2020, for undetected severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infections before the first confirmed case.

Universal health coverage and primary health care: Their place in people's health.

Sturmberg and Martin in 2020 argue that universal health coverage (UHC) is mainly about financing, and primary health care (PHC) is about the right care at the right time to ensure health. They maintain that the World Health Organization has recently sent the wrong message about the "pillars" of PHC in their relationship to UHC. An understanding of political economy is required in order to come to terms with the bases of PHC and the fundamentals of UHC that dealing with inequities is not only an economic issue but fundamentally a political issue.

Examining quality of life in an Australian cohort of people with epilepsy over six years - Understanding the role of stigma and mood.

Aim: Research examining quality of life (QoL) among people living with epilepsy (PWE) consistently highlights the detrimental impact of stigma, anxiety, and depression, as well as the dynamic and changing nature of QoL over time. This paper represents the first panel study of the Australian Epilepsy Longitudinal Survey (AELS), examining factors that influence the QoL of PWE over a six-year interval, particularly focusing on experiences of stigma, depression, and anxiety.

Methods: Ninety-two adults participated in both Wave 2 (T1; 2010) and Wave 4 (T2; 2016/17) of the AELS.

Where Does Value Lie in Peer Support? An Exploratory Discussion of the Theories and Methods Underpinning Effective Research in Peer Support.

A literature review was undertaken in 2019 to review research into the effectiveness of peer support in chronic disease self-management. As with an earlier literature review, we found the results disappointing due to poor reporting and poor research design. Lack of information on training of peer supporters, unrealistically short timeframes to produce changes in health behaviors, and lack of any theoretical underpinning of the research design contributed to rating randomized controlled trials as poor to medium quality evidence.

Needs for aids and equipment for the management of epilepsy in an Australian cohort.

Aim: This paper investigated the bases of needs for a range of epilepsy aids and equipment and expressed concerns about the use of such devices.

Method: There was a 29.6% response rate (n = 393 of 1328) to Wave 4 of the Australian Epilepsy Longitudinal Study (AELS).

Quality of life and its association with comorbidities and adverse events from antiepileptic medications: Online survey of patients with epilepsy in Australia.

Objective: This study aimed to explore the quality of life (QoL) of adult patients with epilepsy (PwE) in Australia and its relationship with comorbidities and adverse events (AEs) from antiepileptic drugs (AEDs).

Methods: Cross-sectional surveys were completed by PwE, or carer proxies, recruited via the online pharmacy application MedAdvisor and Australian PwE Facebook groups from May to August 2018. Data were collected on demographics, epilepsy severity and management, AEs, comorbidities, and QoL (using the Patient-Weighted Quality of Life in Epilepsy Inventory [QOLIE-10-P] total score).

Reported service needs at diagnosis of epilepsy and implications for quality of life.

Aim: This paper reports on contributing factors to Quality of Life (QoL) in an Australian community sample of people with epilepsy (PWE).

Method: Three hundred and ninety-three respondents or 29.6% of people on the Australian Epilepsy Research Register participated in Wave 4 of a longitudinal survey.

Health and Disease-Emergent States Resulting From Adaptive Social and Biological Network Interactions.

Health is an adaptive state unique to each person. This subjective state must be distinguished from the objective state of disease. The experience of health and illness (or poor health) can occur both in the absence and presence of objective disease.

'I hate wasting the hospital's time': Experiences of emergency department admissions of Australian people with epilepsy.

Aim: This paper investigates the reasons and extent of hospital emergency department (ED) attendance by people with epilepsy in Wave 4 of The Australian Longitudinal Survey 2016-17.

Method: Wave 4 had 393 respondents who completed the survey, which included questions relating to their use of hospital and healthcare services. Of these, 121 (31%; 82 females) reported one or more admissions to the ED within the previous 12 months.

Validation of hip osteoarthritis diagnosis recording in the UK Clinical Practice Research Datalink.

Purpose: The diagnosis of hip osteoarthritis is subject to several uncertainties, especially in primary care. The aims of this study were to determine (i) the diagnostic accuracy of coding of hip osteoarthritis by primary care physicians in the UK Clinical Practice Research Datalink (CPRD), (ii) the relative influence of radiographic and clinical parameters on diagnostic accuracy, and (iii) the accuracy of the diagnosis date.

Methods: An extract of all patients aged over 65 years, with a Read code for hip osteoarthritis listed between January 1995 and December 2014, was obtained from CPRD.

Development and validation of prediction models to estimate risk of primary total hip and knee replacements using data from the UK: two prospective open cohorts using the UK Clinical Practice Research Datalink.

Objectives: The ability to efficiently and accurately predict future risk of primary total hip and knee replacement (THR/TKR) in earlier stages of osteoarthritis (OA) has potentially important applications. We aimed to develop and validate two models to estimate an individual's risk of primary THR and TKR in patients newly presenting to primary care.

Methods: We identified two cohorts of patients aged ≥40 years newly consulting hip pain/OA and knee pain/OA in the Clinical Practice Research Datalink.

A commentary on Martin's "What matters in 'multimorbidity'? Arguably resilience and personal health experience are central to quality of life and optimizing survival." J. Eval. Clin. Pract. 2016; 1-3.

This is a commentary on Martin's 2016 article on "What matters in 'multimorbidity'." The relationship between self-reported health and resilience is an important recognition of how all health professionals can work productively with their patients within a shared decision framework.