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High-resolution HLA genotyping in inclusion body myositis refines 8.1 ancestral haplotype association to DRB1*03:01:01 and highlights pathogenic role of arginine-74 of DR?1 chain
No full textObjectives: Inclusion body myositis (IBM) is a progressive inflammatory-degenerative muscle disease of older individuals, with some patients producing anti-cytosolic 5\u27-nucleotidase 1A (NT5C1A, aka cN1A) antibodies. Human Leukocyte Antigens (HLA) is the highest genetic risk factor for developing IBM. In this study, we aimed to further define the contribution of HLA alleles to IBM and the production of anti-cN1A antibodies.
Methods: We HLA haplotyped a Western Australian cohort of 113 Caucasian IBM patients and 112 ethnically matched controls using Illumina next-generation sequencing. Allele frequency analysis and amino acid alignments were performed using the Genentech/MiDAS bioinformatics package. Allele frequencies were compared using Fisher\u27s exact test. Age at onset analysis was performed using the ggstatsplot package. All analysis was carried out in RStudio version 1.4.1717.
Results: Our findings validated the independent association of HLA-DRB1*03:01:01 with IBM and attributed the risk to an arginine residue in position 74 within the DRβ1 protein. Conversely, DRB4*01:01:01 and DQA1*01:02:01 were found to have protective effects; the carriers of DRB1*03:01:01 that did not possess these alleles had a fourteenfold increased risk of developing IBM over the general Caucasian population. Furthermore, patients with the abovementioned genotype developed symptoms on average five years earlier than patients without. We did not find any HLA associations with anti-cN1A antibody production.
Conclusions: High-resolution HLA sequencing more precisely characterised the alleles associated with IBM and defined a haplotype linked to earlier disease onset. Identification of the critical amino acid residue by advanced biostatistical analysis of immunogenetics data offers mechanistic insights and future directions into uncovering IBM aetiopathogenesis
Current myositis clinical trials and tribulations
No full textWith improved understanding of disease pathogenesis and availability of outcome measures, there has been a remarkable increase in the number of therapeutic clinical trials in idiopathic inflammatory myopathies (myositis) over the last three years reaching as many as five trials per site. These trials share similar design and inclusion/ exclusion criteria resulting in a competitive clinical trial landscape in myositis. While these are exciting times for the myositis field, we have a number of concerns about the design and conduct of the myositis trials. These include competitive landscape, lengthy placebo arms, underrepresentation of minority groups among participants, use of patient reported outcome measures with limited/no data on validity in myositis, antiquated disease classification criteria, and unclear performance of the ACR/EULAR Myositis Response Criteria in skin predominant patients despite inclusion of these patients in trials. In this viewpoint, we further discuss these concerns and offer potential solutions such as including patient perspectives in the trial design and adoption of innovative frameworks
Who funds published disability research in Australia?
No full textIn this article, we describe the sources of funding cited, and topics of research associated with that funding, in Australian disability research. We conducted a systematic search for publicly available peer-reviewed papers reporting the findings of Australian disability research studies focused on Australia in the 2018–2020 period. Papers identified were analyzed according to research topic, participant group, study methodology, and funding sources acknowledged. In total, 1,241 relevant papers were identified. Of these, 582 papers (47%) reported at least one funding source. Government sources accounted for most funding identified (n = 487), followed by university sector (n = 112), nongovernment organizations (n = 99) and for-profit organization funding (n = 17). The most funding went to intellectual disability (22%), autism (15%), and psychosocial disability (12%). Only 16 (1.3%) papers citing funding sources reported their research was conducted in partnership with people with disability. Research funding influences the priorities of disability research, how it is conducted, and its outputs. Funding therefore shapes the information available to build evidence-based systems of service and support for and with people with disability. It is essential that research funding policies are considered in relation to broader disability policy goals and the research priorities of the disability community
Supporting cancer survivors following treatment for Non-Hodgkin\u27s and Hodgkin\u27s Lymphoma: A pilot study assessing the feasibility and process outcomes of a nurse-led intervention
No full textObjective: Lymphoma is the sixth most common cancer in Australia and comprises 2.8% of worldwide cancer diagnoses. Research targeting development and evaluation of post-treatment care for debilitating complications resulting from the disease and its treatment is limited. This study aimed to assess the feasibility and acceptability of a nurse-led survivorship intervention, post-treatment in Hodgkin’s and non-Hodgkin’s lymphoma survivors.
Methods: A single-center, prospective, 3-arm, pilot, randomized controlled, parallel-group trial was used. People with lymphoma were recruited and randomized to the intervention (ENGAGE), education booklet only, or usual care arm. Participants receiving ENGAGE received an educational booklet and were offered 3 consultations (via various modes) with a cancer nurse to develop a survivorship care plan and healthcare goals. Participant distress and intervention acceptability was measured at baseline and 12-wk. Acceptability was measured via a satisfaction survey using a 11-point scale. Feasibility was measured using participation, retention rates, and process outcomes. Data were analyzed using descriptive statistics.
Results: Thirty-four participants with HL and NHL were recruited to the study (11 = intervention, 11 = information only, 12 = usual care). Twenty-seven participants (79%) completed all time points from baseline to 12 wk. Seven (88%) of the 8 participants receiving ENGAGE completed all consultations using various modes to communicate with the nurse (videoconference 14/23, 61%; phone 5/23, 22%; face-to-face 4/23, 17%). Participants who completed the intervention were highly satisfied with ENGAGE.
Conclusion: The ENGAGE intervention is feasible and highly acceptable for lymphoma survivors. These findings will inform a larger trial assessing effectiveness and cost effectiveness of ENGAGE
Vape stores in Western Australia: growth, proximity to schools and socio-economic gradient of density
No full textObjective: To audit the number and location of dedicated e-cigarette retailers ( vape stores ) in Western Australian (WA), measure proximity to schools and model the association between vape store density and socio-economic disadvantage.
Methods: Vape stores were identified via internet search and geocoded. Proximity to schools was measured. Regression modelling was used to investigate the association between vape store density and socio-economic disadvantage.
Results: 194 stores were identified, with 88% located within one kilometre of a school. In metropolitan WA, vape store density was nearly seven times higher in the most socio-economically disadvantaged areas than in the least disadvantaged areas (rate ratio 6.9, 95% confidence interval 3.4-15.5).
Conclusions: There has been rapid, recent growth in the number of vape stores in WA, with most located within walking distance of schools. In metropolitan WA, vape store density is strongly associated with socio-economic disadvantage, mirroring the pattern observed globally for tobacco outlets.
Implications for public health: This is the first Australian study demonstrating that vape stores are more densely located in socio-economically disadvantaged areas. Vape stores\u27 proximity to schools may increase young people\u27s access and exposure to promotional signage. There is a need to address ready e-cigarette availability through strong regulatory and compliance measures
Utilisation of chronic disease and mental health management services and cardioprotective medication prescriptions in primary care for patients with cardiovascular diseases and cancer: A cross-sectional study
No full textBackground: Cardiovascular disease (CVD) is a leading cause of morbidity and mortality among cancer survivors. Mental health is considered an important risk factor affecting the treatment of cardiovascular disease. However, little is known about the use of secondary prevention strategies for CVD in patients with both cancer and CVD. This study aimed to compare the utilisation of primary care chronic disease management plans, mental health care and guideline-indicated cardioprotective medications among CVD patients with and without cancer.
Methods: Retrospective cross-sectional study utilising clinical data of patients with CVD from 50 Australian primary care practices. Outcomes included the use of chronic disease management plans, mental health care, guideline-indicated cardioprotective medications and influenza vaccination. Logistic regression, accounting for demographic and clinical covariates and clustering effects by practices, was used to compare the two groups.
Results: Of the 15,040 patients with CVD, 1,486 patients (9.9%) concurrently had cancer. Patients with cancer, compared to those without, were older (77.6 vs 71.8 years, p,0.001), more likely to drink alcohol (62.6% vs 55.7%, p,0.001), have lower systolic (130.3617.8 vs 132.5621.1 mmHg, p,0.001) and diastolic (72.2611 vs 75.3634 mmHg, p,0.001) blood pressure. Although suboptimal for both groups, patients with cancer were significantly more likely to have general practice management plans (GPMPs) (51.4% vs 43.2%, p,0.001), coordination of team care arrangements (TCAs) (46.2% vs 37.0%, p,0.001), have a review of either GPMP or TCA (42.8% vs 34.7%, p,0.001), have a mental health treatment consultation (15.4% vs 10.5%, p=0.004) and be prescribed blood pressure-lowering medications (70.1% vs 66.0%, p=0.002). However, there were no statistical differences in the prescription of lipid-lowering or antiplatelet medications. After adjustments for covariates and multiple testing, patients with cancer did not show a difference in GPMPs, TCAs, and a review of either, but were more likely to receive mental health treatment consultations than those without cancer (odds ratio 1.76; 95% confidence interval 1.42–2.19).
Conclusions: Less than half of patients with CVD had a GPMP, TCA or review of either. Although those patients with cancer were more likely to receive these interventions, still around half the patients did not. Medicare-funded GPMPs, TCAs and a review of either GPMP or TCA were underutilised, and future studies should seek to identify ways of improving access to these services
Fever, hyperglycemia, and swallowing management in stroke unit and non-stroke-unit European hospitals: A quality in acute stroke care (QASC) Europe substudy
No full textBackground: Stroke unit care reduces patient morbidity and mortality. The Quality in Acute Stroke Care Europe Study achieved significant large-scale translation of nurse-initiated protocols to manage Fever, hyperglycemia (Sugar), and Swallowing (FeSS) in 64 hospitals across 17 European countries. However, not all hospitals had stroke units. Our study aimed to compare FeSS protocol adherence in stroke unit versus non–stroke-unit hospitals.
Methods: An observational study using Quality in Acute Stroke Care Europe Study postimplementation data was undertaken. Hospitals were categorized using 4 evidence-based characteristics for defining a stroke unit, collected from an organizational survey of participating hospitals. Differences in FeSS Protocol adherence between stroke unit and non–stroke-unit hospitals were investigated using mixed-effects logistic regression, adjusting for age, sex, and National Institutes of Health Stroke Scale.
Results: Of the 56 hospitals from 16 countries providing organizational data, 34 (61%) met all 4 stroke unit characteristics, contributing data for 1825 of 2871 patients (64%) (stroke unit hospitals). Of the remaining 22 hospitals (39%), 17 (77%) met 3 of the 4 stroke unit characteristics (non–stroke-unit hospitals). There were no differences between hospitals with a stroke unit and those without for postimplementation adherence to fever (49% stroke unit vs 57% non–stroke unit; odds ratio [OR], 0.400; 95% confidence interval [CI], 0.087-1.844; P = .240), hyperglycemia (50% stroke unit vs 57% non–stroke unit; OR, 0.403; 95% CI, 0.087–1.856; P = .243), swallowing (75% stroke unit vs 60% non–stroke unit; OR, 1.702; 95% CI, 0.643–4.502; P = .284), or overall FeSS Protocol adherence (36% stroke unit vs 36% non–stroke unit; OR, 0.466; 95% CI, 0.106–2.043; P = .311).
Conclusion: Our results demonstrate that the nurse-initiated FeSS Protocols can be implemented by hospitals regardless of stroke unit status. This is noteworthy because hospitals without stroke unit resources that care for acute stroke patients can potentially implement these protocols. Further effort is needed to ensure better adherence to the FeSS Protocols
The impact of breast density notification on psychosocial outcomes in racial and ethnic minorities: A systematic review
No full textBackground: High breast density is an independent risk factor for breast cancer and decreases the sensitivity of mammography. This systematic review synthesizes the evidence on the impact of breast density (BD) information and/or notification on women’s psychosocial outcomes among women from racial and ethnic minority groups.
Methods: A systematic search was performed in March 2023, and the articles were identified using CINHAL, Embase, Medline, and PsychInfo databases. The search strategy combined the terms “breast”, “density”, “notification” and synonyms. The authors specifically kept the search terms broad and did not include terms related to race and ethnicity. Full-text articles were reviewed for analysis by race, ethnicity and primary language of participants. Two authors evaluated the eligibility of studies with verification from the study team, extracted and crosschecked data, and assessed the risk of bias.
Results: Of 1784 articles, 32 articles published from 2003 to 2023 were included. Thirty-one studies were conducted in the United States and one in Australia, with 28 quantitative and four qualitative methodologies. The overall results in terms of breast density awareness, knowledge, communication with healthcare professionals, screening intentions and supplemental screening practice were heterogenous across studies. Barriers to understanding BD notifications and intentions/access to supplemental screening among racial and ethnic minorities included socioeconomic factors, language, health literacy and medical mistrust. Conclusions: A one-size approach to inform women about their BD may further disadvantage racial and ethnic minority women. BD notification and accompanying information should be tailored and translated to ensure readability and understandability by all wome
Effectiveness of Community-Based Rehabilitation (CBR) centers for improving physical fitness for community- dwelling older adults: A systematic review and meta-analysis
No full textTo synthesise the best available evidence for the effectiveness of interventions delivered in community-based rehabilitation (CBR) centers on physical fitness, for community-dwelling older adults living in Asian countries. This study is a systematic review and meta-analysis. Seven English and two Chinese electronic databases were searched for randomised controlled trials (RCTs) and quasi-experimental studies that were conducted by centers providing CBR. Independent reviewers screened, quality-appraised and extracted data. The primary outcome was physical fitness measured by validated assessment tools, including the Timed Up and Go Test (TUG), gait speed, hand grip strength, Functional Reach Test (FRT), and one-leg standing test. Assessments of activity of daily living and quality of life using tools including the Barthel Index, Short Form (SF)-12, and SF-36 were secondary outcomes. After screening 5,272 studies, 29 studies were included (16 RCTs, 13 quasi-experimental studies) from four countries. Meta-analyses found that CBR programs significantly decreased TUG time (mean difference [MD], -1.89 seconds; 95% confidence interval [95% CI], -2.84 to -0.94; I2 =0%; Z=3.90, p\u3c0.0001), improved gait speed (MD, 0.10 m/s; 95% CI, 0.01–0.18; I2 =0%; Z=2.26, p=0.02), and increased one-leg standing time (MD, 2.81 seconds; 95% CI, 0.41–5.22; I2 =0%; Z=2.29, p=0.02). Handgrip strength and FRT showed no statistically significant improvement in the meta-analyses. CBR may improve aspects of physical fitness for older adults in Asian countries. However, variability in intervention components and measurement tools reduced the ability to pool individual studies. Further trials are required with robust designs including standardised measures of physical fitness
Access to child developmental assessment services in culturally and linguistically diverse metropolitan Sydney: A retrospective cohort analysis
No full textBackground: Despite the increasing prevalence of neurodevelopmental disorders (NDD), data regarding access to child development services have remained limited globally. Long wait times are a major barrier to developmental assessments, impacting on care and outcomes. The aim is to retrospectively analyse the demographic profile and prioritisation of patients seen at a child developmental assessment service (CDAS) in a vulnerable region of Sydney, and explore factors affecting wait times.
Methods: Data was collated and analysed for 2354 patients from 2018 to 2022. Socio-Economic Indexes for Areas (SEIFA) were collated from the Australian Bureau of Statistics. Descriptive statistics were used for demographic data and various statistical methods were used to analyse the relationships and impact of factors likely to affect wait lists.
Results: The median age was 51 months (IQR41-61) and males comprised 73.7% of the cohort. 64% of children were from culturally and linguistically diverse backgrounds (CALD) and 47% lived in the most disadvantaged suburbs. The median wait time was 302.5 days (IQR175-379) and 70% of children were seen within 12 months. CALD patients and children over 5-years had shorter wait times. Most children with Global Developmental Delay (GDD) were from the lowest four SEIFA deciles and waited longer for an appointment. 42.6% were seen within the priority allocated time or sooner. Children with ASD and/or severe GDD were prioritised to be seen earlier. Overall, the study could not demonstrate any difference in the wait times according to the prioritisation groups.
Conclusion: This study provides insights into the profile, prioritisation processes and wait lists of children seen by CDAS in South Western Sydney with high rates of social vulnerability and presents an argument to discuss benchmarking targets with service providers. It identifies the need to prioritise children living in suburbs with socioeconomic disadvantage and refine prioritisation and data collection processes to improve wait times