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BACKGROUND: Research evidence suggests that a lack of engagement with palliative care and advance care planning could be attributed to a lack of knowledge, presence of misconceptions and stigma within the general public. However, the importance of how death, dying and bereavement are viewed and experienced has been highlighted as an important aspect in enabling public health approaches to palliative care. Therefore, research which explores the public views on strategies to facilitate engagement with palliative care and advance care planning is required. METHODS: Exploratory, qualitative design, utilising purposive random sampling from a database of participants involved in a larger mixed methods study. Online semi-structured interviews were conducted (n = 28) and analysed using reflexive thematic analysis. Thematic findings were mapped to the social-ecological model framework to provide a holistic understanding of public behaviours in relation to palliative care and advance care planning engagement. RESULTS: Three themes were generated from the data: "Visibility and relatability"; "Embedding opportunities for engagement into everyday life"; "Societal and cultural barriers to open discussion". Evidence of interaction across all five social ecological model levels was identified across the themes, suggesting a multi-level public health approach incorporating individual, social, structural and cultural aspects is required for effective public engagement. CONCLUSIONS: Public views around potential strategies for effective engagement in palliative care and advance care planning services were found to be multifaceted. Participants suggested an increase in visibility within the public domain to be a significant area of consideration. Additionally, enhancing opportunities for the public to engage in palliative care and advance care planning within everyday life, such as education within schools, is suggested to improve death literacy and reduce stigma. For effective communication, socio-cultural aspects need to be explored when developing strategies for engagement with all members of society.
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Planificación Anticipada de Atención , Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Grupos de Población , Estigma Social , Salud Pública , Investigación CualitativaRESUMEN
OBJECTIVES: To determine long-term (20 year) survival in RA patients enrolled in the Australian Rheumatology Association Database (ARAD). METHODS: ARAD patients with RA and data linkage consent who were diagnosed from 1995 onwards were included. Death data were obtained through linkage to the Australian National Death Index. Results were compared with age-, gender- and calendar year-matched Australian population mortality rates. Analysis included both the standardized mortality ratio (SMR) and relative survival models. Restricted mean survival time (RMST) at 20 years was calculated as a measure of life lost. Cause-specific SMRs (CS-SMRs) were estimated for International Classification of Diseases, Tenth Revision cause of death classifications. RESULTS: A total of 1895 RA patients were included; 74% were female, baseline median age 50 years (interquartile range 41-58), with 204 deaths. There was no increase in mortality over the first 10 years of follow up, but at 20 years the SMR was 1.49 (95% CI 1.30, 1.71) and the relative survival was 94% (95% CI 91, 97). The difference between observed (18.41 years) and expected (18.68 years) RMST was 4 months. Respiratory conditions were an important underlying cause of death in RA, primarily attributable to pneumonia [CS-SMR 5.2 (95% CI 2.3, 10.3)] and interstitial lung disease [CS-SMR 7.6 (95% CI 3.0, 14.7)], however, coronary heart disease [CS-SMR 0.82 (95% CI 0.42, 1.4)] and neoplasms [CS-SMR 1.2 (95% CI 0.89, 1.5)] were not. CONCLUSION: Mortality risk in this RA cohort accrues over time and is moderately increased at 20 years of follow-up. Respiratory diseases may have supplanted cardiovascular diseases as a major contributor to this mortality gap.
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Artritis Reumatoide , Enfermedades Cardiovasculares , Enfermedades Respiratorias , Humanos , Femenino , Persona de Mediana Edad , Masculino , Causas de Muerte , Australia/epidemiologíaRESUMEN
OBJECTIVES: To determine COVID-19 vaccine hesitancy rates in inflammatory arthritis patients and identify factors associated with changing vaccine hesitancy over time. METHODS: This investigation was a prospective cohort study of inflammatory arthritis patients from community and public hospital outpatient rheumatology clinics enrolled in the Australian Rheumatology Association Database (ARAD). Two surveys were conducted, one immediately prior to (pre-pandemic) and another approximately 1 year after the start of the pandemic (follow-up). Coronavirus disease 2019 (COVID-19) vaccine hesitancy was measured at follow-up, and general vaccine hesitancy was inferred pre-pandemic; these were used to identify factors associated with fixed and changing vaccine beliefs, including sources of information and broader beliefs about medication. RESULTS: Of the 594 participants who completed both surveys, 74 (12%) were COVID-19 vaccine hesitant. This was associated with pre-pandemic beliefs about medications being harmful (P < 0.001) and overused (P = 0.002), with stronger beliefs resulting in vaccine hesitancy persistent over two time points (P = 0.008, P = 0.005). For those not vaccine hesitant pre-pandemic, the development of COVID-19 vaccine hesitancy was associated with a lower likelihood of seeking out vaccine information from health-care professionals (P < 0.001). COVID-19 vaccine hesitancy was not associated with new influenza vaccine hesitancy (P = 0.138). CONCLUSION: In this study of vaccine beliefs before and during the COVID-19 pandemic, factors associated with COVID-19 vaccine hesitancy in inflammatory arthritis patients varied, depending on vaccine attitudes immediately prior to the start of the pandemic. Fixed beliefs reflected broader views about medications, while fluid beliefs were highly influenced by whether they sought out information from health-care professionals, including rheumatologists.
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Artritis , COVID-19 , Humanos , Vacunas contra la COVID-19/uso terapéutico , Pandemias , Estudios Prospectivos , COVID-19/epidemiología , COVID-19/prevención & control , Australia/epidemiología , Artritis/tratamiento farmacológico , VacunaciónRESUMEN
OBJECTIVES: Glucocorticoids (GCs) ('steroids') are used to treat rheumatic diseases but adverse effects are common. We aimed to explore the impact of GC therapy on health-related quality of life (HRQoL), to inform the development of a treatment-specific patient-reported outcome measure (PROM) for use in clinical trials and practice. METHODS: Semi-structured qualitative interviews were conducted with patients from the UK, USA and Australia, treated for a rheumatic condition with GCs in the last 2 years. Purposive sampling was used to select participants with a range of demographic and disease features. An initial conceptual framework informed interview prompts and cues. Interviews elicited GC-related physical and psychological symptoms and salient aspects of HRQoL in relation to GC therapy. Interview data were analysed inductively to develop initial individual themes and domains. Candidate questionnaire items were developed and refined. RESULTS: Sixty semi-structured qualitative interviews were conducted (UK n = 34, USA n = 10, Australia n = 16). The mean age was 58 years; 39/60 were female; and 18 rheumatic diseases were represented. Some 126 individual themes were identified and organized into six domains: physical symptoms; psychological symptoms; psychological impact of steroids; impact of steroids on participation; impact of steroids on relationships; and benefits of steroids. Candidate questionnaire items were tested and refined by piloting with patient research partners, iterative rounds of cognitive interviews and linguistic translatability assessment, informing a draft questionnaire. CONCLUSION: We describe an international qualitative study to develop candidate items for a treatment-specific PROM for patients with rheumatic diseases. A future survey will enable the validation of a final version of the PROM.
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Calidad de Vida , Enfermedades Reumáticas , Humanos , Femenino , Persona de Mediana Edad , Masculino , Glucocorticoides/uso terapéutico , Enfermedades Reumáticas/tratamiento farmacológico , Enfermedades Reumáticas/inducido químicamente , Encuestas y Cuestionarios , Medición de Resultados Informados por el Paciente , EsteroidesRESUMEN
BACKGROUND: Long-acting injectable antipsychotic (LAIA) medications offer an effective treatment option for patients with serious mental illness. Despite demonstrated clinical safety and efficacy as well as increased adherence and less frequent administration compared with daily oral regimens, LAIAs remain underutilized in clinical practice. With legislation allowing pharmacists to administer injectable medications in 48 U.S. states, community pharmacies are uniquely positioned to serve as an access point for patients with serious mental illnesses to receive LAIA injections. OBJECTIVE: This study aimed to conduct a systematic review of the health and economic benefits and costs of community pharmacist administration of LAIA medications. METHODS: A systematic search of the literature published from January 1996 to April 2022 was conducted across 3 databases (Embase, PubMed, and Scopus Plus). Publications describing pharmacist administration of LAIA medications in outpatient settings were included. Publications that examined the use of LAIAs but did not involve a pharmacist administering the medication were excluded. RESULTS: Of 2261 publications reviewed, we identified 8 publications (4 articles and 4 abstracts) that met our inclusion criteria, of which only 7 included results. Four studies reported high medication adherence achieved by patients receiving pharmacist-administered LAIAs. Two publications surveyed patient satisfaction with pharmacist administration of LAIAs in community pharmacy settings. One study found pharmacists' mixed attitudes regarding LAIA administration and time and safety barriers to offering the service. CONCLUSION: We found very little evidence on the impact of pharmacist administration of LAIAs on patient outcomes. This review highlights the need to generate greater evidence on the health and economic benefits as well as financial models for pharmacists to administer LAIA medications in outpatient and community pharmacy settings. Such evidence could support more community pharmacists to offer LAIA medications and contribute to the shift toward value-based care.
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Antipsicóticos , Servicios Comunitarios de Farmacia , Humanos , Farmacéuticos , Inyecciones , Resultado del Tratamiento , Satisfacción del PacienteRESUMEN
Community restrictions due to COVID-19 have changed healthcare, including increased telehealth use. During the early pandemic phase, a cohort of Australian patients with inflammatory arthritis was surveyed. Self-reported access to healthcare was maintained and physical health was more likely to be self-rated poorly than mental health. There was a high level of support for telehealth during and after the pandemic.
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Artritis , COVID-19 , Telemedicina , Artritis/epidemiología , Actitud , Australia/epidemiología , Humanos , Pandemias , SARS-CoV-2RESUMEN
BACKGROUND: Absence status epilepticus (ASE) is a form of generalized nonconvulsive status epilepticus. ASE is characterized by impairment in consciousness, which can vary widely, making the diagnosis more difficult. The typical patient with ASE will be confused yet responsive and in a "trance-like state" with delayed speech, clumsy gait, and the ability to perform simple tasks after prompting. With treatment, typical ASE has an excellent prognosis and does not appear to be associated with significant neuronal damage. CASE PRESENTATION: An 11-year-old boy with history of febrile seizures presented to the emergency department (ED) with altered mental status without trauma or ingestion. His vital signs and physical examination were normal, with the exception of appearing intoxicated with sparse verbalization and inappropriate emotional responses. All laboratory results and imaging were unremarkable. While in the ED, his neurologic examination trended toward normal, returning almost to baseline. He was admitted to the hospital for video electroencephalogram, which revealed status epilepticus. After benzodiazepine therapy, epileptic electrical activity ceased and the patient's symptoms resolved. WHY SHOULD AN EMERGENCY PHYSICIAN BE AWARE OF THIS?: ASE is a rare condition that is uncommonly described in the pediatric population. These patients are frequently misdiagnosed on initial presentation as their alteration in mental status can be easily confused with ingestion, trauma, psychiatric illness, or infectious etiologies. Overturning the long-standing emergency dogma of "if they're talking to you, it's not a seizure" is undoubtedly difficult, but both pediatric and adult providers should be aware of this clinical entity.
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Epilepsia , Trastornos Mentales , Estado Epiléptico , Adolescente , Adulto , Niño , Electroencefalografía , Humanos , Masculino , Convulsiones , Estado Epiléptico/diagnóstico , Estado Epiléptico/etiologíaRESUMEN
BACKGROUND: Current guidelines recommend methotrexate (MTX) as a glucocorticoid-sparing agent in patients with polymyalgia rheumatica (PMR) who relapse or suffer glucocorticoid adverse effects, although there is no level 1 evidence to support this recommendation. AIMS: To review the effect of MTX in PMR on inflammation and glucocorticoid dose. METHODS: Patients with PMR from rheumatology outpatient clinics at two tertiary centres were identified. A structured case note review was conducted for patient characteristics at diagnosis and medications including glucocorticoid and MTX use. RESULTS: There were 70 patients, 61% female; mean (range) age of 70 (51-87) years. At the time of diagnosis, median (±interquartile range) erythrocyte sedimentation rate (ESR) was 38.5 (26-74) mm/h and C-reactive protein (CRP) 34.5 (6-74 mg/L) with median initiating prednisolone dose of 15 mg (range 5-60 mg). MTX was prescribed in 22 (31%) patients. Mean disease duration at MTX initiation was 2.5 years (1-7 years), with median (range) MTX dose of 10 mg (5-20 mg). At MTX initiation, median (interquartile range) (±standard deviation) ESR was 33 (13-60 mm/h) and CRP 19 (8-42 mg/L). Reasons for commencing MTX were disease relapse (34%) or inability to wean prednisolone dose (66%). Six months after MTX initiation, there was significant reduction in ESR (P = 0.012), CRP (P = 0.0003) and prednisolone dose (P < 0.0001). Eleven (50%) patients stopped MTX, five due to controlled PMR, and six due to adverse effects. CONCLUSIONS: In this study of PMR patients in tertiary care, 31% were co-prescribed MTX, after prolonged disease duration. MTX was associated with improved inflammatory activity and reduced prednisolone dose, with a relatively high risk of adverse events.
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Arteritis de Células Gigantes , Polimialgia Reumática , Reumatología , Anciano , Anciano de 80 o más Años , Sedimentación Sanguínea , Femenino , Humanos , Masculino , Metotrexato , Polimialgia Reumática/diagnóstico , Polimialgia Reumática/tratamiento farmacológicoAsunto(s)
Artritis Reumatoide , Estado de Salud , Hospitalización , Humanos , Artritis Reumatoide/mortalidad , Artritis Reumatoide/complicaciones , Australia/epidemiología , Femenino , Masculino , Hospitalización/estadística & datos numéricos , Estudios Prospectivos , Persona de Mediana Edad , Anciano , Bases de Datos Factuales , Dolor , AdultoRESUMEN
OBJECTIVE: The aim of this study was to explore, from the patient's perspective, the beneficial and adverse effects (AEs) of glucocorticoids (GCs) in patients with rheumatic diseases, to be used in the development of a patient-reported outcome measure. METHODS: A cross-sectional survey, capturing benefits and AEs of GC use, was administered to 2 groups of patients: (1) those attending a tertiary rheumatology clinic with various rheumatic diseases who had used GCs within the past year and (2) patients from the Hospital for Special Surgery rheumatoid arthritis database. RESULTS: Cohort 1 had 55 GC users, and cohort 2 had 95 GC users and 29 nonusers. The majority of GC users in both cohorts reported at least 1 AE (100%, 86%). The AE prevalence per person was 50% higher in cohort 1 compared with GC users in cohort 2 (7.7 vs. 5.3; AE ratio, 1.5; 95% confidence interval, 1.3-1.7) and 2-fold greater in cohort 2 GC users compared with GC nonusers (5.3 vs. 2.6; AE ratio, 2.0; 95% confidence interval, 1.6-2.6). In both cohorts, AEs identified as "worst" by GC users included skin thinning/easy bruising, sleep disturbance, mood disturbance, and change in facial shape. Most felt GCs helped their disease "a lot" (78%/62%) and that the benefits were greater than the AEs (55%/64%). Many AEs were more frequent in GC users than in nonusers. CONCLUSIONS: Patients receiving GC therapy for rheumatic conditions report a large number of AEs and those that have the greatest life impact are often difficult for physicians to measure. These results will inform the development of a patient-reported outcome measure to capture the effects of GCs from the patient's perspective.
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Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos , Glucocorticoides , Enfermedades Reumáticas , Adulto , Anciano , Australia , Estudios Transversales , Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos/clasificación , Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos/epidemiología , Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos/etiología , Femenino , Glucocorticoides/administración & dosificación , Glucocorticoides/efectos adversos , Humanos , Masculino , Administración del Tratamiento Farmacológico , Persona de Mediana Edad , Prioridad del Paciente , Medición de Resultados Informados por el Paciente , Enfermedades Reumáticas/tratamiento farmacológico , Enfermedades Reumáticas/psicología , Estados UnidosRESUMEN
Objectives: To evaluate the reliability and validity of an adapted Commissioning for Quality in Rheumatoid Arthritis-RA-Patient-Reported Experience Measure (CQRA-RA-PREM) for assessing care experience in an Australian rheumatology outpatient cohort. Methods: Individual patient interviews were performed to check the language and completion time of the CQRA-RA-PREM before modification. Australian Rheumatology Association Database (ARAD) participants completed the CQRA-PREM-Australian version (CQRA-PREM-AU) (22 items, 5 domains), disease activity measure (RAPID-3, BASDAI) and Assessment of Quality of Life (AQOL-6D) index. Exploratory factor analysis (EFA) assessed item correlation. Cronbach's α assessed internal consistency. Results: Individual patient interviews (n = 8, 62% male, mean age 50 years, mean disease duration 4.5 years) informed CQRA-RA-PREM modification. The ARAD survey response rate was 707/1124 (63%); 459 (65%) RA, 134 (19%) PsA, 114 (16%) AS; 67% female, mean age 62 years, mean disease duration 22 years. The median instrument completion time was 299 s (interquartile range 284-414). Scoring of responses allowed an averaged overall score. EFA extracted five factors: all items loading similarly onto factor 1, indicating validity of the overall score. The CQRA-PREM-AU score correlated with the AQOL-6D score (ρ = 0.23, P < 0.01); partial correlation with disease activity was not significant (ρ = 0.03, P = 0.45), indicating divergent validity. Reliability was comparable across disease subgroups (Cronbach's α >0.94). The mean overall score did not differ by disease subgroup [4.1 (s.d. 0.6, P = 0.73) and there was no floor/ceiling effect. Conclusion: CQRA-PREM-AU is a valid and reliable instrument to measure self-reported care experience in Australian rheumatology patients and may be interpreted as an average overall numerical score.
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BACKGROUND: The Outcome Measures in Rheumatology (OMERACT) Glucocorticoid (GC) Impact Working Group has been working to develop a core domain set to measure the impact of GCs on patients living with rheumatic and musculoskeletal diseases. The mandatory domains previously identified for inclusion in all clinical trials measuring the GC effects include infection, bone fragility, mood disturbance, hypertension, diabetes, weight, fatigue, and mortality. Before progressing to instrument selection, the Working Group sought to establish precise definitions of all mandatory domains within the core domain set. METHODS: OMERACT methodology was applied with the use of evidence and consensus-based decision making of all stakeholder groups (patient research partners, health care professionals, clinician researchers, industry members and methodologists) to develop detailed definitions for the broad domain, target domain and domain components, taking into consideration sources of variability that could affect measurement of the domain. The working group synthesized prior qualitative studies, quantitative work, and results from Delphi rounds, to develop a rich definition of 'what' is to be measured. RESULTS: Between 2021 and 2023, the OMERACT Working Group on GC Impact conducted virtual meetings to establish domain definitions. First, we mapped each domain onto an OMERACT Core Area. All domains were primarily represented within the Pathophysiological Manifestations Core Area, except from Fatigue which was primarily Life Impact and Weight which spanned both Core Areas. Sources of variability included cultural factors, age, gender, education level, socioeconomic status, personal experiences, emotional state, and language barriers. The domain definitions will form the foundation for instrument selection and the initial step of domain / concept match and content validity in the OMERACT pillar of 'truth' before moving on to feasibility and discrimination. CONCLUSION: The OMERACT GC Impact Working Group has developed and agreed upon detailed domain definitions for core domains. Future steps of the working group are to select instruments and develop the core outcome measurement set for clinical trials measuring the impact of GC on patients with rheumatic and musculoskeletal diseases.
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Enfermedades Musculoesqueléticas , Enfermedades Reumáticas , Reumatología , Humanos , Consenso , Glucocorticoides/uso terapéutico , Evaluación de Resultado en la Atención de Salud , Enfermedades Reumáticas/tratamiento farmacológicoRESUMEN
OBJECTIVE: Socioeconomic status (SES) influences disease outcomes in rheumatoid arthritis (RA) patients. Differences in medication use may partly explain this association. A scoping review was used to identify research conducted on this topic and determine what knowledge gaps remain. METHODS: Medline, Embase, and PsychInfo were searched from their inception until February 2022 for studies that assessed SES and medication use as an outcome variable. Data was extracted on the use of specific SES measures, medication use, and whether differences in SES variables were associated with differences in medication use. RESULTS: We identified 2,103 studies, of which 81 were selected for inclusion. Included studies originated most frequently from the US (42%); the mean ± SD age of participants was 55.9 ± 6.8 years, and most were female (75%). Studies measured a median of 4 SES variables (interquartile range 3-6), with educational, area-level SES, and income being the most frequent measurements used. Patients' race and/or ethnicity were documented by 34 studies. Studies primarily assessed the likelihood of prescription of disease-modifying antirheumatic drugs or dispensation, medication adherence, or treatment delays. A majority of studies documented at least 1 SES measure associated with a difference in medication use. CONCLUSION: There is some evidence that SES affects use of medications in patients with RA; however, multiple definitions of SES have been utilized, making comparisons between studies difficult. Prospective studies with consistently defined SES will be needed to determine whether differences in medication use accounts for the poorer outcomes experienced by patients of lower SES.
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Antirreumáticos , Artritis Reumatoide , Humanos , Femenino , Persona de Mediana Edad , Masculino , Estudios Prospectivos , Clase Social , Artritis Reumatoide/diagnóstico , Artritis Reumatoide/tratamiento farmacológico , Renta , Antirreumáticos/uso terapéuticoRESUMEN
Objective: People with rheumatic diseases are frequent, long-term attenders of health-care services. Their care experiences are central to improving services. The aim of this study was to explore real-world experiences and priorities of people attending outpatient rheumatology care and those of health-care professionals (HCPs) providing care. Methods: This qualitative study consisted of five semi-structured focus groups. Participants included rheumatology outpatients (n = 16) of two tertiary teaching hospitals and HCPs (n = 14; rheumatologists, rheumatology trainees, physiotherapists, a specialty nurse and a pharmacist). Participants explored priorities when attending outpatient services, real experiences and aspirations for improving future care. Transcripts were coded using inductive and deductive thematic analysis. Results: Seven key themes were identified: smooth flow of technical processes, care coordination, individualized care, information sharing, clinical excellence, patient empowerment and comprehensive care. The findings were aligned conceptually with quality standards in Australia and worldwide. Different sub-themes and prioritization of concerns emerged from patient and HCP subgroups. Highly prioritized themes for patients pertained to processes and technical aspects of care. HCPs focused on themes relating to non-technical aspects of service provision: information sharing, individualization of care, patient advocacy and empowerment. Conclusion: This study captured valuable insights into the current experience of outpatient rheumatology care from the perspective of patients and HCPs. It informs a collective understanding of differing and shared priorities, positives of current care and areas requiring change. Themes derived from the study data can be conceptualized in terms of the process, content and impact of care. Such domains can be measured longitudinally by routine implementation of validated patient-reported experience measures in rheumatology.
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OBJECTIVE: To determine vaccination rates, perceptions, and information sources in people with inflammatory arthritis. METHODS: Participants enrolled in the Australian Rheumatology Association Database were invited to participate in an online questionnaire, conducted in January 2020, prior to the COVID-19 pandemic. Included questions were about vaccination history, modified World Health Organization Vaccination Hesitancy Scale, views of the information sources consulted, the Beliefs About Medicines Questionnaire, education, and the Single-Item Health Literacy Screener. RESULTS: Response rate was 994 of 1498 (66%). The median age of participants was 62 years, with 67% female. Self-reported adherence was 83% for the influenza vaccine. Participants generally expressed positive vaccination views, particularly regarding safety, efficacy, and access. However, only 43% knew which vaccines were recommended for them. Vaccine hesitancy was primarily attributable to uncertainty and a perceived lack of information about which vaccines were recommended. Participants consulted multiple vaccination information sources (median 3, interquartile range 2-7). General practitioners (89%) and rheumatologists (76%) were the most frequently used information sources and were most likely to yield positive views. Negative views of vaccination were most often from internet chatrooms, social media, and mainstream media. Factors of younger age, male gender, and having more concerns about the harms and overuse of medicines in general were associated with lower adherence and greater uncertainty about vaccinations, whereas education and self-reported literacy were not. CONCLUSION: Participants with inflammatory arthritis generally held positive views about vaccination, although there was considerable uncertainty as to which vaccinations were recommended for them. This study highlights the need for improved consumer information about vaccination recommendations for people with inflammatory arthritis.
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OBJECTIVE: To determine distinct trajectories of self-reported pain-related health status in rheumatoid arthritis (RA), their relationship with sociodemographic factors and medication use. METHODS: 988 Australian Rheumatology Association Database participants with RA (71% female, mean age 54 years, mean disease duration 2.3 years) were included. Distinct multi-trajectories over 15-year follow-up for five different self-reported pain-related health outcome measures (Health Assessment Questionnaire Disability Index, visual analogue scores for pain, arthritis, global health and the Assessment of Quality of Life utility index) were identified using latent variable discrete mixture modelling. Random effects models were used to determine associations with medication use and biologic therapy modification during follow-up. RESULTS: Four, approximately equally sized, pain/health status groups were identified, ranging from 'better' to 'poorer', within which changes over time were relatively small. Important determinants of those with poorer pain/health status included female gender, obesity, smoking, socioeconomic indicators and comorbidities. While biologic therapy use was similar between groups during follow-up, biologic therapy modifications (plinear<0.001) and greater tendency of non-tumour necrosis factor inhibitor use (plinear<0.001) were observed in those with poorer pain/health status. Similarly, greater use of opioids, prednisolone and non-steroidal anti-inflammatory drugs was seen in those with poorer pain/health status. CONCLUSION: In the absence of disease activity information, distinct trajectories of varying pain/health status were seen from the outset and throughout the disease course in this RA cohort. More biologic therapy modifications and greater use in anti-inflammatories, opioids and prednisolone were seen in those with poorer pain/health status, reflecting undesirable lived experience of persistent pain in RA.
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Antirreumáticos , Artritis Reumatoide , Reumatología , Humanos , Femenino , Persona de Mediana Edad , Masculino , Autoinforme , Estudios Prospectivos , Calidad de Vida , Analgésicos Opioides , Antirreumáticos/uso terapéutico , Australia/epidemiología , Artritis Reumatoide/complicaciones , Artritis Reumatoide/tratamiento farmacológico , Artritis Reumatoide/epidemiología , Estudios de Cohortes , Dolor/tratamiento farmacológico , Dolor/epidemiología , Dolor/etiología , Prednisolona/uso terapéutico , Evaluación de Resultado en la Atención de SaludRESUMEN
Objective: To determine the incidence of biopsy proven giant cell arteritis (GCA) in South Australia. Methods: Patients with biopsy-proven GCA were identified from pathology reports of temporal artery biopsies at state-based pathology laboratories, from 1 January 2014 to 31 December 2020. Incidence rates for biopsy-proven GCA were calculated using Australian Bureau of Statistics data for South Australian population sizes by age, sex, and calendar year. Seasonality was analyzed by cosinor analysis. Results: There were 181 cases of biopsy-proven GCA. The median age at diagnosis of GCA was 76 years (IQR 70, 81), 64% were female. The estimated population incidence for people over 50 was 5.4 (95% CI 4.7, 6.1) per 100,000-person years. The female: male incidence ratio was 1.6 (95% CI 1.2, 2.2). There was no ordinal trend in GCA incidence rates by calendar year (p = 0.29). The incidence was, on average, highest in winter, but not significantly (p = 0.35). A cosinor analysis indicated no seasonal effect (p = 0.52). Conclusion: The incidence of biopsy-proven GCA remains low in Australia. A higher incidence was noted compared to an earlier study. However, differences in ascertainment and methods of GCA diagnosis may have accounted for the change.
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OBJECTIVE: To provide the best clinical practice guidance for surfactant use in preterm neonates with respiratory distress syndrome (RDS). The RDS-Neonatal Expert Taskforce (RDS-NExT) initiative was intended to add to existing evidence and clinical guidelines, where evidence is lacking, with input from an expert panel. STUDY DESIGN: An expert panel of healthcare providers specializing in neonatal intensive care was convened and administered a survey questionnaire, followed by 3 virtual workshops. A modified Delphi method was used to obtain consensus around topics in surfactant use in neonatal RDS. RESULT: Statements focused on establishing RDS diagnosis and indicators for surfactant administration, surfactant administration methods and techniques, and other considerations. After discussion and voting, consensus was achieved on 20 statements. CONCLUSION: These consensus statements provide practical guidance for surfactant administration in preterm neonates with RDS, with a goal to contribute to improving the care of neonates and providing a stimulus for further investigation to bridge existing knowledge gaps.
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Surfactantes Pulmonares , Síndrome de Dificultad Respiratoria del Recién Nacido , Recién Nacido , Humanos , Recien Nacido Prematuro , Tensoactivos/uso terapéutico , Síndrome de Dificultad Respiratoria del Recién Nacido/tratamiento farmacológico , Surfactantes Pulmonares/uso terapéutico , Cuidado Intensivo NeonatalRESUMEN
New and effective treatment for acute kidney injury remains a challenge. Here, we induced mouse hematopoietic stem and progenitor cells (HSPC) to differentiate into cells that partially resemble a renal cell phenotype and tested their therapeutic potential. We sequentially treated HSPC with a combination of protein factors for 1 wk to generate a large number of cells that expressed renal developmentally regulated genes and protein. Cell fate conversion was associated with increased histone acetylation on promoters of renal-related genes. Further treatment of the cells with a histone deacetylase inhibitor improved the efficiency of cell conversion by sixfold. Treated cells formed tubular structures in three-dimensional cultures and were integrated into tubules of embryonic kidney organ cultures. When injected under the renal capsule, they integrated into renal tubules of postischemic kidneys and expressed the epithelial marker E-cadherin. No teratoma formation was detected 2 and 6 mo after cell injection, supporting the safety of using these cells. Furthermore, intravenous injection of the cells into mice with renal ischemic injury improved kidney function and morphology by increasing endogenous renal repair and decreasing tubular cell death. The cells produced biologically effective concentrations of renotrophic factors including VEGF, IGF-1, and HGF to stimulate epithelial proliferation and tubular repair. Our study indicates that hematopoietic stem and progenitor cells can be converted to a large number of renal-like cells within a short period for potential treatment of acute kidney injury.
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Lesión Renal Aguda/terapia , Trasplante de Células Madre Hematopoyéticas , Túbulos Renales/fisiología , Acetilación , Animales , Diferenciación Celular/efectos de los fármacos , Diferenciación Celular/fisiología , Factor de Crecimiento Epidérmico/farmacología , Femenino , Factor de Crecimiento de Hepatocito/sangre , Factor de Crecimiento de Hepatocito/farmacología , Histonas/metabolismo , Ácidos Hidroxámicos/farmacología , Factor I del Crecimiento Similar a la Insulina/farmacología , Túbulos Renales/citología , Masculino , Ratones , Cultivo Primario de Células , Factor A de Crecimiento Endotelial Vascular/sangreRESUMEN
INTRODUCTION: Despite clinical advances in neonatal and paediatric palliative care, there is limited educational provision to underpin practice. To develop appropriate educational content, the needs of staff working in this area must be identified. AIM: To explore the educational needs of staff working with families with palliative or end-of-life care requirements. METHODS: A training needs analysis (TNA) explored the perceived knowledge, confidence, and support of neonatal and paediatric health professionals in a tertiary children's hospital in London. RESULTS: An online Likert scale TNA was completed by 111 participants. The results indicated that the staff did not feel educationally prepared in their working areas, despite having regular contact with families with palliative or end-of-life care issues. DISCUSSION: Understanding the educational needs of staff can underpin the development of appropriate educational interventions. These modules require evaluation to determine their impact on health professionals' knowledge and confidence.