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The function and phenotype of γδ T cells in the context of common variable immunodeficiency (CVID) has not been explored. CVID is a primary immunodeficiency disorder characterized by impaired antibody responses resulting in increased susceptibility to infections. γδ T cells are a subset of unconventional T cells that play crucial roles in host defence against infections. In this study, we aim to determine the roles and functions of γδ T cells in CVID. We observe a higher frequency of Vδ1+ γδ T cells compared to healthy controls, particularly in older patients. We also find a higher proportion of effector-memory Vδ1+ γδ T cells and a more clonal T cell receptor (TCR) repertoire in CVID. The most significant driver of the Vδ1+ γδ T cell expansion and phenotype in CVID patients is persistent cytomegalovirus (CMV) viremia. These findings provide valuable insights into γδ T cell biology and their contribution to immune defence in CVID.
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Inmunodeficiencia Variable Común , Infecciones por Citomegalovirus , Citomegalovirus , Receptores de Antígenos de Linfocitos T gamma-delta , Humanos , Inmunodeficiencia Variable Común/inmunología , Inmunodeficiencia Variable Común/virología , Receptores de Antígenos de Linfocitos T gamma-delta/metabolismo , Receptores de Antígenos de Linfocitos T gamma-delta/inmunología , Masculino , Femenino , Infecciones por Citomegalovirus/inmunología , Infecciones por Citomegalovirus/virología , Adulto , Citomegalovirus/inmunología , Persona de Mediana Edad , Anciano , Adulto Joven , Subgrupos de Linfocitos T/inmunología , Viremia/inmunología , Adolescente , Estudios de Casos y ControlesRESUMEN
BACKGROUND: The CDC and ACIP recommend COVID-19 vaccination for patients with inborn errors of immunity (IEI). Not much is known about vaccine safety in IEI, and whether vaccination attenuates infection severity in IEI. OBJECTIVE: To estimate COVID-19 vaccination safety and examine effect on outcomes in patients with IEI. METHODS: We built a secure registry database in conjunction with the US Immunodeficiency Network to examine vaccination frequency and indicators of safety and effectiveness in IEI patients. The registry opened on January 1, 2022, and closed on August 19, 2022. RESULTS: Physicians entered data on 1245 patients from 24 countries. The most common diagnoses were antibody deficiencies (63.7%). At least one COVID-19 vaccine was administered to 806 patients (64.7%), and 216 patients received vaccination prior to the development of COVID-19. The most common vaccines administered were mRNA-based (84.0%). Seventeen patients were reported to seek outpatient clinic or emergency room care for a vaccine-related complication, and one patient was hospitalized for symptomatic anemia. Eight hundred twenty-three patients (66.1%) experienced COVID-19 infection. Of these, 156 patients required hospitalization (19.0%), 47 required ICU care (5.7%), and 28 died (3.4%). Rates of hospitalization (9.3% versus 24.4%, p < 0.001), ICU admission (2.8% versus 7.6%, p = 0.013), and death (2.3% versus 4.3%, p = 0.202) in patients who had COVID-19 were lower in patients who received vaccination prior to infection. In adjusted logistic regression analysis, not having at least one COVID-19 vaccine significantly increased the odds of hospitalization and ICU admission. CONCLUSION: Vaccination for COVID-19 in the IEI population appears safe and attenuates COVID-19 severity.
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COVID-19 , Humanos , COVID-19/epidemiología , Vacunas contra la COVID-19/efectos adversos , Vacunación , Hospitalización , Cuidados CríticosRESUMEN
Background: Reported outcomes in patients with primary immunodeficiency (PID) infected by coronavirus disease 2019 (COVID-19) have been variable owing to a combination of viral strain heterogeneity, differences in patient populations and health systems, and local availability of vaccination and specific COVID-19 therapies. There are few reports on the experience of Australian patients with PID during the pandemic. Objectives: In this retrospective study, we describe the baseline characteristics and short-term outcomes of patients with PID who were infected by COVID-19 and known to the Royal Melbourne Hospital, a major tertiary center in Victoria, Australia. Methods: Between April 2021 and April 2022, a total of 31 of 138 patients with PID were affected by COVID-19. More than half of them had 3 vaccine doses at the time of infection (which at the time was considered being fully vaccinated) and received COVID-19-targeted treatment. Results: All of the infected patients had ambulatory disease, with no cases of morbidity or mortality. In line with the current literature, the PID subtypes described did not appear to independently predict worse outcomes. Conclusions: Some protective factors include this cohort's relatively younger average age and its high uptake of vaccination and COVID-19 therapies.
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Respiratory problems are a major cause of morbidity and mortality in patients with congenital myasthenic syndromes, a rare heterogeneous group of neuromuscular disorders caused by genetic defects impacting the structure and function of the neuromuscular junction. Recurrent, life-threatening episodic apnoea in early infancy and childhood and progressive respiratory failure requiring ventilation are features of certain genotypes of congenital myasthenic syndromes. Robb et al. published empirical guidance on respiratory management of the congenital myasthenic syndromes, but other than this workshop report, there are little published longitudinal natural history data on respiratory outcomes of these disorders. We report a retrospective, single-centre study on respiratory outcomes in a cohort of 40 well characterized genetically confirmed cases of congenital myasthenic syndromes, including 10 distinct subtypes (DOK7, COLQ, RAPSN, CHAT, CHRNA1, CHRNG, COL13A1, CHRNE, CHRNE fast channel syndrome and CHRNA1 slow channel syndrome), with many followed up over 20 years in our centre. A quantitative and longitudinal analysis of key spirometry and sleep study parameters, as well as a description of historical hospital admissions for respiratory decompensation, provides a snapshot of the respiratory trajectory of congenital myasthenic syndrome patients based on genotype.
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Textured silicone breast implants with high average surface roughness ("macrotextured") have been associated with a rare cancer of the immune system, Breast Implant-Associated Anaplastic Large Cell Lymphoma (BIA-ALCL). Silicone elastomer wear debris may lead to chronic inflammation, a key step in the development of this cancer. Here, we model the generation and release of silicone wear debris in the case of a folded implant-implant ("shell-shell") sliding interface for three different types of implants, characterized by their surface roughness. The "smooth" implant shell with the lowest average surface roughness tested (Ra = 2.7 ± 0.6 µm) resulted in average friction coefficients of µavg = 0.46 ± 0.11 across 1,000 mm of sliding distance and generated 1,304 particles with an average particle diameter of Davg = 8.3 ± 13.1 µm. The "microtextured" implant shell (Ra = 32 ± 7.0 µm) exhibited µavg = 1.20 ± 0.10 and generated 2,730 particles with Davg = 4.7 ± 9.1 µm. The "macrotextured" implant shell (Ra = 80 ± 10 µm) exhibited the highest friction coefficients, µavg = 2.82 ± 0.15 and the greatest number of wear debris particles, 11,699, with an average particle size of Davg = 5.3 ± 3.3 µm. Our data may provide guidance for the design of silicone breast implants with lower surface roughness, lower friction, and smaller quantities of wear debris.
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INTRODUCTION: Transitional-aged youth (TAY) with mental health and/or addictions (MHA) concerns and their families experience significant challenges finding, accessing, and transitioning through needed MHA care. To develop appropriate supports that assist TAY and their families in navigating MHA care, their experiences of transitions in the MHA care system must be better understood. This scoping review identifies and explores the needs, barriers, and facilitators for TAY and their families when transitioning through MHA care. METHODS: This scoping review commenced with a search of five relevant databases. Three research team members were involved in title, abstract, and full-text scanning and data extraction. Sources focusing on TAY anywhere between the ages of 12-29 years and meeting the study objectives were included. Extractions compiled background and narrative information about the nature and extent of the data. Analysis and synthesis of findings involved numerical description of the general information extracted (e.g., numbers of sources by country) and thematic analysis of narrative information extracted (e.g., family involvement in TAY help-seeking). RESULTS: A total of 5894 sources were identified. Following title and abstract scanning, 1037 sources remained for full-text review. A total of 66 sources were extracted. Findings include background information about extracted sources, in addition to five themes that emerged pertaining to barriers and facilitators to access and transitions through care and the needs and roles of TAY and families in supporting help-seeking and care transitions: holistic supports, proactive preparation, empowering TAY and families, collaborative relationships, and systemic considerations. These five themes demonstrate approaches to care that can ensure TAY and families' needs are met, barriers are mitigated, and facilitators are enhanced. CONCLUSION: This review provides essential contextual information regarding TAY with MHA concerns and their families' needs when seeking care. Such findings lend to an enhanced understanding of how MHA programs can support this population's needs, involve family members as appropriate, reduce the barriers experienced, and work to build upon existing facilitators.
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Conducta Adictiva , Servicios de Salud Mental , Humanos , Adolescente , Anciano , Niño , Adulto Joven , Adulto , Salud Mental , Conducta Adictiva/terapia , FamiliaRESUMEN
Background: It is estimated that 1.2 million Canadian youth are affected by mental health and/or addiction issues; yet only a small proportion of young people receive appropriate and specialized treatment. Given caregivers are often tasked with navigating the complex mental health and/or addiction care systems for their youth, it is important to identify and understand the characteristics, such as those related to youth and their families, that are associated with caregivers' perceived barriers to accessing youth mental health and/or addiction services. Objective: The objective of this cross-sectional survey study was to examine the unique predictors of caregivers' perceived barriers to accessing youth mental health and/or addiction services. Method: Participants were 259 caregivers of at least one youth, aged 4 to 29 years (M age = 16.7, SD = 5.3) with mental health and/or addiction issues in Ontario, Canada identified from a community-based online survey. Results: Regression results showed that caregivers' demographics (i.e., living in a rural area, having an education level of college/university degree or higher), youth having concurrent issues, and service use patterns (i.e., currently accessing and/or seeking services) significantly predicted a higher level of barriers to accessing mental health and/or addiction services. Conclusion: In order to improve access to care for youth with mental health and/or addiction issues, understanding the predictors of barriers to accessing appropriate services is an important step in making services more accessible for youth and families.
Contexte: On estime à 1,2 million le nombre de jeunes canadiens qui sont affectés par des problèmes de santé mentale et/ou de dépendance; et pourtant, seule une petite proportion de jeunes gens reçoit un traitement approprié et spécialisé. Étant donné que les soignants sont souvent chargés de naviguer dans les systèmes de soins complexes de santé mentale et/ou de dépendance pour leurs jeunes, il est important d'identifier et de comprendre les caractéristiques, comme celles qui sont liées aux jeunes et à leur famille, qui sont associées aux obstacles perçus par les soignants à l'accès aux services des jeunes en santé mentale et/ou dépendance. Objectif: L'objectif de la présente étude par sondage transversal était d'examiner les prédicteurs uniques des obstacles perçus par les soignants à l'accès aux services des jeunes en santé mentale et/ou dépendance. Méthode: Les participants étaient 259 soignants d'au moins un jeune âgé de 4 à 29 ans (M âge = 16,7, ET = 5,3) avec au moins des problèmes de santé mentale et/ou de dépendance en Ontario, Canada, identifiés depuis un sondage en ligne communautaire. Résultats: Les résultats de la régression ont montré que les données démographiques des soignants (c.-à-d., vivre en milieu rural, avoir un niveau d'instruction de diplôme collégial/universitaire ou mieux) des jeunes ayant des problèmes concurrents, et des modèles d'utilisation des services (c.-à-d., accéder et ou rechercher des services présentement prédisait significativement un niveau plus élevé d'obstacles à l'accès aux services de santé mentale et/ou de dépendance. Conclusion: Afin d'améliorer l'accès aux soins pour les jeunes ayant des problèmes de santé mentale et/ou de dépendance, comprendre les prédicteurs des obstacles à l'accès aux services appropriés est une étape importante pour rendre les services plus accessibles aux jeunes et aux familles.
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OBJECTIVE: To gain an understanding of the views of school-aged children with epilepsy, their parents, and school staff regarding the impact of epilepsy on sleep. METHODS: As part of the What I Need in School (WINS) study, school-aged children (n = 18) with 'active epilepsy' (taking Anti-Seizure Medications, ASMs, for epilepsy), their parents (n = 68) and school staff (n = 56) were interviewed or completed bespoke questionnaires. Questions focussed on the potential impact of epilepsy on the child's sleep or tiredness in school and the potential impact of sleep/tiredness on learning and behavior. RESULTS: Fifty-six percent of children believed that epilepsy affects their sleep while 65% of parents believed that their child had more difficulties with sleep than other children of their age. Seventy-eight percent of parents believed that their child's difficulties were due to epilepsy and 95% believed that their child's difficulties impacted their learning and behavior. Fifty-four percent of school staff believed that the child with epilepsy they supported was more tired/fatigued than their peers, and 86% of school staff believed that the child's increased tiredness affected their learning/behavior. Parents of children with intellectual disabilitiy were significantly more likely to indicate that they felt that their child had more sleep difficulties than other children (p = 0.016). Regarding the impact on their sleep, participating children felt that epilepsy contributed to difficulties in falling and staying asleep and daytime tiredness. Their parents reported a range of potential sleep difficulties and potential impacts on the child's learning and behavior. Parental reported difficulties included daytime tiredness, difficulty falling and staying asleep, and the impact of nocturnal seizures. In terms of impact, parents felt that sleep difficulties impacted negatively cognition and emotional-behavioral functioning. Additionally, parents reported that ASMs and medication for ADHD can contribute to sleep difficulties. School staff felt that many of the children appeared tired/fatigued during the day and this could lead to less engagement with classroom activities, impact attention and processing speed negatively, and contribute to behavioral and emotional difficulties. CONCLUSION: The majority of children and parents who responded believed that epilepsy affects the child's sleep. Most parents and school staff also believed that the child's sleep difficulties/excess tiredness were due to the child's epilepsy and that the difficulties significantly impacted the child's learning and behavior. There is a need to better understand the role epilepsy plays in sleep difficulties and associated learning and behavioral impairments. There is also a need to develop interventions to reduce the subsequent impact on child learning and behavior.
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Epilepsia , Trastornos del Sueño-Vigilia , Humanos , Niño , Padres/psicología , Epilepsia/complicaciones , Epilepsia/psicología , Sueño , Instituciones Académicas , Trastornos del Sueño-Vigilia/etiología , Encuestas y CuestionariosRESUMEN
AIM: To investigate the link between sleep disruption and cognitive impairment in childhood epilepsy by studying the effect of epilepsy on sleep homeostasis, as reflected in slow-wave activity (SWA). METHOD: We examined SWA from overnight EEG-polysomnography in 19 children with focal epilepsy (mean [SD] age 11 years 6 months [3 years], range 6 years 6 months-15 years 6 months; 6 females, 13 males) and 18 age- and sex-matched typically developing controls, correlating this with contemporaneous memory consolidation task scores, full-scale IQ, seizures, and focal interictal discharges. RESULTS: Children with epilepsy did not differ significantly from controls in overnight SWA decline (p = 0.12) or gain in memory performance with sleep (p = 0.27). SWA was lower in patients compared to controls in the first hour of non-rapid eye movement sleep (p = 0.021), although not in those who remained seizure-free (p = 0.26). Full-scale IQ did not correlate with measures of SWA in patients or controls. There was no significant difference in SWA measures between focal and non-focal electrodes. INTERPRETATION: Overnight SWA decline is conserved in children with focal epilepsy and may underpin the preservation of sleep-related memory consolidation in this patient group. Reduced early-night SWA may reflect impaired or immature sleep homeostasis in those with a higher seizure burden. WHAT THIS PAPER ADDS: The decline in slow-wave activity (SWA) across the night, reflecting global synaptic downscaling, was preserved in children with focal lesional epilepsies. Sleep benefited memory consolidation in this group of patients, as in typically developing children. Reduced early-night SWA was associated with increased likelihood of a subsequent seizure.
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Epilepsias Parciales , Epilepsia , Masculino , Femenino , Humanos , Niño , Lactante , Electroencefalografía , Epilepsias Parciales/complicaciones , Epilepsias Parciales/psicología , Convulsiones/complicaciones , Sueño , Epilepsia/complicaciones , Cognición , HomeostasisAsunto(s)
Hipersensibilidad a la Leche , Animales , Cabras , Humanos , Leche/efectos adversos , Proteínas de la LecheRESUMEN
BACKGROUND: Common Variable Immunodeficiency (CVID) is classified as a 'Predominantly Antibody Deficiency' (PAD), but there is emerging evidence of cellular immunodeficiency in a subset of patients. This evidence includes CVID patients diagnosed with cytomegalovirus (CMV) infection, a hallmark of 'combined immunodeficiency'. CMV infection also has the potential to drive immune dysregulation contributing to significant morbidity and mortality in CVID. We aim to determine the extent of cellular immune dysfunction in CVID patients, and whether this correlates with CMV infection status. METHODS: We conducted a single-center retrospective cohort study of individuals with CVID at the Royal Melbourne Hospital, and identified patients with and without CMV disease or viraemia. We then isolated T-cells from patient and healthy donor blood samples and examined T-cell proliferation and function. RESULTS: Six patients (7.6%, 6/79) had either CMV disease (pneumonitis or gastrointestinal disease), or symptomatic CMV viraemia. A high mortality rate in the cohort of patients with CVID and CMV disease was observed, with 4 deaths in the period of analysis (66.6%, 4/6). Individuals with CMV infection showed reduced T-cell division in response to T-cell receptor (TCR) stimulation when compared with CMV-negative patients. DISCUSSION: This study demonstrates the morbidity and mortality associated with CMV in CVID, and highlights the need for focused interventions for patients with CVID at risk of CMV disease.
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Inmunodeficiencia Variable Común , Infecciones por Citomegalovirus , Enfermedades de Inmunodeficiencia Primaria , Citomegalovirus , Humanos , Morbilidad , Estudios Retrospectivos , Viremia/complicacionesRESUMEN
BACKGROUND: Asthma epidemics associated with thunderstorms have had catastrophic effects on individuals and emergency services. Seasonal allergic rhinitis (SAR) is present in the vast majority of people who develop thunderstorm asthma (TA), but there is little evidence regarding risk factors for TA among the SAR population. OBJECTIVE: We sought to identify risk factors for a history of TA and hospital presentation in a cohort of individuals with SAR. METHODS: This multicenter study recruited adults from Melbourne, Australia, with a past diagnosis of TA and/or self-reported SAR. Clinical information, spirometry results, white blood cell count, ryegrass pollen-specific (RGP-sp) IgE concentration, and fractional exhaled nitric oxide were measured to identify risk factors for a history of TA in individuals with SAR. RESULTS: From a total of 228 individuals with SAR, 35% (80 of 228) reported SAR only (the I-SAR group), 37% (84 of 228) reported TA symptoms but had not attended hospital for treatment (the O-TA group), and 28% (64 of 228) had presented to the hospital for TA (the H-TA group). All patients in the H-TA group reported a previous asthma diagnosis. Logistic regression analysis of factors associated with O-TA and H-TA indicated that lower FEV1 value and an Asthma Control Questionnaire score higher than 1.5 were associated with H-TA. Higher blood RGP-sp IgE concentration, eosinophil counts, and fractional exhaled nitric oxide level were significantly associated with both O-TA and H-TA. Receiver operating curve analysis showed an RGP-sp IgE concentration higher than 10.1 kU/L and a prebronchodilator FEV1 value of 90% or lower to be biomarkers of increased H-TA risk. CONCLUSION: Clinical tests can identify risk of a history of TA in individuals with SAR and thereby inform patient-specific treatment recommendations.
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Asma , Rinitis Alérgica Estacional , Adulto , Alérgenos , Asma/diagnóstico , Humanos , Inmunoglobulina E , Polen , Rinitis Alérgica Estacional/complicacionesRESUMEN
Interest in navigation services in the mental health and/or addiction (MHA) sphere has grown over the past decade. However, little is known about the value of caregiver peer support in enhancing the navigation process. The Parent Advocate with Lived experience (PAL) service at the Family Navigation Project (FNP) provides peer support to caregivers supporting youth with MHA concerns. Caregivers (n = 26) were asked to rate their perceptions of their caregiver experience retrospectively and then 7 weeks following contact with FNP. A repeated-measures MANOVA comparing participants who had and had not accessed PAL services demonstrated a significant main effect of time, (F(15, 8) = 5.82, p = .008, [Formula: see text] = .916), and a significant time-by-group interaction, (F(15, 8) = 3.69, p = .034, [Formula: see text] = .874), signifying participants who accessed PAL services had more positive perceptions about their caregiving experience compared to participants who had not accessed PAL service. These findings support the future development of caregiver peer support roles within MHA services.
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Cuidadores , Salud Mental , Adolescente , Cuidadores/psicología , Humanos , Grupo Paritario , Percepción , Estudios RetrospectivosRESUMEN
PURPOSE OF REVIEW: Cytomegalovirus (CMV) infection and disease are well described in the setting of secondary immunodeficiency. Less is known about CMV in the context of primary immunodeficiencies (PIDs), where inborn errors in one or more arms of the immune system result in variable degrees of CMV susceptibility. RECENT FINDINGS: PID presents unique challenges in the diagnosis and management of CMV disease. The clinical presentation of CMV in PID is often severe, accelerated by underlying immune dysregulation and iatrogenic immunosuppression. Here we describe the clinical significance of CMV infection in PID, the key components of immune defence against CMV and how these are affected in specific PIDs. CMV disease is under-recognized as a complication of common variable immunodeficiency (CVID). High rates of CMV end-organ disease, mortality, development of CMV resistance and prolonged antiviral use have been observed in individuals with CVID. SUMMARY: We recommend that clinicians tailor their approach to the individual based on their underlying immune deficit and maintain a high index of suspicion and low threshold for treatment. More research is required to improve stratification of CMV risk in PID, develop new diagnostic tools and manage end-organ disease in this cohort.
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Infecciones por Citomegalovirus , Enfermedades de Inmunodeficiencia Primaria , Antivirales/uso terapéutico , Citomegalovirus , Infecciones por Citomegalovirus/tratamiento farmacológico , HumanosRESUMEN
Epidemic thunderstorm asthma (ETSA) occurs following a thunderstorm due to the interaction of environmental and immunologic factors. Whilst first reported in the 1980s, the world's largest event in Melbourne, Australia, on November 21, 2016 has led to a wealth of clinical literature seeking to identify its mechanisms, susceptibility risk factors, and management approaches. Thunderstorm asthma (TA) typically presents during an aeroallergen season in individuals sensitized to perennial rye grass pollen (RGP) in Australia, or fungus in the United Kingdom, in combination with meteorological factors such as thunderstorms and lightning activity. It is now well recognized that large pollen grains, which usually lodge in the upper airway causing seasonal allergic rhinitis (SAR), are ruptured during these events, leading to sub-pollen particles respirable to the lower respiratory tract causing acute asthma. The identified risk factors of aeroallergen sensitization, specifically to RGP in Australians with a history of SAR, and individuals born in Australia of South-East Asian descent as a risk factor for TA has been key in selecting appropriate patients for preventative management. Moreover, severity-determining risk factors for ETSA-related asthma admission or mortality, including pre-existing asthma or prior hospitalization, poor inhaled corticosteroid adherence, and outdoor location at the time of the storm are important in identifying those who may require more aggressive treatment approaches. Basic treatments include optimizing asthma control and adherence to inhaled corticosteroid therapy, treatment of SAR, and education regarding TA to increase recognition of at-risk days. Precision treatment approaches may be more beneficial in select individuals, including the use of allergen immunotherapy and even biologic treatment to mitigate asthma severity. Finally, we discuss the importance of environmental health literacy in the context of concerns surrounding the increased frequency of ETSA due to climate change and its implications for the frequency and severity of future events.
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PURPOSE: The lesbian, gay, bisexual, trans, queer, two-spirit, pansexual, intersex, asexual, plus (LGBTQ2SPIA+) population faces unique cancer health risks and barriers to competent healthcare. This study aimed to identify current knowledge, attitudes, and practice behaviours amongst radiation therapists regarding the LGBTQ2SPIA+ community to ultimately improve care given to this population. METHODS: A 22-item online survey was sent out to Canadian radiation therapy department managers and forwarded to radiation therapists. The survey collected demographics and addressed knowledge, attitudes, and practice behaviours regarding the LGBTQ2SPIA+ population. Results were analyzed using descriptive statistics, inferential statistics and thematic analysis. RESULTS: 214 radiation therapists completed the survey. Over 70% were unfamiliar with all terms associated with "LGBTQ2SPIA+". 91.6% believed that being conscious of the LGBTQ2SPIA+ community is important to their role as a therapist; however, 34.5% reported "rarely" or "never" adapting practice behaviours when caring for this community. Only 17.3% felt they had received adequate information to comfortably care for the LGBTQ2SPIA+ population, with 86.9% interested in receiving more education on specific patient needs. The open-ended questions revealed four themes: uncertainty regarding knowledge of the LGBTQ2SPIA+ community; willingness and/or desire to improve practice behaviours; therapists are already aware of some unique needs of the LGBTQ2SPIA+ community; and some therapists believe that all patients should be treated equally. National generalizability is limited due to insufficient data collected from all geographical regions. CONCLUSION: Overall, this study was unable to provide national generalizability, however the results suggest that amongst the respondents there are knowledge gaps and inconsistencies in practice when caring for LGBTQ2SPIA+ cancer patients. Given the limited literature available, and the results from this study, more education and research is warranted to bridge knowledge gaps and aid in providing inclusive patient care.
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Técnicos Medios en Salud/psicología , Actitud del Personal de Salud , Radioterapia , Minorías Sexuales y de Género , Adulto , Canadá , Femenino , Humanos , Masculino , Encuestas y CuestionariosRESUMEN
BACKGROUND: Caregivers experience significant strains as a result of navigating the complex mental health and/or addiction (MHA) system for their youth with MHA issues. We examined the characteristics of Ontario families with youth with MHA issues and their service needs. METHODS: A cross-sectional survey study investigated the characteristics and service needs of families with youth with MHA issues across the province of Ontario, Canada. A total of 840 caregivers were recruited. RESULTS: 259 participants (Mage = 45.94, SD = 7.11) identified as caregiving for at least one youth with MHA issues. The majority of the participants were female (70.7%), married (73.4%), and completed at least some college/Bachelor degree (59.1%). The mean age of youth was 16.72 years (SD = 5.33) and the most frequently reported diagnoses were Depression (30.1%), ADHD (27.8%) and Generalized Anxiety Disorder (21.2%). Regression results demonstrated that presently accessing services, presently seeking services, and higher levels of barriers MHA services were significantly predictive of identifying navigation as helpful for finding appropriate MHA services (χ2(7) = 28.69, p < .001, Nagelkerke R2 = .16). Furthermore, presently accessing services was significantly predictive of identifying case management as helpful (χ2(7) = 29.59, p < .001, Nagelkerke R2 = .156), and of identifying a primary healthcare provider as helpful (χ2(7) = 38.75, p < .001, Nagelkerke R2 = .197) for finding appropriate MHA services. CONCLUSION: Identifying the nature and extent of youth MHA issues, service needs, and family preferences can inform the development of services that address families' needs and lend vital support for accessing services within a complex system.