Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 301
Filtrar
1.
Semin Arthritis Rheum ; 68: 152520, 2024 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-39106780

RESUMEN

BACKGROUND: Since the development of the OMERACT Systemic Lupus Erythematosus (SLE) Core Outcome Set (COS) in 1998, many new SLE domains have been identified and measures developed, creating a need to update the SLE COS. To revisit the 1998 SLE COS and research agenda domains, and generate new candidate domains, we conducted this study of patients with SLE and collaborators. OBJECTIVE: (1) To evaluate existing candidate SLE domains for inclusion in the SLE COS. (2) To generate additional candidate SLE domains for COS consideration. (3) To engage SLE collaborators, including patients, in developing the updated SLE COS. METHODS: The OMERACT SLE Working Group's steering committee developed a survey to assess the importance of candidate SLE domains and generate additional domains for consideration towards the SLE COS. Patients with SLE followed at the University of Toronto Lupus Clinic (patient group) and members of the OMERACT SLE Working Group (collaborator group) were invited to complete the survey between August 2022 and February 2023. RESULTS: A total of 175 patients were invited and 100 completed the survey. Of 178 collaborators invited, 145 completed the survey. Patients tended to prioritize life-impact domains while collaborators prioritized clinical domains. Both patients and collaborators recommended additional domains to those included in the 1998 SLE COS and research agenda. CONCLUSION: The domain inclusion and importance results demonstrate that patients and collaborators prioritize different domains, so capturing the perspectives of both groups is essential to ensure a holistic assessment of SLE. The results of the study identify domains that already have a high level of agreement for potential inclusion in the SLE COS, domains that require further explanation, and novel domains that warrant consideration.


Asunto(s)
Lupus Eritematoso Sistémico , Humanos , Femenino , Masculino , Adulto , Persona de Mediana Edad , Encuestas y Cuestionarios , Calidad de Vida , Índice de Severidad de la Enfermedad
2.
Lupus ; 33(10): 1043-1058, 2024 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-39045728

RESUMEN

OBJECTIVE: Substantial morbidity and mortality affect those with antiphospholipid antibodies (aPLs) and antiphospholipid syndrome (APS), yet patient experiences remain poorly understood. This research investigated patient experiences of aPL/APS diagnosis; effects on daily life; and healthcare and treatment. METHODS: Patients aged ≥18 years with APS per the Revised Sapporo criteria or with ≥1 positive aPL on ≥2 occasions were recruited from a Canadian multidisciplinary APS clinic to participate in semi-structured in-depth interviews. Interviews were conducted virtually and transcribed verbatim for subsequent thematic analysis. RESULTS: Twenty-one patients with aPLs/APS participated; 95.2% were female, mean (SD) age was 45.6 (15.0) years. Most (71.4%) had APS, and 71.4% had aPLs/APS with SLE. Results are presented around patient experiences of aPL/APS diagnosis, effects on daily life, and healthcare and treatment. Participants described medical complications/physical symptoms and the healthcare, lifestyle, and emotional impacts experienced around the time of aPLs/APS diagnosis. In addition to the physical and psychosocial impacts of living with aPLs/APS, patients reported modified leisure activities, altered employment trajectories, and positive and negative impacts on relationships. Impacts on family planning were also a critical component of the aPL/APS lived experience; participants shared experiences of miscarriage, other pregnancy complications, and medication-related challenges (e.g., with low-molecular-weight heparin injections). Challenging aspects of aPL/APS healthcare and treatment were also discussed, particularly related to the lifestyle, physical, and emotional burden of medication use. Although a lack of resources was described, participants expressed trust in healthcare providers when making management decisions or when seeking information. Suggestions for resources included the need for additional medication-related information, examples to help contextualize management behaviours, and additional information for those with aPLs/APS without SLE. CONCLUSION: Patients highlighted how the diverse manifestations of aPLs/APS, accentuated by management-related challenges, impose considerable physical and psychosocial burdens. Results will inform the development of patient resources aligned with patient priorities.


Asunto(s)
Anticuerpos Antifosfolípidos , Síndrome Antifosfolípido , Investigación Cualitativa , Humanos , Femenino , Síndrome Antifosfolípido/psicología , Síndrome Antifosfolípido/inmunología , Masculino , Anticuerpos Antifosfolípidos/inmunología , Anticuerpos Antifosfolípidos/sangre , Persona de Mediana Edad , Adulto , Canadá , Calidad de Vida , Entrevistas como Asunto , Lupus Eritematoso Sistémico/psicología , Lupus Eritematoso Sistémico/inmunología , Embarazo , Estilo de Vida
3.
J Allergy Clin Immunol Pract ; 12(9): 2439-2444.e4, 2024 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-38876271

RESUMEN

BACKGROUND: Food allergies, particularly peanut, represent the predominant cause of anaphylaxis. Whereas early allergen introduction has emerged as a potential preventive strategy, the precise impact of recent guidelines on peanut-induced anaphylaxis rates in Canada remains unclear. OBJECTIVE: To assess the impact of the 2017 Addendum Guidelines for the Prevention of Peanut Allergy on peanut-induced anaphylaxis rates in Canada. METHODS: Using a comprehensive longitudinal registry capturing pediatric anaphylaxis presentations to the Montreal's Children's Hospital, we compared children with and without known peanut allergy who presented with peanut-induced anaphylaxis between 2011 and 2019 inclusive, excluding data beyond 2019 owing to the Coronavirus disease 2019 (COVID-19) pandemic. We calculated rates of peanut-induced anaphylaxis presentations per 100,000 age-adjusted all-cause emergency department visits using 4-month intervals. Interrupted time series analysis was used to compare anaphylaxis rate trends before and after 2017 for children ages 0 to 2 and 3 to 17 years. RESULTS: We examined 2,011 cases of pediatric anaphylaxis, including 429 (21%) triggered by peanuts. Compared with pre-guideline estimates, the yearly rate of change of peanut anaphylaxis rates decreased by 7.96 (95% confidence interval -14.57 to -1.36; P = .018) after 2017 among patients with new-onset anaphylaxis in children 2 years of age or younger (n = 109). No significant changes were identified for older patients ages 3 to 17, or in patients with known peanut allergy. CONCLUSIONS: Early introduction guidelines in Canada are associated with a reduced risk of new-onset peanut-induced anaphylaxis in young children within a single center in Montreal. Further research is required to assess the impact on a wider population and other food allergens.


Asunto(s)
Anafilaxia , Hipersensibilidad al Cacahuete , Humanos , Anafilaxia/epidemiología , Hipersensibilidad al Cacahuete/epidemiología , Niño , Preescolar , Lactante , Adolescente , Femenino , Masculino , Arachis/inmunología , Guías de Práctica Clínica como Asunto , Quebec/epidemiología , Canadá/epidemiología , Sistema de Registros , Recién Nacido , COVID-19/epidemiología , COVID-19/prevención & control , Alérgenos/inmunología , Servicio de Urgencia en Hospital/estadística & datos numéricos
4.
Artículo en Inglés | MEDLINE | ID: mdl-38944196

RESUMEN

BACKGROUND: Oral immunotherapy (OIT) has emerged as the most popular therapy for food allergy. However, data on the long-term adherence and efficacy of this approach are sparse. OBJECTIVE: We aimed to assess the long-term adherence rates to OIT protocol and the associated risk of allergic reactions. METHODS: Patients who completed milk OIT and reached a maintenance dose of 200 mL of milk were surveyed biannually on their dairy consumption and occurrence of allergic reactions. A survival analysis was performed to evaluate the association between the risk of reaction and the adherence to OIT maintenance protocol. RESULTS: The cohort consisted of 50 patients. Only 56% of the cohort adhered to the protocol, which consisted of ingesting a minimum of 200 mL of milk at least 3 times per week. Adherent patients had a significantly reduced risk of allergic reactions as well as a reduced incidence of anaphylaxis, health care/emergency room visits, and epinephrine/antihistamine administration. CONCLUSIONS: The findings demonstrate the importance of consistent maintenance dose consumption in the management of food allergies, with regular milk consumption contributing to the maintenance of unresponsiveness and decreased risk of allergic symptoms.

5.
Ann Rheum Dis ; 2024 May 16.
Artículo en Inglés | MEDLINE | ID: mdl-38754981

RESUMEN

OBJECTIVES: This study aims to determine the independent impact of definitions of remission/low disease activity (LDA) on direct/indirect costs (DCs, ICs) in a multicentre inception cohort. METHODS: Patients from 31 centres in 10 countries were enrolled within 15 months of diagnosis and assessed annually. Five mutually exclusive disease activity states (DAS) were defined as (1) remission off-treatment: clinical (c) SLEDAI-2K=0, without prednisone/immunosuppressants; (2) remission on-treatment: cSLEDAI-2K=0, prednisone ≤5 mg/day and/or maintenance immunosuppressants; (3) LDA-Toronto Cohort (TC): cSLEDAI-2K≤2, without prednisone/immunosuppressants; (4) modified lupus LDA state (mLLDAS): SLEDAI-2K≤4, no activity in major organs/systems, no new activity, prednisone ≤7.5 mg/day and/or maintenance immunosuppressants and (5) active: all remaining assessments.At each assessment, patients were stratified into the most stringent DAS fulfilled and the proportion of time in a DAS since cohort entry was determined. Annual DCs/ICs (2021 Canadian dollars) were based on healthcare use and lost workforce/non-workforce productivity over the preceding year.The association between the proportion of time in a DAS and annual DC/IC was examined through multivariable random-effects linear regressions. RESULTS: 1692 patients were followed a mean of 9.7 years; 49.0% of assessments were active. Remission/LDA (per 25% increase in time in a remission/LDA state vs active) were associated with lower annual DC/IC: remission off-treatment (DC -$C1372; IC -$C2507), remission on-treatment (DC -$C973; IC -$C2604,) LDA-TC (DC -$C1158) and mLLDAS (DC -$C1040). There were no cost differences between remission/LDA states. CONCLUSIONS: Our data suggest that systemic lupus erythematosus patients who achieve remission, both off and on-therapy, and reductions in disease activity incur lower costs than those experiencing persistent disease activity.

6.
Lupus Sci Med ; 11(1)2024 Apr 09.
Artículo en Inglés | MEDLINE | ID: mdl-38599670

RESUMEN

BACKGROUND: Cranial neuropathies (CN) are a rare neuropsychiatric SLE (NPSLE) manifestation. Previous studies reported that antibodies to the kinesin family member 20B (KIF20B) (anti-KIF20B) protein were associated with idiopathic ataxia and CN. We assessed anti-KIF20B as a potential biomarker for NPSLE in an international SLE inception cohort. METHODS: Individuals fulfilling the revised 1997 American College of Rheumatology (ACR) SLE classification criteria were enrolled from 31 centres from 1999 to 2011 and followed annually in the Systemic Lupus Erythematosus International Collaborating Clinics inception cohort. Anti-KIF20B testing was performed on baseline (within 15 months of diagnosis or first annual visit) samples using an addressable laser bead immunoassay. Logistic regression (penalised maximum likelihood and adjusting for confounding variables) examined the association between anti-KIF20B and NPSLE manifestations (1999 ACR case definitions), including CN, occurring over the first 5 years of follow-up. RESULTS: Of the 1827 enrolled cohort members, baseline serum and 5 years of follow-up data were available on 795 patients who were included in this study: 29.8% were anti-KIF20B-positive, 88.7% female, and 52.1% White. The frequency of anti-KIF20B positivity differed only for those with CN (n=10) versus without CN (n=785) (70.0% vs 29.3%; OR 5.2, 95% CI 1.4, 18.5). Compared with patients without CN, patients with CN were more likely to fulfil the ACR haematological (90.0% vs 66.1%; difference 23.9%, 95% CI 5.0%, 42.8%) and ANA (100% vs 95.7%; difference 4.3%, 95% CI 2.9%, 5.8%) criteria. In the multivariate analysis adjusting for age at baseline, female, White race and ethnicity, and ACR haematological and ANA criteria, anti-KIF20B positivity remained associated with CN (OR 5.2, 95% CI 1.4, 19.1). CONCLUSION: Anti-KIF20B is a potential biomarker for SLE-related CN. Further studies are needed to examine how autoantibodies against KIF20B, which is variably expressed in a variety of neurological cells, contribute to disease pathogenesis.


Asunto(s)
Autoanticuerpos , Cinesinas , Lupus Eritematoso Sistémico , Femenino , Humanos , Masculino , Biomarcadores , Lupus Eritematoso Sistémico/complicaciones , Lupus Eritematoso Sistémico/diagnóstico
7.
Ann Allergy Asthma Immunol ; 133(1): 81-85.e2, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-38499059

RESUMEN

BACKGROUND: Egg is the third most common food allergy in children; however, data on pediatric egg-induced anaphylaxis are sparse. OBJECTIVE: To describe the clinical characteristics, management, and outcomes of pediatric egg-induced anaphylaxis. METHODS: Children presenting with anaphylaxis were recruited from 13 emergency departments as part of the Cross-Canada Anaphylaxis Registry, from which data on anaphylaxis triggered by egg were extracted. Multivariate logistic regression was used to determine factors associated with prehospital epinephrine autoinjector (EAI) use and to compare anaphylaxis triggered by egg with other triggers of food-induced anaphylaxis (FIA). RESULTS: We recruited 302 children with egg-induced anaphylaxis. The mean age was 2.6 years (SD = 3.6), and 55.3% were male. Only 39.4% had previously been diagnosed with an egg allergy. Prehospital EAI use was 32.1%, but this was not significantly lower than in other triggers of FIA (P = .26). Only 1.4% of patients required hospital admission. Relative to other triggers of FIA, patients with egg-induced anaphylaxis were significantly younger (P < .001) and exhibited more vomiting (P = .0053) and less throat tightness (P = .0015) and angioedema (P < .001). CONCLUSION: To the best of our knowledge, this is the largest published cohort of pediatric egg-induced anaphylaxis. In this cohort, prehospital EAI use was very low. In addition, we identified certain symptoms that distinguish egg-induced from other triggers of FIA. Taken together, high suspicion is crucial in identifying egg-induced anaphylaxis, given the younger patient demographic and frequent lack of FIA history.


Asunto(s)
Anafilaxia , Hipersensibilidad al Huevo , Epinefrina , Humanos , Anafilaxia/tratamiento farmacológico , Anafilaxia/etiología , Anafilaxia/diagnóstico , Anafilaxia/terapia , Masculino , Femenino , Estudios Transversales , Hipersensibilidad al Huevo/terapia , Hipersensibilidad al Huevo/diagnóstico , Hipersensibilidad al Huevo/inmunología , Hipersensibilidad al Huevo/complicaciones , Preescolar , Niño , Epinefrina/uso terapéutico , Epinefrina/administración & dosificación , Lactante , Canadá/epidemiología , Servicio de Urgencia en Hospital/estadística & datos numéricos , Sistema de Registros
8.
Semin Arthritis Rheum ; 65: 152347, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38185079

RESUMEN

BACKGROUND: Long-term anticoagulant therapy is generally recommended for thrombotic antiphospholipid syndrome (TAPS) patients, however it may be withdrawn or not introduced in routine practice. OBJECTIVES: To prospectively evaluate the risk of thrombosis recurrence and major bleeding in non-anticoagulated TAPS patients, compared to anticoagulated TAPS, and secondly, to identify different features between those two groups. PATIENTS/METHODS: Using an international registry, we identified non-anticoagulated TAPS patients at baseline, and matched them with anticoagulated TAPS patients based on gender, age, type of previous thrombosis, and associated autoimmune disease. Thrombosis recurrence and major bleeding were prospectively analyzed using Kaplan-Meier method and compared using a marginal Cox's regression model. RESULTS: As of June 2022, 94 (14 %) of the 662 TAPS patients were not anticoagulated; and 93 of them were matched with 181 anticoagulated TAPS patients (median follow-up 5 years [interquartile range 3 to 8]). The 5-year thrombosis recurrence and major bleeding rates were 12 % versus 10 %, and 6 % versus 7 %, respectively (hazard ratio [HR] 1.38, 95 % confidence interval [CI] 0.53 to 3.56, p = 0.50 and HR 0.53; 95 % CI 0.15 to 1.86; p = 0.32, respectively). Non-anticoagulated patients were more likely to receive antiplatelet therapy (p < 0.001), and less likely to have more than one previous thrombosis (p < 0.001) and lupus anticoagulant positivity (p = 0.01). CONCLUSION: Fourteen percent of the TAPS patients were not anticoagulated at recruitment. Their recurrent thrombosis risk did not differ compared to matched anticoagulated TAPS patients, supporting the pressing need for risk-stratified secondary thrombosis prevention trials in APS investigating strategies other than anticoagulation.


Asunto(s)
Síndrome Antifosfolípido , Trombosis , Humanos , Anticoagulantes/uso terapéutico , Síndrome Antifosfolípido/complicaciones , Síndrome Antifosfolípido/tratamiento farmacológico , Hemorragia/etiología , Estudios Prospectivos , Recurrencia , Sistema de Registros , Trombosis/complicaciones , Ensayos Clínicos como Asunto , Masculino , Femenino
9.
Ann Allergy Asthma Immunol ; 132(4): 512-518.e1, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38070650

RESUMEN

BACKGROUND: Cow's milk is one of the most common and burdensome allergens in pediatrics, and it can induce severe anaphylactic reactions in children. However, data on cow's milk-induced anaphylaxis are sparse. OBJECTIVE: To describe the epidemiology of pediatric cow's milk-induced anaphylaxis and to determine risk factors for repeat emergency department (ED) epinephrine administration. METHODS: Between April 2011 and May 2023, data were collected on children with anaphylaxis presenting to 10 Canadian EDs. A standardized form documenting symptoms, triggers, treatment, and outcome was used. Multivariate logistic regression was used. RESULTS: Of 3118 anaphylactic reactions, 319 milk-induced anaphylaxis cases were identified (10%). In the prehospital setting, 54% of patients with milk-induced anaphylaxis received intramuscular epinephrine. In those with milk-induced anaphylaxis, receiving epinephrine before presenting to the ED was associated with a reduced risk of requiring 2 or more epinephrine doses in the ED (adjusted odds ratio, 0.95 [95% CI, 0.90-0.99]). Children younger than 5 years of age were more likely to experience a mild reaction compared with that in older children, who experienced a moderate reaction more often (P < .0001). Compared with other forms of food-induced anaphylaxis, children presenting with milk-induced anaphylaxis were younger; a greater proportion experienced wheezing and vomiting, and less experienced angioedema. CONCLUSION: Prehospital epinephrine in pediatric milk-induced anaphylaxis is underused; however, it may decrease risk of requiring 2 ED epinephrine doses. Milk-induced anaphylaxis in children younger than 5 years of age may be less severe than in older children. Wheezing and vomiting are more prevalent in milk-induced anaphylaxis compared with that of other foods.


Asunto(s)
Anafilaxia , Femenino , Animales , Bovinos , Niño , Humanos , Anafilaxia/tratamiento farmacológico , Anafilaxia/epidemiología , Anafilaxia/etiología , Leche/efectos adversos , Ruidos Respiratorios , Canadá/epidemiología , Epinefrina/uso terapéutico , Servicio de Urgencia en Hospital , Alérgenos , Vómitos/tratamiento farmacológico
10.
Lupus Sci Med ; 10(2)2023 12 09.
Artículo en Inglés | MEDLINE | ID: mdl-38087643

RESUMEN

OBJECTIVE: Lupus nephritis (LN) is one of the most severe manifestations of SLE; however, we know little about the lived experience of LN. This research investigates patient experiences and perspectives of (1) LN diagnosis; (2) living with LN; and (3) LN healthcare and treatment. METHODS: Patients aged ≥18 years with biopsy-proven pure or mixed International Society of Nephrology/Renal Pathology Society class III, IV or V LN were purposefully recruited from a Canadian lupus cohort to participate in semistructured in-depth interviews. RESULTS: Thirty patients with LN completed the interviews. The mean (SD) age was 42.1 (16.4) years, and 86.7% were female. Participants described challenges seeking, receiving and adjusting to a LN diagnosis, and some reported that their diagnosis process took weeks to years. While 16 participants were provided resources by healthcare providers to help them through the process of diagnosis, the need for accessible LN-specific information at diagnosis was highlighted (n=18). Participants also described the unpredictability of living with LN, particularly related to impacts on physical and mental health, relationships, leisure activities, employment and education, and family planning. While most (n=26) participants reported a positive impression of their care, the side effects of LN medications and the need to increase patient and societal awareness/understanding of LN were highlighted in the context of healthcare and treatment. CONCLUSIONS: The unpredictability of living with LN, the heavy treatment burden and a lack of patient/societal awareness substantially affect the lived experience of LN. These findings will inform the development of LN-specific patient resources to increase understanding of LN and improve well-being for patients.


Asunto(s)
Lupus Eritematoso Sistémico , Nefritis Lúpica , Humanos , Femenino , Adolescente , Adulto , Masculino , Nefritis Lúpica/tratamiento farmacológico , Canadá , Lupus Eritematoso Sistémico/patología , Riñón/patología , Evaluación del Resultado de la Atención al Paciente
11.
Ann Allergy Asthma Immunol ; 131(6): 752-758.e1, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-37689113

RESUMEN

BACKGROUND: Epinephrine is the first-line treatment for anaphylaxis but is often replaced with antihistamines or corticosteroids. Delayed epinephrine administration is a risk factor for fatal anaphylaxis. Convincing data on the role of antihistamines and corticosteroids in anaphylaxis management are sparse. OBJECTIVE: To establish the impact of prehospital treatment with epinephrine, antihistamines, and/or corticosteroids on anaphylaxis management. METHODS: Patients presenting with anaphylaxis were recruited prospectively and retrospectively in 10 Canadian and 1 Israeli emergency departments (EDs) between April 2011 and August 2022, as part of the Cross-Canada Anaphylaxis REgistry. Data on anaphylaxis cases were collected using a standardized form. Primary outcomes were uncontrolled reactions (>2 doses of epinephrine in ED), no prehospital epinephrine use, use of intravenous fluids in ED, and hospital admission. Multivariate regression was used to identify factors associated with primary outcomes. RESULTS: Among 5364 reactions recorded, median age was 8.8 years (IQR, 3.78-16.9); 54.9% of the patients were males, and 52.5% had a known food allergy. In the prehospital setting, 37.9% received epinephrine; 44.3% received antihistamines, and 3.15% received corticosteroids. Uncontrolled reactions happened in 250 reactions. Patients treated with prehospital epinephrine were less likely to have uncontrolled reactions (adjusted odds ratio [aOR], 0.955 [95% CI, 0.943-0.967]), receive intravenous fluids in ED (aOR, 0.976 [95% CI, 0.959-0.992]), and to be admitted after the reaction (aOR, 0.964 [95% CI, 0.949-0.980]). Patients treated with prehospital antihistamines were less likely to have uncontrolled reactions (aOR, 0.978 [95% CI, 0.967-0.989]) and to be admitted after the reaction (aOR, 0.963 [95% CI, 0.949-0.977]). Patients who received prehospital corticosteroids were more likely to require intravenous fluids in ED (aOR, 1.059 [95% CI, 1.013-1.107]) and be admitted (aOR, 1.232 [95% CI, 1.181-1.286]). CONCLUSION: Our findings in this predominantly pediatric population support the early use of epinephrine and suggest a beneficial effect of antihistamines. Corticosteroid use in anaphylaxis should be revisited.


Asunto(s)
Anafilaxia , Servicios Médicos de Urgencia , Masculino , Humanos , Niño , Femenino , Anafilaxia/tratamiento farmacológico , Anafilaxia/epidemiología , Anafilaxia/etiología , Estudios Retrospectivos , Datos de Salud Recolectados Rutinariamente , Canadá/epidemiología , Epinefrina/uso terapéutico , Servicio de Urgencia en Hospital , Antagonistas de los Receptores Histamínicos/uso terapéutico , Corticoesteroides/uso terapéutico
12.
Implement Sci Commun ; 4(1): 120, 2023 Sep 27.
Artículo en Inglés | MEDLINE | ID: mdl-37759275

RESUMEN

BACKGROUND: Integrated Knowledge Translation (IKT) and other forms of research co-production are increasingly recognized as valuable approaches to knowledge creation as a way to better facilitate the implementation of scientific findings. However, the nature of some scientific work can preclude direct knowledge to action as a likely outcome. Do IKT approaches have value in such cases? METHODS: This study used a qualitative case study approach to better understand the function of IKT in a non-traditional application: basic and clinical science investigating the causes and consequences of food allergy. Building off previous baseline findings, data were obtained through in-depth interviews with project scientists and steering committee members and complemented by researcher observation. Data were analyzed through an integrated approach to understand how well participants perceived the stipulated project IKT outcomes had been met and to better understand the relationship between different forms of IKT goals, outcomes, and impacts. RESULTS: We propose a conceptual model which builds temporal continuity into the IKT work and understands success beyond truncated timelines of any one project. The model proposes project IKT goals be conceptualized through three metaphorical tower blocks: foundational (changing the culture for both scientists and knowledge-users), laying the groundwork (building relationships, networks and sparking scientific inquiry), and putting scientific knowledge to action. Based on this model, this case study demonstrated notable success at the foundational and intermediate blocks, though did not turn basic and clinical research knowledge into actionable outcomes within the project timespan. CONCLUSIONS: We find that current IKT literature which situates success as filling a knowledge to action gap is conceptually inadequate for understanding the full contributions of IKT activities. This work highlights the need for building cultural and scientific familiarity with IKT in order to better enable knowledge to action translation. Improving understanding and communication of science and empowering knowledge-users to engage with the research agenda are long-term strategies to build towards knowledge implementation and lay the ground work for many future research projects.

13.
Arthritis Rheumatol ; 75(12): 2195-2206, 2023 12.
Artículo en Inglés | MEDLINE | ID: mdl-37459273

RESUMEN

OBJECTIVE: The goals of this study were to assess the associations of severe nonadherence to hydroxychloroquine (HCQ), objectively assessed by HCQ serum levels, and risks of systemic lupus erythematosus (SLE) flares, damage, and mortality rates over five years of follow-up. METHODS: The Systemic Lupus International Collaborating Clinics (SLICC) Inception Cohort is an international multicenter initiative (33 centers throughout 11 countries). The serum of patients prescribed HCQ for at least three months at enrollment were analyzed. Severe nonadherence was defined by a serum HCQ level <106 ng/mL or <53 ng/mL for HCQ doses of 400 or 200 mg/day, respectively. Associations with the risk of a flare (defined as a Systemic Lupus Erythematosus Disease Activity Index 2000 increase ≥4 points, initiation of prednisone or immunosuppressive drugs, or new renal involvement) were studied with logistic regression, and associations with damage (first SLICC/American College of Rheumatology Damage Index [SDI] increase ≥1 point) and mortality with separate Cox proportional hazard models. RESULTS: Of the 1,849 cohort participants, 660 patients (88% women) were included. Median (interquartile range) serum HCQ was 388 ng/mL (244-566); 48 patients (7.3%) had severe HCQ nonadherence. No covariates were clearly associated with severe nonadherence, which was, however, independently associated with both flare (odds ratio 3.38; 95% confidence interval [CI] 1.80-6.42) and an increase in the SDI within each of the first three years (hazard ratio [HR] 1.92 at three years; 95% CI 1.05-3.50). Eleven patients died within five years, including 3 with severe nonadherence (crude HR 5.41; 95% CI 1.43-20.39). CONCLUSION: Severe nonadherence was independently associated with the risks of an SLE flare in the following year, early damage, and five-year mortality.


Asunto(s)
Hidroxicloroquina , Lupus Eritematoso Sistémico , Humanos , Femenino , Masculino , Hidroxicloroquina/uso terapéutico , Lupus Eritematoso Sistémico/tratamiento farmacológico , Prednisona , Inmunosupresores/uso terapéutico , Modelos de Riesgos Proporcionales
17.
Ann Rheum Dis ; 82(7): 927-936, 2023 07.
Artículo en Inglés | MEDLINE | ID: mdl-37085289

RESUMEN

OBJECTIVES: A novel longitudinal clustering technique was applied to comprehensive autoantibody data from a large, well-characterised, multinational inception systemic lupus erythematosus (SLE) cohort to determine profiles predictive of clinical outcomes. METHODS: Demographic, clinical and serological data from 805 patients with SLE obtained within 15 months of diagnosis and at 3-year and 5-year follow-up were included. For each visit, sera were assessed for 29 antinuclear antibodies (ANA) immunofluorescence patterns and 20 autoantibodies. K-means clustering on principal component analysis-transformed longitudinal autoantibody profiles identified discrete phenotypic clusters. One-way analysis of variance compared cluster enrolment demographics and clinical outcomes at 10-year follow-up. Cox proportional hazards model estimated the HR for survival adjusting for age of disease onset. RESULTS: Cluster 1 (n=137, high frequency of anti-Smith, anti-U1RNP, AC-5 (large nuclear speckled pattern) and high ANA titres) had the highest cumulative disease activity and immunosuppressants/biologics use at year 10. Cluster 2 (n=376, low anti-double stranded DNA (dsDNA) and ANA titres) had the lowest disease activity, frequency of lupus nephritis and immunosuppressants/biologics use. Cluster 3 (n=80, highest frequency of all five antiphospholipid antibodies) had the highest frequency of seizures and hypocomplementaemia. Cluster 4 (n=212) also had high disease activity and was characterised by multiple autoantibody reactivity including to antihistone, anti-dsDNA, antiribosomal P, anti-Sjögren syndrome antigen A or Ro60, anti-Sjögren syndrome antigen B or La, anti-Ro52/Tripartite Motif Protein 21, antiproliferating cell nuclear antigen and anticentromere B). Clusters 1 (adjusted HR 2.60 (95% CI 1.12 to 6.05), p=0.03) and 3 (adjusted HR 2.87 (95% CI 1.22 to 6.74), p=0.02) had lower survival compared with cluster 2. CONCLUSION: Four discrete SLE patient longitudinal autoantibody clusters were predictive of long-term disease activity, organ involvement, treatment requirements and mortality risk.


Asunto(s)
Autoanticuerpos , Lupus Eritematoso Sistémico , Humanos , Anticuerpos Antinucleares , ADN , Inmunosupresores , Aprendizaje Automático
18.
Rheumatology (Oxford) ; 62(Suppl 1): i4-i9, 2023 03 29.
Artículo en Inglés | MEDLINE | ID: mdl-36987602

RESUMEN

SLE is a global health concern that unevenly affects certain ethnic/racial groups. Individuals of Asian, Black, Hispanic and Indigenous ethnicity/race are amongst those who experience increased prevalence, incidence, morbidity and mortality. Population-based surveillance studies from many regions are few and often still in nascent stages. Many of these areas are challenged by restricted access to diagnostics and therapeutics. Without accurately capturing the worldwide burden and distribution of SLE, appropriately dedicating resources to improve global SLE outcomes may be challenging. This review discusses recent SLE epidemiological studies, highlighting the challenges and emerging opportunities in low- and middle-income countries. We suggest means of closing these gaps to better address the global health need in SLE.


Asunto(s)
Etnicidad , Lupus Eritematoso Sistémico , Humanos , Hispánicos o Latinos , Lupus Eritematoso Sistémico/epidemiología , Morbilidad , Grupos Raciales , Pueblo Asiatico , Población Negra
SELECCIÓN DE REFERENCIAS
DETALLE DE LA BÚSQUEDA
...