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Artikel ; Online: Tackling global challenges in pediatric rheumatology.

Lewandowski, Laura B

2020 Band 32, Heft 5, Seite(n) 414–420

Abstract: Purpose of the review: To highlight the current challenges in diagnosis and clinical care of pediatric rheumatic disease and barriers to research and education of pediatric rheumatologists worldwide.: Recent findings: Recent studies and reports ... ...

Abstract	Purpose of the review: To highlight the current challenges in diagnosis and clinical care of pediatric rheumatic disease and barriers to research and education of pediatric rheumatologists worldwide. Recent findings: Recent studies and reports demonstrate a paucity of studies on epidemiology, outcomes, and management guidelines from many regions of the world. There have been noteworthy efforts to bridge the gap in under resourced areas. An analysis of the global burden of rheumatic disease has demonstrated that while understudied, musculoskeletal diseases are prevalent and increasingly contribute to loss of years of healthy life. In juvenile idiopathic arthritis, two milestone publications in global pediatric rheumatology have recently been published. An international study evaluated the epidemiology, treatment, and outcomes of juvenile idiopathic arthritis and demonstrated global diversity in both clinical manifestations and outcomes. Notably, the first guidelines for managing pediatric rheumatic disease in a less resourced setting have been published for juvenile idiopathic arthritis. This document offers the first publication targeted to address challenges faced by pediatric rheumatology caregivers in low-resourced settings. These documents serve as exemplars for international collaboration in pediatric rheumatology and can be used as models for other pediatric rheumatic disease research. Other efforts are making progress in various arenas towards increasing access to care, education, and training in pediatric rheumatology. Summary: The global burden of rheumatic disease in the pediatric population is poorly understood but unrecognized disease greatly impacts the overall morbidity and mortality in this population. More studies in lesser resourced regions are needed to prioritize access to pediatric rheumatology care and prioritize a further increase in research capacity and education moving forward.
Mesh-Begriff(e)	Child ; Global Burden of Disease ; Humans ; Prevalence ; Rheumatic Diseases/diagnosis ; Rheumatic Diseases/epidemiology ; Rheumatic Diseases/therapy ; Rheumatology
Schlagwörter	covid19
Sprache	Englisch
Erscheinungsdatum	2020-07-13
Erscheinungsland	United States
Dokumenttyp	Journal Article ; Review
ZDB-ID	1045317-9
ISSN	1531-6963 ; 1040-8711
ISSN (online)	1531-6963
ISSN	1040-8711
DOI	10.1097/BOR.0000000000000726
Datenquelle	MEDical Literature Analysis and Retrieval System OnLINE

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Artikel: Barriers and facilitators to medical care retention for pediatric systemic lupus erythematosus in South Africa: a qualitative study.

Ikram, Naira / Lewandowski, Laura B / Watt, Melissa H / Scott, Christiaan

Research square

2024

Abstract: Background: Systemic lupus erythematosus (SLE) is a life-threatening, chronic, autoimmune disease requiring long term subspecialty care due to its complex and chronic nature. Childhood-onset SLE (cSLE) is more severe than adult-onset, and the cSLE ... ...

Abstract	Background: Systemic lupus erythematosus (SLE) is a life-threatening, chronic, autoimmune disease requiring long term subspecialty care due to its complex and chronic nature. Childhood-onset SLE (cSLE) is more severe than adult-onset, and the cSLE population in South Africa has been reported to have an even higher risk than patients elsewhere. Therefore, it is critical to promptly diagnose, treat, and manage cSLE. In this paper, we aim to describe and evaluate barriers and enablers of appropriate long-term care of cSLE South Africa from the perspective of caregivers (parents or family members). Methods: Caregivers (n=22) were recruited through pediatric and adult rheumatology clinics. Individuals were eligible if they cared for youth (≤19 years) who were diagnosed with cSLE and satisfied at least four of the eleven ACR SLE classification criteria.Individual in-depth, semi-structured interviews were conducted between January 2014 and December 2014, and explored barriers to and facilitators of ongoing chronic care for cSLE. Data were analyzed using applied thematic analysis. Results: Four barriers to chronic care engagement and retention were identified: knowledge gap, financial burdens, social stigma of SLE, and complexity of the South African medical system. Additionally, we found three facilitators: patient and caregiver education, robust support system for the caregiver, and financial support for the caregiver and patient. Conclusion: These findings highlight multiple, intersecting barriers to routine longitudinal care for cSLE in South Africa and suggest there might be a group of diagnosed children who don't receive follow-up care and are subject to attrition. cSLE requires ongoing treatment and care; thus, the different barriers may interact and compound over time with each follow-up visit. South African cSLE patients are at high risk for poor outcomes. South African care teams should work to overcome these barriers and place attention on the facilitators to improve care retention for these patients and create a model for other less resourced settings.
Sprache	Englisch
Erscheinungsdatum	2024-02-28
Erscheinungsland	United States
Dokumenttyp	Preprint
DOI	10.21203/rs.3.rs-3919073/v1
Datenquelle	MEDical Literature Analysis and Retrieval System OnLINE

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Artikel ; Online: Barriers and facilitators to medical care retention for pediatric systemic lupus erythematosus in South Africa: a qualitative study.

Ikram, Naira / Lewandowski, Laura B / Watt, Melissa H / Scott, Christiaan

Pediatric rheumatology online journal

2024 Band 22, Heft 1, Seite(n) 59

Abstract	Background: Systemic lupus erythematosus (SLE) is a life-threatening, chronic, autoimmune disease requiring long term subspecialty care due to its complex and chronic nature. Childhood-onset SLE (cSLE) is more severe than adult-onset, and the cSLE population in South Africa has been reported to have an even higher risk than patients elsewhere. Therefore, it is critical to promptly diagnose, treat, and manage cSLE. In this paper, we aim to describe and evaluate barriers and enablers of appropriate long-term care of cSLE South Africa from the perspective of caregivers (parents or family members). Methods: Caregivers (n = 22) were recruited through pediatric and adult rheumatology clinics. Individuals were eligible if they cared for youth (≤ 19 years) who were diagnosed with cSLE and satisfied at least four of the eleven ACR SLE classification criteria. Individual in-depth, semi-structured interviews were conducted between January 2014 and December 2014, and explored barriers to and facilitators of ongoing chronic care for cSLE. Data were analyzed using applied thematic analysis. Results: Four barriers to chronic care engagement and retention were identified: knowledge gap, financial burdens, social stigma of SLE, and complexity of the South African medical system. Additionally, we found three facilitators: patient and caregiver education, robust support system for the caregiver, and financial support for the caregiver and patient. Conclusion: These findings highlight multiple, intersecting barriers to routine longitudinal care for cSLE in South Africa and suggest there might be a group of diagnosed children who don't receive follow-up care and are subject to loss to follow-up. cSLE requires ongoing treatment and care; thus, the different barriers may interact and compound over time with each follow-up visit. South African cSLE patients are at high risk for poor outcomes. South African care teams should work to overcome these barriers and place attention on the facilitators to improve care retention for these patients and create a model for other less resourced settings.
Mesh-Begriff(e)	Humans ; Lupus Erythematosus, Systemic/therapy ; Lupus Erythematosus, Systemic/psychology ; South Africa ; Female ; Qualitative Research ; Male ; Child ; Caregivers/psychology ; Adolescent ; Health Services Accessibility ; Retention in Care/statistics & numerical data ; Social Stigma ; Adult ; Health Knowledge, Attitudes, Practice
Sprache	Englisch
Erscheinungsdatum	2024-05-28
Erscheinungsland	England
Dokumenttyp	Journal Article
ZDB-ID	2279468-2
ISSN	1546-0096 ; 1546-0096
ISSN (online)	1546-0096
ISSN	1546-0096
DOI	10.1186/s12969-024-00994-0
Datenquelle	MEDical Literature Analysis and Retrieval System OnLINE

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Artikel ; Online: Global rheumatology in the time of COVID-19.

Lewandowski, Laura B / Hsieh, Evelyn

The Lancet. Rheumatology

2020 Band 2, Heft 5, Seite(n) e254–e255

Schlagwörter	covid19
Sprache	Englisch
Erscheinungsdatum	2020-04-06
Erscheinungsland	England
Dokumenttyp	Journal Article
ISSN	2665-9913
ISSN (online)	2665-9913
DOI	10.1016/S2665-9913(20)30091-6
Datenquelle	MEDical Literature Analysis and Retrieval System OnLINE

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Artikel: Tackling global challenges in pediatric rheumatology

Lewandowski, Laura B

Curr Opin Rheumatol

Abstract: PURPOSE OF THE REVIEW: To highlight the current challenges in diagnosis and clinical care of pediatric rheumatic disease and barriers to research and education of pediatric rheumatologists worldwide. RECENT FINDINGS: Recent studies and reports ... ...

Abstract	PURPOSE OF THE REVIEW: To highlight the current challenges in diagnosis and clinical care of pediatric rheumatic disease and barriers to research and education of pediatric rheumatologists worldwide. RECENT FINDINGS: Recent studies and reports demonstrate a paucity of studies on epidemiology, outcomes, and management guidelines from many regions of the world. There have been noteworthy efforts to bridge the gap in under resourced areas. An analysis of the global burden of rheumatic disease has demonstrated that while understudied, musculoskeletal diseases are prevalent and increasingly contribute to loss of years of healthy life. In juvenile idiopathic arthritis, two milestone publications in global pediatric rheumatology have recently been published. An international study evaluated the epidemiology, treatment, and outcomes of juvenile idiopathic arthritis and demonstrated global diversity in both clinical manifestations and outcomes. Notably, the first guidelines for managing pediatric rheumatic disease in a less resourced setting have been published for juvenile idiopathic arthritis. This document offers the first publication targeted to address challenges faced by pediatric rheumatology caregivers in low-resourced settings. These documents serve as exemplars for international collaboration in pediatric rheumatology and can be used as models for other pediatric rheumatic disease research. Other efforts are making progress in various arenas towards increasing access to care, education, and training in pediatric rheumatology. SUMMARY: The global burden of rheumatic disease in the pediatric population is poorly understood but unrecognized disease greatly impacts the overall morbidity and mortality in this population. More studies in lesser resourced regions are needed to prioritize access to pediatric rheumatology care and prioritize a further increase in research capacity and education moving forward.
Schlagwörter	covid19
Verlag	WHO
Dokumenttyp	Artikel
Anmerkung	WHO #Covidence: #682650
Datenquelle	COVID19

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Artikel: Global rheumatology in the time of COVID-19

Lewandowski, Laura B / Hsieh, Evelyn

Lancet Rheumat.

Schlagwörter	covid19
Verlag	WHO
Dokumenttyp	Artikel
Anmerkung	WHO #Covidence: #34911
Datenquelle	COVID19

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Artikel ; Online: Global rheumatology in the time of COVID-19

Lewandowski, Laura B / Hsieh, Evelyn

The Lancet Rheumatology

2020 Band 2, Heft 5, Seite(n) e254–e255

Schlagwörter	covid19
Sprache	Englisch
Verlag	Elsevier BV
Erscheinungsland	us
Dokumenttyp	Artikel ; Online
ISSN	2665-9913
DOI	10.1016/s2665-9913(20)30091-6
Datenquelle	BASE - Bielefeld Academic Search Engine (Lebenswissenschaftliche Auswahl)

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Artikel ; Online: Pediatric Rheumatic Disease in Lower to Middle-Income Countries: Impact of Global Disparities, Ancestral Diversity, and the Path Forward.

Scott, Christiaan / Sawhney, Sujata / Lewandowski, Laura B

Rheumatic diseases clinics of North America

2021 Band 48, Heft 1, Seite(n) 199–215

Abstract: Pediatric rheumatology subspecialists treat chronic autoimmune diseases with onset in childhood. Prompt diagnosis and ongoing management of these conditions are imperative to prevent damage from ongoing inflammation. Here, we aim to describe the current ... ...

Abstract	Pediatric rheumatology subspecialists treat chronic autoimmune diseases with onset in childhood. Prompt diagnosis and ongoing management of these conditions are imperative to prevent damage from ongoing inflammation. Here, we aim to describe the current landscape of pediatric rheumatic disease in lower to middle-income countries (LMICs) and explore current barriers to understanding global disease burden. We then examine innovative strategies to promote a more equitable future for children and young people living with rheumatic diseases worldwide.
Mesh-Begriff(e)	Adolescent ; Child ; Developing Countries ; Humans ; Income ; Rheumatic Diseases/diagnosis ; Rheumatic Diseases/epidemiology ; Rheumatic Diseases/therapy ; Rheumatology
Sprache	Englisch
Erscheinungsdatum	2021-10-29
Erscheinungsland	United States
Dokumenttyp	Journal Article ; Review
ZDB-ID	92118-x
ISSN	1558-3163 ; 0889-857X
ISSN (online)	1558-3163
ISSN	0889-857X
DOI	10.1016/j.rdc.2021.09.001
Datenquelle	MEDical Literature Analysis and Retrieval System OnLINE

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Artikel ; Online: Health Equity Implications of Missing Data Among Youths With Childhood-Onset Systemic Lupus Erythematosus: A Proof-of-Concept Study in the Childhood Arthritis and Rheumatology Research Alliance Registry.

Woo, Jennifer M P / Simmonds, Faith / Dennos, Anne / Son, Mary Beth F / Lewandowski, Laura B / Rubinstein, Tamar B

Arthritis care & research

2023 Band 75, Heft 11, Seite(n) 2285–2294

Abstract: Objective: Health disparities in childhood-onset systemic lupus erythematosus (SLE) disproportionately impact marginalized populations. Socioeconomically patterned missing data can magnify existing health inequities by supporting inferences that may ... ...

Abstract	Objective: Health disparities in childhood-onset systemic lupus erythematosus (SLE) disproportionately impact marginalized populations. Socioeconomically patterned missing data can magnify existing health inequities by supporting inferences that may misrepresent populations of interest. Our objective was to assess missing data and subsequent health equity implications among participants with childhood-onset SLE enrolled in a large pediatric rheumatology registry. Methods: We evaluated co-missingness of 12 variables representing demographics, socioeconomic position, and clinical factors (e.g., disease-related indices) using Childhood Arthritis and Rheumatology Research Alliance Registry childhood-onset SLE enrollment data (2015-2022; n = 766). We performed logistic regression to calculate odds ratios (ORs) and 95% confidence intervals (95% CIs) for missing disease-related indices at enrollment (Systemic Lupus Erythematosus Disease Activity Index 2000 [SLEDAI-2K] and/or Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index [SDI]) associated with data missingness. We used linear regression to assess the association between socioeconomic factors and SLEDAI-2K at enrollment using 3 analytic methods for missing data: complete case analysis, multiple imputation, and nonprobabilistic bias analyses, with missing values imputed to represent extreme low or high disadvantage. Results: On average, participants were missing 6.2% of data, with over 50% of participants missing at least 1 variable. Missing data correlated most closely with variables within data categories (i.e., demographic). Government-assisted health insurance was associated with missing SLEDAI-2K and/or SDI scores compared to private health insurance (OR 2.04 [95% CI 1.22, 3.41]). The different analytic approaches resulted in varying analytic sample sizes and fundamentally conflicting estimated associations. Conclusion: Our results support intentional evaluation of missing data to inform effect estimate interpretation and critical assessment of causal statements that might otherwise misrepresent health inequities.
Mesh-Begriff(e)	Child ; Humans ; Adolescent ; Arthritis, Juvenile/diagnosis ; Arthritis, Juvenile/epidemiology ; Arthritis, Juvenile/complications ; Health Equity ; Rheumatology ; Lupus Erythematosus, Systemic/diagnosis ; Lupus Erythematosus, Systemic/epidemiology ; Lupus Erythematosus, Systemic/therapy ; Registries ; Severity of Illness Index
Sprache	Englisch
Erscheinungsdatum	2023-05-30
Erscheinungsland	United States
Dokumenttyp	Journal Article ; Research Support, N.I.H., Intramural ; Research Support, Non-U.S. Gov't
ZDB-ID	645059-3
ISSN	2151-4658 ; 0893-7524 ; 2151-464X
ISSN (online)	2151-4658
ISSN	0893-7524 ; 2151-464X
DOI	10.1002/acr.25136
Datenquelle	MEDical Literature Analysis and Retrieval System OnLINE

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Artikel ; Online: Renal Response Outcomes of the EuroLupus and National Institutes of Health Cyclophosphamide Dosing Regimens in Childhood-Onset Proliferative Lupus Nephritis.

Arthritis & rheumatology (Hoboken, N.J.)

2024 Band 76, Heft 3, Seite(n) 469–478

Abstract: Objective: We compared clinical characteristics and renal response in patients with childhood-onset proliferative lupus nephritis (LN) treated with the EuroLupus versus National Institutes of Health (NIH) cyclophosphamide (CYC) regimen.: Methods: A ... ...

Abstract	Objective: We compared clinical characteristics and renal response in patients with childhood-onset proliferative lupus nephritis (LN) treated with the EuroLupus versus National Institutes of Health (NIH) cyclophosphamide (CYC) regimen. Methods: A retrospective cohort study was conducted at 11 pediatric centers in North America that reported using both CYC regimens. Data were extracted from the electronic medical record at baseline and 3, 6, and 12 months after treatment initiation with CYC. To evaluate the adjusted association between CYC regimen (EuroLupus vs NIH) and renal response over time, generalized estimating equations with a logit link were used. An interaction between time and CYC regimen was included, and a contrast between CYC regimens at 12 months was used to evaluate the primary outcome. Results: One hundred forty-five patients (58 EuroLupus, 87 NIH) were included. EuroLupus patients were on average older at the start of current CYC therapy, had longer disease duration, and more commonly had relapsed or refractory LN compared with the NIH group. After multivariable adjustment, there was no significant association between CYC regimen and achieving complete renal response at 12 months (odds ratio [OR] of response for the EuroLupus regimen, reference NIH regimen: 0.76; 95% confidence interval [CI] 0.29-1.98). There was also no significant association between CYC regimen and achieving at least a partial renal response at 12 months (OR 1.35, 95% CI 0.57-3.19). Conclusion: Our study failed to demonstrate a benefit of the NIH regimen over the EuroLupus CYC regimen in childhood-onset proliferative LN. However, future prospective outcome studies are needed.
Mesh-Begriff(e)	United States ; Child ; Humans ; Lupus Nephritis/drug therapy ; Immunosuppressive Agents ; Retrospective Studies ; Cyclophosphamide/therapeutic use ; Kidney
Chemische Substanzen	Immunosuppressive Agents ; Cyclophosphamide (8N3DW7272P)
Sprache	Englisch
Erscheinungsdatum	2024-01-11
Erscheinungsland	United States
Dokumenttyp	Journal Article
ZDB-ID	2756371-6
ISSN	2326-5205 ; 2326-5191
ISSN (online)	2326-5205
ISSN	2326-5191
DOI	10.1002/art.42725
Datenquelle	MEDical Literature Analysis and Retrieval System OnLINE

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