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1. The effects of early aggressive therapy in JIA: results of the TREAT study

Author

Wallace Carol A, Giannini Edward H, Spalding Steven J, Hashkes Philip J, O’Neil Kathleen M, Zeft Andrew S, Szer Ilona S, Ringold Sarah M, Brunner Hermine, Schanberg Laura E, Sundel Robert P, Milojevic Diana, Punaro Marilynn G, Chira Peter, Gottlieb Beth S, Higgins Gloria C, Ilowite Norman T, Kimura Yukiko, Huang Bin, and Lovell Daniel J

Subjects
Pediatrics, RJ1-570, Diseases of the musculoskeletal system, RC925-935
Published
2012
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2. Barriers to care in juvenile localized and systemic scleroderma: an exploratory survey study of caregivers’ perspectives

Author

Stubbs, Leigh A., Ferry, Andrew M., Guffey, Danielle, Loccke, Christina, Wade, Erin Moriarty, Pour, Pamela, Ardalan, Kaveh, Chira, Peter, Ganske, Ingrid M., Glaser, Daniel, Higgins, Gloria, Luca, Nadia, Moore, Katharine F., Sivaraman, Vidya, Stewart, Katie, Vasquez-Canizares, Natalia, Hunt, Raegan D., Maricevich, Renata S., Torok, Kathryn S., and Li, Suzanne C.

Published
2023
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3. Developing a standardized approach to the assessment of pain in children and youth presenting to pediatric rheumatology providers: a Delphi survey and consensus conference process followed by feasibility testing

Author

Stinson Jennifer N, Connelly Mark, Jibb Lindsay A, Schanberg Laura E, Walco Gary, Spiegel Lynn R, Tse Shirley ML, Chalom Elizabeth C, Chira Peter, and Rapoff Michael

Subjects
Pain, Rheumatic diseases, Pediatrics, Feasibility studies, Pain measurement, RJ1-570, Diseases of the musculoskeletal system, RC925-935
Abstract

Abstract Background Pain in children with rheumatic conditions such as arthritis is common. However, there is currently no standardized method for the assessment of this pain in children presenting to pediatric rheumatologists. A more consistent and comprehensive approach is needed to effectively assess, treat and monitor pain outcomes in the pediatric rheumatology population. The objectives of this study were to: (a) develop consensus regarding a standardized pain assessment tool for use in pediatric rheumatology practice and (b) test the feasibility of three mediums (paper, laptop, and handheld-based applications) for administration. Methods In Phase 1, a 2-stage Delphi technique (pediatric rheumatologists and allied professionals) and consensus meeting (pediatric pain and rheumatology experts) were used to develop the self- and proxy-report pain measures. In Phase 2, 24 children aged 4-7 years (and their parents), and 77 youth, aged 8-18 years, with pain, were recruited during routine rheumatology clinic appointments and completed the pain measure using each medium (order randomly assigned). The participant's rheumatologist received a summary report prior to clinical assessment. Satisfaction surveys were completed by all participants. Descriptive statistics were used to describe the participant characteristics using means and standard deviations (for continuous variables) and frequencies and proportions (for categorical variables) Results Completing the measure using the handheld device took significantly longer for youth (M = 5.90 minutes) and parents (M = 7.00 minutes) compared to paper (M = 3.08 and 2.28 minutes respectively p = 0.001) and computer (M = 3.40 and 4.00 minutes respectively; p < 0.001). There was no difference in the number of missed responses between mediums for children or parents. For youth, the number of missed responses varied across mediums (p = 0.047) with the greatest number of missed responses occurring with the handheld device. Most children preferred the computer (65%, p = 0.008) and youth reported no preference between mediums (p = 0.307). Most physicians (60%) would recommend the computer summary over the paper questionnaire to a colleague. Conclusions It is clinically feasible to implement a newly developed consensus-driven pain measure in pediatric rheumatology clinics using electronic or paper administration. Computer-based administration was most efficient for most users, but the medium employed in practice may depend on child age and economic and administrative factors.

Published
2012
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4. Multisite Randomized Clinical Trial Evaluating an Online Self-Management Program for Adolescents With Juvenile Idiopathic Arthritis.

Author

Connelly, Mark, Schanberg, Laura E, Ardoin, Stacy, Blakley, Michael, Carrasco, Ruy, Chira, Peter, Hayward, Kristen, Ibarra, Maria, Kimura, Yukiko, Kingsbury, Daniel J, Klein-Gitelman, Marisa S, Lawson, Erica, and Stinson, Jennifer

Subjects
Mind and Body, Arthritis, Clinical Trials and Supportive Activities, Autoimmune Disease, Pediatric, Behavioral and Social Science, Pain Research, Clinical Research, Chronic Pain, Management of diseases and conditions, 7.1 Individual care needs, Inflammatory and immune system, Quality Education, Adolescent, Arthralgia, Arthritis, Juvenile, Child, Female, Humans, Male, Patient Education as Topic, Program Evaluation, Quality of Life, Self-Management, Telemedicine, eHealth, juvenile idiopathic arthritis, pain, quality of life, randomized controlled trial, Psychology, Developmental & Child Psychology
Abstract

ObjectiveTo determine the efficacy in improving pain and health-related quality of life (HRQOL) of an online self-management program for adolescents with juvenile idiopathic arthritis (JIA).MethodsYouth ages 12-18 years with JIA were recruited from 10 rheumatology clinics across the United States and randomized to complete an online self-management program (n = 144) or an online disease education program (n = 145). Participants in the self-management group worked through multimedia-based modules comprising psychoeducation, training in cognitive-behavioral coping skills and stress management, and other self-management topics over a 12-week period. Participants in the control group viewed a series of preselected quality educational websites about JIA over the same interval. Online content for both groups was made available in English and Spanish to facilitate inclusion of Hispanic participants. Blinded assessment of main outcomes (pain intensity, pain interference, and HRQOL) and process outcomes (disease knowledge, self-efficacy, pain coping, and emotional adjustment) occurred at baseline, posttreatment, and at 6- and 12-month postrandomization follow-up visits.ResultsParticipants on average demonstrated significant improvements over the study period in the main outcomes, with no significant group differences in the degree of improvement. Effect sizes for these improvements were small. The amount of improvement in self-efficacy, emotional avoidance coping, disease knowledge, and emotional functioning in part predicted improvement in pain and HRQOL outcomes.ConclusionsPrimarily self-directed online self-management training and online disease education comparably and modestly improve pain and HRQOL in youth with JIA.

Published
2019

6. Atherosclerosis Progression in the APPLE Trial Can Be Predicted in Young People With Juvenile‐Onset Systemic Lupus Erythematosus Using a Novel Lipid Metabolomic Signature.

Author

Peng, Junjie, Dönnes, Pierre, Ardoin, Stacy P., Schanberg, Laura E., Lewandowski, Laura, Ardoin, Stacy, Dewitt, Esi Morgan, Rabinovich, C. Egla, Ellis, Janet, Mieszkalski, Kelly, Wootton, Janet, Chira, Peter, Hsu, Joyce, Lee, Tzielan, Sandborg, Christy, Perea, Jan, Gottlieb, Beth, Irigoyen, Patricia, Luftig, Jennifer, and Siddiqi, Shaz

Subjects
LIPID metabolism, ATHEROSCLEROSIS risk factors, ATHEROSCLEROSIS prevention, DISEASE progression, BIOMARKERS, CARDIOVASCULAR diseases risk factors, CAROTID intima-media thickness, ATORVASTATIN, ATHEROSCLEROSIS, RISK assessment, TREATMENT effectiveness, RANDOMIZED controlled trials, COMPARATIVE studies, DESCRIPTIVE statistics, SYSTEMIC lupus erythematosus, DISEASE complications, CHILDREN, ADOLESCENCE
Abstract

Objective: Patients with juvenile‐onset systemic lupus erythematosus (JSLE) have increased atherosclerosis risk. This study investigated novel atherosclerosis progression biomarkers in the Atherosclerosis Prevention in Pediatric Lupus Erythematosus (APPLE) trial, the largest investigator‐led randomized control trial of atorvastatin versus placebo for atherosclerosis progression in JSLE, using carotid intima‐media thickness (CIMT) as the primary outcome. Methods: Unsupervised clustering of baseline CIMT and CIMT progression over 36 months was used to stratify patients with JSLE. Disease characteristics, cardiovascular risk scores, and baseline serum metabolome were investigated in CIMT‐stratified patients. Machine learning techniques were used to identify and validate a serum metabolomic signature of CIMT progression. Results: Baseline CIMT stratified patients with JSLE (N = 151) into three groups with distinct high, intermediate, and low CIMT trajectories irrespective of treatment allocation, despite most patients having low cardiovascular disease risk based on recommended assessment criteria. In the placebo group (n = 60), patients with high versus low CIMT progression had higher total (P = 0.001) and low‐density lipoprotein (LDL) (P = 0.002) cholesterol levels, although within the reference range. Furthermore, a robust baseline metabolomic signature predictive of high CIMT progression was identified in the placebo arm (area under the curve, 80.7%). Patients treated with atorvastatin (n = 61) had reduced LDL cholesterol levels after 36 months, as expected; however, despite this, 36% still had high atherosclerosis progression, which was not predicted by metabolomic biomarkers, suggesting nonlipid drivers of atherosclerosis in JSLE with management implications for this subset of patients. Conclusion: Significant baseline heterogeneity and distinct subclinical atherosclerosis progression trajectories exist in JSLE. Metabolomic signatures can predict atherosclerosis progression in some patients with JSLE with relevance for clinical trial stratification. [ABSTRACT FROM AUTHOR]

Published
2024
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7. Barriers to Care in Juvenile Localized and Systemic Scleroderma: An Exploratory Survey Study of Caregivers’ Perspectives

Author

Stubbs, Leigh Anna, primary, Ferry, Andrew, additional, Guffey, Danielle, additional, Loccke, Christina, additional, Wade, Erin Moriarty, additional, Pour, Pamela, additional, Ardalan, Kaveh, additional, Chira, Peter, additional, Ganske, Ingrid M., additional, Glaser, Daniel, additional, Higgins, Gloria C, additional, Luca, Nadia, additional, Moore, Katharine F, additional, Sivaraman, Vidya, additional, Stewart, Katie, additional, Vasquez-Canizares, Natalia, additional, Hunt, Raegan D., additional, Maricevich, Renata S., additional, Torok, Kathryn S., additional, and Li, Suzanne C., additional

Published
2023
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8. Adolescents' and Young Adults' Recommendations for Implementing Healthcare Transition in Rheumatology: A Mixed Methods Study.

Author

Carandang, Kristine, Wells, Courtney K., Guglielmo, Dana, Melcher, Katelyn, Trimble, Meghan, Ardoin, Stacy P., and Chira, Peter

Subjects
YOUNG adults, TRANSITIONAL care, PATIENT portals, TEENAGERS, RHEUMATOLOGY
Abstract

Objective: The goal was to elicit adolescents' and young adults' (AYAs) perspectives about how to implement the Six Core Elements of Healthcare Transition within rheumatology care. Methods: AYAs (ages 16–28 years old) with self‐reported rheumatic conditions were recruited through patient organizations and social media. In Phase One (qualitative [QUAL]), 90‐minute focus groups were facilitated to elicit AYAs' reactions to Six Core Elements content. In Phase Two (quantitative; QUAN), a national survey was conducted to determine generalizability of recommendations extracted from Phase One. Mixed methods analyses were conducted by a multidisciplinary team of social science researchers, pediatric rheumatologists, and patients. Results: Although focus group participants (n = 39) were previously unfamiliar with the Six Core Elements, they reacted favorably to its format and content. Participants provided suggestions for how to logistically execute each component in the clinic. Additionally, 3 overarching recommendations emerged that focused on motivating AYAs to engage: 1) frame health care transition as an opportunity for empowerment; 2) implement a structured education plan; and 3) consider the role of parents. In line with qualitative findings, survey participants (n = 137) reported that they would prefer to learn most transitional skills from and discuss developmentally specific topics with their rheumatology team. Participants reported they would likely complete programs to learn transitional skills from allied professionals, via patient portals, or in group settings. Conclusion: Incorporating patient perspectives into research and clinical practice is an opportunity to strengthen educational programs. AYAs emphasized the importance of gaining independence and becoming empowered through the health care transition process with structured support from their rheumatology teams. [ABSTRACT FROM AUTHOR]

Published
2023
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12. American College of Rheumatology Provisional Criteria for Clinically Relevant Improvement in Children and Adolescents With Childhood-Onset Systemic Lupus Erythematosus

Author

Brunner, Hermine I, Holland, Michael J, Beresford, Michael W, Ardoin, Stacy P, Appenzeller, Simone, Silva, Clovis A, Flores, Francisco, Goilav, Beatrice, Aydin, Pinar Ozge Avar, Wenderfer, Scott E, Levy, Deborah M, Ravelli, Angelo, Khubchandani, Raju, Avcin, Tadej, Klein-Gitelman, Marisa S, Ruperto, Nicolino, Feldman, Brian M, Ying, Jun, Battagliotti, Cristina, Brusco, Maria Isabel, Cuttica, Ruben, De Cunto, Carmen, Espada, Graciela, Farfan, Maximiliano, Garay, Stella, Marcantoni, Maria, Marcela, Alvarez, Meiorin, Silvia, Rama, Maria Elena, Russo, Ricardo, Walsh, Carolina Torre, Zamparo, Celso, Adib, Navid, Akikusa, Jonathan, Boros, Christina, Lee, Senq J, Mckay, Damien, Piper, Susan, Joos, Rik, Bica, Blanca, Campos, Leonardo, Cavalcanti, Andre, do Prado, Rogerio, Donner-Maliki, Amanda, Fernandes, Taciana, Fonseca, Adriana, de Almeida, Rozana Gasparello, Guariento, Andressa, Gusman, Catherine, Fiorot, Fernanda Jusan, Oliveira, Sheila Knupp, Len, Claudio, Campos, Lucia M Arruda, Machado, Sandra, Marques, Luciana, de Carvalho, Luciana Martins, Moulin, Rodrigo, Pedroso, Soraya, Pileggi, Gecilmara, Romanelli, Paulo Roberto S, Saad-Magalhaes, Claudia, Sakamoto, Ana, Santos, Maria Carolina, Silva, Marco Felipe, Spelling, Paulo, Sztajnbok, Flavio, Terreri, Maria, Cabral, David, Chedeville, Gaelle, Ellsworth, Janet, Huber, Adam, Tucker, Lori, Houghton, Kristin, Borzutzky, Arturo, Ladino, Mabel, Norambuena, Ximena, Eraso, Ruth, Mosquera, Angela, Velasquez, Monica, Harjacek, Miroslav, Jelusic, Marija, Hermosilla, Cecilia Coto, Dolezalova, Pavla, Nielsen, Susan, Tineo, Carmen, Alegria, Mauricio, Dressler, Frank, Foell, Dirk, Ganser, Gerd, Hinze, Claas, Hufnagel, Markus, Lutz, Thomas, Trauzeddel, Ralf, Boiu, Sorina, Trachana, Maria, Tsitsami, Elena, Cifuentes, Mayra, Orban, Ilonka, Aggarwal, Amita, Sawhney, Sujata, Aviel, Yonatan Butbul, Cimaz, Rolando, Maggio, Maria Cristina, Rumba-Rozenfelde, Ingrid, Hashad, Soad, Lim, Sern Chin, Abud, Carlos, Burgos-Vargas, Ruben, Carreno-Manjarrez, Roberto, Enciso Pelaez, Sandra, Hernandez-Huirache, Hayde, Maldonado Velazquez, Rocio, Orozco, Javier, Rodriguez-Lozano, Ana Luisa, Rojas Pacheco, Omar Ernesto, Suarez Larios, Luz Maria, Vega, Gabriel, Ramirez Miramontes, Julia Veronica, Ruiz Lopez, Ivon Karina, Kamphuis, Sylvia, Schonenberg-Meinema, Dieneke, Concannon, Anthony, Yan, Jaqueline, Jaime, Martha Jarquin, Al Abrawi, Safiya, Vega, Cynthia, Lopez-Benitez, Jorge, Estrella, Amparo Ibanez, Miraval, Tatiana, Dans, Leonia, Kimseng, Karen Joy, Opoka-Winiarska, Violetta, Rutkowska-Sak, Lidia, Smolewska, Elzbieta, Conde, Marta, Guedes, Margarida, del Valle, Enid, Quintero-Del Rio, Ana, Ailioaie, Constantin, Sparchez, Mihaela, Alekseeva, Ekaterina, Keltsev, Vladimir, Al-Mayouf, Sulaiman, Asiri, Abdurhman, Suwairi, Wafaa, Susic, Gordana, Vijatov-Djuric, Gordana, Ang, Elizabeth, Arkachaisri, Thaschawee, Boteanu, Alina-Lucica, Lopez-Robledillo, Juan Carlos, San Ildefonso, Marta Medrano, Modesto, Consuelo, Calvo, Inmaculada, Sotoca-Fernandez, Jorge, Bolt, Isabel, Vilaiyuk, Soamarat, Al-Abadi, Eslam, Baildam, Eileen, Fotis, Lampros, Pain, Clare, Pilkington, Clarissa, Abulaban, Khalid, Barbar-Smiley, Fatima, Binstadt, Bryce, Bohnsack, John, Boneparth, Alexis, Brown, Diane, Chira, Peter, Cron, Randy, Dedeoglu, Fatma, Eberhard, Anne, Gedalia, Abraham, Grom, Alexei, Henrickson, Michael, Hom, Christine, Huggins, Jennifer, Jerath, Rita, Jones, Jordan, Jung, Lawrence, Kingsbury, Daniel, Lai, Jamie, Lovell, Daniel, Nanda, Kabita, Nocton, James, Olson, Judyann, O'Neil, Kathleen, Onel, Karen, Punaro, Lynn, Reiff, Andreas, Rouster-Stevens, Kelly, Ruth, Natasha, Schikler, Ken, Schmidt, Kara Murphy, Schulert, Grant, Shaham, Bracha, Singer, Nora, Smith, Judith, Sundel, Robert, Syverson, Grant, Vega-Fernandez, Patricia, Vehe, Richard, Wagner-Weiner, Linda, Cameto, Juan, Jurado, Rosario, Maldonado, Irama, Org, Paediat Rheumatology Int Trial, Collaborative, Pediat Rheumatology, AII - Inflammatory diseases, Graduate School, Paediatric Infectious Diseases / Rheumatology / Immunology, Brunner, Hermine I., Holland, Michael J., Beresford, Michael W., Ardoin, Stacy P., Appenzeller, Simone, Silva, Clovis A., Flores, Francisco, Goilav, Beatrice, Avar Aydin, Pinar Ozge, Wenderfer, Scott E., Levy, Deborah M., Ravelli, Angelo, Khubchandani, Raju, Avcin, Tadej, Klein-Gitelman, Marisa S., Ruperto, Nicolino, Feldman, Brian M., Ying, Jun, Battagliotti, Cristina, Brusco, Maria Isabel, Cuttica, Rubén, De Cunto, Carmen, Espada, Graciela, Farfan, Maximiliano, Garay, Stella, Marcantoni, Maria, Marcela, Alvarez, Meiorin, Silvia, Rama, Maria Elena, Russo, Ricardo, Torre Walsh, Carolina, Zamparo, Celso, Adib, Navid, Akikusa, Jonathan, Boros, Christina, Lee, Senq J., Mckay, Damien, Piper, Susan, Joos, Rik, Bica, Blanca, Campos, Leonardo, Cavalcanti, André, do Prado, Rogerio, Donner-Maliki, Amanda, Fernandes, Taciana, Fonseca, Adriana, Gasparello de Almeida, Rozana, Guariento, Andressa, Gusman, Catherine, Jusan Fiorot, Fernanda, Knupp Oliveira, Sheila, Len, Claudio, Arruda Campos, Lucia M., Machado, Sandra, Marques, Luciana, Martins de Carvalho, Luciana, Moulin, Rodrigo, Pedroso, Soraya, Pileggi, Gecilmara, Romanelli, Paulo Roberto S., Saad-Magalhaes, Claudia, Sakamoto, Ana, Santos, Maria Carolina, Silva, Marco Felipe, Spelling, Paulo, Sztajnbok, Slavio, Terreri, Maria, Cabral, David, Chédeville, Gaëlle, Ellsworth, Janet, Huber, Adam, Tucker, Lori, Houghton, Kristin, Borzutzky, Arturo, Ladino, Mabel, Norambuena, Ximena, Eraso, Ruth, Mosquera, Angela, Velasquez, Monica, Harjacek, Miroslav, Jelusic, Marija, Coto Hermosilla, Cecilia, Dolezalova, Pavla, Nielsen, Susan, Tineo, Carmen, Alegria, Mauricio, Dressler, Frank, Foell, Dirk, Ganser, Gerd, Hinze, Claa, Hufnagel, Marku, Lutz, Thoma, Trauzeddel, Ralf, Boiu, Sorina, Trachana, Maria, Tsitsami, Elena, Cifuentes, Mayra, Orbán, Ilonka, Aggarwal, Amita, Sawhney, Sujata, Butbul Aviel, Yonatan, Cimaz, Rolando, Maggio, Maria Cristina, Rumba-Rozenfelde, Ingrid, Hashad, Soad, Lim, Sern Chin, Abud, Carlo, Burgos-Vargas, Ruben, Carreño-Manjarrez, Roberto, Enciso Pelaez, Sandra, Hernandez-Huirache, Hayde, Maldonado Velázquez, Rocio, Orozco, Javier, Rodriguez-Lozano, Ana Luisa, Rojas Pacheco, Omar Ernesto, Suárez Larios, Luz Maria, Vega, Gabriel, Ramírez Miramontes, Julia Verónica, Ruíz Lopez, Ivon Karina, Kamphuis, Sylvia, Schonenberg-Meinema, Dieneke, Concannon, Anthony, Yan, Jaqueline, Jarquin Jaime, Martha, Al Abrawi, Safiya, Vega, Cynthia, Lopez-Benitez, Jorge, Ibáñez Estrella, Amparo, Miraval, Tatiana, Dans, Leonia, Kimseng, Karen Joy, Opoka-Winiarska, Violetta, Rutkowska-Sak, Lidia, Smolewska, Elzbieta, Conde, Marta, Guedes, Margarida, del Valle, Enid, Quintero-Del Rio, Ana, Ailioaie, Constantin, Sparchez, Mihaela, Alekseeva, Ekaterina, Keltsev, Vladimir, Al-Mayouf, Sulaiman, Asiri, Abdurhman, Suwairi, Wafaa, Susic, Gordana, Vijatov-Djuric, Gordana, Ang, Elizabeth, Arkachaisri, Thaschawee, Boteanu, Alina-Lucica, Lopez-Robledillo, Juan Carlo, Medrano San Ildefonso, Marta, Modesto, Consuelo, Calvo, Inmaculada, Sotoca-Fernandez, Jorge, Bolt, Isabel, Vilaiyuk, Soamarat, Al-Abadi, Eslam, Baildam, Eileen, Fotis, Lampro, Pain, Clare, Pilkington, Clarissa, Abulaban, Khalid, Barbar-Smiley, Fatima, Binstadt, Bryce, Bohnsack, John, Boneparth, Alexi, Brown, Diane, Chira, Peter, Cron, Randy, Dedeoglu, Fatma, Eberhard, Anne, Gedalia, Abraham, Grom, Alexei, Henrickson, Michael, Hom, Christine, Huggins, Jennifer, Jerath, Rita, Jones, Jordan, Jung, Lawrence, Kingsbury, Daniel, Lai, Jamie, Lovell, Daniel, Nanda, Kabita, Nocton, Jame, Olson, Judyann, O’Neil, Kathleen, Onel, Karen, Punaro, Lynn, Reiff, Andrea, Rouster-Stevens, Kelly, Ruth, Natasha, Schikler, Ken, Murphy Schmidt, Kara, Schulert, Grant, Shaham, Bracha, Singer, Nora, Smith, Judith, Sundel, Robert, Syverson, Grant, Vega-Fernandez, Patricia, Vehe, Richard, Wagner-Weiner, Linda, Cameto, Juan, Jurado, Rosario, Maldonado, Irama, and Pediatrics

Subjects
medicine.medical_specialty, Outcome Assessment, Health Care/methods, Adolescent, Delphi Technique, Antirheumatic Agents/therapeutic use, Severity of Illness Index, Child health, Article, 03 medical and health sciences, 0302 clinical medicine, Rheumatology, Internal medicine, Severity of illness, Outcome Assessment, Health Care, medicine, Pediatric nephrology, Humans, Lupus Erythematosus, Systemic, skin and connective tissue diseases, Child, 030203 arthritis & rheumatology, Systemic lupus erythematosus, Lupus erythematosus, Lupus Erythematosus, Receiver operating characteristic, business.industry, Consensus conference, childhood-onset systemic lupus erythematosus, Outcome Assessment, Health Care/methods, medicine.disease, Rheumatology,Systemic lupus erythematosus,autoimmune inflammatory disease, Antirheumatic Agents, Lupus Erythematosus, Systemic/drug therapy, Systemic/drug therapy, business, Algorithms
Abstract

OBJECTIVE: To develop a Childhood Lupus Improvement Index (CHILI) as a tool to measure response to therapy in childhood-onset systemic lupus erythematosus (cSLE), with a focus on clinically relevant improvement (CRIc SLE ). METHODS: Pediatric nephrology and rheumatology subspecialists (n = 213) experienced in cSLE management were invited to define CRIc SLE and rate a total of 433 unique patient profiles for the presence/absence of CRIc SLE . Patient profiles included the following cSLE core response variables (CRVs): global assessment of patient well-being (patient-global), physician assessment of cSLE activity (MD-global), disease activity index score (here, we used the Systemic Lupus Erythematosus Disease Activity Index), urine protein-to-creatinine ratio, and Child Health Questionnaire physical summary score. Percentage and absolute changes in these cSLE- CRVs (baseline versus follow-up) were considered in order to develop candidate algorithms and validate their performance (sensitivity, specificity, area under the receiver operating characteristic curve [AUC] ; range 0-1). RESULTS: During an international consensus conference, unanimous agreement on a definition of CRIc SLE was achieved ; cSLE experts (n = 13) concurred (100%) that the preferred CHILI algorithm considers absolute changes in the cSLE- CRVs. After transformation to a range of 0-100, a CHILI score of ≥54 had outstanding accuracy for identifying CRIc SLE (AUC 0.93, sensitivity 81.1%, and specificity 84.2%). CHILI scores also reflect minor, moderate, and major improvement for values exceeding 15, 68, and 92, respectively (all AUC ≥0.92, sensitivity ≥93.1%, and specificity ≥73.4%). CONCLUSION: The CHILI is a new, seemingly highly accurate index for measuring CRI in cSLE over time. This index is useful to categorize the degree of response to therapy in children and adolescents with cSLE.

Published
2019

14. Differences in Healthcare Transition Views, Practices, and Barriers Among North American Pediatric Rheumatology Clinicians From 2010 to 2018

Author

Johnson, Kiana R., primary, Edens, Cuoghi, additional, Sadun, Rebecca E., additional, Chira, Peter, additional, Hersh, Aimee O., additional, Goh, Y. Ingrid, additional, Hui-Yuen, Joyce, additional, Singer, Nora G., additional, Spiegel, Lynn R., additional, Stinson, Jennifer N., additional, White, Patience H., additional, and Lawson, Erica, additional

Published
2021
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15. Trial of early aggressive therapy in polyarticular juvenile idiopathic arthritis

Author

Wallace, Carol A., Giannini, Edward H., Spalding, Steven J., Hashkes, Philip J., OʼNeil, Kathleen M., Zeft, Andrew S., Szer, Ilona S., Ringold, Sarah, Brunner, Hermine I., Schanberg, Laura E., Sundel, Robert P., Milojevic, Diana, Punaro, Marilynn G., Chira, Peter, Gottlieb, Beth S., Higgins, Gloria C., Ilowite, Norman T., Kimura, Yukiko, Hamilton, Stephanie, Johnson, Anne, Huang, Bin, and Lovell, Daniel J.

Published
2012
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17. Classification, presentation, and initial treatment of Wegenerʼs granulomatosis in childhood

Author

Cabral, David A., Uribe, América G., Benseler, Susanne, OʼNeil, Kathleen M., Hashkes, Philip J., Higgins, Gloria, Zeft, Andrew S., Lovell, Daniel J., Kingsbury, Daniel J., Stevens, Anne, McCurdy, Deborah, Chira, Peter, Abramson, Leslie, Arkachaisri, Thaschawee, Campillo, Sarah, Eberhard, Anne, Hersh, Aimee O., Huber, Adam M., Kim, Susan, Klein-Gitelman, Marisa, Levy, Deborah M., Li, Suzanne C., Mason, Thomas, DeWitt, Esi Morgan, Muscal, Eyal, Nassi, Lorien, Reiff, Andreas, Schikler, Kenneth, Singer, Nora G., Wahezi, Dawn, and Woodward, Amy

Published
2009
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18. Multisite Randomized Clinical Trial Evaluating an Online Self-Management Program for Adolescents With Juvenile Idiopathic Arthritis

Author

Connelly, Mark, primary, Schanberg, Laura E, additional, Ardoin, Stacy, additional, Blakley, Michael, additional, Carrasco, Ruy, additional, Chira, Peter, additional, Hayward, Kristen, additional, Ibarra, Maria, additional, Kimura, Yukiko, additional, Kingsbury, Daniel J, additional, Klein-Gitelman, Marisa S, additional, Lawson, Erica, additional, and Stinson, Jennifer, additional

Published
2018
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19. USAdult Rheumatologists’ Perspectives on the Transition Process for Young Adults With Rheumatic Conditions

Author

Zisman, Devy, Samad, Aaida, Ardoin, Stacy P., Chira, Peter, White, Patience, Lavi, Idit, Scheven, Emily, Lawson, Erica F., Hing, Melinda, and Mellins, Elizabeth D.

Abstract

To assess the attitudes and common practices of adult rheumatologists in the USregarding health care transition (HCT) for young adults with rheumatic diseases. An anonymous online survey was sent to USadult rheumatologist members of the American College of Rheumatology to collect demographic data and information on attitudes and common practices regarding the transition process. Of 4,064 contacted rheumatologists, 203 (5%) completed the survey. Almost half of respondents (45.1%) were never trained in transition practices, and 74.7% were not familiar with the American Academy of Pediatrics/American Academy of Family Physicians/American College of Physicians Consensus Statement About Transitions for Youth with Special Healthcare Needs. Only 56.2% felt comfortable caring for former pediatric patients. The vast majority of respondents (90.7%) did not have a multidisciplinary transition team, and 37% did not have a plan for transitioning pediatric patients into their practice. Most adult rheumatologists were unsatisfied with the current transition process (92.9%), due to insufficient resources, personnel (91.1%), and time in clinic (86.9%). They also were unsatisfied with referral data received concerning previous treatments (48.9%), hospitalization history (48%), disease activity index (45.1%), medical history summary (43.9%), comorbidities (36.4%), medication list (34.1%), and disease classification (32.6%). Three major barriers to HCTwere lack of insurance reimbursement (33.7%), knowledge about community resources (30.8%), and lapses in care between primary provider and specialist (27.8%). This survey identified substantial gaps in knowledge and resources regarding HCTfor young adults with rheumatic diseases. These may be best addressed by further training, research, dedicated resources, adequate payment, and practice guidelines.

Published
2020
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22. Clinically Inactive Disease in a Cohort of Children with New-onset Polyarticular Juvenile Idiopathic Arthritis Treated with Early Aggressive Therapy: Time to Achievement, Total Duration, and Predictors

Author

Wallace, Carol A., primary, Giannini, Edward H., additional, Spalding, Steven J., additional, Hashkes, Philip J., additional, O’Neil, Kathleen M., additional, Zeft, Andrew S., additional, Szer, Ilona S., additional, Ringold, Sarah, additional, Brunner, Hermine I., additional, Schanberg, Laura E., additional, Sundel, Robert P., additional, Milojevic, Diana S., additional, Punaro, Marilynn G., additional, Chira, Peter, additional, Gottlieb, Beth S., additional, Higgins, Gloria C., additional, Ilowite, Norman T., additional, Kimura, Yukiko, additional, Johnson, Anne, additional, Huang, Bin, additional, and Lovell, Daniel J., additional

Published
2014
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25. The effects of early aggressive therapy in JIA: results of the TREAT study

Author

Wallace, Carol A, Wallace, Carol A, Giannini, Edward H, Spalding, Steven J, Hashkes, Philip J, O’Neil, Kathleen M, Zeft, Andrew S, Szer, Ilona S, Ringold, Sarah M, Brunner, Hermine, Schanberg, Laura E, Sundel, Robert P, Milojevic, Diana, Punaro, Marilynn G, Chira, Peter, Gottlieb, Beth S, Higgins, Gloria C, Ilowite, Norman T, Kimura, Yukiko, Huang, Bin, Lovell, Daniel J, Wallace, Carol A, Wallace, Carol A, Giannini, Edward H, Spalding, Steven J, Hashkes, Philip J, O’Neil, Kathleen M, Zeft, Andrew S, Szer, Ilona S, Ringold, Sarah M, Brunner, Hermine, Schanberg, Laura E, Sundel, Robert P, Milojevic, Diana, Punaro, Marilynn G, Chira, Peter, Gottlieb, Beth S, Higgins, Gloria C, Ilowite, Norman T, Kimura, Yukiko, Huang, Bin, and Lovell, Daniel J

Published
2012

26. Do Adult Disease Severity Subclassifications Predict Use of Cyclophosphamide in Children with ANCA-associated Vasculitis? An Analysis of ARChiVe Study Treatment Decisions

Author

MORISHITA, KIMBERLY, primary, GUZMAN, JAIME, additional, CHIRA, PETER, additional, MUSCAL, EYAL, additional, ZEFT, ANDREW, additional, KLEIN-GITELMAN, MARISA, additional, URIBE, AMERICA G., additional, ABRAMSON, LESLIE, additional, BENSELER, SUSANNE M., additional, EBERHARD, ANNE, additional, EDE, KALEO, additional, HASHKES, PHILIP J., additional, HERSH, AIMEE O., additional, HIGGINS, GLORIA, additional, IMUNDO, LISA F., additional, JUNG, LAWRENCE, additional, KIM, SUSAN, additional, KINGSBURY, DANIEL J., additional, LAWSON, ERICA F., additional, LEE, TZIELAN, additional, LI, SUZANNE C., additional, LOVELL, DANIEL J., additional, MASON, THOMAS, additional, McCURDY, DEBORAH, additional, O’NEIL, KATHLEEN M., additional, PUNARO, MARILYNN, additional, RAMSEY, SUZANNE E., additional, REIFF, ANDREAS, additional, ROSENKRANZ, MARGALIT, additional, SCHIKLER, KENNETH N., additional, SCUCCIMARRI, ROSIE, additional, SINGER, NORA G., additional, STEVENS, ANNE M., additional, van MATER, HEATHER, additional, WAHEZI, DAWN M., additional, WHITE, ANDREW J., additional, and CABRAL, DAVID A., additional

Published
2012
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27. Assessing the Performance of the Birmingham Vasculitis Activity Score at Diagnosis for Children with Antineutrophil Cytoplasmic Antibody-associated Vasculitis in A Registry for Childhood Vasculitis (ARChiVe)

Author

MORISHITA, KIMBERLY, primary, LI, SUZANNE C., additional, MUSCAL, EYAL, additional, SPALDING, STEVEN, additional, GUZMAN, JAIME, additional, URIBE, AMERICA, additional, ABRAMSON, LESLIE, additional, BASZIS, KEVIN, additional, BENSELER, SUSANNE, additional, BOWYER, SUZANNE, additional, CAMPILLO, SARAH, additional, CHIRA, PETER, additional, HERSH, AIMEE O., additional, HIGGINS, GLORIA, additional, EBERHARD, ANNE, additional, EDE, KALEO, additional, IMUNDO, LISA, additional, JUNG, LAWRENCE, additional, KIM, SUSAN, additional, KINGSBURY, DANIEL J., additional, KLEIN-GITELMAN, MARISA, additional, LAWSON, ERICA F., additional, LOVELL, DANIEL J., additional, MASON, THOMAS, additional, McCURDY, DEBORAH, additional, NANDA, KABITA, additional, NASSI, LORIEN, additional, O’NEIL, KATHLEEN M., additional, RABINOVICH, EGLA, additional, RAMSEY, SUZANNE E., additional, REIFF, ANDREAS, additional, ROSENKRANZ, MARGALIT, additional, SCHIKLER, KENNETH, additional, STEVENS, ANNE, additional, WAHEZI, DAWN, additional, and CABRAL, DAVID A., additional

Published
2012
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30. Increased Sensitivity of the European Medicines Agency Algorithm for Classification of Childhood Granulomatosis with Polyangiitis.

Author

URIBE, AMÉRICA G., HUBER, ADAM M., KIM, SUSAN, O'NEIL, KATHLEEN M., WAHEZI, DAWN M., ABRAMSON, LESLIE, BASZIS, KEVIN, BENSELER, SUSANNE M., BOWYER, SUZANNE L., CAMPILLO, SARAH, CHIRA, PETER, HERSH, AIMEE O., HIGGINS, GLORIA C., EBERHARD, ANNE, EDE, KALEO, IMUNDO, LISA F., JUNG, LAWRENCE, KINGSBURY, DANIEL J., KLEIN-GITELMAN, MARISA, and LAWSON, ERICA F.

Published
2012
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