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The accumulation of multiple adverse social determinants of health is linked to worse disease at initial presentation and worse disease activity over time in children with rheumatologic conditions, according to findings presented at the annual scientific meeting of the Childhood Arthritis and Rheumatology Research Alliance.
One study revealed that cumulative factors conferring social disadvantage progressively increased the odds of active disease and functional disability in children with juvenile idiopathic arthritis (JIA). Another study similarly found that children with lupus living in neighborhoods with comparatively fewer resources for childhood opportunity had worse disease at presentation and greater disease activity over follow-up.
, William Daniel Soulsby, MD, of the University of California San Francisco, told attendees in his presentation of data from the JIA study.
“Most prior studies have analyzed such determinants as independent risk factors,” Dr. Soulsby said. “However, individuals experiencing social disadvantage often face multiple social hardships that rarely act in isolation; studying these factors independently may miss underlying disparities.”
Stacy P. Ardoin, MD, MSc, professor of pediatric and adult rheumatology at Nationwide Children’s Hospital and The Ohio State University in Columbus, and vice president of CARRA, did not find the results of Soulsby’s study surprising, but she said they do “provide important confirmation of our growing understanding of the impact of social determinants of health on the outcomes of children and adolescents with chronic disease like juvenile idiopathic arthritis.” She added: “In medicine, we often think about the bench, the bedside, and the clinic, but this study tells us that if we want to improve outcomes for our patients, we also need to think about the ‘backyard,’ too.”
Social Disadvantage With JIA
Dr. Soulsby’s team adopted an approach similar to that of a recent National Survey of Children’s Health analysis that used a combined scoring system to calculate cumulative social disadvantage. The researchers used income level, insurance status, and education level to capture individual factors related to disadvantage and then an area deprivation index (ADI) to capture community factors. While they were unable to use any variables specific to societal factors, they included race, which is relevant at all three levels.
The cohort included 9612 patients in the CARRA Registry from July 2015 to January 2022. They included all patients who had a JIA diagnosis with onset before age 16 and at least one visit with a complete clinical Juvenile Arthritis Disease Activity Score (JADAS) score. Most of the patients (70%) were female, with an average age at enrollment of 11 and a mean time to diagnosis of 10.6 months.
Most of the patients had oligoarthritis (35.5%) or rheumatoid factor–negative polyarthritis (29.4%), followed by enthesitis-related arthritis (10.5%) and then other forms. A total of 4% of patients had a secondary rheumatologic condition. Most of the patients were White (74.9%), with 3.9% Black, 7.6% Hispanic, and 6.5% of more than one race. ADI data were missing for 17.2% of patients.
The researchers assigned a score to each patient that could add up to a maximum of 3. They received 1 point for an annual household income below $50,000, 1 point for having public insurance or no insurance, and 1 point for their guardian having no more than a high school education. Patients with a score of 0 comprised 60.9% of the patients, while 21.3% had a score of 1, 12.9% had a score of 2, and 4.9% had a score of 3.
Just over a quarter of the patients (26.3%) were underinsured, 19.1% were low income, and 16.4% had caregivers with a high school education or less. However, income level was unknown for 24.6% of patients, and guardians’ education level was unknown for 15.7% of patients.
The primary outcomes were the odds of active disease as based on clinical JADAS (at least a 1.1 score for oligoarticular JIA and more than 2.5 for all other subtypes) and odds of functional disability based on the Childhood Health Assessment Questionnaire (CHAQ). Adjustments were made for sex, race/ethnicity, age at enrollment, time to diagnosis, ADI, JIA category, presence of secondary rheumatologic disease, and medication (use of a conventional synthetic disease-modifying antirheumatic drug [DMARD], biologic DMARD, or small molecule drug).
Nearly half (48%) of patients had active disease during follow-up, with an average clinical JADAS score of 4 from the whole cohort. Compared with children with a cumulative disadvantage score of 0, each additional point on the clinical JADAS resulted in significantly increased odds of active disease. Those with the highest score of 3 were twice as likely to have active disease (adjusted odds ratio [aOR], 2.05; P < .001) as those with a score of 0, but those with a score of 1 (aOR, 1.36; P < .001) or 2 (aOR, 1.86; P < .001) were also more likely to have active disease. Other significant independent predictors of active arthritis included being of Black race (aOR, 1.55) or more than one race (aOR, 1.31).
Each of the scored factors also independently increased the likelihood of active disease by similar amounts: 1.69 higher odds for low household income on its own, 1.6 higher odds for public or no insurance, and 1.45 higher odds for high school education or less (all P < .001).
Similarly, odds of functional disability based on CHAQ increased significantly with each additional point. The mean CHAQ score was 0.31, and 46% of patients had functional disability during follow-up. Those with a cumulative social disadvantage score of 3 were three times as likely to have functional disability (aOR, 3.09; P < .001) as those with a score of 0. Those with a score of 1 (aOR, 1.82) or 2 (aOR, 2.81) were also more likely to have functional disability (P < .001). Again, Black individuals (aOR, 2.09) or those of mixed race (aOR, 1.78) had greater odds of functional disability (P < .001).
The independent factor most associated with increased odds of functional disability was a household income below $50,000 a year (OR, 3.03; P < .001), followed by having public or no insurance (OR, 2.57) or a caregiver with no more than a high school education (OR, 1.98). Dr. Soulsby noted that their study was limited by the missing data and may oversimplify the relationships between social determinants of health.
Overall, however, the findings revealed both the importance of social risk screening in the pediatric rheumatology clinic and the coupling of that screening with individual level support for patients, Dr. Soulsby said.
“This study did a great job of harnessing the power of the CARRA Registry,” said Dr. Ardoin, who was not involved in the research. “These findings underscore how important it is for all clinicians, including pediatric rheumatologists, to evaluate every child for social risks of poor outcomes,” she said.
One take-home message from the findings is that once pediatric rheumatologists identify social risks for poor outcomes in their patients, they can “consult with social workers and connect families with community resources in an effort to ameliorate social deprivation.”
Childhood Lupus and Reduced Childhood Opportunity
In a similar study looking at children with childhood-onset lupus, researchers similarly identified the way that compounding social determinants of health were linked to greater disease activity.
“We know that structural racism segregates children from historically marginalized groups into different neighborhoods with lower childhood opportunity,” Joyce C. Chang, MD, of Boston Children’s Hospital, told attendees. “When we talk about child opportunity, we’re really describing all of the resources and conditions that helped to promote healthy childhood development,” including factors related to education, physical health, the built environment, and social and economic security, she said.
Dr. Chang and her colleagues therefore assessed the relationship between a 29-indicator Child Opportunity Index for patients with childhood-onset lupus and the severity of their disease presentation and activity over time. They determined the Child Opportunity Index for different neighborhoods and assessed the amount of racial residential segregation around the three institutions involved in the study. Severity of lupus presentation was based on the need for intensive care unit admission or dialysis or a Systemic Lupus Erythematosus Disease Activity Index 2000 (SLEDAI-2K) score of 10 or higher. Disease activity over time was based on the SLEDAI-2K score.
The patient population included 553 patients with childhood-onset lupus from three institutions: Boston Children’s Hospital, Lurie Children’s Hospital of Chicago, and Children’s of Alabama in Birmingham, Alabama. Across the full population, 30% of the patients were Black and 30% were Hispanic, but the distribution of race and ethnicity varied by institution. Most of the Black patients, for example, were at Children’s of Alabama (59%), while 43% of the Hispanic patients were at Lurie. Across all the sites, 14% of the patients’ families preferred a non-English language as their first language, and just over half the patients (52%) had public insurance.
Dr. Chang did not have data yet from the Lurie and Alabama cohorts, so she presented preliminary data from the Boston Children’s cohort of 148 patients. In those results, children living in neighborhoods of low childhood opportunity had four times higher odds of presenting with severe disease than children living in neighborhoods of very high opportunity. Then the researchers factored in the location quotient that represented the magnitude of racial segregation in a residential area. In areas with high levels of Black vs White segregation, children were 2.5 times more likely to have a more severe initial disease presentation. However, there was not a significant difference in areas highly segregated between Hispanic and non-Hispanic residents.
After initial presentation, the data revealed a dose-dependent relationship between childhood opportunity and severity of disease activity based on SLEDAI-2K. After adjustment for insurance status, race, preferred language, age at disease onset, sex, major organ involvement, initial SLEDAI-2K score at presentation, and follow-up time, disease activity incrementally increased as childhood opportunity decreased (P < .001 for the trend).
The findings suggested that even in regions like Boston, where overall childhood opportunity is higher than the national average, “poor relative neighborhood opportunity is still associated with more severe lupus presentation, as well as higher lupus disease activity during follow-up,” Dr. Chang said. “Area-level conditions may drive inequitable outcomes at numerous points,” including initial access to subspecialty care and after establishing that care, she said.
Dr. Soulsby, Dr. Chang, and Dr. Ardoin reported having no disclosures. Dr. Soulsby’s research was funded by CARRA and the Arthritis Foundation, and Dr. Chang’s research was funded by CARRA.
A version of this article appeared on Medscape.com.
The accumulation of multiple adverse social determinants of health is linked to worse disease at initial presentation and worse disease activity over time in children with rheumatologic conditions, according to findings presented at the annual scientific meeting of the Childhood Arthritis and Rheumatology Research Alliance.
One study revealed that cumulative factors conferring social disadvantage progressively increased the odds of active disease and functional disability in children with juvenile idiopathic arthritis (JIA). Another study similarly found that children with lupus living in neighborhoods with comparatively fewer resources for childhood opportunity had worse disease at presentation and greater disease activity over follow-up.
, William Daniel Soulsby, MD, of the University of California San Francisco, told attendees in his presentation of data from the JIA study.
“Most prior studies have analyzed such determinants as independent risk factors,” Dr. Soulsby said. “However, individuals experiencing social disadvantage often face multiple social hardships that rarely act in isolation; studying these factors independently may miss underlying disparities.”
Stacy P. Ardoin, MD, MSc, professor of pediatric and adult rheumatology at Nationwide Children’s Hospital and The Ohio State University in Columbus, and vice president of CARRA, did not find the results of Soulsby’s study surprising, but she said they do “provide important confirmation of our growing understanding of the impact of social determinants of health on the outcomes of children and adolescents with chronic disease like juvenile idiopathic arthritis.” She added: “In medicine, we often think about the bench, the bedside, and the clinic, but this study tells us that if we want to improve outcomes for our patients, we also need to think about the ‘backyard,’ too.”
Social Disadvantage With JIA
Dr. Soulsby’s team adopted an approach similar to that of a recent National Survey of Children’s Health analysis that used a combined scoring system to calculate cumulative social disadvantage. The researchers used income level, insurance status, and education level to capture individual factors related to disadvantage and then an area deprivation index (ADI) to capture community factors. While they were unable to use any variables specific to societal factors, they included race, which is relevant at all three levels.
The cohort included 9612 patients in the CARRA Registry from July 2015 to January 2022. They included all patients who had a JIA diagnosis with onset before age 16 and at least one visit with a complete clinical Juvenile Arthritis Disease Activity Score (JADAS) score. Most of the patients (70%) were female, with an average age at enrollment of 11 and a mean time to diagnosis of 10.6 months.
Most of the patients had oligoarthritis (35.5%) or rheumatoid factor–negative polyarthritis (29.4%), followed by enthesitis-related arthritis (10.5%) and then other forms. A total of 4% of patients had a secondary rheumatologic condition. Most of the patients were White (74.9%), with 3.9% Black, 7.6% Hispanic, and 6.5% of more than one race. ADI data were missing for 17.2% of patients.
The researchers assigned a score to each patient that could add up to a maximum of 3. They received 1 point for an annual household income below $50,000, 1 point for having public insurance or no insurance, and 1 point for their guardian having no more than a high school education. Patients with a score of 0 comprised 60.9% of the patients, while 21.3% had a score of 1, 12.9% had a score of 2, and 4.9% had a score of 3.
Just over a quarter of the patients (26.3%) were underinsured, 19.1% were low income, and 16.4% had caregivers with a high school education or less. However, income level was unknown for 24.6% of patients, and guardians’ education level was unknown for 15.7% of patients.
The primary outcomes were the odds of active disease as based on clinical JADAS (at least a 1.1 score for oligoarticular JIA and more than 2.5 for all other subtypes) and odds of functional disability based on the Childhood Health Assessment Questionnaire (CHAQ). Adjustments were made for sex, race/ethnicity, age at enrollment, time to diagnosis, ADI, JIA category, presence of secondary rheumatologic disease, and medication (use of a conventional synthetic disease-modifying antirheumatic drug [DMARD], biologic DMARD, or small molecule drug).
Nearly half (48%) of patients had active disease during follow-up, with an average clinical JADAS score of 4 from the whole cohort. Compared with children with a cumulative disadvantage score of 0, each additional point on the clinical JADAS resulted in significantly increased odds of active disease. Those with the highest score of 3 were twice as likely to have active disease (adjusted odds ratio [aOR], 2.05; P < .001) as those with a score of 0, but those with a score of 1 (aOR, 1.36; P < .001) or 2 (aOR, 1.86; P < .001) were also more likely to have active disease. Other significant independent predictors of active arthritis included being of Black race (aOR, 1.55) or more than one race (aOR, 1.31).
Each of the scored factors also independently increased the likelihood of active disease by similar amounts: 1.69 higher odds for low household income on its own, 1.6 higher odds for public or no insurance, and 1.45 higher odds for high school education or less (all P < .001).
Similarly, odds of functional disability based on CHAQ increased significantly with each additional point. The mean CHAQ score was 0.31, and 46% of patients had functional disability during follow-up. Those with a cumulative social disadvantage score of 3 were three times as likely to have functional disability (aOR, 3.09; P < .001) as those with a score of 0. Those with a score of 1 (aOR, 1.82) or 2 (aOR, 2.81) were also more likely to have functional disability (P < .001). Again, Black individuals (aOR, 2.09) or those of mixed race (aOR, 1.78) had greater odds of functional disability (P < .001).
The independent factor most associated with increased odds of functional disability was a household income below $50,000 a year (OR, 3.03; P < .001), followed by having public or no insurance (OR, 2.57) or a caregiver with no more than a high school education (OR, 1.98). Dr. Soulsby noted that their study was limited by the missing data and may oversimplify the relationships between social determinants of health.
Overall, however, the findings revealed both the importance of social risk screening in the pediatric rheumatology clinic and the coupling of that screening with individual level support for patients, Dr. Soulsby said.
“This study did a great job of harnessing the power of the CARRA Registry,” said Dr. Ardoin, who was not involved in the research. “These findings underscore how important it is for all clinicians, including pediatric rheumatologists, to evaluate every child for social risks of poor outcomes,” she said.
One take-home message from the findings is that once pediatric rheumatologists identify social risks for poor outcomes in their patients, they can “consult with social workers and connect families with community resources in an effort to ameliorate social deprivation.”
Childhood Lupus and Reduced Childhood Opportunity
In a similar study looking at children with childhood-onset lupus, researchers similarly identified the way that compounding social determinants of health were linked to greater disease activity.
“We know that structural racism segregates children from historically marginalized groups into different neighborhoods with lower childhood opportunity,” Joyce C. Chang, MD, of Boston Children’s Hospital, told attendees. “When we talk about child opportunity, we’re really describing all of the resources and conditions that helped to promote healthy childhood development,” including factors related to education, physical health, the built environment, and social and economic security, she said.
Dr. Chang and her colleagues therefore assessed the relationship between a 29-indicator Child Opportunity Index for patients with childhood-onset lupus and the severity of their disease presentation and activity over time. They determined the Child Opportunity Index for different neighborhoods and assessed the amount of racial residential segregation around the three institutions involved in the study. Severity of lupus presentation was based on the need for intensive care unit admission or dialysis or a Systemic Lupus Erythematosus Disease Activity Index 2000 (SLEDAI-2K) score of 10 or higher. Disease activity over time was based on the SLEDAI-2K score.
The patient population included 553 patients with childhood-onset lupus from three institutions: Boston Children’s Hospital, Lurie Children’s Hospital of Chicago, and Children’s of Alabama in Birmingham, Alabama. Across the full population, 30% of the patients were Black and 30% were Hispanic, but the distribution of race and ethnicity varied by institution. Most of the Black patients, for example, were at Children’s of Alabama (59%), while 43% of the Hispanic patients were at Lurie. Across all the sites, 14% of the patients’ families preferred a non-English language as their first language, and just over half the patients (52%) had public insurance.
Dr. Chang did not have data yet from the Lurie and Alabama cohorts, so she presented preliminary data from the Boston Children’s cohort of 148 patients. In those results, children living in neighborhoods of low childhood opportunity had four times higher odds of presenting with severe disease than children living in neighborhoods of very high opportunity. Then the researchers factored in the location quotient that represented the magnitude of racial segregation in a residential area. In areas with high levels of Black vs White segregation, children were 2.5 times more likely to have a more severe initial disease presentation. However, there was not a significant difference in areas highly segregated between Hispanic and non-Hispanic residents.
After initial presentation, the data revealed a dose-dependent relationship between childhood opportunity and severity of disease activity based on SLEDAI-2K. After adjustment for insurance status, race, preferred language, age at disease onset, sex, major organ involvement, initial SLEDAI-2K score at presentation, and follow-up time, disease activity incrementally increased as childhood opportunity decreased (P < .001 for the trend).
The findings suggested that even in regions like Boston, where overall childhood opportunity is higher than the national average, “poor relative neighborhood opportunity is still associated with more severe lupus presentation, as well as higher lupus disease activity during follow-up,” Dr. Chang said. “Area-level conditions may drive inequitable outcomes at numerous points,” including initial access to subspecialty care and after establishing that care, she said.
Dr. Soulsby, Dr. Chang, and Dr. Ardoin reported having no disclosures. Dr. Soulsby’s research was funded by CARRA and the Arthritis Foundation, and Dr. Chang’s research was funded by CARRA.
A version of this article appeared on Medscape.com.
The accumulation of multiple adverse social determinants of health is linked to worse disease at initial presentation and worse disease activity over time in children with rheumatologic conditions, according to findings presented at the annual scientific meeting of the Childhood Arthritis and Rheumatology Research Alliance.
One study revealed that cumulative factors conferring social disadvantage progressively increased the odds of active disease and functional disability in children with juvenile idiopathic arthritis (JIA). Another study similarly found that children with lupus living in neighborhoods with comparatively fewer resources for childhood opportunity had worse disease at presentation and greater disease activity over follow-up.
, William Daniel Soulsby, MD, of the University of California San Francisco, told attendees in his presentation of data from the JIA study.
“Most prior studies have analyzed such determinants as independent risk factors,” Dr. Soulsby said. “However, individuals experiencing social disadvantage often face multiple social hardships that rarely act in isolation; studying these factors independently may miss underlying disparities.”
Stacy P. Ardoin, MD, MSc, professor of pediatric and adult rheumatology at Nationwide Children’s Hospital and The Ohio State University in Columbus, and vice president of CARRA, did not find the results of Soulsby’s study surprising, but she said they do “provide important confirmation of our growing understanding of the impact of social determinants of health on the outcomes of children and adolescents with chronic disease like juvenile idiopathic arthritis.” She added: “In medicine, we often think about the bench, the bedside, and the clinic, but this study tells us that if we want to improve outcomes for our patients, we also need to think about the ‘backyard,’ too.”
Social Disadvantage With JIA
Dr. Soulsby’s team adopted an approach similar to that of a recent National Survey of Children’s Health analysis that used a combined scoring system to calculate cumulative social disadvantage. The researchers used income level, insurance status, and education level to capture individual factors related to disadvantage and then an area deprivation index (ADI) to capture community factors. While they were unable to use any variables specific to societal factors, they included race, which is relevant at all three levels.
The cohort included 9612 patients in the CARRA Registry from July 2015 to January 2022. They included all patients who had a JIA diagnosis with onset before age 16 and at least one visit with a complete clinical Juvenile Arthritis Disease Activity Score (JADAS) score. Most of the patients (70%) were female, with an average age at enrollment of 11 and a mean time to diagnosis of 10.6 months.
Most of the patients had oligoarthritis (35.5%) or rheumatoid factor–negative polyarthritis (29.4%), followed by enthesitis-related arthritis (10.5%) and then other forms. A total of 4% of patients had a secondary rheumatologic condition. Most of the patients were White (74.9%), with 3.9% Black, 7.6% Hispanic, and 6.5% of more than one race. ADI data were missing for 17.2% of patients.
The researchers assigned a score to each patient that could add up to a maximum of 3. They received 1 point for an annual household income below $50,000, 1 point for having public insurance or no insurance, and 1 point for their guardian having no more than a high school education. Patients with a score of 0 comprised 60.9% of the patients, while 21.3% had a score of 1, 12.9% had a score of 2, and 4.9% had a score of 3.
Just over a quarter of the patients (26.3%) were underinsured, 19.1% were low income, and 16.4% had caregivers with a high school education or less. However, income level was unknown for 24.6% of patients, and guardians’ education level was unknown for 15.7% of patients.
The primary outcomes were the odds of active disease as based on clinical JADAS (at least a 1.1 score for oligoarticular JIA and more than 2.5 for all other subtypes) and odds of functional disability based on the Childhood Health Assessment Questionnaire (CHAQ). Adjustments were made for sex, race/ethnicity, age at enrollment, time to diagnosis, ADI, JIA category, presence of secondary rheumatologic disease, and medication (use of a conventional synthetic disease-modifying antirheumatic drug [DMARD], biologic DMARD, or small molecule drug).
Nearly half (48%) of patients had active disease during follow-up, with an average clinical JADAS score of 4 from the whole cohort. Compared with children with a cumulative disadvantage score of 0, each additional point on the clinical JADAS resulted in significantly increased odds of active disease. Those with the highest score of 3 were twice as likely to have active disease (adjusted odds ratio [aOR], 2.05; P < .001) as those with a score of 0, but those with a score of 1 (aOR, 1.36; P < .001) or 2 (aOR, 1.86; P < .001) were also more likely to have active disease. Other significant independent predictors of active arthritis included being of Black race (aOR, 1.55) or more than one race (aOR, 1.31).
Each of the scored factors also independently increased the likelihood of active disease by similar amounts: 1.69 higher odds for low household income on its own, 1.6 higher odds for public or no insurance, and 1.45 higher odds for high school education or less (all P < .001).
Similarly, odds of functional disability based on CHAQ increased significantly with each additional point. The mean CHAQ score was 0.31, and 46% of patients had functional disability during follow-up. Those with a cumulative social disadvantage score of 3 were three times as likely to have functional disability (aOR, 3.09; P < .001) as those with a score of 0. Those with a score of 1 (aOR, 1.82) or 2 (aOR, 2.81) were also more likely to have functional disability (P < .001). Again, Black individuals (aOR, 2.09) or those of mixed race (aOR, 1.78) had greater odds of functional disability (P < .001).
The independent factor most associated with increased odds of functional disability was a household income below $50,000 a year (OR, 3.03; P < .001), followed by having public or no insurance (OR, 2.57) or a caregiver with no more than a high school education (OR, 1.98). Dr. Soulsby noted that their study was limited by the missing data and may oversimplify the relationships between social determinants of health.
Overall, however, the findings revealed both the importance of social risk screening in the pediatric rheumatology clinic and the coupling of that screening with individual level support for patients, Dr. Soulsby said.
“This study did a great job of harnessing the power of the CARRA Registry,” said Dr. Ardoin, who was not involved in the research. “These findings underscore how important it is for all clinicians, including pediatric rheumatologists, to evaluate every child for social risks of poor outcomes,” she said.
One take-home message from the findings is that once pediatric rheumatologists identify social risks for poor outcomes in their patients, they can “consult with social workers and connect families with community resources in an effort to ameliorate social deprivation.”
Childhood Lupus and Reduced Childhood Opportunity
In a similar study looking at children with childhood-onset lupus, researchers similarly identified the way that compounding social determinants of health were linked to greater disease activity.
“We know that structural racism segregates children from historically marginalized groups into different neighborhoods with lower childhood opportunity,” Joyce C. Chang, MD, of Boston Children’s Hospital, told attendees. “When we talk about child opportunity, we’re really describing all of the resources and conditions that helped to promote healthy childhood development,” including factors related to education, physical health, the built environment, and social and economic security, she said.
Dr. Chang and her colleagues therefore assessed the relationship between a 29-indicator Child Opportunity Index for patients with childhood-onset lupus and the severity of their disease presentation and activity over time. They determined the Child Opportunity Index for different neighborhoods and assessed the amount of racial residential segregation around the three institutions involved in the study. Severity of lupus presentation was based on the need for intensive care unit admission or dialysis or a Systemic Lupus Erythematosus Disease Activity Index 2000 (SLEDAI-2K) score of 10 or higher. Disease activity over time was based on the SLEDAI-2K score.
The patient population included 553 patients with childhood-onset lupus from three institutions: Boston Children’s Hospital, Lurie Children’s Hospital of Chicago, and Children’s of Alabama in Birmingham, Alabama. Across the full population, 30% of the patients were Black and 30% were Hispanic, but the distribution of race and ethnicity varied by institution. Most of the Black patients, for example, were at Children’s of Alabama (59%), while 43% of the Hispanic patients were at Lurie. Across all the sites, 14% of the patients’ families preferred a non-English language as their first language, and just over half the patients (52%) had public insurance.
Dr. Chang did not have data yet from the Lurie and Alabama cohorts, so she presented preliminary data from the Boston Children’s cohort of 148 patients. In those results, children living in neighborhoods of low childhood opportunity had four times higher odds of presenting with severe disease than children living in neighborhoods of very high opportunity. Then the researchers factored in the location quotient that represented the magnitude of racial segregation in a residential area. In areas with high levels of Black vs White segregation, children were 2.5 times more likely to have a more severe initial disease presentation. However, there was not a significant difference in areas highly segregated between Hispanic and non-Hispanic residents.
After initial presentation, the data revealed a dose-dependent relationship between childhood opportunity and severity of disease activity based on SLEDAI-2K. After adjustment for insurance status, race, preferred language, age at disease onset, sex, major organ involvement, initial SLEDAI-2K score at presentation, and follow-up time, disease activity incrementally increased as childhood opportunity decreased (P < .001 for the trend).
The findings suggested that even in regions like Boston, where overall childhood opportunity is higher than the national average, “poor relative neighborhood opportunity is still associated with more severe lupus presentation, as well as higher lupus disease activity during follow-up,” Dr. Chang said. “Area-level conditions may drive inequitable outcomes at numerous points,” including initial access to subspecialty care and after establishing that care, she said.
Dr. Soulsby, Dr. Chang, and Dr. Ardoin reported having no disclosures. Dr. Soulsby’s research was funded by CARRA and the Arthritis Foundation, and Dr. Chang’s research was funded by CARRA.
A version of this article appeared on Medscape.com.
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This material may not be published, broadcast, copied, or otherwise reproduced or distributed without the prior written permission of Frontline Medical Communications Inc.</copyrightNotice> </rightsInfo> </provider> <abstract/> <metaDescription>The findings suggest that exposure to multiple disadvantaging social variables may be linked to worse outcomes than exposure to any single factor</metaDescription> <articlePDF/> <teaserImage/> <teaser>Children living in disadvantaged areas had higher rates of active disease in JIA and lupus, studies suggest.</teaser> <title>Multiple Social Disadvantages Linked to Progressively Worse JIA and Pediatric Lupus</title> <deck/> <disclaimer/> <AuthorList/> <articleURL/> <doi/> <pubMedID/> <publishXMLStatus/> <publishXMLVersion>1</publishXMLVersion> <useEISSN>0</useEISSN> <urgency/> <pubPubdateYear/> <pubPubdateMonth/> <pubPubdateDay/> <pubVolume/> <pubNumber/> <wireChannels/> <primaryCMSID/> <CMSIDs/> <keywords/> <seeAlsos/> <publications_g> <publicationData> <publicationCode>fp</publicationCode> <pubIssueName/> <pubArticleType/> <pubTopics/> <pubCategories/> <pubSections/> </publicationData> <publicationData> <publicationCode>im</publicationCode> <pubIssueName/> <pubArticleType/> <pubTopics/> <pubCategories/> <pubSections/> </publicationData> <publicationData> <publicationCode>rn</publicationCode> <pubIssueName/> <pubArticleType/> <pubTopics/> <pubCategories/> <pubSections/> </publicationData> </publications_g> <publications> <term>15</term> <term>21</term> <term canonical="true">26</term> </publications> <sections> <term canonical="true">39313</term> </sections> <topics> <term>290</term> <term>241</term> <term canonical="true">282</term> </topics> <links/> </header> <itemSet> <newsItem> <itemMeta> <itemRole>Main</itemRole> <itemClass>text</itemClass> <title>Multiple Social Disadvantages Linked to Progressively Worse JIA and Pediatric Lupus</title> <deck/> </itemMeta> <itemContent> <p>The accumulation of multiple adverse social determinants of health is linked to worse disease at initial presentation and worse disease activity over time in children with rheumatologic conditions, according to findings presented at the annual scientific meeting of the Childhood Arthritis and Rheumatology Research Alliance.</p> <p>One study revealed that cumulative factors conferring social disadvantage progressively increased the odds of active disease and functional disability in children with juvenile idiopathic arthritis (JIA). Another study similarly found that children with lupus living in neighborhoods with comparatively fewer resources for childhood opportunity had worse disease at presentation and greater disease activity over follow-up.<br/><br/><span class="tag metaDescription">The findings suggest that exposure to multiple disadvantaging social variables may be linked to worse outcomes than exposure to any single factor</span>, <a href="https://profiles.ucsf.edu/daniel.soulsby">William Daniel Soulsby, MD</a>, of the University of California San Francisco, told attendees in his presentation of data from the JIA study.<br/><br/>“Most prior studies have analyzed such determinants as independent risk factors,” Dr. Soulsby said. “However, individuals experiencing social disadvantage often face multiple social hardships that rarely act in isolation; studying these factors independently may miss underlying disparities.”<br/><br/><a href="https://www.nationwidechildrens.org/find-a-doctor/profiles/stacy-p-ardoin">Stacy P. Ardoin, MD, MSc</a>, professor of pediatric and adult rheumatology at Nationwide Children’s Hospital and The Ohio State University in Columbus, and vice president of CARRA, did not find the results of Soulsby’s study surprising, but she said they do “provide important confirmation of our growing understanding of the impact of social determinants of health on the outcomes of children and adolescents with chronic disease like juvenile idiopathic arthritis.” She added: “In medicine, we often think about the bench, the bedside, and the clinic, but this study tells us that if we want to improve outcomes for our patients, we also need to think about the ‘backyard,’ too.”<br/><br/></p> <h2>Social Disadvantage With JIA</h2> <p>Dr. Soulsby’s team adopted an approach similar to that of a recent National Survey of Children’s Health analysis that used a combined scoring system to calculate cumulative social disadvantage. The researchers used income level, insurance status, and education level to capture individual factors related to disadvantage and then an <a href="https://www.neighborhoodatlas.medicine.wisc.edu/">area deprivation index (ADI)</a> to capture community factors. While they were unable to use any variables specific to societal factors, they included race, which is relevant at all three levels.</p> <p>The cohort included 9612 patients in the CARRA Registry from July 2015 to January 2022. They included all patients who had a JIA diagnosis with onset before age 16 and at least one visit with a complete clinical Juvenile Arthritis Disease Activity Score (JADAS) score. Most of the patients (70%) were female, with an average age at enrollment of 11 and a mean time to diagnosis of 10.6 months.<br/><br/>Most of the patients had oligoarthritis (35.5%) or rheumatoid factor–negative polyarthritis (29.4%), followed by enthesitis-related arthritis (10.5%) and then other forms. A total of 4% of patients had a secondary rheumatologic condition. Most of the patients were White (74.9%), with 3.9% Black, 7.6% Hispanic, and 6.5% of more than one race. ADI data were missing for 17.2% of patients.<br/><br/>The researchers assigned a score to each patient that could add up to a maximum of 3. They received 1 point for an annual household income below $50,000, 1 point for having public insurance or no insurance, and 1 point for their guardian having no more than a high school education. Patients with a score of 0 comprised 60.9% of the patients, while 21.3% had a score of 1, 12.9% had a score of 2, and 4.9% had a score of 3.<br/><br/>Just over a quarter of the patients (26.3%) were underinsured, 19.1% were low income, and 16.4% had caregivers with a high school education or less. However, income level was unknown for 24.6% of patients, and guardians’ education level was unknown for 15.7% of patients.<br/><br/>The primary outcomes were the odds of active disease as based on clinical JADAS (at least a 1.1 score for oligoarticular JIA and more than 2.5 for all other subtypes) and odds of functional disability based on the Childhood Health Assessment Questionnaire (CHAQ). Adjustments were made for sex, race/ethnicity, age at enrollment, time to diagnosis, ADI, JIA category, presence of secondary rheumatologic disease, and medication (use of a conventional synthetic disease-modifying antirheumatic drug [DMARD], biologic DMARD, or small molecule drug).<br/><br/>Nearly half (48%) of patients had active disease during follow-up, with an average clinical JADAS score of 4 from the whole cohort. Compared with children with a cumulative disadvantage score of 0, each additional point on the clinical JADAS resulted in significantly increased odds of active disease. Those with the highest score of 3 were twice as likely to have active disease (adjusted odds ratio [aOR], 2.05; <em>P</em> < .001) as those with a score of 0, but those with a score of 1 (aOR, 1.36; <em>P</em> < .001) or 2 (aOR, 1.86; <em>P</em> < .001) were also more likely to have active disease. Other significant independent predictors of active arthritis included being of Black race (aOR, 1.55) or more than one race (aOR, 1.31).<br/><br/>Each of the scored factors also independently increased the likelihood of active disease by similar amounts: 1.69 higher odds for low household income on its own, 1.6 higher odds for public or no insurance, and 1.45 higher odds for high school education or less (all <em>P</em> < .001).<br/><br/>Similarly, odds of functional disability based on CHAQ increased significantly with each additional point. The mean CHAQ score was 0.31, and 46% of patients had functional disability during follow-up. Those with a cumulative social disadvantage score of 3 were three times as likely to have functional disability (aOR, 3.09; <em>P</em> < .001) as those with a score of 0. Those with a score of 1 (aOR, 1.82) or 2 (aOR, 2.81) were also more likely to have functional disability (<em>P</em> < .001). Again, Black individuals (aOR, 2.09) or those of mixed race (aOR, 1.78) had greater odds of functional disability (<em>P</em> < .001).<br/><br/>The independent factor most associated with increased odds of functional disability was a household income below $50,000 a year (OR, 3.03; <em>P</em> < .001), followed by having public or no insurance (OR, 2.57) or a caregiver with no more than a high school education (OR, 1.98). Dr. Soulsby noted that their study was limited by the missing data and may oversimplify the relationships between social determinants of health.<br/><br/>Overall, however, the findings revealed both the importance of social risk screening in the pediatric rheumatology clinic and the coupling of that screening with individual level support for patients, Dr. Soulsby said.<br/><br/>“This study did a great job of harnessing the power of the CARRA Registry,” said Dr. Ardoin, who was not involved in the research. “These findings underscore how important it is for all clinicians, including pediatric rheumatologists, to evaluate every child for social risks of poor outcomes,” she said.<br/><br/>One take-home message from the findings is that once pediatric rheumatologists identify social risks for poor outcomes in their patients, they can “consult with social workers and connect families with community resources in an effort to ameliorate social deprivation.”<br/><br/></p> <h2>Childhood Lupus and Reduced Childhood Opportunity</h2> <p>In a similar study looking at children with childhood-onset lupus, researchers similarly identified the way that compounding social determinants of health were linked to greater disease activity.</p> <p>“We know that structural racism segregates children from historically marginalized groups into different neighborhoods with lower childhood opportunity,” <a href="https://www.childrenshospital.org/directory/joyce-chang">Joyce C. Chang, MD</a>, of Boston Children’s Hospital, told attendees. “When we talk about child opportunity, we’re really describing all of the resources and conditions that helped to promote healthy childhood development,” including factors related to education, physical health, the built environment, and social and economic security, she said.<br/><br/>Dr. Chang and her colleagues therefore assessed the relationship between a 29-indicator <a href="https://data.diversitydatakids.org/dataset/coi20-child-opportunity-index-2-0-database">Child Opportunity Index</a> for patients with childhood-onset lupus and the severity of their disease presentation and activity over time. They determined the Child Opportunity Index for different neighborhoods and assessed the amount of racial residential segregation around the three institutions involved in the study. Severity of lupus presentation was based on the need for intensive care unit admission or dialysis or a Systemic Lupus Erythematosus Disease Activity Index 2000 (SLEDAI-2K) score of 10 or higher. Disease activity over time was based on the SLEDAI-2K score.<br/><br/>The patient population included 553 patients with childhood-onset lupus from three institutions: Boston Children’s Hospital, Lurie Children’s Hospital of Chicago, and Children’s of Alabama in Birmingham, Alabama. Across the full population, 30% of the patients were Black and 30% were Hispanic, but the distribution of race and ethnicity varied by institution. Most of the Black patients, for example, were at Children’s of Alabama (59%), while 43% of the Hispanic patients were at Lurie. Across all the sites, 14% of the patients’ families preferred a non-English language as their first language, and just over half the patients (52%) had public insurance.<br/><br/>Dr. Chang did not have data yet from the Lurie and Alabama cohorts, so she presented preliminary data from the Boston Children’s cohort of 148 patients. In those results, children living in neighborhoods of low childhood opportunity had four times higher odds of presenting with severe disease than children living in neighborhoods of very high opportunity. Then the researchers factored in the location quotient that represented the magnitude of racial segregation in a residential area. In areas with high levels of Black vs White segregation, children were 2.5 times more likely to have a more severe initial disease presentation. However, there was not a significant difference in areas highly segregated between Hispanic and non-Hispanic residents.<br/><br/>After initial presentation, the data revealed a dose-dependent relationship between childhood opportunity and severity of disease activity based on SLEDAI-2K. After adjustment for insurance status, race, preferred language, age at disease onset, sex, major organ involvement, initial SLEDAI-2K score at presentation, and follow-up time, disease activity incrementally increased as childhood opportunity decreased (<em>P</em> < .001 for the trend).<br/><br/>The findings suggested that even in regions like Boston, where overall childhood opportunity is higher than the national average, “poor relative neighborhood opportunity is still associated with more severe lupus presentation, as well as higher lupus disease activity during follow-up,” Dr. Chang said. “Area-level conditions may drive inequitable outcomes at numerous points,” including initial access to subspecialty care and after establishing that care, she said.<br/><br/>Dr. Soulsby, Dr. Chang, and Dr. Ardoin reported having no disclosures. Dr. Soulsby’s research was funded by CARRA and the Arthritis Foundation, and Dr. Chang’s research was funded by CARRA.<br/><br/></p> <p> <em>A version of this article appeared on <span class="Hyperlink"><a href="https://www.medscape.com/viewarticle/multiple-social-disadvantages-linked-progressively-worse-jia-2024a10005ny?src=">Medscape.com</a></span>.</em> </p> </itemContent> </newsItem> <newsItem> <itemMeta> <itemRole>teaser</itemRole> <itemClass>text</itemClass> <title/> <deck/> </itemMeta> <itemContent> </itemContent> </newsItem> </itemSet></root>
FROM CARRA 2024