Patient-Reported Outcomes Among Transition-Age Young Adults With Juvenile Idiopathic Arthritis in the Childhood Arthritis and Rheumatology Research Alliance Registry.

OBJECTIVE: To evaluate patient-reported care utilization and outcomes among young adults with juvenile idiopathic arthritis (JIA), including factors associated with complete transfer to adult rheumatology. METHODS: We included young adults with JIA enrolled in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry from 2015 to 2019 with age ≥ 18 years at their last clinical site visit. We used data from the CARRA Registry Long-term Follow-up program, which follows inactive CARRA Registry patients and collects patient-reported information through phone surveys. We compared the characteristics of respondents with complete and incomplete transfer to adult rheumatology care at their first Long-term Follow-up phone survey. RESULTS: We identified 540 young adults with JIA; 187 (35%) responded to the Long-term Follow-up phone survey. The 54% of respondents with complete transfer to adult rheumatology were slightly older and reported more self-assessed disease activity, morning stiffness, and pain compared to those with incomplete transfer. Biologic use was high at both timepoints and did not differ by transfer status. Patients who completed the transfer were more likely to have private insurance and be actively pursuing postsecondary education compared to those with an incomplete transfer. Across the cohort, 65% reported problems with pain or discomfort and 45% with anxiety or depression. CONCLUSION: Young adult respondents with JIA in the CARRA Registry commonly report persistent medication use, but still report more problems with pain as compared to population norms. Additional work is needed to understand how best to address comorbid pain around the period of transition to adult care.

Black heterosexual men's resilience in times of HIV adversity: findings from the "weSpeak" study.

BACKGROUND: In Canada, heterosexual African, Caribbean and Black (ACB) men tend to suffer a disproportionate burden of HIV. Consequently, studies have examined the underlying contributors to this disparity through the nexus of behavioral and structural factors. While findings from these studies have been helpful, their use of deficit and risk models only furthers our knowledge of why ACB men are more vulnerable to HIV infection. Thus far, there is a dearth of knowledge on how heterosexual ACB men mobilize protective assets to promote their resilience against HIV infection. METHODS: As part of a larger Ontario-based project called weSpeak, this study examined how ACB men acquire protective assets to build their resilience to reduce their HIV vulnerability. We analyzed three focus group discussions (n = 17) and 13 in-depth interviews conducted with ACB men using NVivo and a mixed inductive-deductive thematic analyses approach. RESULTS: The findings show that ACB men mostly relied on personal coping strategies, including sexual abstinence, to build resilience against HIV. Interpersonal resources such as family, friends, and religious communities also played an important role in constructing ACB men's resilience. ACB men bemoaned their lack of access to essential institutional resources, such as health services, that are important in managing HIV adversity. CONCLUSION: Based on these findings, there is an urgent need for HIV policy stakeholders, including service providers, to engage the ACB community in the design of intervention programs. Additionally, addressing the socioeconomic disadvantages faced by ACB communities will increase the capacity of ACB men to develop resilience against HIV.

Knowledge of sexual partner's HIV serostatus and the practice of safer sex among heterosexual men of African descent in London, Ontario.

Objective: Poor knowledge of sexual partners' HIV status is a major contributing factor in the heterosexual spread of HIV in Canada. This study examined knowledge of sexual partner's HIV serostatus and the practice of safer sex among self-identified heterosexual African, Caribbean and Black (ACB) men in London, Ontario.Design: A cross-sectional data was collected from 156 heterosexual ACB men in London. The negative log-log link function was fitted to estimate the relationship between knowledge of sexual partner's HIV status and condom use among ACB men.Results: Findings show that ACB men who know their sexual partner's HIV status are less likely to use condoms compared to men who do not know the serostatus of their sexual partner, controlling for other theoretically relevant covariates. In addition, the findings show that sexually active, single ACB men are less likely to use condoms. On the other hand, ACB men with higher education, employed and with income over 60 thousand dollars a year have a higher likelihood of using condoms.Conclusions: Heterosexual ACB men who used condoms even when they did not know their sexual partners' HIV status could be explained as a resilience-building strategy in response to their increasing HIV vulnerabilities. Heterosexual ACB men's use of condoms is further associated with socioeconomic factors including income, employment and education that need to be addressed for an improved safer sex.

Concurrent sexual partnerships and HIV testing among heterosexual Black men in Ontario, Canada: findings from the weSpeak study.

BACKGROUND: African, Caribbean, and Black men constitute the second-highest category of males living with HIV in Ontario, which increased from 15.4% to 17% between 2011 and 2016. Previous studies have attributed this disproportionately higher rate to multiple concurrent sexual partnerships and low rates of HIV testing. Drawing on theoretical constructs of the health belief model (HBM), this study examined the relationship between multiple concurrent sexual partnerships and the uptake of HIV testing services among heterosexual Black men in Ontario. METHODS: Using a cross-sectional sample data of 829 individuals from four cities in Ontario, we employed the multinomial logit analysis to examine the relationship between multiple sexual partnerships and the uptake of HIV testing services among heterosexual Black men. RESULTS: The findings show that heterosexual Black men with multiple concurrent sexual partners were more than twice (RRR = 2.306, P < 0.01) as likely to test for HIV within the past 12 months when compared to those with one partner. Furthermore, being an immigrant, having good knowledge of HIV transmission, and earning lower annual income predicted higher odds of testing while sexual debut between the ages of 16 and 20 years, no visit to a healthcare provider in the past year and difficulty accessing healthcare significantly predicted lower likelihood of testing for HIV. CONCLUSIONS: These findings align with the theoretical constructs of the health belief model but more importantly, they suggest heterosexual Black men with concurrent sexual partners may be aware of their HIV risk and are taking measures to know their serostatus. Hence, making HIV screening services accessible and at safer spaces could increase their use of HIV screening services.

Sexual Debut Among Heterosexual Men of African and Caribbean Descent: Are the Youth Initiating Sex Earlier than the Older Generation?

Although age at first sex is considered a measure of sexual risk and vulnerability for HIV infection, there is a dearth of literature on age at sexual debut in the Canadian context. This study examined time variations to first sex among heterosexual African, Caribbean, and Black (ACB) men in four Ontarian cities. A population-based retrospective survey (n = 879) on timing to first sexual intercourse was conducted between 2018 and 2019 among self-identified heterosexual ACB men 16 years or older and residing in London, Ottawa, Toronto or Windsor. We used the lognormal survival analysis technique to examine variations in time to first sexual intercourse among age cohorts and between cities. The findings showed a generational shift in the pattern of sexual initiation, with younger heterosexual ACB men initiating sexual intercourse earlier compared with those currently older than 50 years. We observed those between 16 and 19 years, 20 and 29 years, and 30 and 39 years of age to have significantly higher risk ratios of TR = 0.852, TR = 0.869, and TR = 0.855, respectively. At city level, the results show marked spatial variations, with youth in cities of Toronto, Ottawa, and London at the highest risk of early sexual debut relative to those in Windsor. Early initiation of first sexual intercourse among heterosexual ACB youth was observed with those in the larger cities being at a relatively higher risk. There is the need for programs aimed at delaying sexual debut among youth in general. It is, however, important to recognize the relative risk of those in the larger cities.

"I went in there, had a bit of an issue with those folks": everyday challenges of heterosexual African, Caribbean and black (ACB) men in accessing HIV/AIDS services in London, Ontario.

BACKGROUND: In Canada, heterosexual African, Caribbean, and Black (ACB) men's heightened risk of HIV infection has been linked to behavioral characteristics, including practices of hegemonic masculinity that discourage the use of HIV preventive services. However, this framing is bereft of the role of structural factors that may be contributing to new HIV infections. This paper examined the underlying factors limiting access to health services among heterosexual ACB men in London, Ontario Canada. METHODS: A convenient sampling technique was used to recruit thirty-seven (n = 37) self-identified heterosexual ACB men and service providers. Four focus groups (FG) were conducted; three with ACB participants of similar age category (i.e., 16-24; 25-38; 39+), and one with service providers. The FGs focused on the barriers to using health services and interrogated the ease of access to HIV intervention programs by ACB men respectively. Recurring themes from the FGs were probed further using in-depth interviews (n = 13). FGs and in-depth interviews complemented each other in reducing uneven power dynamics, fact checking, and allowing for detail discussion of the topic under study. Data analyses were done in NVivo using a mixed inductive-deductive thematic analyses approach. RESULTS: Most ACB men lacked information on HIV and were unaware of their increased risk of infection. Contrary to the notion that behavioral characteristics keep ACB men away from health services, we found that most ACB men were unaware of the availability of these services. Those that had some knowledge about the services reported that they were not appropriately tailored to their needs. In addition, stereotypes and stigma about the etiology of HIV among Blacks, and systemic neglect served as significant barriers to ACB men's use of services. CONCLUSION: The findings suggest that, to enhance preventive health service use among heterosexual ACB men, there is the need to remove structural barriers. Engaging ACB men in the design and implementation of policies may be useful at improving access to HIV information, testing, and treatment services. Increased information dissemination to ACB men would create awareness of the availability of HIV services. Finally, service providers should be conscious of ACB men's concern about experiences of discrimination and racism at service centers.

Disease activity and health-care utilization among young adults with childhood-onset lupus transitioning to adult care: data from the Pediatric Lupus Outcomes Study.

BACKGROUND: Individuals with childhood-onset systemic lupus erythematosus (cSLE) must transfer from pediatric to adult care. The goal of this study was to examine disease activity and health-care utilization among young adults with cSLE who are undergoing or have recently completed the transfer to adult care. METHODS: The Pediatric Lupus Outcomes Study (PLOS) is a prospective longitudinal cohort study of young adults aged 18-30 diagnosed with cSLE. We conducted a cross-sectional analysis comparing 47 participants under the care of pediatric rheumatologists to 38 who had completed transfer to adult care. Demographics, disease manifestations, health- care utilization and transition readiness were compared between groups. RESULTS: Those in the post-transfer group had significantly lower medication usage and were less likely to have seen a rheumatologist in the past year. Disease manifestations, flare rates, and hospitalizations were similar between groups. Nearly a quarter of patients who had transferred to adult care reported difficulties with the process. CONCLUSION: Post-transfer patients had lower health-care utilization as evidenced by less medication usage and lack of rheumatology follow-up, in spite of the fact that disease activity was similar in both groups. Future studies will assess longitudinal changes in disease activity and damage in this population.

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

OBJECTIVE: To 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). METHODS: Youth 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. RESULTS: Participants 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. CONCLUSIONS: Primarily self-directed online self-management training and online disease education comparably and modestly improve pain and HRQOL in youth with JIA.

HIV risk perception and distribution of HIV risk among African, Caribbean and other Black people in a Canadian city: mixed methods results from the BLACCH study.

BACKGROUND: African, Caribbean and other Black (ACB) people are a priority group for HIV prevention in Canada, but little is known about the epidemiology of HIV risk in this population. This paper helps fill the knowledge gap by: presenting service providers' and ACB people's perceptions about HIV risk in ACB populations; describing the distribution of HIV risk behaviours among ACB people according to markers of social status and position; and comparing results from these two analyses. METHODS: The Black, African and Caribbean Canadian Health (BLACCH) Study is a mixed methods study that used semi-structured interviews and a cross-sectional quantitative questionnaire to collect information about HIV and health from 188 ACB people in London, Ontario, Canada. Qualitative content analysis was used to identify interview themes, and weighted bivariate statistical analyses were performed on the quantitative data. Behaviours related to HIV risk were stratified by sex, poverty status, immigration experience and employment status. RESULTS: Community members perceived that they were at low risk for HIV and mainly focused on sexual risks. They called for more information about HIV in Canada and culturally appropriate HIV services. Service providers cited marital infidelity and cultural and religious attitudes about condoms as barriers to women protecting themselves. They mentioned cultural norms, beliefs about masculinity and underrepresentation of heterosexual ACB men at AIDS service organizations as barriers to men protecting themselves. There were few statistically significant differences in risk behaviours reported by men and women. Those living in poverty were more likely to abstain from sex (p = 0.006) and use condoms (p = 0.027) in the past year. Those living in Canada longer reported higher prevalences of forced sex (p < 0.001), mixing alcohol or drugs with sex (p = 0.001) and past STI diagnoses (p = 0.032). Stable employment was associated with higher prevalences of not using condoms in the past year (p = 0.005) and past STI diagnoses (p = 0.018). CONCLUSIONS: The results show that perceptions about ACB people's HIV risk differ from actual risk, and those with higher social standing might be at greater risk. Furthermore, the social determinants of health are important factors in the epidemiology of HIV among ACB people.

Perception of transition readiness and preferences for use of technology in transition programs: teens' ideas for the future.

BACKGROUND: Efforts to facilitate transition of care to adult providers for adolescents with chronic disease are not uniformly successful and many patients encounter challenges. The goal of this study was to assess transition readiness and preferences for tools to aid in the transition process with an emphasis on technology and social media. METHODS: We surveyed and performed focus groups on patients aged 13-21 years from a pediatric university-based rheumatology and general pediatric practice. Demographics and transition readiness were assessed using a questionnaire. Transition readiness was assessed by examining patient knowledge and independence with care. Focus groups were conducted to elicit perspectives about desirable features of a transition program and useful tools. RESULTS: Thirty-five patients completed surveys; and 20 patients and 13 of their parents participated in a focus group. The median patient age was 17 years and 74.3% were female. A Likert scale (0-10, 10=most) was used to evaluate concern over changing to an adult medical provider, (mean=6.4, SD=2.6), preparedness for disease self-management (mean=6.0, SD=2.8), and perceived importance of self-managing their condition (mean=7.1, SD=3.1). Themes that emerged from focus groups included a desire for support groups with other teens, a preference for using text messaging for communication and a desire for an online health management program. CONCLUSIONS: Teens with chronic disease are able to identify health maintenance tasks and strategies that will aid in developing independence with healthcare management. These findings support the idea that developing engaging applications and support groups will assist teens in the transitioning.

Cumulative Social Disadvantage Associated with Childhood Arthritis: A Cross-Sectional Analysis of the National Survey of Children's Health.

OBJECTIVE: Health disparities in juvenile idiopathic arthritis (JIA) remain poorly understood. Social disadvantage may have a cumulative impact on health, with recent analyses using combined scoring systems to measure their impact on outcomes. Our aim was to investigate cumulative social disadvantage on childhood arthritis by using a cumulative score to analyze its association with arthritis among a nationally representative sample of children. METHODS: A cross-sectional analysis of the National Survey of Children's Health (2016-2019) was performed. A cumulative social disadvantage score was generated (1 point each, with a maximum score of 4): low guardian education (high school or less), low household income level (0-199% of federal poverty level), underinsured status (public or uninsured), and high adverse childhood experience (ACE) score (≥4). Univariate and multivariable (adjusting for age, sex, and race and ethnicity) logistic regression models were used to measure the association between cumulative social risk and the odds of an arthritis diagnosis and moderate-to-severe parent-reported arthritis severity. RESULTS: Of 131,774 surveys completed, a total of 365 children reported current arthritis. Cumulative social disadvantage was associated with an arthritis diagnosis, with the highest odds among those with a score of 4 (adjusted odds ratio [ORadj ] 12.4 [95% confidence interval (95% CI) 2.9-53.3]). Cumulative social disadvantage also was associated with increased odds of moderate-to-severe arthritis severity (ORadj 12.4 [95% CI 1.8-82.6]). CONCLUSION: In this nationally representative sample, accumulated social disadvantage, measured via a cumulative social disadvantage score based on income level, guardian education, insurance status, and ACE exposure, was associated with an arthritis diagnosis and moderate-to-severe arthritis severity.

Socioeconomic Factors Are Associated With Severity of Hospitalization in Pediatric Lupus: An Analysis of the 2016 Kids' Inpatient Database.

OBJECTIVE: Health disparities in adult lupus, including higher disease severity and activity among those in poverty, have been identified. Similar associations in pediatric lupus have not been clearly established. This study was undertaken to investigate the relationship of income level and other socioeconomic factors with length of stay (LOS) in the hospital and severe lupus features using the 2016 Kids' Inpatient Database (KID). METHODS: Lupus hospitalizations were identified in children ages 2-20 years in the 2016 KID using International Statistical Classification of Diseases and Related Health Problems, Tenth Revision (ICD-10) codes (M32). Univariate and multivariate negative binomial regression analyses were used to analyze the association of income level, race and ethnicity, and insurance status with LOS in the hospital. Univariate and multivariate logistic regression analyses were used to analyze the association of the same predictors with the presence of severe lupus features, defined using ICD-10 codes associated with lupus sequelae (e.g., lupus nephritis). RESULTS: A total of 3,367 unweighted (4,650 weighted) lupus hospitalizations were identified. Income level was found to be a statistically significant predictor of increased LOS in the hospital for those in the lowest income quartile (adjusted incidence rate ratio 1.12 [95% confidence interval (95% CI) 1.02-1.23]). Black race, "other" race, and public insurance were also associated with severe lupus features (adjusted odds ratio [ORadj ] 1.51 [95% CI 1.11-2.06]; ORadj 1.61 [95% CI 1.01-2.55]; and ORadj 1.51 [95% CI 1.17-2.55], respectively). CONCLUSION: Using a nationally representative data set, income level was found to be a statistically significant predictor of LOS in the hospital among those with the lowest reported income, highlighting a potential target population for intervention. Additionally, Black race and public insurance were associated with severe lupus features.

Implementation of Rheumatology Health Care Transition Processes and Adaptations to Systems Under Stress: A Mixed-Methods Study.

OBJECTIVES: Despite poor health care transition outcomes among young adults with pediatric rheumatic diseases, adoption of transition best practices is low. We sought to understand how structured transition processes were operationalized within pediatric rheumatology practices and what factors were perceived to enable adaptations during a global pandemic. METHODS: We conducted a mixed methods study of team leaders' experiences during an interim analysis of a pilot project to implement transition policy discussions at sites in the Childhood Arthritis and Rheumatology Research Alliance Transition Learning Collaborative. We combined quantitative assessments of organizational readiness for change (9 sites) and semistructured interviews of team leaders (8 sites) using determinants in the Exploration, Preparation, Implementation, Sustainment Framework. RESULTS: Engagement of nursing and institutional improvement efforts facilitated decisions to implement transition policies. Workflows incorporating educational processes by nonphysicians were perceived to be critical for success. When the pandemic disrupted contact with nonphysicians, capacity for automation using electronic medical record (EMR)-based tools was an important facilitator, but few sites could access these tools. Sites without EMR-based tools did not progress despite reporting high organizational readiness to implement change at the clinic level. Lastly, educational processes were often superseded by acute issues, such that youth with greater medical/psychosocial complexity may not receive the intervention. CONCLUSION: We generated several considerations to guide implementation of transition processes within pediatric rheumatology from the perspectives of team leaders. Careful assessment of institutional and nursing support is advisable before conducting complex transition interventions. Ideally, new strategies would ensure interventions reach youth with high complexity.

Anti-malaria drug artesunate prevents development of amyloid-ß pathology in mice by upregulating PICALM at the blood-brain barrier.

BACKGROUND: PICALM is one of the most significant susceptibility factors for Alzheimer's disease (AD). In humans and mice, PICALM is highly expressed in brain endothelium. PICALM endothelial levels are reduced in AD brains. PICALM controls several steps in Aß transcytosis across the blood-brain barrier (BBB). Its loss from brain endothelium in mice diminishes Aß clearance at the BBB, which worsens Aß pathology, but is reversible by endothelial PICALM re-expression. Thus, increasing PICALM at the BBB holds potential to slow down development of Aß pathology. METHODS: To identify a drug that could increase PICALM expression, we screened a library of 2007 FDA-approved drugs in HEK293t cells expressing luciferase driven by a human PICALM promoter, followed by a secondary mRNA screen in human Eahy926 endothelial cell line. In vivo studies with the lead hit were carried out in Picalm-deficient (Picalm+/-) mice, Picalm+/-; 5XFAD mice and Picalmlox/lox; Cdh5-Cre; 5XFAD mice with endothelial-specific Picalm knockout. We studied PICALM expression at the BBB, Aß pathology and clearance from brain to blood, cerebral blood flow (CBF) responses, BBB integrity and behavior. RESULTS: Our screen identified anti-malaria drug artesunate as the lead hit. Artesunate elevated PICALM mRNA and protein levels in Eahy926 endothelial cells and in vivo in brain capillaries of Picalm+/- mice by 2-3-fold. Artesunate treatment (32 mg/kg/day for 2 months) of 3-month old Picalm+/-; 5XFAD mice compared to vehicle increased brain capillary PICALM levels by 2-fold, and reduced Aß42 and Aß40 levels and Aß and thioflavin S-load in the cortex and hippocampus, and vascular Aß load by 34-51%. Artesunate also increased circulating Aß42 and Aß40 levels by 2-fold confirming accelerated Aß clearance from brain to blood. Consistent with reduced Aß pathology, treatment of Picalm+/-; 5XFAD mice with artesunate improved CBF responses, BBB integrity and behavior on novel object location and recognition, burrowing and nesting. Endothelial-specific knockout of PICALM abolished all beneficial effects of artesunate in 5XFAD mice indicating that endothelial PICALM is required for its therapeutic effects. CONCLUSIONS: Artesunate increases PICALM levels and Aß clearance at the BBB which prevents development of Aß pathology and functional deficits in mice and holds potential for translation to human AD.

Enhancing Care Partnerships Using a Rheumatology Dashboard: Bringing Together What Matters Most to Both Patients and Clinicians.

OBJECTIVE: Dashboards can support person-centered care by helping people partner with their clinicians to coproduce care based on preferences, shared decision-making, and evidence-based treatments. We engaged caregivers of children with juvenile idiopathic arthritis (JIA), adults with rheumatoid arthritis (RA), and clinicians in a pilot study to assess their experiences and the utility and impact of an electronic previsit questionnaire and point-of-care dashboard to support coproduction of rheumatology care. METHODS: We employed a mixed-methods design to assess users' perceptions of a customized electronic health record rheumatology module at four pediatric rheumatology practices and two adult rheumatology practices. We surveyed a convenience sample of caregivers of children with JIA (n = 113), adults with RA (n = 116), and clinicians (n = 12). We conducted semistructured interviews with 13 caregivers and patients and six care teams. Experiences were evaluated using descriptive statistics and thematic analyses. RESULTS: Caregivers of children with JIA and adults with RA reported the dashboards were useful during discussions (88%) and helped them talk about what mattered most (82%), make health care decisions (83%), and create a treatment plan (77%). Clinicians provided similar feedback. Two-thirds (67%) of caregivers and adults and 55% of clinicians would recommend the dashboard to peers. System usability scores (77.1 ± 15.6) were above average. Dashboards helped users make sense of health information, communicate more effectively, and make decisions. Improvements to the dashboards and workflows could enhance patient self-management and clinician efficiency. CONCLUSION: Visual point-of-care dashboards can support caregivers, patients, and clinicians to coproduce rheumatology care. Findings demonstrate a need to spread and scale for broader benefit and impact.

Transitioning to Adulthood with a Rheumatic Disease: A Case-Based Approach for Rheumatology Care Teams.

Both pediatric and adult rheumatology care teams play a central role in health care transition, the shift from child- and family-centered to adult-oriented health care. Components of transition preparation include readiness assessment, setting self-management goals, and spending time in clinical visits without a parent present. Pediatric providers and families should work together to create a transfer plan, identifying a new adult rheumatology care provider, providing a medical summary before transfer, and anticipating changes in health insurance. For high-risk transfers, direct communication between providers is recommended. Finally, adult rheumatologists need to build rapport with young adults to support future engagement in care.

Social determinants of health influence disease activity and functional disability in Polyarticular Juvenile Idiopathic Arthritis.

BACKGROUND: Social determinants of health (SDH) greatly influence outcomes during the first year of treatment in rheumatoid arthritis, a disease similar to polyarticular juvenile idiopathic arthritis (pJIA). We investigated the correlation of community poverty level and other SDH with the persistence of moderate to severe disease activity and functional disability over the first year of treatment in pJIA patients enrolled in the Childhood Arthritis and Rheumatology Research Alliance Registry. METHODS: In this cohort study, unadjusted and adjusted generalized linear mixed effects models analyzed the effect of community poverty and other SDH on disease activity, using the clinical Juvenile Arthritis Disease Activity Score-10, and disability, using the Child Health Assessment Questionnaire, measured at baseline, 6, and 12 months. RESULTS: One thousand six hundred eighty-four patients were identified. High community poverty (≥20% living below the federal poverty level) was associated with increased odds of functional disability (OR 1.82, 95% CI 1.28-2.60) but was not statistically significant after adjustment (aOR 1.23, 95% CI 0.81-1.86) and was not associated with increased disease activity. Non-white race/ethnicity was associated with higher disease activity (aOR 2.48, 95% CI: 1.41-4.36). Lower self-reported household income was associated with higher disease activity and persistent functional disability. Public insurance (aOR 1.56, 95% CI 1.06-2.29) and low family education (aOR 1.89, 95% CI 1.14-3.12) was associated with persistent functional disability. CONCLUSION: High community poverty level was associated with persistent functional disability in unadjusted analysis but not with persistent moderate to high disease activity. Race/ethnicity and other SDH were associated with persistent disease activity and functional disability.

Co-design of an Electronic Dashboard to Support the Coproduction of Care in Pediatric Rheumatic Disease: Human-Centered Design and Usability Testing.

BACKGROUND: The coproduction of care involves patients and families partnering with their clinicians and care teams, with the premise that each brings their own perspective, knowledge, and expertise, as well as their own values, goals, and preferences, to the partnership. Dashboards can display meaningful patient and clinical data to assess how a patient is doing and inform shared decision-making. Increasing communication between patients and care teams is particularly important for children with chronic conditions. Juvenile idiopathic arthritis (JIA), the most common chronic pediatric rheumatic condition, is associated with increased pain, decreased function, and decreased quality of life. OBJECTIVE: The aim of this study is to design a dashboard prototype for use in coproducing care in patients with JIA. We evaluated the use and needs of end users, obtained a consensus on the necessary dashboard data elements, and constructed display prototypes to inform meaningful discussions for coproduction. METHODS: A human-centered design approach involving parents, patients, clinicians, and care team members was used to develop a dashboard to support the coproduction of care in 4 ambulatory pediatric rheumatology clinics. We engaged a multidisciplinary team (n=18) of patients, parents, clinicians, nurses, and staff during an in-person kick-off meeting followed by biweekly meetings. We also leveraged advisory panels. Teams mapped workflows and patient journeys, created personas, and developed dashboard sketches. The final dashboard components were determined via Delphi consensus voting. Low-tech dashboard testing was completed during clinic visits, and visual display prototypes were iterated by using the Plan-Do-Study-Act methodology. Patients and clinicians were surveyed regarding their experiences. RESULTS: Teams achieved consensus on what data mattered most at the point of care to support patients with JIA, families, and clinicians collaborating to make the best possible health care decisions. Notable themes included the right data in the right place at the right time, data in once for multiple purposes, patient and family self-management components, and the opportunity for education and increased transparency. A final set of 11 dashboard data elements was identified, including patient-reported outcomes, clinical data, and medications. Important design considerations featured the incorporation of real-time data, clearly labeled graphs, and vertical orientation to facilitate review and discussion. Prototype paper-testing with 36 patients and families yielded positive feedback, with 89% (8/9) to 100% (9/9) of parents (n=9) and 80% (8/10) to 90% (9/10) of clinicians (n=10) strongly agreeing or agreeing that the dashboard was useful during clinic discussions, helped to talk about what mattered most, and informed health care decision-making. CONCLUSIONS: We developed a dashboard prototype that displays patient-reported and clinical data over time, along with medications that can be used during a clinic visit to support meaningful conversations and shared decision-making among patients with JIA, their families, and their clinicians and care teams.

Pediatric to Adult Transition Literature: Scoping Review and Rheumatology Research Prioritization Survey Results.

The transition from pediatric to adult care is the focus of growing research. It is important to identify how to direct future research efforts for maximum effect. Our goals were to perform a scoping review of the transition literature, highlight gaps in transition research, and offer stakeholder guidance on the importance and feasibility of research questions designed to fill identified gaps. The transition literature on rheumatic diseases and other common pediatric-onset chronic diseases was grouped and summarized. Based on the findings, a survey was developed and disseminated to pediatric rheumatologists and young adults with rheumatic diseases as well as their caregivers. The transitional care needs of patients, healthcare teams, and caregivers is well described in the literature. While various transition readiness scales exist, no longitudinal posttransfer study confirms their predictive validity. Multiple outcome measures are used alone or in combination to define a successful transition or intervention. Multimodal interventions are most effective at improving transition-related outcomes. How broader health policy affects transition is poorly studied. Research questions that ranked highest for importance and feasibility included those related to identifying and tracking persons with psychosocial vulnerabilities or other risk factors for poor outcomes. Interventions surrounding improving self-efficacy and health literacy were also ranked highly. In contrast to healthcare teams (n = 107), young adults/caregivers (n = 23) prioritized research surrounding improved work, school, or social function. The relevant transition literature is summarized and future research questions prioritized, including the creation of processes to identify and support young adults vulnerable to poor outcomes.

Translating research into practice-implementation recommendations for pediatric rheumatology; Proceedings of the childhood arthritis and rheumatology research alliance 2020 implementation science retreat.

The translation of research findings into clinical practice is challenging, especially fields like in pediatric rheumatology, where the evidence base is limited, there are few clinical trials, and the conditions are rare and heterogeneous. Implementation science methodologies have been shown to reduce the research- to- practice gap in other clinical settings may have similar utility in pediatric rheumatology. This paper describes the key discussion points from the inaugural Childhood Arthritis and Rheumatology Research Alliance Implementation Science retreat held in February 2020. The aim of this report is to synthesize those findings into an Implementation Science Roadmap for pediatric rheumatology research. This roadmap is based on three foundational principles: fostering curiosity and ensuring discovery, integration of research and quality improvement, and patient-centeredness. We include six key steps anchored in the principles of implementation science. Applying this roadmap will enable researchers to evaluate the full range of research activities, from the initial clinical design and evidence acquisition to the application of those findings in pediatric rheumatology clinics and direct patient care.