Patient Engagement in Pediatric Rheumatology Research

2022 ◽  
Vol 48 (1) ◽  
pp. 1-13
Author(s):  
Vincent Del Gaizo ◽  
Melanie Kohlheim
Keyword(s):  
Patient Engagement ◽  
Pediatric Rheumatology ◽  
Rheumatology Research

scholarly journals Research priorities in pediatric rheumatology: The Childhood Arthritis and Rheumatology Research Alliance (CARRA) consensus

2008 ◽  
Vol 6 (1) ◽  
pp. 5 ◽  
Author(s):  
Sylvia Ota ◽  
Randy Q Cron ◽  
Laura E Schanberg ◽  
Kathleen O'Neil ◽  
Elizabeth D Mellins ◽  
...  
Keyword(s):  
Pediatric Rheumatology ◽  
Research Priorities ◽  
Rheumatology Research ◽  
Childhood Arthritis ◽  
Research Alliance

scholarly journals Prioritized Agenda for Mental Health Research in Pediatric Rheumatology from the Childhood Arthritis and Rheumatology Research Alliance Mental Health Workgroup

2020 ◽  
Vol 47 (11) ◽  
pp. 1687-1695 ◽  
Author(s):  
Tamar B. Rubinstein ◽  
Ekemini A. Ogbu ◽  
Martha Rodriguez ◽  
Lindsay Waqar ◽  
Jennifer M.P. Woo ◽  
...  
Keyword(s):  
Mental Health ◽  
Pediatric Rheumatology ◽  
Health Screening ◽  
Mental Health Screening ◽  
Research Topics ◽  
Rheumatologic Disease ◽  
Rheumatology Research ◽  
Childhood Arthritis ◽  
Health Burden ◽  
Research Alliance

ObjectiveMental health problems are prevalent in youth with rheumatologic disease. Gaps in knowledge exist regarding their effect, as well as strategies for detection and effective treatment. To address these gaps, the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Mental Health Workgroup developed and prioritized an agenda of research topics.MethodsWe systematically reviewed the literature and identified 5 major research domains in further need of study: (A) mental health burden and relationship to pediatric rheumatologic disease, (B) effect of mental health disorders on outcomes, (C) mental health awareness and education, (D) mental health screening, and (E) mental health treatment. Research topics within these areas were developed by workgroup leaders and refined by the workgroup. Members were surveyed to prioritize the topics by importance, feasibility of study, and actionability.ResultsFifty-nine members (57%) completed the survey. Among the proposed research topics, 31/33 were rated as highly important and 4/33 were rated highly for importance, feasibility, and actionability. Topics rated most important related to (A) mental health burden and relationship to rheumatologic disease, and (B) the effect of mental health on outcomes. Topics rated most feasible and actionable were related to (D) mental health screening.ConclusionAddressing gaps in knowledge regarding mental health in youth with rheumatologic disease is essential for improving care. We have identified high priority research topics regarding mental health of pediatric rheumatology patients in need of further investigation that are feasible to study and believed to lead to actionable results in patient care.

Highlights of the Latest Pediatric Rheumatology Research

2014 ◽  
Vol 14 (17) ◽  
pp. 31-32
Author(s):  
M. Cunningham ◽  
R. Cimaz
Keyword(s):  
Pediatric Rheumatology ◽  
Rheumatology Research

scholarly journals Framework for Advancing the Reporting of Patient Engagement in Rheumatology Research Projects

2017 ◽  
Vol 19 (7) ◽  
Author(s):  
Clayon B. Hamilton ◽  
Jenny C. Leese ◽  
Alison M. Hoens ◽  
Linda C. Li
Keyword(s):  
Patient Engagement ◽  
Research Projects ◽  
Rheumatology Research

scholarly journals Telemedicine use by pediatric rheumatologists during the COVID-19 pandemic

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Rajdeep Pooni ◽  
Tova Ronis ◽  
Tzielan Lee ◽  
Keyword(s):  
Clinical Assessment ◽  
Patient Engagement ◽  
Pediatric Rheumatology ◽  
Response Rate ◽  
Descriptive Statistics ◽  
Electronic Survey ◽  
Childhood Arthritis ◽  
Survey Response Rate ◽  
Qualitative Work ◽  
Research Alliance

Abstract Background To characterize various aspects of telemedicine use by pediatric rheumatology providers during the recent pandemic including provider acceptability of telehealth practices, clinical reliability, and clinical appropriateness. Methods An electronic survey was generated and disseminated amongst the Childhood Arthritis and Rheumatology Research Alliance (CARRA) listserv (n = 547). Survey items were analyzed via descriptive statistics by question. Results The survey response rate was 40.8% (n = 223) with the majority of respondents in an attending-level role. We observed that musculoskeletal components of the exam were rated as the most reliable components of a telemedicine exam and 86.5% of survey respondents reported engaging the patient or patient caregiver to help conduct the virtual exam. However, 65.7% of providers reported not being able to elicit the information needed from a telemedicine visit to make a complete clinical assessment. We also noted areas of disagreement regarding areas of patient engagement and confidentiality. We found that approximately one-third (35.8%) of those surveyed felt that their level of burnout was increased due to telemedicine. Conclusion In general, providers found exam reliability (specifically around focused musculoskeletal elements) in telemedicine visits but overall felt that they were unable to generate the information needed to generate a complete clinical assessment. Additionally, there were suggestions that patient engagement and confidentiality varied during telemedicine visits when compared to in-person clinical visits. Further qualitative work is needed to fully explore telemedicine use in pediatric rheumatology.

scholarly journals Attitudes and Approaches for Withdrawing Drugs for Children with Clinically Inactive Nonsystemic JIA: A Survey of the Childhood Arthritis and Rheumatology Research Alliance

2017 ◽  
Vol 44 (3) ◽  
pp. 352-360 ◽  
Author(s):  
Daniel B. Horton ◽  
Karen B. Onel ◽  
Timothy Beukelman ◽  
Sarah Ringold
Keyword(s):  
Decision Making ◽  
Pediatric Rheumatology ◽  
Biologic Therapy ◽  
Joint Damage ◽  
Inactive Disease ◽  
Considerable Variability ◽  
Electronic Survey ◽  
Rheumatology Research ◽  
Childhood Arthritis ◽  
Research Alliance

Objective.To assess the attitudes and strategies of pediatric rheumatology clinicians toward withdrawing medications for children with clinically inactive juvenile idiopathic arthritis (JIA).Methods.Members of the Childhood Arthritis and Rheumatology Research Alliance (CARRA) completed an anonymous electronic survey on decision making and approaches for withdrawing medications for inactive nonsystemic JIA. Data were analyzed using descriptive statistics.Results.Of 388 clinicians in CARRA, 124 completed surveys (32%), predominantly attending pediatric rheumatologists. The most highly ranked factors in decision making for withdrawing medications were the duration of clinical inactivity, drug toxicity, duration of prior activity, patient/family preferences, joint damage, and JIA category. Diagnoses of rheumatoid factor-positive polyarthritis and persistent oligoarthritis made respondents less likely and more likely, respectively, to withdraw JIA medications. Three-quarters of respondents waited for 6–12 months of inactive disease before stopping methotrexate (MTX) or biologics, but preferences varied. There was also considerable variability in the strategies used to reduce, taper, or stop medications for clinically inactive JIA; most commonly, clinicians reported slow medication tapers lasting at least 2 months. For children receiving combination MTX-biologic therapy, 63% of respondents preferred stopping MTX first. Most clinicians reported using imaging only seldom or sometimes to guide decision making, but most were also reluctant to withdraw medications in the presence of asymptomatic imaging abnormalities suggestive of subclinical inflammation.Conclusion.Considerable variability exists among pediatric rheumatology clinicians regarding when and how to withdraw medications for children with clinically inactive JIA. More research is needed to identify the most effective approaches to withdraw medications and predictors of outcomes.

scholarly journals Telemedicine Use by Pediatric Rheumatologists during the COVID-19 Pandemic

2020 ◽  
Author(s):  
Rajdeep Pooni ◽  
Tova Ronis ◽  
Tzielan Lee
Keyword(s):  
Clinical Assessment ◽  
Patient Engagement ◽  
Pediatric Rheumatology ◽  
Response Rate ◽  
Descriptive Statistics ◽  
Electronic Survey ◽  
Childhood Arthritis ◽  
Survey Response Rate ◽  
Qualitative Work ◽  
Research Alliance

Abstract Background To characterize various aspects of telemedicine use by pediatric rheumatology providers during the recent pandemic including provider acceptability of telehealth practices, clinical reliability, and clinical appropriateness. Methods An electronic survey was generated and disseminated amongst the Childhood Arthritis and Rheumatology Research Alliance (CARRA) listserv (n = 547). Survey items were analyzed via descriptive statistics by question and correlates amongst burnout and satisfaction with telemedicine were examined via ANOVA with appropriate statistical software. Results The survey response rate was 40.8% (n = 223) with the majority of respondents in an attending-level role. We observed that musculoskeletal components of the exam were rated as the most reliable components of a telemedicine exam and 85.6% of survey respondents reported engaging the patient or patient caregiver to help conduct the virtual exam. However, 63.5% of providers reported not being able to elicit the information needed from a telemedicine visit to make a complete clinical assessment. We also noted areas of disagreement regarding areas of patient engagement and confidentiality. We found that approximately one-third (33.5%) of those surveyed felt that their level of burnout was increased due to telemedicine. Conclusion In general, providers found exam reliability (specifically around focused musculoskeletal elements) in telemedicine visits but overall felt that they were unable to generate the information needed to generate a complete clinical assessment. Additionally, there were suggestions that patient engagement and confidentiality varied during telemedicine visits when compared to in-person clinical visits. Further qualitative work is needed to fully explore telemedicine use in pediatric rheumatology.

Treatment Dose and Patient Engagement Predict CBT Outcomes for Anxiety Disorders

2013 ◽  
Author(s):  
D. Glenn ◽  
D. Golinelli ◽  
R. D. Rose ◽  
P. Roy-Byrne ◽  
M. B. Stein ◽  
...  
Keyword(s):  
Anxiety Disorders ◽  
Patient Engagement ◽  
Treatment Dose
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