Mental Health in Pediatric Rheumatology

Treemarcki, Erin Brennan; Danguecan, Ashley; Cunningham, N.; Knight, Andrea

doi:10.1016/j.rdc.2021.09.012

Cited by 11 publications

(14 citation statements)

References 80 publications

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“…Pediatric rheumatological illnesses are chronic inflammatory conditions that affect the musculoskeletal system [ 1 , 2 ]. While some are rare, juvenile idiopathic arthritis (JIA), the most common rheumatological disease of childhood, currently affects 10,000 children and young people in the United Kingdom [ 3 ].…”

Section: Introductionmentioning

confidence: 99%

“…JIA occurs as frequently as juvenile diabetes mellitus and 10 times more frequently than acute lymphoblastic leukemia [ 4 ]. Children and young people with rheumatological conditions are well known to experience a high psychological burden, with decreased quality of life, increased pain and disease activity, physical disabilities, school absenteeism, suboptimal medication adherence, and transition challenges [ 1 , 5 ]. Up to two-thirds of young people continue with active disease into adulthood [ 6 , 7 ], with visible and invisible symptoms causing marked psychological ramifications.…”

Section: Introductionmentioning

confidence: 99%

“…Up to two-thirds of young people continue with active disease into adulthood [ 6 , 7 ], with visible and invisible symptoms causing marked psychological ramifications. High levels of mental health comorbidity and consequent risk for adverse health outcomes are common in children and young people with rheumatological conditions [ 1 , 8 ]. The British Society of Paediatric and Adolescent Rheumatology (BSPAR) Standards of Care (2010) include the recommendation that a pediatric clinical psychologist should be part of the core multidisciplinary team [ 9 ].…”

Section: Introductionmentioning

confidence: 99%

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Designing, Developing, and Testing a Chatbot for Parents and Caregivers of Children and Young People With Rheumatological Conditions (the IMPACT Study): Protocol for a Co-Designed Proof-of-Concept Study

Livermore,

Kupiec,

Wedderburn

et al. 2024

JMIR Res Protoc

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Background Pediatric rheumatology is a term that encompasses over 80 conditions affecting different organs and systems. Children and young people with rheumatological chronic conditions are known to have high levels of mental health problems and therefore are at risk of poor health outcomes. Clinical psychologists can help children and young people manage the daily difficulties of living with one of these conditions; however, there are insufficient pediatric psychologists in the United Kingdom. We urgently need to consider other ways of providing early, essential support to improve their current well-being. One way of doing this is to empower parents and caregivers to have more of the answers that their children and young people need to support them further between their hospital appointments. Objective The objective of this co-designed proof-of-concept study is to design, develop, and test a chatbot intervention to support parents and caregivers of children and young people with rheumatological conditions. Methods This study will explore the needs and views of children and young people with rheumatological conditions, their siblings, parents, and caregivers, as well as health care professionals working in pediatric rheumatology. We will ask approximately 100 participants in focus groups where they think the gaps are in current clinical care and what ideas they have for improving upon them. Creative experience-based co-design workshops will then decide upon top priorities to develop further while informing the appearance, functionality, and practical delivery of a chatbot intervention. Upon completion of a minimum viable product, approximately 100 parents and caregivers will user-test the chatbot intervention in an iterative sprint methodology to determine its worth as a mechanism for support for parents. Results A total of 73 children, young people, parents, caregivers, and health care professionals have so far been enrolled in the study, which began in November 2023. The anticipated completion date of the study is April 2026. The data analysis is expected to be completed in January 2026, with the results being published in April 2026. Conclusions This study will provide evidence on the accessibility, acceptability, and usability of a chatbot intervention for parents and caregivers of children and young people with rheumatological conditions. If proven useful, it could lead to a future efficacy trial of one of the first chatbot interventions to provide targeted and user-suggested support for parents and caregivers of children with chronic health conditions in health care services. This study is unique in that it will detail the needs and wants of children, young people, siblings, parents, and caregivers to improve the current support given to families living with pediatric rheumatological conditions. It will be conducted across the whole of the United Kingdom for all pediatric rheumatological conditions at all stages of the disease trajectory. International Registered Report Identifier (IRRID) DERR1-10.2196/57238

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Designing, Developing, and Testing a Chatbot for Parents and Caregivers of Children and Young People With Rheumatological Conditions (the IMPACT Study): Protocol for a Co-Designed Proof-of-Concept Study

Livermore,

Kupiec,

Wedderburn

et al. 2024

JMIR Res Protoc

View full text Add to dashboard Cite

show abstract

“…In the pediatric rheumatology population, mental health problems have been shown to affect quality of life, educational attainment, and disease-related outcomes such as medication adherence, healthcare utilization, and transition. 3 Although patients with juvenile idiopathic arthritis ( JIA) represent the largest disease group in pediatric rheumatology, there are gaps in our understanding of mental health effects in JIA, and research to optimize mental health for these patients is needed.…”

mentioning

confidence: 99%

“…Importantly, it must also be recognized that mental health intervention can range from brief psychoeducation to more in-depth management, which may include evidence-based psychotherapy and/or psychotropic medications, depending on symptom severity. This is exemplified by a psychosocial preventative health model, based on the work of Kazak et al 25 and adapted for pediatric rheumatology, 3 in which early identification of psychosocial distress and tiered supports match identified levels of need and risk. Only a small percentage of patients may need a psychologist or psychiatric services, or even urgent intervention.…”

mentioning

confidence: 99%

The Elephant in the Rheum: Time to Address Mental Health as a Priority in Pediatric Rheumatology

2023

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Mental health, which encompasses psychological and emotional well-being, is increasingly being recognized as an important aspect of overall health in youth with chronic disease. Particularly in this time of the mental health crisis in children due in large part to the coronavirus disease 2019 (COVID-19) pandemic,1with evidence of adverse effects on managing rheumatologic disease,2addressing mental health issues has become critical.

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Transition Guide Dissemination to Foster Patient–Care Team Conversations: A Childhood Arthritis Rheumatology Research Alliance Transition Learning Collaborative Pilot Implementation Study

Chang,

Alonzi,

Sears

et al. 2024

ACR Open Rheumatology

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ObjectiveUptake of evidence‐informed health care transition processes among pediatric rheumatologists is low despite poor outcomes of transition from pediatric to adult care. We piloted a learning collaborative model to implement transition guides. We dually assessed implementation outcomes and changes in reported patient–care team discussions about transition.MethodsThis was a type II hybrid effectiveness‐implementation pilot study of transition guide dissemination to patients at least 14 years old with rheumatic conditions across nine pediatric rheumatology centers in the Childhood Arthritis Rheumatology Research Alliance Transition Learning Collaborative. We evaluated implementation outcomes (feasibility, adaptations, and fidelity) and the proportion of patients surveyed that reported having discussions with their care team regarding transfer planning.ResultsSix sites were retained through the COVID‐19 pandemic (below 70% target). Five out of six sites contributed outcome data (met 80% target) but with substantial heterogeneity in how transition guides were shared (eg, in‐person, electronic messages, and posted flyers), and data were collected. The pooled proportion of respondents having discussed transfer planning with their care team was 39% preimplementation (n = 239; 95% confidence interval [CI] 32%–46%) and 55% postimplementation (n = 864; 95% CI 36%–73%). After implementation, there were significant increases in the likelihood of respondents recalling receiving a transition guide (odds ratio [OR] 2.58, 95% CI 1.35–4.92) and discussing transfer planning (OR 2.14, 95% CI 1.30–3.52), adjusted for age and site of care.ConclusionTransition guide dissemination is a simple intervention associated with increased awareness among young people with rheumatic conditions and discussions with their care team about transition preparation. The learning collaborative model facilitated identification of several dissemination strategies adaptable to site‐specific resources.

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Mental Health in Pediatric Rheumatology

Cited by 11 publications

References 80 publications

Designing, Developing, and Testing a Chatbot for Parents and Caregivers of Children and Young People With Rheumatological Conditions (the IMPACT Study): Protocol for a Co-Designed Proof-of-Concept Study

Designing, Developing, and Testing a Chatbot for Parents and Caregivers of Children and Young People With Rheumatological Conditions (the IMPACT Study): Protocol for a Co-Designed Proof-of-Concept Study

The Elephant in the Rheum: Time to Address Mental Health as a Priority in Pediatric Rheumatology

Transition Guide Dissemination to Foster Patient–Care Team Conversations: A Childhood Arthritis Rheumatology Research Alliance Transition Learning Collaborative Pilot Implementation Study

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