Patterns and rates of confirmed transfer of care of patients with Juvenile Idiopathic Arthritis at a tertiary paediatric rheumatology centre.

2021 ◽  
Author(s):  
Joachim Tan ◽  
Georgina Tiller ◽  
Peter Gowdie ◽  
Angela Cox ◽  
Jane Munro ◽  
...  
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Paediatric Rheumatology ◽  
Transfer Of Care

Transfer from paediatric rheumatology to the adult rheumatology setting: experiences and expectations of young adults with juvenile idiopathic arthritis

2012 ◽  
Vol 32 (5) ◽  
pp. 575-583 ◽  
Author(s):  
Deborah Hilderson ◽  
Leen Eyckmans ◽  
Kristien Van der Elst ◽  
Rene Westhovens ◽  
Carine Wouters ◽  
...  
Keyword(s):  
Young Adults ◽  
Juvenile Idiopathic Arthritis ◽  
Paediatric Rheumatology

scholarly journals Strategies for the prevention and management of methotrexate-related nausea and vomiting in juvenile idiopathic arthritis: results of a UK Paediatric Rheumatology prescriber survey

Rheumatology ◽  
2015 ◽  
Vol 54 (11) ◽  
pp. 2108-2109 ◽  
Author(s):  
Tania S. Amin ◽  
Sian Shenton ◽  
Kathleen Mulligan ◽  
Lucy R. Wedderburn ◽  
Mark Wood ◽  
...  
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Paediatric Rheumatology ◽  
Nausea And Vomiting

O002. Factors facilitating the self- and shared-management of Juvenile Idiopathic Arthritis

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_5) ◽  
Author(s):  
Simon Stones
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Young People ◽  
Paediatric Rheumatology ◽  
The Self ◽  
Self Management ◽  
Management Support ◽  
Children And Young People ◽  
Realist Approach ◽  
Shared Management ◽  
Initial Question

Abstract Background Juvenile idiopathic arthritis (JIA) requires some form of lifelong management, with at least one third of children symptomatic in adulthood. Therefore, empowering children to competently self-manage their health and wellbeing across the lifecourse is logical, while supporting families in their shared-management role during childhood. However, there was a limited theoretical basis to the self- and shared-management of JIA across the lifecourse. The objective is to explore the factors facilitating the self- and shared-management of JIA using a realist approach to evaluation. Methods Guided by the Individual and Family Self-management Theory, a three-stage realist approach to evaluation was undertaken: 1) initial JIA self- and shared-management question theories were elicited from literature reviews and stakeholder insights [1]; 2) seven initial question theories were tested using teacher-learner cycle interviews with 20 participants; 3) findings were analysed using a theory-driven approach to thematic analysis, using deductive, inductive, and retroductive reasoning to extend or refute the initial question theories, in order to identify demi-regularities in the data. Results Six refined JIA self- and shared-management question theories emerged: 1) meaningful and bespoke self-management support across the life course for children and young people with JIA; 2) recognised and valued shared-management support for the families of children and young people with JIA, with autonomy in mind; 3) individual healthcare plans as a shared management communication tool to facilitate optimal management of JIA; 4) consistent recognition, value, and encourage of self- and shared-management support from the paediatric rheumatology multi-disciplinary team and associated professionals; 5) child, young-person, and family-focused paediatric rheumatology care and support services across the lifecourse; and 6) bespoke and inclusive approaches by education providers to enable children and young people with JIA to feel safe, supported, and able to fulfil their potential. Conclusion There is an increasing recognition of the importance of self- and shared-management of JIA and other paediatric-onset chronic conditions. However, there is a lack of an overall, cohesive approach to self- and shared-management between healthcare providers, education providers, and patient/parent organisations. The findings from this study illuminate the factors facilitating JIA self- and shared-management at individual, interpersonal, institutional and infrastructural levels, bearing relevance to individuals and organisations involved in caring for, and supporting children with JIA and their families.

scholarly journals Validation of novel patient-centred juvenile idiopathic arthritis-specific patient-reported outcome and experience measures (PROMs/PREMs)

2020 ◽  
Author(s):  
Laura E Lunt ◽  
Stephanie Shoop-Worrall ◽  
Nicola Smith ◽  
Gavin Cleary ◽  
Janet McDonagh ◽  
...  
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Clinical Care ◽  
Patient Reported Outcome ◽  
Paediatric Rheumatology ◽  
Major Step ◽  
Specific Patient ◽  
Children And Young People ◽  
Face To Face ◽  
Patient Reported

Abstract Background: Measuring the outcomes that matter to children and young people (CYP) with juvenile idiopathic arthritis (JIA), is a necessary precursor to patient-centred improvements in quality of clinical care. We present a two-centre validation of novel JIA patient-reported outcome and experience measures (PROM and PREM) developed as part of the CAPTURE-JIA project. Methods: CYP with JIA were recruited from paediatric rheumatology clinics, completing the CAPTURE-JIA PROM and PREM, CHAQ and CHU 9D. A subset participated in face-to-face interviews and completed the PROM/PREM one week later. The OMERACT filter was applied and the three domains of validation assessed. Truth assessments included cognitive interviewing, sensitivity analysis and Spearman’s correlations. Discrimination assessments included specificity and reliability testing. Feasibility was assessed using time to form completion and proportion of missing data. Results: Eighty-two CYP and their families were recruited; ten cognitive interviews and fifteen PROM/PREM test/retests were conducted. Truth: CYP and parents understood the PROM/PREM and felt important areas were covered. PROM criteria had high sensitivities (> 70%) against similar items on the CHU 9D, with the exception of fatigue (58%). Correlations between similar PROM and CHU 9D criteria were moderate to very strong (coefficients 0.40–0.82.) Discrimination: high specificities (> 70%) on corresponding PROM and CHU 9D domains. Feasibility: median completion times for PROM sixty seconds (IQR 38–75) and PREM forty-nine seconds (IQR 30–60) respectively. Conclusion: The CAPTURE-JIA PROM and PREM are valid and feasible in UK paediatric rheumatology clinics. Embedding routine collection into clinical care would be a major step towards improving quality of care.

scholarly journals Validation of novel patient-centred juvenile idiopathic arthritis-specific patient-reported outcome and experience measures (PROMs/PREMs)

2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Laura E. Lunt ◽  
Stephanie Shoop-Worrall ◽  
Nicola Smith ◽  
Gavin Cleary ◽  
Janet McDonagh ◽  
...  
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Clinical Care ◽  
Patient Reported Outcome ◽  
Paediatric Rheumatology ◽  
Major Step ◽  
Specific Patient ◽  
Children And Young People ◽  
Face To Face ◽  
Patient Reported

Abstract Background Measuring the outcomes that matter to children and young people (CYP) with juvenile idiopathic arthritis (JIA), is a necessary precursor to patient-centred improvements in quality of clinical care. We present a two-centre validation of novel JIA patient-reported outcome and experience measures (PROM and PREM) developed as part of the CAPTURE-JIA project. Methods CYP with JIA were recruited from paediatric rheumatology clinics, completing the CAPTURE-JIA PROM and PREM, CHAQ and CHU 9D. A subset participated in face-to-face interviews and completed the PROM/PREM 1 week later. The OMERACT filter was applied and the three domains of validation assessed. Truth assessments included cognitive interviewing, sensitivity analysis and Spearman’s correlations. Discrimination assessments included specificity and reliability testing. Feasibility was assessed using time to form completion and proportion of missing data. Results Eighty-two CYP and their families were recruited; ten cognitive interviews and fifteen PROM/PREM test/retests were conducted. Truth: CYP and parents understood the PROM/PREM and felt important areas were covered. PROM criteria had high sensitivities (> 70%) against similar items on the CHU 9D, with the exception of fatigue (58%). Correlations between similar PROM and CHU 9D criteria were moderate to very strong (coefficients 0.40–0.82.) Discrimination: high specificities (> 70%) on corresponding PROM and CHU 9D domains. Feasibility: median completion times for PROM 60 s (IQR 38–75) and PREM 49 s (IQR 30–60) respectively. Conclusion The CAPTURE-JIA PROM and PREM are valid and feasible in UK paediatric rheumatology clinics. Embedding routine collection into clinical care would be a major step towards improving quality of care.

scholarly journals Validation of novel patient-centred juvenile idiopathic arthritis-specific patient-reported outcome and experience measures (PROMs/PREMs)

2020 ◽  
Author(s):  
Laura E Lunt ◽  
Stephanie Shoop-Worrall ◽  
Nicola Smith ◽  
Gavin Cleary ◽  
Janet McDonagh ◽  
...  
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Clinical Care ◽  
Patient Reported Outcome ◽  
Paediatric Rheumatology ◽  
Major Step ◽  
Specific Patient ◽  
Children And Young People ◽  
Face To Face ◽  
Patient Reported

Abstract Background: Measuring the outcomes that matter to children and young people (CYP) with juvenile idiopathic arthritis (JIA), is a necessary precursor to patient-centred improvements in quality of clinical care. We present a two-centre validation of novel JIA patient-reported outcome and experience measures (PROM and PREM) developed as part of the CAPTURE-JIA project. Methods: CYP with JIA were recruited from paediatric rheumatology clinics, completing the CAPTURE-JIA PROM and PREM, CHAQ and CHU 9D. A subset participated in face-to-face interviews and completed the PROM/PREM one week later. The OMERACT filter was applied and the three domains of validation assessed. Truth assessments included cognitive interviewing, sensitivity analysis and Spearman’s correlations. Discrimination assessments included specificity and reliability testing. Feasibility was assessed using time to form completion and proportion of missing data. Results: Eighty-two CYP and their families were recruited; ten cognitive interviews and fifteen PROM/PREM test/retests were conducted. Truth: CYP and parents understood the PROM/PREM and felt important areas were covered. PROM criteria had high sensitivities (>70%) against similar items on the CHU 9D, with the exception of fatigue (58%). Correlations between similar PROM and CHU 9D criteria were moderate to very strong (coefficients 0.40-0.82.) Discrimination: high specificities (>70%) on corresponding PROM and CHU 9D domains. Feasibility: median completion times for PROM sixty seconds (IQR 38-75) and PREM forty-nine seconds (IQR 30-60) respectively. Conclusion: The CAPTURE-JIA PROM and PREM are valid and feasible in UK paediatric rheumatology clinics. Embedding routine collection into clinical care would be a major step towards improving quality of care.

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