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

  • External authors:
  • Nicola Smith
  • Gavin Cleary
  • Andrew Smith
  • Flora McErlane

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Validation of novel patient-centred juvenile idiopathic arthritis-specific patient-reported outcome and experience measures (PROMs/PREMs). / Lunt, Laura; Shoop-Worrall, Stephanie; Smith, Nicola; Cleary, Gavin ; Mcdonagh, Janet; Smith, Andrew; Thomson, Wendy; McErlane, Flora.

In: Pediatric Rheumatology, 12.08.2020.

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@article{9bd919f5cdc6416bbabc5faefd4bef08,
title = "Validation of novel patient-centred juvenile idiopathic arthritis-specific patient-reported outcome and experience measures (PROMs/PREMs)",
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{\textquoteright}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. ",
author = "Laura Lunt and Stephanie Shoop-Worrall and Nicola Smith and Gavin Cleary and Janet Mcdonagh and Andrew Smith and Wendy Thomson and Flora McErlane",
year = "2020",
month = aug,
day = "12",
language = "English",
journal = "Pediatric Rheumatology",
issn = "1546-0096",
publisher = "Springer Nature",

}

RIS

TY - JOUR

T1 - Validation of novel patient-centred juvenile idiopathic arthritis-specific patient-reported outcome and experience measures (PROMs/PREMs)

AU - Lunt, Laura

AU - Shoop-Worrall, Stephanie

AU - Smith, Nicola

AU - Cleary, Gavin

AU - Mcdonagh, Janet

AU - Smith, Andrew

AU - Thomson, Wendy

AU - McErlane, Flora

PY - 2020/8/12

Y1 - 2020/8/12

N2 - 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.

AB - 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.

M3 - Article

JO - Pediatric Rheumatology

JF - Pediatric Rheumatology

SN - 1546-0096

ER -