Development of a patient-reported outcome measure for the assessment of symptom burden in pediatric chronic kidney disease (PRO-Kid)

Jawa, Natasha; Rapoport, Adam; Widger, Kimberley; Zappitelli, Michael; Jha, Sarita; Dart, Allison; Matsuda‐Abedini, Mina

doi:10.1007/s00467-021-05269-4

Cited by 3 publications

(4 citation statements)

References 28 publications

(33 reference statements)

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“…Details of the development of the PRO-Kid questionnaire have been previously described. 10 In brief, PRO-Kid is designed as an easy to complete 14-item questionnaire that represents the spectrum of physical, cognitive, and emotional symptoms endorsed most frequently by children and adolescents age 8–18 years with CKD/kidney failure. Each item on the PRO-Kid questionnaire is rated on a five-point scale for the dimensions of frequency and impact (not at all=0, a little=1, medium=2, a lot=3 and always=4).…”

Section: Methodsmentioning

confidence: 99%

“…Given this identified gap and the need for a disease-specific symptom burden assessment tool for children with CKD/kidney failure, we developed a novel CKD-specific patient-reported outcome measure (PRO-Kid). 10 This previous work included cognitive interviews of children and adolescents with CKD and parents to identify symptoms that are relevant to youth with CKD and kidney failure and determined the most optimal way to inquire about them while ensuring it is delivered at the appropriate level of understanding. The result was a PROM for the assessment of frequency and impact of CKD/kidney failure symptoms, in the three domains of physical, socio-emotional, and cognitive symptoms: the 14-item PRO-Kid questionnaire.…”

Section: Introductionmentioning

confidence: 99%

“…The result was a PROM for the assessment of frequency and impact of CKD/kidney failure symptoms, in the three domains of physical, socio-emotional, and cognitive symptoms: the 14-item PRO-Kid questionnaire. 10 The objective of this study was to externally validate PRO-Kid in a Canadian cohort of children with CKD/kidney failure. We hypothesized that higher PRO-Kid scores would be associated with lower Pediatric Quality of Life Inventory (PedsQL) scores.…”

Section: Introductionmentioning

confidence: 99%

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Validation of Patient-Reported Outcome measure in pediatric chronic Kidney disease (PRO-Kid)

Matsuda-Abedini,

Zappitelli,

Widger

et al. 2024

CJASN

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Background: Measuring the burden of symptoms that matter most to children and adolescents with chronic kidney disease (CKD) is essential for optimizing patient-centered care. We developed a novel CKD-specific Patient-Reported Outcome measure (PRO-Kid) to assess both frequency and impact of symptoms in children. In the current study, we further assessed the validity and internal consistency of PRO-Kid. Methods: In this multicenter study, children age 8 to 18 years with stages 3-5 CKD, including those on dialysis, were recruited from five pediatric centers. Children completed the 14-item PRO-Kid questionnaire and the validated Pediatric Quality of Life Inventory (PedsQL™ 4.0). We explored the dimensionality of the PRO-kid scale using exploratory and confirmatory factor analysis, to either establish that it is a unidimensional construct or identify evidence of subfactors. We then assessed internal consistency (Cronbach’s alpha [Cα]) and construct validity (Pearson correlations). Results: In total, 100 children were included. The median eGFR was 27.4 ml/min/1.73m2 [7.43, 63.4], and 26 children (26%) were on dialysis. Both the PRO-Kid frequency and the impact scales were unidimensional. Cα was high for both the PRO-Kid frequency and impact scales, 0.83 (95% CI = 0.78 to 0.88) and 0.84 (95% CI = 0.80 to 0.89) respectively, showing strong internal consistency. Pearson correlations between PRO-Kid and PedsQL™ scores were also strong: -0.78 (95% confidence interval [CI] = -0.85 to -0.70) for the frequency score and -0.69 (95% CI = -0.78 to -0.56) for the impact score, reflecting the association between poorer quality of life and higher symptom burden. Conclusions: PRO-Kid is a novel patient-reported symptom burden tool for children 8-18 years of age with CKD that correlates strongly in the expected direction with PedsQL™, supporting its validity. Future work will evaluate changes in PRO-Kid score with progression of CKD, and implementation of the tool into clinical care.

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Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Validation of Patient-Reported Outcome measure in pediatric chronic Kidney disease (PRO-Kid)

Matsuda-Abedini,

Zappitelli,

Widger

et al. 2024

CJASN

Self Cite

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“…To this end, Jawa et al . [61 ▪▪ ] developed a patient-reported symptom assessment tool, PRO-Kid, to better evaluate the impact of CKD on specific aspects of life participation offering clinicians the opportunity to ascertain and integrate the perspectives of children with kidney disease to improve clinical care.…”

Section: Centering the Child And Family Perspectivementioning

confidence: 99%

Enabling flourishing: novel approaches in palliative medicine for children with advanced kidney disease

House

Wightman

2022

Current Opinion in Nephrology &Amp; Hypertension

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Purpose of reviewPaediatric kidney disease results in considerable burden on children and their families. Paediatric palliative care is a holistic, family-centred care approach intended to enable flourishing and address the many impediments to life participation which advanced kidney disease can impose. To date, palliative care resources have been underutilized in paediatric nephrology. This review will highlight recent literature targeting the engagement and life participation of children with advanced kidney disease through implementation of novel palliative care approaches and propose directions for future research.Recent findingsChildren with advanced kidney disease and their families highly value incorporation of their perspectives, particularly on life participation, within care plan development; but what it means to participate in life can be variable, and clinicians need improved tools to ascertain and incorporate these perspectives. Novel palliative care interventions developed for application in comparable disease states offer potential opportunities for paediatric nephrologists to support this goal.SummaryChildren with advanced kidney disease and their families will benefit from incorporation of their perspectives and values, facilitated by palliative interventions.

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Taking care of myself in a different and broken world: self-care practices of adolescents on dialysis

Viana

Castillo-Espitia

2023

International Journal of Qualitative Studies on Health and Well

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Development of a patient-reported outcome measure for the assessment of symptom burden in pediatric chronic kidney disease (PRO-Kid)

Cited by 3 publications

References 28 publications

Validation of Patient-Reported Outcome measure in pediatric chronic Kidney disease (PRO-Kid)

Validation of Patient-Reported Outcome measure in pediatric chronic Kidney disease (PRO-Kid)

Enabling flourishing: novel approaches in palliative medicine for children with advanced kidney disease

Taking care of myself in a different and broken world: self-care practices of adolescents on dialysis

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