Patient Reported Outcomes as Indicators of Pediatric Health Care Quality

Bevans, Katherine B.; Moon, JeanHee; Carle, Adam C.; Mara, Constance A.; Lai, Jin Shei; Dimarco, Lindsay; Müller, Nicole; Woods, Diana Lynn

doi:10.1016/j.acap.2014.06.002

Cited by 29 publications

(14 citation statements)

References 26 publications

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“…; Bevans et al. ). It will also be important to incorporate clinical perspectives and expertise to ensure measures are perceived as meaningful and are ultimately used by pediatric providers.…”

Section: Discussionmentioning

confidence: 97%

“…Future research on the construct validity of existing parent-reported FCC/SDM measures is needed, particularly for performance measurement efforts seeking to connect care experiences to long-term patient reported outcomes (Magasi et al 2012;Bevans et al 2014). It will also be important to incorporate clinical perspectives and expertise to ensure measures are perceived as meaningful and are ultimately used by pediatric providers.…”

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

Clarifying the Predictive Value of Family‐Centered Care and Shared Decision Making for Pediatric Healthcare Outcomes Using the Medical Expenditure Panel Survey

Lindly

Zuckerman

Mistry

2016

Health Services Research

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Section: Discussionmentioning

confidence: 97%

Section: Discussionmentioning

confidence: 99%

Clarifying the Predictive Value of Family‐Centered Care and Shared Decision Making for Pediatric Healthcare Outcomes Using the Medical Expenditure Panel Survey

Lindly

Zuckerman

Mistry

2016

Health Services Research

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“…2,4,10 In addition to identifying clinical outcomes, PROMs are used in clinical practice as screening tools and to facilitate communication within multidisciplinary teams. [11][12][13][14][15] Research supporting the use of PROMs in pediatric clinical care settings is emerging [16][17][18] ; however, this research has not been conducted in the field of pediatric transplantation. To advance the field, an initial step is to explore what PROMs have been used within a pediatric care context to provide decision-making support for their selection and use.…”

Section: Introductionmentioning

confidence: 99%

Patient‐reported outcome measures within pediatric solid organ transplantation: A systematic review

Anthony

Stinson

Lazor

et al. 2019

Pediatric Transplantation

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Subjective evaluation of medical care and disease outcomes from patients' perspectives has become increasingly important. Patient‐reported outcome measures (PROMs) play a prominent role in engaging patients, capturing their experiences and improving patient care. This systematic review sought to identify PROMs that are used in the field of pediatric solid organ transplantation, with the aim to inform the implementation of PROMs into clinical practice for this population. A systematic review of English language, peer‐reviewed articles was performed on key health science databases to identify publications using PROMs in pediatric solid organ transplantation. The search yielded 3670 articles, with a final data set of 62 articles that included 47 different PROMs. The three most frequently used PROMs included the following: (a) PedsQL™ Generic Core Scales (n = 25); (b) Children's Depression Inventory (n = 6); and (c) Child Health Questionnaire (n = 6). Of the 47 PROMs, 42 were generic and five were disease‐specific; only six PROMS had a documented psychometric evaluation within a pediatric solid organ transplant population. This review outlines the attributes of the instruments (eg, domains captured), as well as the psychometric properties of those evaluated. PROMs are increasingly used in the field of pediatric transplantation; however, there are limited details in the current literature about their conceptual underpinnings and psychometric properties. This review highlights the need for additional psychometric evaluation of identified measures to establish the necessary foundation to inform the implementation of PROMs into clinical care for pediatric solid organ transplant patients.

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“…However, overutilization of patient-reported outcome measures (PROs) can result in questionnaire fatigue for patients and their caregivers. Therefore, judicious use of these measures is warranted in order to optimize clinical care for patients with JFMS and their families [3].…”

Section: Introductionmentioning

confidence: 99%

Patient-proxy agreement on health-related quality of life in juvenile fibromyalgia syndrome

Gmuca¹,

Xiao²,

Sherry³

2019

Pediatr Rheumatol

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Background Health-related quality of life (HRQoL) measures serve as important indicators of pain-related physical and psychosocial function in youth with juvenile fibromyalgia syndrome (JFMS). While the administration of parent-proxy reported HRQoL measures in the assessment of JFMS is common, its added clinical value to patient self-reports is unclear. We aimed to determine the level of agreement on HRQoL among patients with JFMS as well as their parent-proxies and to determine factors associated with this agreement. Methods We performed a retrospective, cross-sectional cohort study of children aged 8 to 17 years diagnosed with JFMS and presenting for initial evaluation to a pediatric rheumatology pain clinic between April 2017 and May 2018. All patients and proxies were administered the Pediatric Quality of Life Short Form 15 Generic Core Scales (PedsQL SF-15) as part of routine clinical care. We calculated absolute discrepancy scores (absolute value of parent-proxy score minus patient score) to describe the extent of difference in HRQoL scores between parent-proxies and patients. We examined agreement between parent-proxy report and patient self-report via intraclass correlation coefficients (ICCs), stratified by age and sex, as well as Bland-Altman plots. We also used multivariate regression models to determine factors associated with level of agreement. Results A total of 65 patient-proxy pairs were included in this study. ICCs demonstrated good to excellent agreement between all parent-proxy and patient measures of HRQoL irrespective of the patient’s age or sex. The level of agreement was not associated with pain duration or pain severity but less agreement on psychosocial HRQoL was associated with older patient age (β = 1.30; p < 0.05). Conclusions This study in youth with JFMS demonstrated good to excellent patient-proxy agreement across all domains of the PedsQL SF-15 irrespective of patient’s age or sex. Our findings suggest that parent-proxy reports do not provide additional information beyond that obtained from the patient self-report of HRQoL according to the PedsQL SF-15. In order to facilitate children and adolescents with JFMS becoming partners in their own healthcare, and to decrease the burden of multiple questionnaires, we propose focusing on patients’ own perceptions of HRQoL in the clinical setting.

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Patient Reported Outcomes as Indicators of Pediatric Health Care Quality

Cited by 29 publications

References 26 publications

Clarifying the Predictive Value of Family‐Centered Care and Shared Decision Making for Pediatric Healthcare Outcomes Using the Medical Expenditure Panel Survey

Clarifying the Predictive Value of Family‐Centered Care and Shared Decision Making for Pediatric Healthcare Outcomes Using the Medical Expenditure Panel Survey

Patient‐reported outcome measures within pediatric solid organ transplantation: A systematic review

Patient-proxy agreement on health-related quality of life in juvenile fibromyalgia syndrome

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