Development of the PRECIOUS Short-Form (PRECIOUS-SF) quality of care measure for children with serious illnesses

Felicia Jia Ler Ang; Yin Bun Cheung; Mihir Gandhi; Rahul Malhotra; Truls Ostbye; Chetna Malhotra; Cristelle Chu Tian Chow; Poh Heng Chong; Zubair Amin; Teresa Shu Zhen Tan; Eric Finkelstein

doi:10.1186/s41687-025-00844-x

Development of the PRECIOUS Short-Form (PRECIOUS-SF) quality of care measure for children with serious illnesses

Felicia Jia Ler Ang, Yin Bun Cheung, Mihir Gandhi, Rahul Malhotra, Truls Ostbye, Chetna Malhotra, Cristelle Chu Tian Chow, Poh Heng Chong, Zubair Amin, Teresa Shu Zhen Tan, Eric Finkelstein

Children's and Women's health, Diagnostic Medicine, Psychiatry

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Abstract

BACKGROUND: Rising number of children with complex medical conditions necessitate regular healthcare quality evaluation to achieve optimal outcomes. To address the need for a periodic and quick assessment of quality of care in serious childhood illnesses, we developed a short version of previously validated 45-item PaRental Experience with care for Children with serIOUS illnesses (PRECIOUS) measure. METHODOLOGY: PRECIOUS was administered by parents of children living with serious illnesses at two time-points (baseline and two weeks) in an online survey. PRECIOUS Short-Form (PRECIOUS-SF) items were derived from the full PRECIOUS measure, which comprises five scales, using an exploratory factor analysis and best subset regression. The measurement properties of PRECIOUS-SF scales were assessed using the concurrent validity using Pearson correlation (r) with the PRECIOUS scales, internal consistency (Cronbach's α) within each scale, convergent validity with overall QoC rating, and test-retest reliability (intraclass correlation coefficient, ICC) between baseline and two-week responses. RESULTS: PRECIOUS-SF included 10 items across four scales - (1) access to financial and medical resources (2), collaborative and goal-concordant care (3), caregiver support and respectful care and (4) reduction of caregiving stressors. A fifth and optional scale was suggested for hospitalization-specific processes. PRECIOUS-SF scales correlated strongly with corresponding PRECIOUS scales (r = 0.91 to 0.98) and demonstrated satisfactory internal consistency (α = 0.77 to 0.91) and test-retest reliability (ICCs > 0.70). CONCLUSIONS: PRECIOUS-SF demonstrated internal consistency, convergent validity, test-retest reliability, and concurrent validity with PRECIOUS. PRECIOUS-SF offers a practical tool for routine quality of care assessment in pediatric serious illnesses for promoting timely service evaluation and quality improvement.

Original language	English
Article number	12
Number of pages	8
Journal	Journal of Patient-Reported Outcomes
Volume	9
Issue number	1
DOIs	https://doi.org/10.1186/s41687-025-00844-x
Publication status	Published - 24 Jan 2025
Publication type	A1 Journal article-refereed

Keywords

Patient-reported measure
Person-centered care
Process assessment
Process measure
Psychometrics
Quality of care

Publication forum classification

Publication forum level 1

ASJC Scopus subject areas

Health Informatics
Health Information Management

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10.1186/s41687-025-00844-xLicence: CC BY

s41687-025-00844-xFinal published version, 1.03 MBLicence: CC BY

https://urn.fi/URN:NBN:fi:tuni-202503112682Licence: CC BY

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Ang, F. J. L., Cheung, Y. B., Gandhi, M., Malhotra, R., Ostbye, T., Malhotra, C., Chow, C. C. T., Chong, P. H., Amin, Z., Tan, T. S. Z., & Finkelstein, E. (2025). Development of the PRECIOUS Short-Form (PRECIOUS-SF) quality of care measure for children with serious illnesses. Journal of Patient-Reported Outcomes, 9(1), Article 12. https://doi.org/10.1186/s41687-025-00844-x

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abstract = "BACKGROUND: Rising number of children with complex medical conditions necessitate regular healthcare quality evaluation to achieve optimal outcomes. To address the need for a periodic and quick assessment of quality of care in serious childhood illnesses, we developed a short version of previously validated 45-item PaRental Experience with care for Children with serIOUS illnesses (PRECIOUS) measure. METHODOLOGY: PRECIOUS was administered by parents of children living with serious illnesses at two time-points (baseline and two weeks) in an online survey. PRECIOUS Short-Form (PRECIOUS-SF) items were derived from the full PRECIOUS measure, which comprises five scales, using an exploratory factor analysis and best subset regression. The measurement properties of PRECIOUS-SF scales were assessed using the concurrent validity using Pearson correlation (r) with the PRECIOUS scales, internal consistency (Cronbach's α) within each scale, convergent validity with overall QoC rating, and test-retest reliability (intraclass correlation coefficient, ICC) between baseline and two-week responses. RESULTS: PRECIOUS-SF included 10 items across four scales - (1) access to financial and medical resources (2), collaborative and goal-concordant care (3), caregiver support and respectful care and (4) reduction of caregiving stressors. A fifth and optional scale was suggested for hospitalization-specific processes. PRECIOUS-SF scales correlated strongly with corresponding PRECIOUS scales (r = 0.91 to 0.98) and demonstrated satisfactory internal consistency (α = 0.77 to 0.91) and test-retest reliability (ICCs > 0.70). CONCLUSIONS: PRECIOUS-SF demonstrated internal consistency, convergent validity, test-retest reliability, and concurrent validity with PRECIOUS. PRECIOUS-SF offers a practical tool for routine quality of care assessment in pediatric serious illnesses for promoting timely service evaluation and quality improvement.",

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author = "Ang, {Felicia Jia Ler} and Cheung, {Yin Bun} and Mihir Gandhi and Rahul Malhotra and Truls Ostbye and Chetna Malhotra and Chow, {Cristelle Chu Tian} and Chong, {Poh Heng} and Zubair Amin and Tan, {Teresa Shu Zhen} and Eric Finkelstein",

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doi = "10.1186/s41687-025-00844-x",

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T1 - Development of the PRECIOUS Short-Form (PRECIOUS-SF) quality of care measure for children with serious illnesses

AU - Ang, Felicia Jia Ler

AU - Cheung, Yin Bun

AU - Gandhi, Mihir

AU - Malhotra, Rahul

AU - Ostbye, Truls

AU - Malhotra, Chetna

AU - Chow, Cristelle Chu Tian

AU - Chong, Poh Heng

AU - Amin, Zubair

AU - Tan, Teresa Shu Zhen

AU - Finkelstein, Eric

PY - 2025/1/24

Y1 - 2025/1/24

N2 - BACKGROUND: Rising number of children with complex medical conditions necessitate regular healthcare quality evaluation to achieve optimal outcomes. To address the need for a periodic and quick assessment of quality of care in serious childhood illnesses, we developed a short version of previously validated 45-item PaRental Experience with care for Children with serIOUS illnesses (PRECIOUS) measure. METHODOLOGY: PRECIOUS was administered by parents of children living with serious illnesses at two time-points (baseline and two weeks) in an online survey. PRECIOUS Short-Form (PRECIOUS-SF) items were derived from the full PRECIOUS measure, which comprises five scales, using an exploratory factor analysis and best subset regression. The measurement properties of PRECIOUS-SF scales were assessed using the concurrent validity using Pearson correlation (r) with the PRECIOUS scales, internal consistency (Cronbach's α) within each scale, convergent validity with overall QoC rating, and test-retest reliability (intraclass correlation coefficient, ICC) between baseline and two-week responses. RESULTS: PRECIOUS-SF included 10 items across four scales - (1) access to financial and medical resources (2), collaborative and goal-concordant care (3), caregiver support and respectful care and (4) reduction of caregiving stressors. A fifth and optional scale was suggested for hospitalization-specific processes. PRECIOUS-SF scales correlated strongly with corresponding PRECIOUS scales (r = 0.91 to 0.98) and demonstrated satisfactory internal consistency (α = 0.77 to 0.91) and test-retest reliability (ICCs > 0.70). CONCLUSIONS: PRECIOUS-SF demonstrated internal consistency, convergent validity, test-retest reliability, and concurrent validity with PRECIOUS. PRECIOUS-SF offers a practical tool for routine quality of care assessment in pediatric serious illnesses for promoting timely service evaluation and quality improvement.

AB - BACKGROUND: Rising number of children with complex medical conditions necessitate regular healthcare quality evaluation to achieve optimal outcomes. To address the need for a periodic and quick assessment of quality of care in serious childhood illnesses, we developed a short version of previously validated 45-item PaRental Experience with care for Children with serIOUS illnesses (PRECIOUS) measure. METHODOLOGY: PRECIOUS was administered by parents of children living with serious illnesses at two time-points (baseline and two weeks) in an online survey. PRECIOUS Short-Form (PRECIOUS-SF) items were derived from the full PRECIOUS measure, which comprises five scales, using an exploratory factor analysis and best subset regression. The measurement properties of PRECIOUS-SF scales were assessed using the concurrent validity using Pearson correlation (r) with the PRECIOUS scales, internal consistency (Cronbach's α) within each scale, convergent validity with overall QoC rating, and test-retest reliability (intraclass correlation coefficient, ICC) between baseline and two-week responses. RESULTS: PRECIOUS-SF included 10 items across four scales - (1) access to financial and medical resources (2), collaborative and goal-concordant care (3), caregiver support and respectful care and (4) reduction of caregiving stressors. A fifth and optional scale was suggested for hospitalization-specific processes. PRECIOUS-SF scales correlated strongly with corresponding PRECIOUS scales (r = 0.91 to 0.98) and demonstrated satisfactory internal consistency (α = 0.77 to 0.91) and test-retest reliability (ICCs > 0.70). CONCLUSIONS: PRECIOUS-SF demonstrated internal consistency, convergent validity, test-retest reliability, and concurrent validity with PRECIOUS. PRECIOUS-SF offers a practical tool for routine quality of care assessment in pediatric serious illnesses for promoting timely service evaluation and quality improvement.

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KW - Person-centered care

KW - Process assessment

KW - Process measure

KW - Psychometrics

KW - Quality of care

U2 - 10.1186/s41687-025-00844-x

DO - 10.1186/s41687-025-00844-x

M3 - Article

C2 - 39856324

AN - SCOPUS:85217000666

SN - 2509-8020

VL - 9

JO - Journal of Patient-Reported Outcomes

JF - Journal of Patient-Reported Outcomes

IS - 1

M1 - 12

ER -

Development of the PRECIOUS Short-Form (PRECIOUS-SF) quality of care measure for children with serious illnesses

Abstract

Keywords

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