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

Felicia Jia Ler Ang, Yin Bun Cheung + Show 9 more

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https://doi.org/10.1186/s41687-025-00844-x

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Journal: Journal of Patient-Reported Outcomes	Publication Date: Jan 24, 2025
License type: CC BY 4.0

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BackgroundRising 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.MethodologyPRECIOUS 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.ResultsPRECIOUS-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).ConclusionsPRECIOUS-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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