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Development of the PRECIOUS Short-Form (PRECIOUS-SF) quality of care measure for children with serious illnesses
Felicia Jia Ler Ang1,2, Yin Bun Cheung3,4, Mihir Gandhi5,3,4
1Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore, Singapore. felicia.ang@duke-nus.edu.sg.
Insights
A new short-form measure, PRECIOUS-SF, effectively assesses healthcare quality for children with serious illnesses. This tool provides reliable and valid insights for timely service evaluation and improvement in pediatric care.
Area of Science:
- Pediatric Healthcare Quality Assessment
- Psychometric Validation of Patient-Reported Outcome Measures
Background:
- Increasing prevalence of complex pediatric medical conditions requires robust quality of care evaluation.
- Existing measures may not offer timely or efficient assessment for pediatric serious illnesses.
Purpose of the Study:
- To develop and validate a short-form version of the PaRental Experience with care for Children with serIOUS illnesses (PRECIOUS) measure.
- To create a practical tool for routine quality of care assessment in pediatric serious illnesses.
Main Methods:
- The PRECIOUS Short-Form (PRECIOUS-SF) was derived from the full 45-item PRECIOUS measure using exploratory factor analysis and regression.
- Measurement properties including concurrent validity, internal consistency, convergent validity, and test-retest reliability were assessed via online surveys.
- Data collection involved parents of children with serious illnesses at two time points.
Main Results:
- The PRECIOUS-SF comprises 10 items across four scales: resource access, collaborative care, caregiver support, and stress reduction.
- Scales demonstrated strong correlations with the full PRECIOUS measure (r=0.91-0.98), satisfactory internal consistency (α=0.77-0.91), and good test-retest reliability (ICCs > 0.70).
Conclusions:
- The PRECIOUS-SF is a psychometrically sound instrument for assessing quality of care in pediatric serious illnesses.
- This validated short-form measure facilitates routine, timely evaluation and improvement of healthcare services for children with complex conditions.
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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