PRECIOUS demonstrated satisfactory measurement properties for assessing the quality of care for children with serious illnesses
child; adult; article; female; human; major clinical study; male; palliative therapy; hospitalization; follow up; adolescent; therapy; caregiver support; correlation coefficient; psychometry; Cronbach alpha coefficient; internal consistency; person centered care; convergent validity; exploratory factor analysis; root mean squared error; test retest reliability
Objective: To determine the measurement properties of PRECIOUS, a parent-reported measure of Quality of Care (QoC) for seriously ill children across care settings and illness trajectories. Study design and setting: Parents self-administered baseline and two-week follow-up surveys online. Exploratory Factor Analysis (EFA) was used to determine PRECIOUS's factor structure and select items. Internal consistency was evaluated with Cronbach's α, test-retest reliability with intraclass correlation coefficients (ICCs), and convergent validity with Spearman's correlations between PRECIOUS scales and subscales of Measure of Processes of Care (MPOC-20) and Quality of Children's Palliative Care Instrument (QCPCI). Results: Of 152 parents [108 (71%) mothers, 44 (29%) fathers] who completed the baseline survey, 123 (81%) completed follow-up. EFA grouped PRECIOUS into 5 scales: Collaborative and goal-concordant care (12 items), Caregiver support and respectful care (15 items), Access to financial and medical resources (5 items), Reducing caregiving stressors (9 items), and Hospitalization-specific processes (4 items). Root Mean Square Error of Approximation was 0.040 and Comparative Fit Index was 0.980. Cronbach's α ranged from 0.85 to 0.96. ICCs ranged from 0.72 to 0.86. Significant correlations with MPOC-20 and QCPCI confirmed convergent validity. The original 56-item tool was reduced to 45-items. Conclusion: PRECIOUS demonstrates satisfactory measurement properties for assessing QoC for seriously ill children.
Ang FJL; Bun Cheung Y; Gandhi M; Ostbye T; Malhotra C; Malhotra R; Cristelle Chow CT; Heng Chong P; Amin Z; Teresa Tan SZ; Tewani K; Hanim Buang SN; Finkelstein EA
Journal of Clinical Epidemiology
2024
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jclinepi.2024.111286" target="_blank" rel="noreferrer noopener">10.1016/j.jclinepi.2024.111286</a>
Parent-Reported Experience Measures of Care for Children with Serious Illnesses: A Scoping Review
Child Care; Childhood Disease; Chronic Disease; Parental Attitude; Patient-Reported Outcome; Personal Experience; Caregiver Support; Child; Emergency Care; Empowerment; Health Care Delivery; Health Care Quality;Hospice Care; Hospital Care; Hospitalized Child; Human; Long Term Care; Neonatal Intensive Care Unit; Palliative Therapy; Review; Shared Decision Making; Systematic Review; Terminal Care
OBJECTIVE: This scoping review aimed to: 1) identify parent-reported experience measures (PaREMs) for parents of children with serious illnesses from peer-reviewed literature, 2) map the types of care experience being evaluated in PaREMs, 3) identify and describe steps followed in the measure development process, including where gaps lie and how PaREMs may be improved in future efforts, and 4) help service providers choose a PaREM suitable for their service delivery setting and strategy. DATA SOURCES: Relevant articles were systematically searched from PubMed, CINAHL, and Scopus EBSCOhost databases until June 10, 2021, followed by a manual reference list search of highly relevant articles. STUDY SELECTION: Abstracts were screened, followed by a full-text review using predetermined inclusion and exclusion criteria. DATA EXTRACTION: A standardized data extraction tool was used. DATA SYNTHESIS: Sixteen PaREMs were identified. There were large variances in the development processes across measures, and most have been developed in high-income, English-speaking Western countries. Most only assess the quality of acute inpatient care. Few measures can be used by multiple service providers or chronic care, and many do not capture all relevant domains of the parent experience. CONCLUSION(S): Service providers should integrate PaREMs into their settings to track and improve the quality of care. Given the multidisciplinary nature of pediatric care and the often-unpredictable disease trajectories of seriously ill children, measures that are applicable to multiple providers and varying lengths of care are essential for standardized assessment of quality of care and coordination among providers. To improve future PaREM development, researchers should follow consistent and methodologically robust steps, ideally in more diverse sociocultural and health systems contexts. Future measures should widen their scope to be applicable over the disease trajectory and to multiple service providers in a child's network of care for a comprehensive evaluation of experience.Copyright © 2022 Lippincott Williams and Wilkins. All rights reserved.
Ang FJL; Finkelstein EA; Gandhi M
Pediatric Critical Care Medicine
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/PCC.0000000000002996" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000002996</a>