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- Title
Goals of Care Among Parents of Children Receiving Palliative Care.
- Authors
Feudtner, Chris; Beight, Leah J.; Boyden, Jackelyn Y.; Hill, Douglas L.; Hinds, Pamela S.; Johnston, Emily E.; Friebert, Sarah E.; Bogetz, Jori F.; Kang, Tammy I.; Hall, Matt; Nye, Russell T.; Wolfe, Joanne
- Abstract
This study attempts to determine parental prioritization of goals of care and patterns of change over time for parents of children receiving palliative care. Key Points: Question: What importance do parents of children receiving palliative care place on 5 common goals of care and how do these goals change over a 2-year period? Findings: In this cohort study of 603 pediatric palliative care patients, parents most commonly scored seeking quality of life as having the highest importance, followed closely by seeking health or comfort with less importance placed on disease modification or life extension, but individual parents' scores varied substantially and often changed over time. Meaning: These findings emphasize the importance of reassessing goals of care with parents to guide appropriate clinical intervention. Importance: While knowing the goals of care (GOCs) for children receiving pediatric palliative care (PPC) are crucial for guiding the care they receive, how parents prioritize these goals and how their priorities may change over time is not known. Objective: To determine parental prioritization of GOCs and patterns of change over time for parents of children receiving palliative care. Design, Setting, and Participants: A Pediatric Palliative Care Research Network's Shared Data and Research cohort study with data collected at 0, 2, 6, 12, 18, and 24 months in hospital, outpatient, or home settings from April 10, 2017, to February 15, 2022, at 7 PPC programs based at children's hospitals across the US. Participants included parents of patients, birth to 30 years of age, who received PPC services. Exposures: Analyses were adjusted for demographic characteristics, number of complex chronic conditions, and time enrolled in PPC. Main Outcomes: Parents' importance scores, as measured using a discrete choice experiment, of 5 preselected GOCs: seeking quality of life (QOL), health, comfort, disease modification, or life extension. Importance scores for the 5 GOCs summed to 100. Results: A total of 680 parents of 603 patients reported on GOCs. Median patient age was 4.4 (IQR, 0.8-13.2) years and 320 patients were male (53.1%). At baseline, parents scored QOL as the most important goal (mean score, 31.5 [SD, 8.4]), followed by health (26.3 [SD, 7.5]), comfort (22.4 [SD, 11.7]), disease modification (10.9 [SD, 9.2]), and life extension (8.9 [SD, 9.9]). Importantly, parents varied substantially in their baseline scores for each goal (IQRs more than 9.4), but across patients in different complex chronic conditions categories, the mean scores varied only slightly (means differ 8.7 or less). For each additional study month since PPC initiation, QOL was scored higher by 0.06 (95% CI, 0.04-0.08) and comfort scored higher by 0.3 (95% CI, 0-0.06), while the importance score for life extension decreased by 0.07 (95% CI, 0.04-0.09) and disease modification by 0.02 (95% CI, 0-0.04); health scores did not significantly differ from PPC initiation. Conclusions and Relevance: Parents of children receiving PPC placed the highest value on QOL, but with considerable individual-level variation and substantial change over time. These findings emphasize the importance of reassessing GOCs with parents to guide appropriate clinical intervention.
- Subjects
UNITED States; PARENT attitudes; CONFIDENCE intervals; HUMAN comfort; PEDIATRICS; QUALITY of life; DESCRIPTIVE statistics; RESEARCH funding; PALLIATIVE treatment; GOAL (Psychology)
- Publication
JAMA Pediatrics, 2023, Vol 177, Issue 8, p800
- ISSN
2168-6203
- Publication type
Article
- DOI
10.1001/jamapediatrics.2023.1602