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Comment
. 2023 Aug 1;177(8):800-807.
doi: 10.1001/jamapediatrics.2023.1602.

Goals of Care Among Parents of Children Receiving Palliative Care

Chris Feudtner  1   2 , Leah J Beight  3 , Jackelyn Y Boyden  1   4 , Douglas L Hill  1 , Pamela S Hinds  5 , Emily E Johnston  6 , Sarah E Friebert  7 , Jori F Bogetz  8 , Tammy I Kang  9 , Matt Hall  10 , Russell T Nye  1 , Joanne Wolfe  11 ; PPCRN SHARE Project Group
Collaborators, Affiliations
Comment

Goals of Care Among Parents of Children Receiving Palliative Care

Chris Feudtner et al. JAMA Pediatr. .

Abstract

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.

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Conflict of interest statement

Conflict of Interest Disclosures: Dr Boyden reported grants from the National Institute of Nursing Research Postdoctoral Fellowship (F32NR019517) during the conduct of the study. Dr Hinds reported grants from the National Institutes of Health during the conduct of the study. Dr Bogetz reported grants from the National Institutes of Health, the National Palliative Care Research Center, the Cambia Health Foundation, and Seattle Children’s Research Institute outside the submitted work. Dr Wolfe reported grants from the National Institute of Nursing Research outside the submitted work. No other disclosures were reported.

Figures

Figure 1.
Figure 1.. Distribution of Importance Scores for Each Goal of Care at Study Entry
For each goal, the box represents data between the 25th to 75th percentile; the break within the box represents the median value, the horizontal capped bars extending from each box represent 1.5 IQR limits, and the circles outside the capped bars represent values beyond 1.5 IQR from the median.
Figure 2.
Figure 2.. Goals of Care Importance Scores at Baseline by Types of Complex Chronic Condition (CCC)
All goals of care were stated as seeking each specific goal. The dots are located at the mean score at baseline for each goal. QOL indicates quality of life.
Figure 3.
Figure 3.. Goals of Care Importance Scores From Initiation of Pediatric Palliative Care (PPC) Services Forward Over Time
Goals of care importance scores overtime smoothed with a lowest fit. Note that the horizontal time scale is log (base 10) transformed.
Figure 4.
Figure 4.. Occurrence of Change in Rank Ordering of Goals of Care During 5 Successive Time Intervals
See this image and copyright information in PMC

Comment on

References

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