Pilot study of symptom burden and quality of life among families of children in palliative care or hospice

Purpose: Despite calls for improvement in pediatric palliative care, children may have significant suffering at end-of-life (EOL). Research is limited and relies heavily on retrospective reports from mothers or nurses. We prospectively assessed symptom burden and quality of life (QOL) among children with life limiting conditions to examine concordance across multiple informants (i.e., mother, father, child, nurse). Method: Families were recruited shortly after their child (ages 5-18) was enrolled in palliative care or hospice. Of 36 eligible families, 8 children died before recruitment. Of the remaining 28, 25 (89%) participated. Participants included 25 mothers, 14 fathers, 12 children (Mage = 11.4, SD = 3.4). On average, the sample of children was White (72%) and female (52%); 60% had complex chronic conditions, and 40% had cancer. Mothers, fathers, nurses, and children (who were able to self-report) completed the Memorial Symptom Assessment Scale (MSAS), and parents and children completed the PedsQL in the home. Results: A similar number of symptoms were reported for children by mother (M = 9.5, SD = 3.3), father (M = 10.3, SD = 3.0), and self-report (M = 10.6, SD = 3.3), but nurses (M = 5.3, SD = 3.3) reported about half as many symptoms (p \u3c .01). For composite symptom scores (i.e., weighted for frequency, severity, bother), nurses reported the highest scores, followed by mothers, fathers, and children. Paired t-tests show differences between nurse and mother (p \u3c .08), nurse and father (p \u3c .01), and mother and father (p \u3c .01) composite scores. QOL was well below normal according to mothers (M = 50.4, SD = 22.1), fathers (M = 40.9, SD = 18.7), and children (M = 53.2, SD = 17.6). Higher symptom burden was strongly and consistently associated with worse QOL across informants (r = -.34 to -.69). Conclusion: Preliminary findings indicate high symptom burden in children at EOL and its negative impact on the child’s QOL. Nurses report significantly fewer symptoms than families but higher composite scores when considering frequency, severity, and bother. Implications for Practice: Discrepant reports on symptom burden indicate significant gaps in communication between families and healthcare providers, as well as the need for future research to inform clinical care and improve the QOL of children at the EOL