Abstract
Simple SummaryPalliative care (PC) can improve the quality of life for pediatric cancer patients, yet these services remain underutilized, with referrals occurring late in the disease course or not at all. We previously described the patient and family characteristics that diverse pediatric oncology providers agree should be high yield triggers for PC referral in pediatric cancer patients. The current study examined how often those triggers were associated with a completed PC consult for a cohort of 931 patients. We discovered that PC referrals occur very infrequently and patients with stated triggers often do not get referred. These findings help support the need for a screening tool to standardize PC integration and improve care.Palliative care (PC) integration into the care of pediatric oncology patients is growing in acceptance and has been shown to improve the quality of life of children with cancer. Yet timing for referrals and referral practices remain inconsistent, and PC remains underutilized. We conducted a retrospective chart review of pediatric oncology patients treated at an academic institution between January 2015 to November 2018. Data collected included demographics, disease and therapy characteristics, and consultation notes, specifically documenting existence of predetermined “high yield triggers” for PC consultation. Among 931 eligible patients the prevalence of PC consultation was 5.6% while approximately 94% of patients had at least 1 trigger for PC consultation. The triggers that more often resulted in PC consultation included: symptom management needs (98%; n = 51) high-risk disease (86%; n = 45), poor prognosis (83%; n = 43), multiple lines of therapy (79%; n = 41) and a documented ICU admission (67%; n = 35). Our findings suggest that the high yield triggers for palliative care consultation that pediatric oncologists identify as important are not translating into practice; incorporating these triggers into a screening tool may be the next step to improve early PC integration.
Highlights
Palliative care (PC) has been shown to improve quality of life, symptom distress, communication needs and end of life care for pediatric patients and has become increasingly accepted in the realm of pediatric oncology [1,2,3,4]
Our findings suggest that a starting point for increasing PC involvement is a trigger-based tool to help pediatric oncology providers improve the integration of PC into the care of children with cancer
In one of our earlier studies, we found that providers were able to theorize ideal triggers for PC referral better than they were able to identify them in a clinical case scenario [15]
Summary
Palliative care (PC) has been shown to improve quality of life, symptom distress, communication needs and end of life care for pediatric patients and has become increasingly accepted in the realm of pediatric oncology [1,2,3,4]. Actual consultation continues to occur late in the disease course [5,6] even as advances in pediatric oncology have shifted the paradigm from cure-based to chronic illness, underscoring the relevance of earlier PC involvement [7]. Issues like difficult-tomanage symptoms, complex family dynamics, and challenging care decisions regarding life-sustaining treatment and potential hospice involvement regularly prompt PC referrals across multiple pediatric specialties. Time constraints, limited formalized PC training and education, nuances of the therapeutic relationship, and complex physical and psychological symptoms may warrant referral for PC subspecialty care [10,11,12]. In a recent semi-structured interview study pediatric oncology provider identified patient triggers for early PC referral and endorsed the development of a standardized screening tool with these triggers to facilitate earlier PC involvement [15]. This study aimed to determine how often patients at a major cancer center had the documented triggers for PC consultation, and among them, how many received a PC consult
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