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Methods: This retrospective chart review study examined patients who were referred to the palliative care team at a southwestern Pennsylvania children’s hospital between the ages 2 through 16 years during a five-year period (2009-2013). Inpatient and outpatient data were collected from the electronic medical record through a combination of electronic and hand methods. Hand data collection essentially eliminated missing data from the computer-generated data set. Data were proofed, de-identified, and checked for outliers. Gender, race, religion, and age variables were grouped into categories for analysis. The main outcome was patient survival measured in years based on disease type beginning with referral to palliative care and ending with death, loss to follow up, or the end of the study period. The cohort was examined using Kaplan-Meier estimation and Cox regression modeling to estimate survival curves and build predictive models of survival considering sociodemographic and clinical characteristics of gender, age, race, religion, and disease categories. Daily mean pain scores were calculated. Patients were included in the pain score analysis if they had pain scores for minimum three days pre- and five days post-referral date.
Results: There were 256 children in the cohort with a mean age at referral of 9.5 years (SD=4.5 years), 53.5% male and 61.7% were alive at the end of the study period. Ages at referral were 22.3% preschool (ages 2-4), 23.0% early elementary (ages 5-8), 28.5% late elementary (ages 9-12), and 26.2% adolescent (ages 13-16). Race included 87.5% white, 10.2% black, and 2.3% other (Hispanic, Asian, Middle Eastern, and not specified). Religion was 19.1% Catholic, 23.8% protestant, 23.9% other, and 33.2% stated no religion. The referring diagnosis included 41.8% cancer, 37.9% congenital or genetic conditions, 9% transplant (both solid organ and bone marrow), 5.5% trauma, and 5.5% other. Most children had more than one concurrent diagnostic condition (range 1 to 13 out of 15 possible illness categories, mean 5.34, SD = 2.69). Mean time from diagnosis to referral to palliative care was 4.36 years (SD = 4.99, range 0 to 16.97 years, median 2.3 years) and mean time from diagnosis to death was 3.26 years (SD = 3.53, range 14 days to 15.25 years, median 1.76 years). Using the log-rank test, patient survival experience did not differ significantly based on patient gender, age, race, or religion; however, patient survival experience did vary based on referring diagnosis (Chi square=40.3df=4, p<.001), specifically cancer. Cox regression models were not significant for gender age or race but there were differences for religion (none p < .001 and other p < .001), cancer (p < .001), congenital/genetic conditions (p < .001), and trauma (p = .015). Pain scores were significantly different after referral to palliative care when compared to pain scores before referral to palliative care, t(47) = 1.816, p < .05, one tailed directional test.
Conclusion: Pediatric palliative care is not well described in the literature. This study describes one large cohort of children aged 2 to 16 years receiving palliative care in the United States over a 5-year period. Practitioners tend to think of palliative care exclusively for children with cancer but less than half of the children in this cohort were referred because of a cancer diagnosis while nearly as many children suffered from a congenital or genetic illness such as cystic fibrosis, cerebral palsy, or a cardiac condition. These results demonstrate that this particular palliative care service is effective in admitting children to palliative care relatively early in the disease process and also suggest that palliative care can be maintained for a long period of time. Palliative care promotes positive clinical outcomes including symptom management, discussing goals of care, and communication between families and medical providers. Pain management for pediatric patients can be challenging in countries such as the United States but even more difficult in developing countries. This difficulty is due to a combination of lack of education around the assessment and treatment of pain in children and a severe shortage of available pain medications. Education in palliative care for health care providers has been conducted in a growing number of countries outside of the United States, however the pediatric population receives less attention than older adults. Well-trained palliative care providers can increase quality of life for children with life threatening and life limiting illness worldwide.