Improved quality of life at end of life related to home-based palliative care in children with cancer.
BACKGROUND
Nearly 2000 children die due to a malignancy in the United States annually. Emerging data suggest that home is the desired location of care for children with cancer at end of life. However, one obstacle to enrollment in a pediatric palliative care (PPC) home care program may be fear that distressing symptoms at end of life cannot be adequately managed outside the hospital.


OBJECTIVE
To compare the symptom distress and quality-of-life experience for children who received concurrent end-of-life care from a PPC home care program (PPC/Oncology) with that of those who died without exposure to the PPC program (Oncology).


METHODS
We conducted a retrospective survey study of a cohort of bereaved parents of children who died of cancer between 2002 and 2008 at a U.S. tertiary pediatric institution.


RESULTS
Sixty bereaved parents were surveyed (50% PPC/Oncology). Prevalence of constipation and high distress from fatigue were more common in the PPC/Oncology group; other distressing symptoms were similar between groups, showing room for improvement. Children who received PPC/Oncology were significantly more likely to have fun (70% versus 45%), to experience events that added meaning to life (89% versus 63%), and to die at home (93% versus 20%).


CONCLUSIONS
This is the first North American study to assess outcomes among children with cancer who received concurrent oncology and palliative home care compared with those who received oncology care alone. Symptom distress experiences were similar in groups. However, children enrolled in a PPC home care program appear to have improved quality of life and are more likely to die at home.
1 Department of Pain Medicine, Palliative Care, and Integrative Medicine, Children's Hospitals and Clinics of Minnesota , Minneapolis/St. Paul, Minnesota.
Stefan J
SJ
Friedrichsdorf
Andrea
A
Postier
Jill
J
Dreyfus
Kaci
K
Osenga
Susan
S
Sencer
Joanne
J
Wolfe
D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D015331:Cohort Studies; D005260:Female; D006699:Home Care Services; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D008910:Minnesota; D009369:Neoplasms / Q000451:nursing*; D009859:Oncology Nursing / Q000379:methods*; D010166:Palliative Care / Q000379:methods*; D011788:Quality of Life; D012189:Retrospective Studies; D013727:Terminal Care / Q000379:methods*; D019452:Terminally Ill / Q000523:psychology*