Do-not-resuscitate orders and/or hospice care, psychological health, and quality of life among children/adolescents with acquired immune deficiency syndrome.
OBJECTIVE
The frequency of do-not-resuscitate (DNR) orders and hospice enrollment in children/adolescents living with acquired immune deficiency syndrome (AIDS) and followed in Pediatric AIDS Clinical Trials Group (PACTG) Study 219C was examined, and evaluated for any association with racial disparities or enhanced quality of life (QOL), particularly psychological adjustment.


METHODS
A cross-sectional analysis of children with AIDS enrolled in this prospective multicenter observational study between 2000 and 2005 was conducted to evaluate the incidence of DNR/hospice overall and by calendar time. Linear regression models were used to compare caregivers' reported QOL scores within 6 domains between those with and without DNR/hospice care, adjusting for confounders.


RESULTS
Seven hundred twenty-six (726) children with AIDS had a mean age of 12.9 years (standard deviation [SD]=4.5), 51% were male, 60% black, 25% Hispanic. Twenty-one (2.9%) had either a DNR order (n=16), hospice enrollment (n=7), or both (n=2). Of 41 children who died, 80% had no DNR/hospice care. Increased odds of DNR/hospice were observed for those with CD4% less than 15%, no current antiretroviral use, and prior hospitalization. No differences by race were detected. Adjusted mean QOL scores were significantly lower for those with DNR/hospice enrollment than those without across all domains except for psychological status and health care utilization. Poorer psychological status correlated with higher symptom distress, but not with DNR/hospice enrollment after adjusting for symptoms.


CONCLUSIONS
Children who died of AIDS rarely had DNR/hospice enrollment. National guidelines recommend that quality palliative care be integrated routinely with HIV care. Further research is needed to explore the barriers to palliative care and advance care planning in this population.
Lyon
Maureen E
ME
Department of Adolescent and Young Adult Medicine, Children's National Medical Center, Washington, DC 20010-2970, USA. mlyon@cnmc.org
Williams
Paige L
PL
Woods
Elizabeth R
ER
Hutton
Nancy
N
Butler
Anne M
AM
Sibinga
Erica
E
Brady
Michael T
MT
Oleske
James M
JM
D000163:Acquired Immunodeficiency Syndrome / Q000503:physiopathology / Q000523:psychology* / Q000628:therapy; D000293:Adolescent; D002648:Child; D003430:Cross-Sectional Studies; D005260:Female; D017051:Hospice Care / Q000379:methods*; D006801:Humans; D016014:Linear Models; D008297:Male; D010166:Palliative Care / Q000379:methods*; D011446:Prospective Studies; D016414:Resuscitation Orders; D018434:Sickness Impact Profile