title: Quality of life for children with life-limiting and life-threatening illnesses: description and evaluation of a regional, collaborative model for pediatric palliative care.
abstract: The care of children in the U.S. with life-limiting illnesses is inadequate. Misallocated resources, flawed assumptions and models of care, and a lack of appropriate professional education foster a costly, inefficient system that falls short of its true potential. This article details the evolution of a regional, shared approach to address these issues, the District of Columbia Pediatric Palliative Care Collaboration (DCPPCC), and includes its evolution, preliminary clinical results, and assessment of barriers encountered.
authors.affiliation: District of Columbia Pediatric Palliative Care Collaboration. srogers@dcppcc.org
authors.forename: Susan K
authors.initials: SK
authors.lastname: Rogers
authors.forename: Carlos F
authors.initials: CF
authors.lastname: Gomez
authors.forename: Philip
authors.initials: P
authors.lastname: Carpenter
authors.forename: Jean
authors.initials: J
authors.lastname: Farley
authors.forename: Debbie
authors.initials: D
authors.lastname: Holson
authors.forename: Miriam
authors.initials: M
authors.lastname: Markowitz
authors.forename: Brian
authors.initials: B
authors.lastname: Rood
authors.forename: Karen
authors.initials: K
authors.lastname: Smith
authors.forename: Peter
authors.initials: P
authors.lastname: Nigra
mesh_terms: D000293:Adolescent; D035843:Biomedical Research / Q000458:organization & administration; D002648:Child; D002675:Child, Preschool; D003266:Continuity of Patient Care / Q000458:organization & administration; D004219:District of Columbia; D005260:Female; D006282:Health Personnel / Q000458:organization & administration* / Q000523:psychology; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D007318:Inservice Training; D008297:Male; D010166:Palliative Care / Q000458:organization & administration* / Q000523:psychology; D010372:Pediatrics / Q000458:organization & administration*; D015397:Program Evaluation; D011787:Quality of Health Care / Q000458:organization & administration; D011788:Quality of Life; D012017:Referral and Consultation / Q000458:organization & administration; D013727:Terminal Care / Q000458:organization & administration* / Q000523:psychology