title: Moving toward quality palliative cancer care: parent and clinician perspectives on gaps between what matters and what is accessible.
abstract: OBJECTIVE
  The National Consensus Project (NCP) published a set of standards for quality palliative care delivery. A key step before applying these guidelines to pediatric oncology is to evaluate how much families and clinicians value these standards. We aimed to determine which elements of palliative care are considered important according to bereaved parents and pediatric oncology clinicians and to determine accessibility of these elements.
  
  
  METHODS
  We administered questionnaires to 75 bereaved parents (response rate, 54%) and 48 pediatric oncology clinicians (response rate, 91%) at a large teaching hospital. Outcome measures included importance ratings and accessibility of core elements of palliative care delivery.
  
  
  RESULTS
  Fifteen of 20 core elements were highly valued by both parents and clinicians (defined as > 60% of parents and clinicians reporting the item as important). Compared with clinicians, parents gave higher ratings to receiving cancer-directed therapy during the last month of life (P < .01) and involvement of a spiritual mentor (P = .03). Of the valued elements, only three were accessible more than 60% of the time according to clinicians and parents. Valued elements least likely to be accessible included a direct admission policy to hospital, sibling support, and parent preparation for medical aspects surrounding death.
  
  
  CONCLUSIONS
  Parents and clinicians highly value a majority of palliative care elements described in the NCP framework. Children with advanced cancer may not be receiving key elements of palliative care despite parents and clinicians recognizing them as important. Evaluation of barriers to provision of quality palliative care and strategies for overcoming them are critical.
authors.affiliation: Hospital for Sick Children, Ontario, Canada.
authors.forename: Alisha
authors.initials: A
authors.lastname: Kassam
authors.forename: Julia
authors.initials: J
authors.lastname: Skiadaresis
authors.forename: Sharifa
authors.initials: S
authors.lastname: Habib
authors.forename: Sarah
authors.initials: S
authors.lastname: Alexander
authors.forename: Joanne
authors.initials: J
authors.lastname: Wolfe
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D003695:Delivery of Health Care / Q000458:organization & administration* / Q000592:standards; D005260:Female; D006297:Health Services Accessibility; D006784:Hospitals, Teaching; D006801:Humans; D007938:Leukemia / Q000628:therapy; D008223:Lymphoma / Q000628:therapy; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000628:therapy; D009864:Ontario; D010166:Palliative Care / Q000592:standards*; D010290:Parents; D010348:Patient Care Team; D011787:Quality of Health Care; D011795:Surveys and Questionnaires; D014481:United States