Originally published as JCO Early Release 10.1200/JCO.2005.04.010 on September 19 2005

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Parent and Physician Perspectives on Quality of Care at the End of Life in Children With Cancer

From the Departments of Pediatric Oncology and Adult Oncology, and the Center for Outcomes and Policy Research, Dana-Farber Cancer Institute; Department of Medicine, Children's Hospital; Department of Medicine, Brigham and Women's Hospital, Boston, MA; Departments of Pediatric Hematology-Oncology and Pediatric Palliative Care, The Children's Hospital at The Cleveland Clinic and The Cleveland Clinic Lerner College of Medicine, Cleveland, OH; and Department of Pediatric Hematology-Oncology, Children's Hospitals and Clinics, St Paul, MN

Address reprint requests to Joanne Wolfe, MD, MPH, Center for Outcomes and Policy Research and Department of Pediatric Oncology, Dana-Farber Cancer Institute, 44 Binney St, Boston, MA 02115; e-mail: joanne_wolfe{at}dfci.harvard.edu

PURPOSE: To ascertain parents' and physicians' assessments of quality of end-of-life care for children with cancer and to determine factors associated with high-quality care as perceived by parents and physicians.

METHODS: A survey was conducted between 1997 and 2001 of 144 parents of children who received treatment at the Dana-Farber Cancer Institute and Children's Hospital (Boston, MA) or Children's Hospitals and Clinics of St Paul and Minneapolis, MN, between 1990 and 1999 (65% of those located and eligible) and 52 pediatric oncologists.

RESULTS: In multivariable models, higher parent ratings of physician care were associated with physicians giving clear information about what to expect in the end-of-life period (odds ratio [OR] = 19.90, P = .02), communicating with care and sensitivity (OR = 7.67, P < .01), communicating directly with the child when appropriate (OR = 11.18, P < .01), and preparing the parent for circumstances surrounding the child's death (OR = 4.84, P = .03). Parent reports of the child's pain and suffering were not significant correlates of parental ratings of care (P = .93 and .35, respectively). Oncologists' ratings of care were inversely associated with the parent's report of the child's experience of pain (OR = 0.15, P = .01) and more than 10 hospital days in the last month of life (OR = 0.24, P < .01). Parent-rated communication factors were not correlates of oncologist-rated care. No association was found between parent and physician care ratings (P = .88).

CONCLUSION: For parents of children who die of cancer, doctor-patient communication is the principal determinant of high-quality physician care. In contrast, physicians' care ratings depend on biomedical rather than relational aspects of care.

Supported by Grant No. NCI 5 K07 CA 096746 from the National Cancer Institute and a Child Health Research Grant from the Charles H. Hood Foundation, Inc (J.W.); a fellowship from the Agency for Healthcare Research and Quality (T32 HS00063; J.W.M.); and the Pine Tree Apple Tennis Classic Oncology Research Fund (J.W. and C.M.).

Authors' disclosures of potential conflicts of interest are found at the end of this article.

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