Prasanna Ananth1, Sophia Mun2, Noora Reffat3, Randall Li4, Tannaz Sedghi2, Madeline Avery5, Jennifer Snaman5, Cary P Gross6, Xiaomei Ma7, Joanne Wolfe5. 1. Department of Pediatrics, Yale School of Medicine, New Haven, Connecticut, USA; Yale Cancer Outcomes, Public Policy and Effectiveness Research (COPPER) Center, New Haven, Connecticut, USA. Electronic address: prasanna.ananth@yale.edu. 2. Yale Cancer Outcomes, Public Policy and Effectiveness Research (COPPER) Center, New Haven, Connecticut, USA. 3. Biological Sciences Division, University of Chicago Medicine¸ Chicago, Illinois, USA. 4. The Warren Alpert Medical School of Brown University, Providence, Rhode Island, USA. 5. Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Massachusetts, USA; Department of Pediatrics, Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts, USA. 6. Yale Cancer Outcomes, Public Policy and Effectiveness Research (COPPER) Center, New Haven, Connecticut, USA; Department of Internal Medicine, Yale School of Medicine, New Haven, Connecticut, USA. 7. Yale Cancer Outcomes, Public Policy and Effectiveness Research (COPPER) Center, New Haven, Connecticut, USA; Department of Chronic Disease Epidemiology, Yale School of Public Health, New Haven, Connecticut, USA.
Abstract
CONTEXT: Among adults with cancer, measures for high quality end-of-life care (EOLC) include avoidance of hospitalizations near end of life. For children with cancer, no measures exist to evaluate or improve EOLC, and adult quality measures may not apply. OBJECTIVE: We engaged key stakeholders to explore EOLC priorities for children with cancer and their families, and to examine relevance of existing adult EOLC quality measures for children with cancer. METHODS: In a multicenter qualitative study, we conducted interviews and focus groups with: adolescents and young adults (AYAs) with advanced cancer, parents of children with advanced cancer, bereaved parents, and interdisciplinary healthcare professionals. We transcribed, coded, and employed thematic analysis to summarize findings. RESULTS: We enrolled 54 stakeholders (25 parents [including 12 bereaved parents], 10 AYAs, and 19 healthcare professionals). Participants uniformly prioritized direct communication with children about preferences and prognosis, interdisciplinary care, symptom management, and honoring family preference for location of death. Many participants valued access to the emergency department or hospital for symptom management or supportive care, which diverges from measures for high quality EOLC in adults. Most wished to avoid mechanical ventilation and cardiopulmonary resuscitation. Notably, participants generally valued hospice; however, few understood hospice care or had utilized its services. CONCLUSION: Childhood cancer stakeholders define high quality EOLC primarily through person-centered measures, characterizing half of existing adult-focused measures as limited in relevance to children. Future research should focus on developing techniques for person-centered quality measurement to capture attributes of greatest importance to children with cancer and their families.
CONTEXT: Among adults with cancer, measures for high quality end-of-life care (EOLC) include avoidance of hospitalizations near end of life. For children with cancer, no measures exist to evaluate or improve EOLC, and adult quality measures may not apply. OBJECTIVE: We engaged key stakeholders to explore EOLC priorities for children with cancer and their families, and to examine relevance of existing adult EOLC quality measures for children with cancer. METHODS: In a multicenter qualitative study, we conducted interviews and focus groups with: adolescents and young adults (AYAs) with advanced cancer, parents of children with advanced cancer, bereaved parents, and interdisciplinary healthcare professionals. We transcribed, coded, and employed thematic analysis to summarize findings. RESULTS: We enrolled 54 stakeholders (25 parents [including 12 bereaved parents], 10 AYAs, and 19 healthcare professionals). Participants uniformly prioritized direct communication with children about preferences and prognosis, interdisciplinary care, symptom management, and honoring family preference for location of death. Many participants valued access to the emergency department or hospital for symptom management or supportive care, which diverges from measures for high quality EOLC in adults. Most wished to avoid mechanical ventilation and cardiopulmonary resuscitation. Notably, participants generally valued hospice; however, few understood hospice care or had utilized its services. CONCLUSION: Childhood cancer stakeholders define high quality EOLC primarily through person-centered measures, characterizing half of existing adult-focused measures as limited in relevance to children. Future research should focus on developing techniques for person-centered quality measurement to capture attributes of greatest importance to children with cancer and their families.
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