Bianca M Wiering1, Janneke Noordman2, Kiek Tates3, Marieke Zwaanswijk2, Glyn Elwyn4, Eveline S J M De Bont5, Auke Beishuizen6, Peter M Hoogerbrugge7, Sandra Van Dulmen8. 1. NIVEL (Netherlands Institute for Health Services Research), Utrecht, The Netherlands. Electronic address: B.M.Wiering@uvt.nl. 2. NIVEL (Netherlands Institute for Health Services Research), Utrecht, The Netherlands. 3. Department of Communication and Information Sciences, Tilburg School of Humanities, Tilburg University, Tilburg, The Netherlands. 4. Cochrane Institute for Primary Care and Public Health, Cardiff University, Cardiff, UK; Scientific Institute for Quality of Healthcare, Radboud University Medical Center, Nijmegen, The Netherlands; The Dartmouth Institute for Health Policy and Clinical Practice, Dartmouth College, Hanover, USA; The Dartmouth Center for Health Care Delivery Science, Dartmouth College, Hanover, USA. 5. Division of Pediatric Oncology/Hematology, Department of Pediatrics, Beatrix Children's Hospital, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands. 6. Department of Pediatric Oncology/Hematology, Erasmus MC University Medical Center-Sophia's Children's Hospital, Rotterdam, The Netherlands. 7. Research Institute for Oncology, Radboud University Medical Center, Nijmegen, The Netherlands; Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands. 8. NIVEL (Netherlands Institute for Health Services Research), Utrecht, The Netherlands; Department of Primary and Community Care, Radboud University Medical Center, Nijmegen, The Netherlands; Department of Health Sciences, Buskerud and Vestfold University College, Drammen, Norway.
Abstract
OBJECTIVE: Children and parents need to make important decisions in the period of being informed about the diagnosis of childhood cancer. Although parents' and children's involvement is legally required, it is unclear whether oncologists involve them. This study explored which decisions families face, how oncologists involve them in shared decision-making (SDM) and which factors are associated with this process. METHODS: Forty-three families with children, starting treatment for childhood cancer, were recruited from three Dutch academic pediatric oncology clinics. Diagnostic consultations were audio-taped and coded with the OPTION. RESULTS: On average, 3.5 decisions were discussed per consultation. Most frequently discussed decisions concerned registration in a patient database (42%) and how to deal with hair loss (33%). Oncologists' assistance in SDM focused on giving information and ensuring the parents' and the child's understanding. The hospital in which children were treated (F(2,2)=5.39, p=.01) and discussing trial participation (F(1,1)=8.11, p=.01) were associated with oncologists' assistance. CONCLUSION: Decision-making during diagnostic consultations appears to focus on non-treatment related decisions. Oncologists' assistance mostly concerned sharing information, instead of SDM. PRACTICE IMPLICATIONS: Additional research is needed to provide insight in how to increase oncologists' assistance, while taking into account children's and parents' preferences concerning SDM.
OBJECTIVE:Children and parents need to make important decisions in the period of being informed about the diagnosis of childhood cancer. Although parents' and children's involvement is legally required, it is unclear whether oncologists involve them. This study explored which decisions families face, how oncologists involve them in shared decision-making (SDM) and which factors are associated with this process. METHODS: Forty-three families with children, starting treatment for childhood cancer, were recruited from three Dutch academic pediatric oncology clinics. Diagnostic consultations were audio-taped and coded with the OPTION. RESULTS: On average, 3.5 decisions were discussed per consultation. Most frequently discussed decisions concerned registration in a patient database (42%) and how to deal with hair loss (33%). Oncologists' assistance in SDM focused on giving information and ensuring the parents' and the child's understanding. The hospital in which children were treated (F(2,2)=5.39, p=.01) and discussing trial participation (F(1,1)=8.11, p=.01) were associated with oncologists' assistance. CONCLUSION: Decision-making during diagnostic consultations appears to focus on non-treatment related decisions. Oncologists' assistance mostly concerned sharing information, instead of SDM. PRACTICE IMPLICATIONS: Additional research is needed to provide insight in how to increase oncologists' assistance, while taking into account children's and parents' preferences concerning SDM.
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