Ivana M M van der Geest1, Patrick J E Bindels2, Saskia M F Pluijm3, Erna M C Michiels4, Agnes van der Heide5, Rob Pieters6, Anne-Sophie E Darlington7, Marry M van den Heuvel-Eibrink6. 1. Department of Pediatric Oncology and Hematology, Erasmus MC-Sophia Children's Hospital, Rotterdam, The Netherlands; Princess Màxima Center for Pediatric Oncology, Utrecht, The Netherlands. Electronic address: i.vandergeest@erasmusmc.nl. 2. Department of General Practice, Erasmus MC, Rotterdam, The Netherlands. 3. Department of Pediatric Oncology and Hematology, Erasmus MC-Sophia Children's Hospital, Rotterdam, The Netherlands; Princess Màxima Center for Pediatric Oncology, Utrecht, The Netherlands. 4. Department of Pediatric Oncology and Hematology, Erasmus MC-Sophia Children's Hospital, Rotterdam, The Netherlands. 5. Department of Public Health, Erasmus MC, Rotterdam, The Netherlands. 6. Princess Màxima Center for Pediatric Oncology, Utrecht, The Netherlands. 7. Faculty of Health Sciences, University of Southampton, Southampton, United Kingdom.
Abstract
CONTEXT: Although a large percentage of children with advanced-stage cancer die at home, remarkably little information is available regarding the experience of general practitioners (GPs) with respect to providing home-based palliative care to children with incurable cancer. OBJECTIVES: The objective of this study was to explore the perspectives of GPs who care for children with advanced-stage cancer in a home-based setting. METHODS: In this cross-sectional study, 144 GPs who provided home-based palliative care to 150 children with incurable cancer from 2001 through 2010 were invited to complete a questionnaire addressing their perspectives regarding: 1) symptom management, 2) collaboration with other health care professionals, 3) the child's death and care after death, and 4) impact of having provided palliative care, scored on distress thermometer (range 0-10). RESULTS: A total of 112 GPs (78%) responded, and 91 GPs completed the questionnaire for 93 patients. The median interval between the child's death and completing the questionnaire was seven years. The most prevalent symptoms reported in the patients were fatigue (67%) and pain (61%). Difficulties with communicating with (14%), coordinating with (11%), collaborating with (11%), and contacting (2%) fellow members of the multidisciplinary treatment team were rare. Hectic (7%) and shocking (5%) situations and panic (2%) around the child's death were rare. GPs reported feelings of sadness (61%) and/or powerlessness (43%) around the time of the patient's death, and they rated their own distress level as relatively high during the terminal phase (median score 6, range 0-9.5). The majority of GPs (94%) reported that they ultimately came to terms with the child's death. CONCLUSION: In general, GPs appear to be satisfied with the quality of home-based palliative care that they provide pediatric patients with incurable cancer. Communication among health care professionals is generally positive and is considered important. Finally, although the death of a pediatric patient has a profound impact on the GP, the majority of GPs eventually come to terms with the child's death.
CONTEXT: Although a large percentage of children with advanced-stage cancer die at home, remarkably little information is available regarding the experience of general practitioners (GPs) with respect to providing home-based palliative care to children with incurable cancer. OBJECTIVES: The objective of this study was to explore the perspectives of GPs who care for children with advanced-stage cancer in a home-based setting. METHODS: In this cross-sectional study, 144 GPs who provided home-based palliative care to 150 children with incurable cancer from 2001 through 2010 were invited to complete a questionnaire addressing their perspectives regarding: 1) symptom management, 2) collaboration with other health care professionals, 3) the child's death and care after death, and 4) impact of having provided palliative care, scored on distress thermometer (range 0-10). RESULTS: A total of 112 GPs (78%) responded, and 91 GPs completed the questionnaire for 93 patients. The median interval between the child's death and completing the questionnaire was seven years. The most prevalent symptoms reported in the patients were fatigue (67%) and pain (61%). Difficulties with communicating with (14%), coordinating with (11%), collaborating with (11%), and contacting (2%) fellow members of the multidisciplinary treatment team were rare. Hectic (7%) and shocking (5%) situations and panic (2%) around the child's death were rare. GPs reported feelings of sadness (61%) and/or powerlessness (43%) around the time of the patient's death, and they rated their own distress level as relatively high during the terminal phase (median score 6, range 0-9.5). The majority of GPs (94%) reported that they ultimately came to terms with the child's death. CONCLUSION: In general, GPs appear to be satisfied with the quality of home-based palliative care that they provide pediatric patients with incurable cancer. Communication among health care professionals is generally positive and is considered important. Finally, although the death of a pediatric patient has a profound impact on the GP, the majority of GPs eventually come to terms with the child's death.
Authors: Malin de Flon; Gisela Glaffey; Linda Jarl; Kristin Sellbrant; Stefan Nilsson Journal: Int J Environ Res Public Health Date: 2021-06-09 Impact factor: 3.390
Authors: Katie Greenfield; Simone Holley; Daniel E Schoth; Emily Harrop; Richard F Howard; Julie Bayliss; Lynda Brook; Satbir S Jassal; Margaret Johnson; Ian Wong; Christina Liossi Journal: Palliat Med Date: 2020-03-31 Impact factor: 4.762