Mariken E Stegmann1, Olaf P Geerse2,3, Dorien Tange4, Carol Richel5, Linda Brom6,7, Vivian Engelen4, Saskia F A Duijts2,6,8. 1. Department of General Practice and Elderly Care Medicine, University of Groningen, University Medical Center Groningen, Antonius Deusinglaan 1, FA 21, 9713 AV, Groningen, The Netherlands. m.e.stegmann@umcg.nl. 2. Department of General Practice and Elderly Care Medicine, University of Groningen, University Medical Center Groningen, Antonius Deusinglaan 1, FA 21, 9713 AV, Groningen, The Netherlands. 3. Department of Pulmonary Diseases and Tuberculosis, University of Groningen, University Medical Center Groningen, Groningen, The Netherlands. 4. Dutch Federation of Cancer Patients Organisations (Nederlandse Federatie van Kankerpatiëntorganisaties, NFK), Utrecht, The Netherlands. 5. Dutch Breast Cancer Association (Borstkankervereniging Nederland, BVN), Utrecht, The Netherlands. 6. The Netherlands Comprehensive Cancer Organisation, Utrecht, The Netherlands. 7. Netherlands Association for Palliative Care (PZNL), Utrecht, the Netherlands. 8. Department of Public and Occupational Health, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam Public Health Research Institute, Amsterdam, The Netherlands.
Abstract
INTRODUCTION: Patients faced with incurable cancer may experience a lack of support from their physician throughout and after treatment. Studies on the needs and experiences of these patients are scarce. In this study, we explored the needs and experiences of patients diagnosed with incurable cancer regarding the conversation, in which they were told that their cancer was incurable, the care received after this conversation, and their preferences regarding end-of-life conversations. METHODS: Data were cross-sectionally collected through a national online survey in the Netherlands (September 2018). Descriptive statistics and correlation coefficients were reported and subgroups were compared. RESULTS: Six hundred fifty-four patients (mean age 60 years; 58% women) completed the survey. Patients were primarily diagnosed with breast cancer (22%) or a hematological malignancy (21%). Patients reported a strong need for emotional support during the conversation, in which they were told their cancer was incurable (mean score 8.3; scale 1-10). Their experienced satisfaction with received emotional support was mediocre (mean score 6.4; scale 1-10). Of those patients who felt like they did not receive any additional care (37%) after the diagnosis, the majority expressed a clear need for this kind of care (59%). Mostly, support pertained to psychosocial issues. Regarding conversations about the end of life, most patients (62%) expressed a need to discuss this topic, and preferred their healthcare provider to initiate this conversation. CONCLUSION: Care for patients with incurable cancer can be further improved by tailoring conversations to specific needs and timely providing appropriate supportive care services.
INTRODUCTION:Patients faced with incurable cancer may experience a lack of support from their physician throughout and after treatment. Studies on the needs and experiences of these patients are scarce. In this study, we explored the needs and experiences of patients diagnosed with incurable cancer regarding the conversation, in which they were told that their cancer was incurable, the care received after this conversation, and their preferences regarding end-of-life conversations. METHODS: Data were cross-sectionally collected through a national online survey in the Netherlands (September 2018). Descriptive statistics and correlation coefficients were reported and subgroups were compared. RESULTS: Six hundred fifty-four patients (mean age 60 years; 58% women) completed the survey. Patients were primarily diagnosed with breast cancer (22%) or a hematological malignancy (21%). Patients reported a strong need for emotional support during the conversation, in which they were told their cancer was incurable (mean score 8.3; scale 1-10). Their experienced satisfaction with received emotional support was mediocre (mean score 6.4; scale 1-10). Of those patients who felt like they did not receive any additional care (37%) after the diagnosis, the majority expressed a clear need for this kind of care (59%). Mostly, support pertained to psychosocial issues. Regarding conversations about the end of life, most patients (62%) expressed a need to discuss this topic, and preferred their healthcare provider to initiate this conversation. CONCLUSION: Care for patients with incurable cancer can be further improved by tailoring conversations to specific needs and timely providing appropriate supportive care services.
Entities:
Keywords:
Advance care planning; Cancer; Cross-sectional; End-of-life care; Palliative care; Shared decision making
Authors: Amber D Zegers; Pieter Coenen; Mirjam van Belzen; Vivian Engelen; Carol Richel; Desiree J S Dona; Allard J van der Beek; Saskia F A Duijts Journal: Psychooncology Date: 2020-10-19 Impact factor: 3.894
Authors: M E Stegmann; D Brandenbarg; A K L Reyners; W H van Geffen; T J N Hiltermann; A J Berendsen Journal: Support Care Cancer Date: 2020-12-22 Impact factor: 3.359
Authors: Mariken E Stegmann; Olaf P Geerse; Lia van Zuylen; Larissa Nekhlyudov; Daan Brandenbarg Journal: Cancers (Basel) Date: 2021-05-23 Impact factor: 6.639
Authors: Marijanne Engel; Annemieke van der Padt-Pruijsten; Auke M T Huijben; T Martijn Kuijper; Maria B L Leys; Annemieke Talsma; Agnes van der Heide Journal: Eur J Cancer Care (Engl) Date: 2021-10-26 Impact factor: 2.328