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Fritz, L.; Zwinkels, H.; Koekkoek, J.A.F.; Reijneveld, J.C.; Vos, M.J.; Dirven, L.; ... ; Taphoorn, M.J.B. (2020)

Advance care planning in glioblastoma patients: development of a disease-specific ACP program

Article / Letter to editor
Background It is unknown if the implementation of an advance care planning (ACP) program is feasible in daily clinical practice for glioblastoma patients. We aimed to develop an ACP program and assess the preferred content, the best time to introduce such a program in the disease trajectory, and possible barriers and facilitators for participation and implementation. Methods A focus group with health care professionals (HCPs) and individual semi-structured interviews with patients and proxies (of both living and deceased patients) were conducted. Results All predefined topics were considered relevant by participants, including the current situation, worries/fears, (supportive) treatment options, and preferred place of care/death. Although HCPs and proxies of deceased patients indicated that the program should be implemented relatively early in the disease trajectory, patient-proxy dyads were more ambiguous. Several patient-proxy dyads indicated that the program should be initiated...Show moreBackground It is unknown if the implementation of an advance care planning (ACP) program is feasible in daily clinical practice for glioblastoma patients. We aimed to develop an ACP program and assess the preferred content, the best time to introduce such a program in the disease trajectory, and possible barriers and facilitators for participation and implementation. Methods A focus group with health care professionals (HCPs) and individual semi-structured interviews with patients and proxies (of both living and deceased patients) were conducted. Results All predefined topics were considered relevant by participants, including the current situation, worries/fears, (supportive) treatment options, and preferred place of care/death. Although HCPs and proxies of deceased patients indicated that the program should be implemented relatively early in the disease trajectory, patient-proxy dyads were more ambiguous. Several patient-proxy dyads indicated that the program should be initiated later in the disease trajectory. If introduced early, topics about the end of life should be postponed. A frequently mentioned barrier for participation was that the program would be too confronting, while a facilitator was adequate access to information. Conclusion This study resulted in an ACP program specifically for glioblastoma patients. Although participants agreed on the program content, the optimal timing of introducing such a program was a matter of debate. Our solution is to offer the program shortly after diagnosis but let patients and proxies decide which topics they want to discuss and when. The impact of the program on several patient- and care-related outcomes will be evaluated in the next step.Show less
Advance care planning
Glioblastoma
End of life care
Brain tumor
Health-related quality of life
All authors
Fritz, L.; Zwinkels, H.; Koekkoek, J.A.F.; Reijneveld, J.C.; Vos, M.J.; Dirven, L.; Pasman, H.R.W.; Taphoorn, M.J.B.
Date
2020-03-01
Journal
Supportive Care in Cancer
Volume
28
Issue
3
Pages
1315 - 1324
DOI
doi:10.1007/s00520-019-04916-9
Link
https://link.springer.com/article/10.1007/s00520-019-04916-9