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

Lara Fritz, Hanneke Zwinkels, Johan A. F. Koekkoek, Jaap C. Reijneveld, Maaike J. Vos, Linda Dirven, H. Roeline W. Pasman, Martin J. B. Taphoorn

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

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 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.
Original languageEnglish
JournalSupportive Care in Cancer
DOIs
Publication statusPublished - 2019

Cite this

@article{8341246fa2a348dcb5acc93f4417bcdf,
title = "Advance care planning in glioblastoma patients: development of a disease-specific ACP program",
abstract = "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 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.",
author = "Lara Fritz and Hanneke Zwinkels and Koekkoek, {Johan A. F.} and Reijneveld, {Jaap C.} and Vos, {Maaike J.} and Linda Dirven and Pasman, {H. Roeline W.} and Taphoorn, {Martin J. B.}",
year = "2019",
doi = "10.1007/s00520-019-04916-9",
language = "English",
journal = "Supportive Care in Cancer",
issn = "0941-4355",
publisher = "Springer Verlag",

}

Advance care planning in glioblastoma patients: development of a disease-specific ACP program. / Fritz, Lara; Zwinkels, Hanneke; Koekkoek, Johan A. F.; Reijneveld, Jaap C.; Vos, Maaike J.; Dirven, Linda; Pasman, H. Roeline W.; Taphoorn, Martin J. B.

In: Supportive Care in Cancer, 2019.

Research output: Contribution to journalArticleAcademicpeer-review

TY - JOUR

T1 - Advance care planning in glioblastoma patients: development of a disease-specific ACP program

AU - Fritz, Lara

AU - Zwinkels, Hanneke

AU - Koekkoek, Johan A. F.

AU - Reijneveld, Jaap C.

AU - Vos, Maaike J.

AU - Dirven, Linda

AU - Pasman, H. Roeline W.

AU - Taphoorn, Martin J. B.

PY - 2019

Y1 - 2019

N2 - 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 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.

AB - 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 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.

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SN - 0941-4355

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