Objective(s): To develop a questionnaire that assesses the level of comprehension and decision-making capacity of patients with breast cancer about palliative care and advance care planning. Methods: Questionnaire items were based on the scientific literature. Delphi Consensus, a three-round survey with experts (n = 14), evaluated the relevance, clarity, and redundancies of the items. A pretest with breast cancer patients (n = 15) evaluated whether they comprehended each item and identified doubts or discomforts. Results: The initial questionnaire was composed of 38 items. After the Delphi, 18 items were restructured, six were added, and 16 were removed. In the pretest phase, all items with the survey header, guidelines, and Likert model were evaluated. All items accomplished ≥80% cut-off score and were kept as in the original version. The final version of the questionnaire have 28 itens and five domains: determination, responsibility, independence, self-knowledge, and knowledge of reality. Conclusions: This study represents the first step in the development of a questionnaire that may be used in oncology clinical practice. The main findings revealed that Delphi and pretesting increased the quality of the questionnaire, making it compelling to assess breast cancer patients’ comprehension and decision-making capacity about PC and ACP.
ShenMJWellmanJD. Evidence of palliative care stigma: the role of negative stereotypes in preventing willingness to use palliative care. Palliat Support Care. 2019;17(4):374‐380. doi: 10.1017/S1478951518000834
2.
HardingRNairSEkstrandM. Multilevel model of stigma and barriers to cancer palliative care in India: a qualitative study. BMJ Open. 2019;9(3):e024248corr1. doi: 10.1136/bmjopen-2018-024248.
3.
GrantMSBackALDettmarNS. Public perceptions of advance care planning, palliative care, and hospice: a scoping review. J Palliat Med. 2021;24(1):46‐52. doi: 10.1089/jpm.2020.0111
4.
JiaZYehIMLeeCHYeungASTulskyJALeiterRE. Barriers and facilitators to advance care planning among Chinese patients with advanced cancer and their caregivers. J Palliat Med. 2022;25(5):774‐782. doi: 10.1089/jpm.2021.0404
5.
NiranjanSJHuangCSDionne-OdomJN, et al.Lay patient Navigators’ perspectives of barriers, facilitators and training needs in initiating advance care planning conversations with older patients with cancer. J Palliat Care. 2018;33(2):70‐78. doi: 10.1177/0825859718757131
6.
EthierJLParamsothyTYouJJFowlerRGandhiS. Perceived barriers to goals of care discussions with patients with advanced cancer and their families in the ambulatory setting: a multicenter survey of oncologists. J Palliat Care. 2018;33(3):125‐142. doi: 10.1177/0825859718762287
7.
RodiHDeteringKSellarsM, et al.Exploring advance care planning awareness, experiences, and preferences of people with cancer and support people: an Australian online cross-sectional study. Support Care Cancer. 2021;29(7):3677‐3688. doi: 10.1007/s00520-020-05878-z
8.
MartinaDLinCPKristantiMS, et al.Advance care planning in Asia: a systematic narrative review of healthcare Professionals’ knowledge, attitude, and experience. J Am Med Dir Assoc. 2021;22(2):349.e1‐349.e28. doi: 10.1016/j.jamda.2020.12.018.
9.
KishinoMEllis-SmithCAfolabiOKoffmanJ. Family involvement in advance care planning for people living with advanced cancer: a systematic mixed-methods review. Palliat Med. 2022;36(3):462‐477. doi: 10.1177/02692163211068282
10.
McMahanRDTellezISudoreRL. Deconstructing the complexities of advance care planning outcomes: what do we know and where do we go? A scoping review. J Am Geriatr Soc. 2021;69(1):234‐244. doi: 10.1111/jgs.16801
11.
SherryDDodgeLEBussM. Is primary care physician involvement associated with earlier advance care planning?: a study of patients in an academic primary care setting. J Palliat Med. 2022;25(1):75‐80. doi: 10.1089/jpm.2021.0069
12.
van DyckLIPaivaAReddingCAFriedTR. Understanding the role of knowledge in advance care planning engagement. J Pain Symptom Manage. 2021;62(4):778‐784. doi: 10.1016/j.jpainsymman.2021.02.011
13.
FacioneP. Critical thinking: a statement of expert consensus for purposes of educational assessment and instruction (the Delphi report). Educational Resources Information Center (ERIC). 1990;423(315):1‐112.
14.
JüngerSPayneSABrineJRadbruchLBrearleySG. Guidance on conducting and REporting Delphi studies (CREDES) in palliative care: recommendations based on a methodological systematic review. Palliat Med. 2017;31(8):684‐706. doi: 10.1177/0269216317690685
15.
BeatonDEBombardierCGuilleminFFerrazMB. Guidelines for the process of cross-cultural adaptation of self-report measures. Spine (Phila Pa 1976). 2000;25(24):3186‐3191. doi: 10.1097/00007632-200012150-00014.
16.
CrestaniAHMoraesABSouzaAPR. Content validation: clarity/relevance, reliability and internal consistency of enunciative signs of language acquisition. Codas. 2017;29(4):e20160180. Portuguese, English. doi: 10.1590/2317-1782/201720160180.
17.
McMillanSSKingMTullyMP. How to use the nominal group and Delphi techniques. Int J Clin Pharm. 2016;38(3):655‐662. doi: 10.1007/s11096-016-0257-x
18.
DiamondIRGrantRCFeldmanBM, et al.Defining consensus: a systematic review recommends methodologic criteria for reporting of Delphi studies. J Clin Epidemiol. 2014;67(4):401‐409. doi: 10.1016/j.jclinepi.2013.12.002
19.
NiederbergerM. Köberich S; members of the DeWiss network. Coming to consensus: the Delphi technique. Eur J Cardiovasc Nurs. 2021;20(7):692‐695. doi: 10.1093/eurjcn/zvab059
20.
Humphrey-MurtoSVarpioLWoodTJ, et al.The use of the Delphi and other consensus group methods in medical education research: a review. Acad Med. 2017;92(10):1491‐1498. doi: 10.1097/ACM.0000000000001812
21.
JohnsonSBButowPNKerridgeITattersallMHN. Patient autonomy and advance care planning: a qualitative study of oncologist and palliative care physicians’ perspectives. Support Care Cancer. 2018;26(2):565‐574. doi: 10.1007/s00520-017-3867-5
22.
Rodríguez-PratAMonforte-RoyoCPorta-SalesJEscribanoXBalaguerA. Patient perspectives of dignity, autonomy and control at the End of life: systematic review and meta-ethnography. PLoS One. 2016;11(3):e0151435. doi: 10.1371/journal.pone.0151435
23.
LindbergCFagerströmCSivbergBWillmanA. Concept analysis: patient autonomy in a caring context. J Adv Nurs. 2014;70(10):2208‐2221. doi: 10.1111/jan.12412
24.
ANCP. Academia Nacional de Cuidados Paliativos. Carvalho RCT, Parsons HA. (orgs). Manual de Cuidados Paliativos. 2ª Ed. Sulina; 2012.
25.
Resolução n° 41 de 31 de outubro de 2018: Diretrizes para a organização dos cuidados paliativos, à luz dos cuidados continuados integrados, no âmbito do Sistema Único de Saúde (SUS), (2018).
RugnoFCPaivaBSNunesJSPaivaCE. There won't’ be anything else…it's over": perceptions of women referred to palliative care only. Eur J Oncol Nurs. 2014;18(3):261‐266. doi: 10.1016/j.ejon.2014.01.003
28.
HarrisPATaylorRThielkeRPayneJGonzalezNCondeJG. Research electronic data capture (REDCap)–a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009;42(2):377‐381. doi: 10.1016/j.jbi.2008.08.010
29.
Cassar FloresAMarshallSCordinaM. Use of the Delphi technique to determine safety features to be included in a neonatal and paediatric prescription chart. Int J Clin Pharm. 2014;36(6):1179‐1189. doi: 10.1007/s11096-014-0014-y
30.
TaberJMEllisEMReblinMEllingtonLFerrerRA. Knowledge of and beliefs about palliative care in a nationally-representative U.S. Sample. PLoS One. 2019;14(8):e0219074. doi: 10.1371/journal.pone.0219074
31.
SomalKFoleyT. General practitioners’ views of advance care planning: a questionnaire-based study. Ir J Med Sci. 2022;191(1):253‐262. doi: 10.1007/s11845-021-02554-x
32.
SudoreRLLumHDYouJJ, et al.Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel. J Pain Symptom Manage. 2017;53(5):821‐832. doi: 10.1016/j.jpainsymman.2016.12.331.
33.
SudoreRLHeylandDKLumHD, et al.Outcomes that define successful advance care planning: a Delphi panel consensus. J Pain Symptom Manage. 2018;55(2):245‐255.e8. doi: 10.1016/j.jpainsymman.2017.08.025.
34.
RietjensJACSudoreRLConnollyM, et al.; European association for palliative care. Definition and recommendations for advance care planning: an international consensus supported by the European association for palliative care. Lancet Oncol. 2017;18(9):e543‐e551. doi: 10.1016/S1470-2045(17)30582-X
35.
PastranaTCentenoCDe LimaL. Palliative care in Latin America from the professional perspective: a SWOT analysis. J Palliat Med. 2015;18(5):429‐437. doi: 10.1089/jpm.2014.0120
36.
CudjoeTKMBoydCMWolffJLRothDL. Advance care planning: social isolation matters. J Am Geriatr Soc. 2020;68(4):841‐846. doi: 10.1111/jgs.16287
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
