Cancer Survivors' Experiences With and Preferences for Medical Information Disclosure and Advance Care Planning: An Online Survey Among Indonesian Cancer Support Groups

Diah Martina*, Rebecca Noerjani Angka, Rudi Putranto, Hamzah Shatri, Aru Wisaksono Sudoyo, Agnes van der Heide, Carin C.D. van der Rijt, Judith A.C. Rietjens

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

1 Citation (Scopus)
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Abstract

PURPOSE: To understand the experiences and preferences of Indonesian cancer survivors regarding medical information disclosure and advance care planning. METHODS: On the basis of systematic reviews of the scientific literature, qualitative studies, and expert-panel input, we developed an online survey that was distributed to nine cancer survivor support groups in Indonesia. RESULTS: A total of 1,030 valid responses were received. Most participants were younger than 60 years (92%), female (91%), married (78%), Muslim (75%), diagnosed with breast cancer (68%), highly educated (64%), and more than one year beyond diagnosis of their cancer. If diagnosed with a life-limiting illness, participants wished to be informed about their diagnosis (74%), disease severity (61%), estimated curability (81%), expected disease trajectory (66%), and estimated life expectancy (37%). Between 46%-69% of the participants wished to discuss four topics of advance care planning (end-of-life treatments, resuscitation, health care proxies, and what matters at the end of life); 21%-42% had done so. Of those who wished to discuss these topics, 36%-79% preferred to do so with their family members. The most important reasons for not being willing to engage in advance care planning were the desire to surrender to God's will and to focus on here and now. CONCLUSION: In a group of cancer survivors, most of them were highly educated, young, female, and diagnosed with breast cancer. Their preferences for medical information and advance care planning varied, with the majority wishing for information and involvement in advance care planning. Culturally sensitive advance care planning involves health care professionals eliciting individuals' preferences for medical information disclosure and discussing different topics in advance care planning conversations.

Original languageEnglish
Article numbere2300003
JournalJCO Global Oncology
Volume9
Issue number9
Early online date12 Apr 2023
DOIs
Publication statusPublished - 2023

Bibliographical note

SUPPORT
Supported by the Indonesia Endowment Fund for Education (Lembaga Pengelola Dana Pendidikan, LPDP) of the Indonesian Ministry of Finance
(Grand No. 201711220412068). The funding body had no role in the design and conduct of the study; collection, management, analysis, and
interpretation of the data; preparation, review, or approval of the manuscript; or decision to submit the manuscript for publication.

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