Examining cancer patient preferences during three stages of decision making and family involvement: a multicenter survey study in China

Abstract Background Medical decision-making is a complex multi-stage process. Chinese cancer patients’ preference for participation in decision-making stages, family involvement and influencing factors remain unclear. Methods A total of 1,422 cancer patients from four tertiary hospitals in China wer...

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Main Authors: Siyu Yan, Danqi Wang, Qiao Huang, Yongbo Wang, Manru Fan, Hongyang Xue, Linxin Yu, Yinghui Jin
Format: Article
Language:English
Published: BMC 2025-01-01
Series:BMC Medical Informatics and Decision Making
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Online Access:https://doi.org/10.1186/s12911-024-02846-z
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author Siyu Yan
Danqi Wang
Qiao Huang
Yongbo Wang
Manru Fan
Hongyang Xue
Linxin Yu
Yinghui Jin
author_facet Siyu Yan
Danqi Wang
Qiao Huang
Yongbo Wang
Manru Fan
Hongyang Xue
Linxin Yu
Yinghui Jin
author_sort Siyu Yan
collection DOAJ
description Abstract Background Medical decision-making is a complex multi-stage process. Chinese cancer patients’ preference for participation in decision-making stages, family involvement and influencing factors remain unclear. Methods A total of 1,422 cancer patients from four tertiary hospitals in China were included in the cross-sectional survey. Patient Expectation for Participation in Medical Decision-making Scale was used to measure patients’ information, deliberation and decisional control preferences. The patient-family Control Preferences Scale was used to measure expected and actual levels of family involvement. Generalized estimation equation was performed to explore factors associated with patients’ preferences. Results 93.0% of patients had a high preference for information exchange, 95.8% for treatment deliberation, and 61.7% for decisional control. Equal participation was most common in family involvement in decision-making, followed by family-led and patient-led. 15.5% of patients reported a discrepancy between expected and actual family involvement. Age, education, marital status, number of adult children, occupation, family income, regular residence, health insurance and time since diagnosis were related to patient preference. Compared to patients with other cancer sites, those with breast [odds ratio (OR) 2.02, 95%CI: 1.47–2.77] and thyroid cancer [OR 2.37, 95%CI: 1.82–3.10] had higher information preference, those with breast [OR 2.98, 95%CI: 2.73–3.26] and esophagus cancer [OR 2.86, 95%CI: 1.13–7.22] had higher deliberation preference, and thyroid cancer patients [OR 1.50, 95%CI: 1.07–2.10] had higher decisional control preference. Patients who expected or experienced equal participation had higher preference at all stages of decision-making than those with family-led involvement. Patients with inconsistent expected and actual family involvement had lower preferences for the deliberation [OR 0.53, 95%CI: 0.36–0.77] and decisional control stages [OR 0.67, 95%CI: 0.56–0.79]. Conclusions Chinese cancer patients generally have high preference for information exchange and treatment deliberation, but varied preferences for decision control, influenced by patients’ sociodemographic factors, cancer types, time since diagnosis and family involvement. The findings underscore the importance of tailoring medical decision-making processes to individual patient preferences and ensuring family involvement aligns with patient expectations to enhance patient-centered care in China.
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spelling doaj-art-d3d15266d10e445dac75a9fdfd5646802025-01-12T12:26:27ZengBMCBMC Medical Informatics and Decision Making1472-69472025-01-0125111010.1186/s12911-024-02846-zExamining cancer patient preferences during three stages of decision making and family involvement: a multicenter survey study in ChinaSiyu Yan0Danqi Wang1Qiao Huang2Yongbo Wang3Manru Fan4Hongyang Xue5Linxin Yu6Yinghui Jin7Center for Evidence-Based and Translational Medicine, Zhongnan Hospital of Wuhan UniversityCenter for Evidence-Based and Translational Medicine, Zhongnan Hospital of Wuhan UniversityCenter for Evidence-Based and Translational Medicine, Zhongnan Hospital of Wuhan UniversityCenter for Evidence-Based and Translational Medicine, Zhongnan Hospital of Wuhan UniversityFirst School of Clinical Medicine of Wuhan UniversityFirst School of Clinical Medicine of Wuhan UniversityFirst School of Clinical Medicine of Wuhan UniversityCenter for Evidence-Based and Translational Medicine, Zhongnan Hospital of Wuhan UniversityAbstract Background Medical decision-making is a complex multi-stage process. Chinese cancer patients’ preference for participation in decision-making stages, family involvement and influencing factors remain unclear. Methods A total of 1,422 cancer patients from four tertiary hospitals in China were included in the cross-sectional survey. Patient Expectation for Participation in Medical Decision-making Scale was used to measure patients’ information, deliberation and decisional control preferences. The patient-family Control Preferences Scale was used to measure expected and actual levels of family involvement. Generalized estimation equation was performed to explore factors associated with patients’ preferences. Results 93.0% of patients had a high preference for information exchange, 95.8% for treatment deliberation, and 61.7% for decisional control. Equal participation was most common in family involvement in decision-making, followed by family-led and patient-led. 15.5% of patients reported a discrepancy between expected and actual family involvement. Age, education, marital status, number of adult children, occupation, family income, regular residence, health insurance and time since diagnosis were related to patient preference. Compared to patients with other cancer sites, those with breast [odds ratio (OR) 2.02, 95%CI: 1.47–2.77] and thyroid cancer [OR 2.37, 95%CI: 1.82–3.10] had higher information preference, those with breast [OR 2.98, 95%CI: 2.73–3.26] and esophagus cancer [OR 2.86, 95%CI: 1.13–7.22] had higher deliberation preference, and thyroid cancer patients [OR 1.50, 95%CI: 1.07–2.10] had higher decisional control preference. Patients who expected or experienced equal participation had higher preference at all stages of decision-making than those with family-led involvement. Patients with inconsistent expected and actual family involvement had lower preferences for the deliberation [OR 0.53, 95%CI: 0.36–0.77] and decisional control stages [OR 0.67, 95%CI: 0.56–0.79]. Conclusions Chinese cancer patients generally have high preference for information exchange and treatment deliberation, but varied preferences for decision control, influenced by patients’ sociodemographic factors, cancer types, time since diagnosis and family involvement. The findings underscore the importance of tailoring medical decision-making processes to individual patient preferences and ensuring family involvement aligns with patient expectations to enhance patient-centered care in China.https://doi.org/10.1186/s12911-024-02846-zPatient preferenceCancerInformation preferenceDeliberation preferenceShared decision makingFamily involvement
spellingShingle Siyu Yan
Danqi Wang
Qiao Huang
Yongbo Wang
Manru Fan
Hongyang Xue
Linxin Yu
Yinghui Jin
Examining cancer patient preferences during three stages of decision making and family involvement: a multicenter survey study in China
BMC Medical Informatics and Decision Making
Patient preference
Cancer
Information preference
Deliberation preference
Shared decision making
Family involvement
title Examining cancer patient preferences during three stages of decision making and family involvement: a multicenter survey study in China
title_full Examining cancer patient preferences during three stages of decision making and family involvement: a multicenter survey study in China
title_fullStr Examining cancer patient preferences during three stages of decision making and family involvement: a multicenter survey study in China
title_full_unstemmed Examining cancer patient preferences during three stages of decision making and family involvement: a multicenter survey study in China
title_short Examining cancer patient preferences during three stages of decision making and family involvement: a multicenter survey study in China
title_sort examining cancer patient preferences during three stages of decision making and family involvement a multicenter survey study in china
topic Patient preference
Cancer
Information preference
Deliberation preference
Shared decision making
Family involvement
url https://doi.org/10.1186/s12911-024-02846-z
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