Cancer Patients’ Understanding of Prognostic Information

Cartwright, Laura; Dumenci, Lèvent; Siminoff, Laura A.; Matsuyama, Robin K.

doi:10.1007/s13187-013-0603-9

Cited by 51 publications

(46 citation statements)

References 21 publications

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“…Several studies have shown that patients want to be told about their prognosis in a sensitive but honest manner; this has also been found in several Asian countries such as Taiwan, Japan, Nepal and Hong Kong . Oncologists may, in general, withhold explicit prognostic information from patients due to fear of making patients emotionally overwhelmed . Younger patients less than 60 years have been seen to be more worried of cancer diagnosis and poor prognosis possibly making oncologists in our study less likely to disclose their prognosis.…”

Section: Discussionsupporting

confidence: 54%

Oncologist‐patient‐caregiver decision‐making discussions in the context of advanced cancer in an Asian setting

Malhotra

Kanesvaran

Kumarakulasinghe

et al. 2019

Health Expectations

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Objective: Patient involvement in treatment decisions is recommended in clinicianpatient encounters. Little is known about how oncologists engage patients in shared decision making in non-Western countries. We assessed the prevalence of shared decision making among Singaporean oncologists and analysed how they discussed prognosis. Methods:We audio-recorded 100 consultations between advanced cancer patients and their oncologists. We developed a coding system to assess oncologist encouragement of patient participation in decision making and disclosure of an explicit prognosis. We assessed patient and oncologist characteristics that predicted these behaviours.Results: Forty-one consultations involved treatment discussions. Oncologists almost always listed more than one treatment option (90%). They also checked patient understanding (34%), discussed pros and cons (34%) and addressed uncertainty (29%).Oncologists discussed prognosis mostly qualitatively (34%) rather than explicitly (17%). They were more likely to give an explicit prognosis when patients/caregivers asked questions related to prognosis. Conclusion:Oncologists in our sample engaged their patients in decision making.They have areas in which they can improve to involve patients at a deeper level to ensure shared decision making. Findings will be used to develop an intervention targeting oncologists and patients to promote patient involvement in decision making. K E Y W O R D S cancer, decision making, patient participation, prognosis | 221 MALHOTRA eT AL. S U PP O RTI N G I N FO R M ATI O N Additional supporting information may be found online in the Supporting Information section. How to cite this article: Malhotra C, Kanesvaran R, Kumarakulasinghe NB, et al. Oncologist-patient-caregiver decision-making discussions in the context of advanced cancer in an Asian setting. Health Expect. 2020;23:220-228.

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Section: Discussionsupporting

confidence: 54%

Oncologist‐patient‐caregiver decision‐making discussions in the context of advanced cancer in an Asian setting

Malhotra

Kanesvaran

Kumarakulasinghe

et al. 2019

Health Expectations

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“…Three groups included participants who completed more than a high school education and three groups consisted of participants with a high school degree or less. The composition and results of the focus groups are discussed in detail elsewhere (Cartwright, Dumenci, Siminoff, & Matsuyama, 2014). …”

Section: Methodsmentioning

confidence: 99%

Measurement of Cancer Health Literacy and Identification of Patients with Limited Cancer Health Literacy

Dumenci¹,

Matsuyama²,

Riddle³

et al. 2014

Journal of Health Communication

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118

150

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Health literacy is related to a broad range of health outcomes. This study was designed to develop a psychometrically sound instrument designed to measure cancer health literacy along a continuum (CHLT-30), to develop another instrument designed to determine whether a patient has limited cancer health literacy (CHLT-6), and to estimate the prevalence of limited cancer health literacy. The Cancer Health Literacy Study involving 1,306 Black and White cancer patients was conducted between April 2011 and April 2013 in the Virginia Commonwealth University Massey Cancer Center and surrounding oncology clinics. A continuous latent variable modeling framework was adopted to dimensionally represent cancer health literacy, whereas discrete latent variable modeling was used to estimate the prevalence rates of limited cancer health literacy. Self confidence about engaging in health decisions was used as the primary outcome in external validation of new instruments. Results from a comprehensive analysis strongly supported the construct validity and reliability of the CHLT-30 and CHLT-6. For both instruments, measurement invariance tests ruled out item/test bias to explain gender and race/ethnicity differences in test scores. The limited cancer health literacy rate was 18%, a subpopulation consisting of overrepresented Black, undereducated, and low-income cancer patients. Overall, the results supported the conclusion that the CHLT-30 accurately measures cancer health literacy along a continuum and that the CHLT-6 efficiently identifies patients with limited cancer health literacy with high accuracy.

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“…Our study raises concerns about how clinicians conceptualize the process of patient “decision-making” among safety-net populations in particular, where understanding of prognosis may be absent or confused [48, 51]. Our cohort of patients strongly agreed with the importance of keeping appointments and complying with physician recommendations.…”

Section: Discussionmentioning

confidence: 74%

Elucidating patient-perceived role in “decision-making” among African Americans receiving lung cancer care through a county safety-net system

et al. 2015

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Purpose We explored patient-perceived role in “decision-making” related to active treatment and palliation among African Americans receiving lung cancer care through a county safety-net system. Methods Drawing from a cohort of over 100 African Americans treated in a safety-net hospital, we invited a subsample of 13 patient-caregiver dyads to participate in a series of dyadic, ethnographic interviews conducted at the patients’ homes. Over 40 hours of transcripts were analyzed in an iterative process resulting in reported themes. Results Findings from ethnographic interviews demonstrated that healthcare communication with physicians is difficult for patients. While caregivers and patients describe a deep engagement in lung cancer care, they expressed a concurrent lack of understanding of their prognosis and outcomes of treatment. Dyads did not discuss their lung cancer experience in terms of decision-making, rather most articulated their role as following physician guidance. Distinct lack of understanding about disease course, severity, and prognosis may constrain patient perception of the need for informed decision-making over the course of care. Conclusions Dyadic interviews detailing safety-net patient experiences of lung cancer care raise important questions about how clinicians, as well as researchers, conceptualize processes of informed decision-making in vulnerable populations. Implications for Cancer Survivors Safety-net patients may not perceive their role as involving informed decision-making, and further may lack understanding of disease course and individual prognosis. Safety-net patient dyads expressed high involvement in care and a desire for clarity; clinicians should be prepared to clearly communicate disease stage and prognosis.

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Cancer Patients’ Understanding of Prognostic Information

Cited by 51 publications

References 21 publications

Oncologist‐patient‐caregiver decision‐making discussions in the context of advanced cancer in an Asian setting

Oncologist‐patient‐caregiver decision‐making discussions in the context of advanced cancer in an Asian setting

Measurement of Cancer Health Literacy and Identification of Patients with Limited Cancer Health Literacy

Elucidating patient-perceived role in “decision-making” among African Americans receiving lung cancer care through a county safety-net system

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