Awareness of and preference for disease prognosis and participation in treatment decisions among advanced cancer patients in Myanmar: Results from the APPROACH study

Mon, S.; Zu, Wah Wah Myint; Maw, Myo; Win, Han; Thant, Kyaw Zin; Yang, Grace Meijuan; Malhotra, Chetna; Teo, Irene; Finkelstein, Eric A.; Özdemir, Semra

doi:10.1111/ajco.13430

Cited by 8 publications

(7 citation statements)

References 33 publications

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“…Not knowing prognosis may be essential for patients as it allows hope [15,16,[27][28][29][30][31]. Other patients may avoid prognostic estimates out of fear that these evoke negative emotions or become reality [14,[32][33][34][35][36]. Some patients find prognosis too uncertain and therefore useless [9], or feel relieved when not having to understand medical information [37].…”

Section: Introductionmentioning

confidence: 99%

“…Still, relations between patients' prognostic information preference and personal characteristics remain understudied. Besides, while some studies reported associations with older age, female sex and lower income, research investigating the background and clinical characteristics of patients who reject prognosis is scarce [32,34,[41][42][43][44].…”

Section: Introductionmentioning

confidence: 99%

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Characteristics of patients with advanced cancer preferring not to know prognosis: a multicenter survey study

et al. 2022

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Background For some patients with advanced cancer not knowing prognosis is essential. Yet, in an era of informed decision-making, the potential protective function of unawareness is easily overlooked. We aimed to investigate 1) the proportion of advanced cancer patients preferring not to know prognosis; 2) the reasons underlying patients’ prognostic information preference; 3) the characteristics associated with patients’ prognostic information preference; and 4) the concordance between physicians’ perceived and patients’ actual prognostic information preference. Methods This is a cross-sectional study with structured surveys (PROSPECT). Medical and thoracic oncologists included patients (n = 524), from seven Dutch hospitals, with metastatic/inoperable cancer and an expected median overall survival of ≤ 12 months. For analysis, descriptive statistics and logistic regression models were used. Results Twenty-five to 31% of patients preferred not to know a general life expectancy estimate or the 5/2/1-year mortality risk. Compared to patients preferring to know prognosis, patients preferring unawareness more often reported optimism, avoidance and inability to comprehend information as reasons for wanting limited information; and less often reported expectations of others, anxiety, autonomy and a sense of control as reasons for wanting complete information. Females (p < .05), patients receiving a further line of systemic treatment (p < .01) and patients with strong fighting spirit (p < .001) were more likely to prefer not to know prognosis. Concordance between physicians’ perceived and patients’ actual prognostic information preference was poor (kappa = 0.07). Conclusions We encourage physicians to explore patients’ prognostic information preferences and the underlying reasons explicitly, enabling individually tailored communication. Future studies may investigate changes in patients’ prognostic information preferences over time and examine the impact of prognostic disclosure on patients who prefer unawareness.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Characteristics of patients with advanced cancer preferring not to know prognosis: a multicenter survey study

et al. 2022

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“…Consistent with the multisite APPROACH protocol, we aimed to recruit a sample of 200 participants. 20 , 21 To obtain this sample size, 473 patients were assessed for eligibility via daily screening of medical records of outpatients seen at the medical oncology and palliative care departments and inpatient medical and surgical wards and referrals from nurses and patient. Of the pool of patients, 266 were deemed ineligible based on medical record review or after being approached for the study or declined to participate.…”

Section: Research Methods and Designmentioning

confidence: 99%

“…We also assessed the relationship between prognostic awareness and preference for prognostic information and patient factors. Based on prior literature, we hypothesised that greater prognostic awareness and preference for receiving prognostic information would be associated with younger age, 13 , 16 higher education, 14 , 15 higher income 16 , 17 and higher symptom burden. 18 , 19 …”

Section: Introductionmentioning

confidence: 99%

Prognostic awareness and prognostic information preferences among advanced cancer patients in Kenya

Elias,

Ozdemir,

Bairavi

et al. 2024

African Journal of Primary Health Care & Family Medicine

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Background: Cancer is the third leading cause of death in Kenya. Yet, little is known about prognostic awareness and preferences for prognostic information.Aim: To assess the prevalence of prognostic awareness and preference for prognostic information among advanced cancer patients in Kenya.Setting: Outpatient medical oncology and palliative care clinics and inpatient medical and surgical wards of Moi Teaching and Referral Hospital (MTRH) in Eldoret, Kenya.Methods: The authors surveyed 207 adults with advanced solid cancers. The survey comprised validated measures developed for a multi-site study of end-of-life care in advanced cancer patients. Outcome variables included prognostic awareness and preference for prognostic information.Results: More than one-third of participants (36%) were unaware of their prognosis and most (67%) preferred not to receive prognostic information. Increased age (OR = 1.04, 95% CI: 1.02, 1.07) and education level (OR: 1.18, CI: 1.08, 1.30) were associated with a higher likelihood of preference to receive prognostic information, while increased symptom burden (OR= 0.94, CI: 0.90, 0.99) and higher perceived household income levels (lower-middle vs low: OR= 0.19; CI: 0.09, 0.44; and upper middle- or high vs low: OR= 0.22, CI: 0.09, 0.56) were associated with lower odds of preferring prognostic information.Conclusion: Results reveal low levels of prognostic awareness and little interest in receiving prognostic information among advanced cancer patients in Kenya.Contribution: Given the important role of prognostic awareness in providing patient-centred care, efforts to educate patients in Kenya on the value of this information should be a priority, especially among younger patients.

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“…In the absence of specific and validated instruments for evaluating patients' preference for receiving information about their prognosis and whether they want to be informed, we developed a draft questionnaire based on data from previous studies and discussion among the authors of this study (16)(17)(18)(19). The face validity of the draft questionnaires was confirmed by five patients in October 2021, and the questionnaires were revised by researchers.…”

Section: Questionnairesmentioning

confidence: 99%

Preference of Japanese cancer patients for being informed about their prognosis

Hamano¹,

Hiratsuka²,

Morita³

et al. 2022

Ann Palliat Med

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Background: Prognostic information, which consists of life expectancy, functional prognosis, and uncertainty, of cancer patients is essential. However, the evidence regarding the prognostic preferences of cancer patients is limited. To clarify the prognostic preferences of cancer patients and whether cancer patients want to be informed about their prognosis.Methods: We conducted a cross-sectional web-based anonymous survey through a private survey company in January 2022. We assessed whether patients would prefer to be informed about their life expectancy and functional prognosis, and explored correlations between patients' backgrounds.Results: A total of 132 patients responded to the survey. The mean age was 63.1±9.3, and 67 (50.8%) were male. The most frequent primary tumor was gastrointestinal/hepatobiliary and pancreatic (n=43, 32.6%).Among the patients, 26.6% answered "Strongly agree" or "Agree" to wanting to be informed about their life expectancy, and 33.6-46.9%. wanted to be informed of their functional prognosis. Experience of a family member that had died from cancer had a significant correlation with the preference to be informed about "Life expectancy" (r s =0.344, P<0.001), "Moving freely" (r s =0.210, P=0.016), and "Proper communication" (r s =0.344, P=0.038).Conclusions: More cancer patients wanted to be informed about their functional prognosis than their life expectancy. In addition, the experience of a family member that had died of cancer had a significant correlation with the preference for wanting to be informed about their life expectancy and functional prognosis.

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Awareness of and preference for disease prognosis and participation in treatment decisions among advanced cancer patients in Myanmar: Results from the APPROACH study

Cited by 8 publications

References 33 publications

Characteristics of patients with advanced cancer preferring not to know prognosis: a multicenter survey study

Characteristics of patients with advanced cancer preferring not to know prognosis: a multicenter survey study

Prognostic awareness and prognostic information preferences among advanced cancer patients in Kenya

Preference of Japanese cancer patients for being informed about their prognosis

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