Health Information Preferences and Curability Beliefs Among Patients With Advanced Cancer.
Ontology highlight
ABSTRACT: Context
Accurate prognostic understanding is associated with increased advance care planning, symptom control, and patient autonomy in oncology. The impact of prognostic understanding on patients' health information preferences (HIPs) and prognostic information preferences is unknown and has important implications for health care communication.Objectives
The present study characterized the HIPs of patients with advanced cancer; examined differences in HIPs between patients with varying curability beliefs; and identified differences in the characteristics and psychological well-being of patients with varying curability beliefs.Methods
This cross-sectional study used a secondary data analysis of baseline data (prerandomization) for patients enrolled in a large randomized controlled psychotherapy trial. 206 participants were recruited from outpatient clinics at a single facility. Inclusion criteria included: 18 years and older; English speaking, Stage IV solid tumor cancer, and Distress Thermometer score of ≥4.Results
Most participants preferred as many details as possible about their diagnosis and treatment (69.4%; n = 143), and the likely outcome of their disease (72.3%; n = 149). Most participants accurately described their cancer as unlikely curable or incurable (62.6%; n = 129). There were no significant differences in HIPs based on level of prognostic understanding. Poorer prognostic understanding was associated with religiosity and better quality of life and existential well-being.Conclusion
In the present study, prognostic understanding (i.e., curability beliefs) was not associated with HIPs. Therefore, oncology clinicians must individually and interatively evaluate patients' interest and preferences for receiving information. Future research should further clarify preferences for the framing and content of prognostic information from providers and improve the measurement of prognostic understanding to facilitate patient-centered end-of-life care.
SUBMITTER: Saracino RM
PROVIDER: S-EPMC7770014 | biostudies-literature |
REPOSITORIES: biostudies-literature
Similar Datasets
Project description:BackgroundEnsuring older patients with advanced cancer and their oncologists have similar beliefs about curability is important. We investigated discordance in beliefs about curability in patient-oncologist and caregiver-oncologist dyads.Materials and methodsWe used baseline data from a cluster randomized trial assessing whether geriatric assessment improves communication and quality of life in older patients with advanced cancer and their caregivers. Patients were aged ≥70 years with incurable cancer from community oncology practices. Patients, caregivers, and oncologists were asked: "What do you believe are the chances the cancer will go away and never come back with treatment?" Options were 100%, >50%, 50/50, <50%, and 0% (5-point scale). Discordance in beliefs about curability was defined as any difference in scale scores (≥3 points were severe). We used multivariate logistic regressions to describe correlates of discordance.ResultsDiscordance was present in 60% (15% severe) of the 336 patient-oncologist dyads and 52% (16% severe) of the 245 caregiver-oncologist dyads. Discordance was less common in patient-oncologist dyads when oncologists practiced longer (adjusted odds ratio [AOR] 0.90, 95% confidence interval [CI] 0.84-0.97) and more common in non-Hispanic white patients (AOR 5.77, CI 1.90-17.50) and when patients had lung (AOR 1.95, CI 1.29-2.94) or gastrointestinal (AOR 1.55, CI 1.09-2.21) compared with breast cancer. Severe discordance was more common when patients were non-Hispanic white, had lower income, and had impaired social support. Caregiver-oncologist discordance was more common when caregivers were non-Hispanic white (AOR 3.32, CI 1.01-10.94) and reported lower physical health (AOR 0.88, CI 0.78-1.00). Severe discordance was more common when caregivers had lower income and lower anxiety level.ConclusionDiscordance in beliefs about curability is common, occasionally severe, and correlated with patient, caregiver, and oncologist characteristics.Implications for practiceEnsuring older patients with advanced cancer and their caregivers have similar beliefs about curability as the oncologist is important. This study investigated discordance in beliefs about curability in patient-oncologist (PO) and caregiver-oncologist (CO) dyads. It found that discordance was present in 60% (15% severe) of PO dyads and 52% (16% severe) of CO dyads, raising serious questions about the process by which patients consent to treatment. This study supports the need for interventions targeted at the oncologist, patient, caregiver, and societal levels to improve the delivery of prognostic information and patients'/caregivers' understanding and acceptance of prognosis.
| S-EPMC6656513 | biostudies-literature
Project description:BACKGROUND:Older patients with advanced cancer who are 100% certain they will be cured pose unique challenges for clinical decision making, but to the authors' knowledge, the prevalence and correlates of absolute certainty about curability (ACC) are unknown. METHODS:Cross-sectional data were collected in a geriatric assessment trial. ACC was assessed by asking patients, "What do you believe are the chances that your cancer will go away and never come back with treatment?" Response options were 100% (coded as ACC), >50%, 50/50, <50%, 0%, and uncertain. The willingness to bear adversity in exchange for longevity was assessed by asking patients to consider trade-offs between survival and 2 clinical outcomes that varied in abstractness: 1) maintaining quality of life (QOL; an abstract outcome); and 2) specific treatment-related toxicities (eg, nausea/vomiting, worsening memory). Logistic regression was used to assess the independent associations between willingness to bear adversity and ACC. RESULTS:Of the 524 patients aged 70 to 96 years, approximately 5.3% reported that there was a 100% chance that their cancer would be cured (ACC). ACC was not found to be significantly associated with willingness to bear treatment-related toxicities, but was more common among patients who were willing to trade QOL for survival (adjusted odds ratio, 4.08; 95% CI, 1.17-14.26). CONCLUSIONS:Patients who were more willing to bear adversity in the form of an abstract state, namely decreased QOL, were more likely to demonstrate ACC. Although conversations regarding prognosis should be conducted with all patients, those who are willing to trade QOL for survival may especially benefit from conversations that focus on values and emotions.
| S-EPMC6602839 | biostudies-literature
Project description:ContextPrognostic information is considered important for advanced cancer patients and primary informal caregivers to prepare for the end of life. Little is known about discordance in patients' and caregivers' prognostic information preferences and prognostic perceptions, while such discordance complicates adaptive dyadic coping, clinical interactions and care plans.ObjectivesTo investigate the extent of patient-caregiver discordance in prognostic information preferences and perceptions, and the factors associated with discordant prognostic perceptions.MethodsWe conducted secondary analyses of a cross-sectional study (PROSPECT, 2019-2021). Advanced cancer patients (median overall survival ≤12 months) from seven Dutch hospitals and caregivers completed structured surveys (n = 412 dyads).ResultsSeven percent of patient-caregiver dyads had discordant information preferences regarding the likelihood of cure; 24%-25% had discordant information preferences regarding mortality risk (5/2/1 year). Seventeen percent of dyads had discordant perceptions of the likelihood of cure; 12%-25% had discordant perceptions of mortality risk (5/2/1 year). Dyads with discordant prognostic information preferences (P < 0.05) and dyads in which patients reported better physical functioning (P < 0.01) were significantly more likely to perceive the one-year mortality risk discordantly.ConclusionPhysicians should be sensitive to discordant prognostic information preferences and prognostic perceptions among patient-caregiver dyads in advanced cancer care.
| S-EPMC10285690 | biostudies-literature
Project description:Cancer patients' preferences for written prognostic information independent of the clinical context have not previously been investigated. This study aimed to assist a state cancer organisation to provide information to patients by assessing patients' understanding of statistical information; eliciting their preferences for framing, content and presentation; and assessing the acceptability of a card sort for obtaining preferences. With the exception of conditional and relative survival, initial difficulties in understanding statistical concepts were improved with a plain language explanation. Analysis of the interview transcripts revealed that participants generally supported the provision of written information about survival in booklets and on the Internet. They wanted positive, relevant and clear information. Participants said that the use of, and preferences for, this information would be affected by a patient's age, time since diagnosis, ability to cope with having cancer and the perceived credibility of the information source. They found the card sort acceptable, saying it made the assessment of understanding and selection of preferences easy. This study has identified two fundamental, and sometimes conflicting, factors underlying patients' preferences: the communication of hope and the need to understand information it has also identified patient characteristics thought to influence preferences. These factors and characteristics need to be taken into account when developing written prognostic information for patients.
| S-EPMC2394356 | biostudies-other
Project description:Effective biomarkers predictive of the response to treatments are key for precision medicine. This study identifies the staining pattern of the centromeric histone 3 variant, CENP-A, as a predictive biomarker of locoregional disease curability by chemoradiation therapy. We compared by imaging the subnuclear distribution of CENP-A in normal and tumoral tissues, and in a retrospective study in biopsies of 62 locally advanced head and neck squamous cell carcinoma (HNSCC) patients treated by chemoradiation therapy. We looked for predictive factors of locoregional disease control and patient's survival, including CENP-A patterns, Ki67, HPV status and anisokaryosis. In different normal tissues, we reproducibly found a CENP-A subnuclear pattern characterized by CENP-A clusters both localized at the nuclear periphery and regularly spaced. In corresponding tumors, both features are lost. In locally advanced HNSCC, a specific CENP-A pattern identified in pretreatment biopsies predicts definitive locoregional disease control after chemoradiation treatment in 96% (24/25) of patients (OR = 17.6 CI 95% [2.6; 362.8], p = 0.002), independently of anisokaryosis, Ki67 labeling or HPV status. The characteristics of the subnuclear pattern of CENP-A in cell nuclei revealed by immunohistochemistry could provide an easy to use a reliable marker of disease curability by chemoradiation therapy in locally advanced HNSCC patients.
| S-EPMC8391827 | biostudies-literature
Project description:ContextStability of patients' treatment preferences has important implications for decisions about concurrent and future treatment.ObjectivesTo examine the stability of treatment preferences and correlates among patients with advanced cancer.MethodsIn this cohort, 104 patients with metastatic cancer, progression after at least one chemotherapy regimen, and an oncologist-estimated life expectancy of six or fewer months participated in structured interviews after clinical visits in which patients' recent scan results were discussed. Interviews were repeated in three monthly follow-ups. At baseline, patients' age, education, sex, race, marital status, insurance status, and type of cancer were documented. At each assessment, patients reported their treatment preferences (i.e., prioritizing life-prolonging vs. comfort), quality of life, and current health status.ResultsAt baseline (n = 104), 55 (53%) patients preferred life-prolonging care and 49 (47%) preferred comfort care. Patients were followed up for one (n = 104), two (n = 74), or three months (n = 44). Between baseline and Month 1, 84 patients (81%) had stable preferences. During follow-up, preferences of 71 patients (68%) remained stable (equally divided between a consistent preference for life-prolonging and comfort care). Treatment preferences of 33 (32%) patients changed at least once during follow-up. Direction of change was inconsistent. Patients' preferences at baseline strongly predicted preferences at Month 1 (odds ratio = 17.8; confidence interval = 6.7-47.3; P < .001). Description of the current health status at baseline was the only variable significantly associated with stability of preferences at Month 1.ConclusionTwo-thirds of patients with advanced cancer had stable preferences. Changes of preferences were often inconsistent and unpredictable. Our findings suggest potential benefits of ongoing communication about preferences.
| S-EPMC6700722 | biostudies-literature
Project description:BackgroundAlthough previous studies have reported the cancer information-seeking behaviors among patients in high-income countries, the cancer information-seeking practices of patients living in low- and middle-income areas are less known.ObjectiveThis study investigated the beliefs and information-seeking patterns of cancer patients in southwest China.MethodsA questionnaire was designed, and data were collected in two hospitals (N=285) in southwest China. Statistical analyses included bivariate analyses and regressions.ResultsPatients' attitudes towards cancer fatalism were significantly influenced by marital status (P<.001), education (P<.001), and household income (P<.001). Moreover, endorsing fatalistic belief was positively associated with age (r=0.35, P<.001). The regression model showed that younger patients (odds ratio [OR] 0.96, 95% CI 0.93-0.99) and those with higher education (OR 1.75, 95% CI 1.09-2.81) were more likely to seek information. Additionally, patients who were less confident in getting information were more likely to find information (OR 1.70, 95% CI 1.15-2.52), while fatalism belief was not significant in the regression (OR 0.65, 95% CI 0.22-1.95).ConclusionsThis study explored the information-seeking patterns of cancer patients in southwest China. It was found that many Chinese people endorsed cancer fatalism. These pessimistic beliefs about the potential to prevent and to cure cancer correlate with rather than cause cancer-related information seeking. However, self-efficacy about the confidence in finding needed cancer information was a significant predictor of information-seeking.
| S-EPMC7474411 | biostudies-literature
Project description:BackgroundEmerging health technologies are increasingly being used in health care for communication, data collection, patient monitoring, education, and facilitating adherence to chronic disease management. However, there is a lack of studies on differences in the preference for using information exchange technologies between patients with chronic and nonchronic diseases and factors affecting these differences.ObjectiveThe purpose of this paper is to understand the preferences and use of information technology for information exchange among a nationally representative sample of adults with and without 3 chronic disease conditions (ie, cardiovascular disease [CVD], diabetes, and hypertension) and to assess whether these preferences differ according to varying demographic variables.MethodsWe utilized data from the 2012 and 2014 iteration of the Health Information National Trends Survey (N=7307). We used multiple logistic regressions, adjusting for relevant demographic covariates, to identify the independent factors associated with lower odds of using health information technology (HIT), thus, identifying targets for awareness. Analyses were weighted for the US population and adjusted for the sociodemographic variables of age, gender, race, and US census region.ResultsOf 7307 participants, 3529 reported CVD, diabetes, or hypertension. In the unadjusted models, individuals with diabetes, CVD, or hypertension were more likely to report using email to exchange medical information with their provider and less likely to not use any of the technology in health information exchange, as well as more likely to say it was not important for them to access personal medical information electronically. In the unadjusted model, additional significant odds ratio (OR) values were observed. However, after adjustment, most relationships regarding the use and interest in exchanging information with the provider were no longer significant. In the adjusted model, individuals with CVD, diabetes, or hypertension were more likely to access Web-based personal health information through a website or app. Furthermore, we assessed adjusted ORs for demographic variables. Those aged >65 years and Hispanic people were more likely to report no use of email to exchange medical information with their provider. Minorities (Hispanic, non-Hispanic black, and Asian people) were less likely to indicate they had no interest in exchanging general health tips with a provider electronically.ConclusionsThe analysis did not show any significant association among those with comorbidities and their proclivity toward health information, possibly implying that HIT-related interventions, particularly design of information technologies, should focus more on demographic factors, including race, age, and region, than on comorbidities or chronic disease status to increase the likelihood of use. Future research is needed to understand and explore more patient-friendly use and design of information technologies, which can be utilized by diverse age, race, and education or health literacy groups efficiently to further bridge the patient-provider communication gap.
| S-EPMC6245956 | biostudies-literature
Project description:The number of cases of aggressive prostate cancer is increasing. Differentiating between aggressive and indolent cases has resulted in increased difficulty for the physician and patient to decide on the best treatment option. Due to this challenge, efforts are underway to profile genetic risk for prostate cancer aggressiveness, which may help physicians and patients at risk for developing aggressive prostate cancer to select an appropriate treatment option. This study explores patients' interest in receiving genetic results, preference for how genetic risk information should be communicated, and willingness to share results with adult male first-degree relatives (FDRs). A nine-item survey was adapted to assess their beliefs and attitudes about genetic testing for prostate cancer aggressiveness. In addition, participants (n = 50) responded to hypothetical scenarios and questions associated with perceived importance of risk disclosure, preferences for receiving genetic risk information, and sharing of results with FDRs. As the hypothetical risk estimate for aggressive prostate cancer increased, patients' willingness to receive genetic risk information increased. This study found that most patients preferred receiving genetic risk education in the form of a DVD (76%), one-page informational sheet (75%), or educational booklet (70%). Almost all patients (98%) reported that they would be willing to share their test results with FDRs. The results of this study highlight prostate cancer patients' desire to receive and share genetic risk information. Future research should focus on assessing the long-term benefits of receiving genetic information for prostate cancer patients and implications of sharing this information with FDRs.
| S-EPMC7243408 | biostudies-literature
Project description:BackgroundMarijuana is currently legal for recreational use in 10 states and Washington DC while a total of 34 states have implemented varying degrees of medical marijuana. The commercialization of marijuana has been accompanied by a proliferation of false claims regarding the therapeutic potential of marijuana, which are popularized by several different information sources. To date, no study has examined where US adults get their information regarding marijuana.ObjectiveTo determine the sources of information associated with believing unsupported claims about marijuana.DesignProbability-based online survey PARTICIPANTS: 16,820 adults, with a response rate of about 55% (N?=?9003) MAIN MEASURES: Most influential sources of information about marijuana and belief of statements consistent with misinformation, for example, smoking marijuana has preventative health benefits, secondhand marijuana smoke or use during pregnancy is completely or somewhat safe, and marijuana is not at all addictive.Key resultsThere were 9003 respondents (response rate 55%). Forty-three percent believed unsupported claims about marijuana. The most influential sources of information were health professionals, traditional media, friends/relatives, and social media/internet. Individuals reporting social media or the Internet (1.46 CI [1.30, 1.64]), the marijuana industry (e.g., advertisements, dispensaries) (2.88 CI [2.15, 3.88]), and friends or relatives (1.41 CI[1.26, 1.58]) as the most influential source of information about marijuana were more likely to believe any statement consistent with misinformation about marijuana in comparison with those who reported other sources as most influential.ConclusionsIndividuals reporting the most significant source of information regarding marijuana was from social media or the Internet, the marijuana industry, or friends or relatives were more likely to believe unsupported claims about marijuana. Public health campaigns to counter the misinformation about marijuana to the public are needed.
| S-EPMC6957653 | biostudies-literature