What men want: Results from a national survey on decision making for prostate cancer treatment and research participation.
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ABSTRACT:
SUBMITTER: Mendenhall NP
PROVIDER: S-EPMC8604236 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundThere is a longstanding concern about the accuracy of surrogate consent in representing the health care and research preferences of those who lose their ability to decide for themselves. We sought informed, deliberative views of the older general public (?50 years old) regarding their willingness to participate in dementia research and to grant leeway to future surrogates to choose an option contrary to their stated wishes.Methodology/principal findings503 persons aged 50+ recruited by random digit dialing were randomly assigned to one of three groups: deliberation, education, or control. The deliberation group attended an all-day education/peer deliberation session; the education group received written information only. Participants were surveyed at baseline, after the deliberation session (or equivalent time), and one month after the session, regarding their willingness to participate in dementia research and to give leeway to surrogates, regarding studies of varying risk-benefit profiles (a lumbar puncture study, a drug randomized controlled trial, a vaccine randomized controlled trial, and an early phase gene transfer trial). At baseline, 48% (gene transfer scenario) to 92% (drug RCT) were willing to participate in future dementia research. A majority of respondents (57-71% depending on scenario) were willing to give leeway to future surrogate decision-makers. Democratic deliberation increased willingness to participate in all scenarios, to grant leeway in 3 of 4 scenarios (lumbar puncture, vaccine, and gene transfer), and to enroll loved ones in research in all scenarios. On average, respondents were more willing to volunteer themselves for research than to enroll their loved ones.Conclusions/significanceMost people were willing to grant leeway to their surrogates, and this willingness was either sustained or increased after democratic deliberation, suggesting that the attitude toward leeway is a reliable opinion. Eliciting a person's current preferences about future research participation should also involve eliciting his or her leeway preferences.
| S-EPMC3561414 | biostudies-literature
Project description:ObjectiveThere was increasingly demand of participation in surgical decision-making among Chinese patients with prostate cancer. However, due to the complex healthcare system and advanced care settings, it is quite challenging for the patients to gain sufficient support from the institute and the government. This research aimed to investigate the factors that impact the degree of participation in surgical decision-making among Chinese prostate cancer patients.MethodsA phenomenological approach of qualitative research based on the results of semi-structured interviews was adopted, to explore the influencing factors which hinder the participation in surgical decision-making. Consolidated Criteria for Reporting Qualitative Research were utilized. Up to 160 post-operative patients who had undergone radical prostatectomy along with 68 medical and nursing staffs, were purposively recruited in this research. This retrospective study was carried out from September 2018 to August 2019. After recording and transcribing the interviews, the interview materials were evaluated via the Colaizzi's seven step approach and the NVivo Version 10 software to analyze the interview content.ResultsAccording to the analysis and summary of the interviews, there were three factors affecting the degree of participation in surgical decision-making. Firstly, insufficient information was provided by medical and nursing staffs because of their lack of time, proper communication skills, and career experience, as well as difficulties in the development of patient decision aid and inconsistent resource availability. Secondly, the cognitive level of decision-making among patients was relatively low due to poor psychological endurance, insufficient amount of education, senility, and less knowledge and information demand. Ultimately, decisions were constantly made by family members with/without patients.ConclusionsThe degree of participation of Chinese prostate cancer patients in the surgical decision-making had much space for improvement.
| S-EPMC9051348 | biostudies-literature
Project description:BACKGROUND:The American Cancer Society (ACS) recommends men have the opportunity to make an informed decision about screening for prostate cancer (PCa). The ACS developed a unique decision aid (ACS-DA) for this purpose. However, to date, studies evaluating the efficacy of the ACS-DA are lacking. The authors evaluated the ACS-DA among a cohort of medically underserved men (MUM). METHODS:A multiethnic cohort of MUM (n?=?285) was prospectively included between June 2010 and December 2014. The ACS-DA was presented in a group format. Levels of knowledge on PCa were evaluated before and after the presentation. Participants' decisional conflict and thoughts about the presentation also were evaluated. Logistic regression analyses were performed to determine factors associated with having an adequate level of knowledge. RESULTS:Before receiving the ACS-DA, 33.1% of participants had adequate knowledge on PCa, and this increased to 77% after the DA (P?<?.0001). On multivariate analysis, higher education level (odds ratio, 11.19; P?=?.001) and history of another cancer (odds ratio, 7.45; P?=?.03) were associated with having adequate knowledge after receiving the DA. Levels of decisional conflict were low and were correlated with levels of knowledge after receiving the DA. The majority of men also rated the presentation as favorable and would recommend the ACS-DA to others. CONCLUSIONS:Use of the ACS-DA was feasible among MUM and led to increased PCa knowledge. This also correlated with low levels of decisional conflict. The ACS-DA presented to groups of men may serve as a feasible tool for informed decision making in a MUM population. Cancer 2017;123:583-591. © 2016 American Cancer Society.
| S-EPMC5293675 | biostudies-literature
Project description:Elderly patients with acute myeloid leukemia can be treated with intensive chemotherapy, low-intensity therapy such as low-dose aracytine or hypomethylating agents, or best supportive care. The choice between these treatments is a function of many patient-related and disease-related factors. We investigated how physicians' behavioral characteristics affect medical decision-making between intensive and non-intensive therapy in this setting. A nationwide cross-sectional online survey of hematologists collected data on medical decision-making for 6 clinical vignettes involving older acute myeloid leukemia patients that were representative of routine practice. Questionnaires elicited physicians' demographic and occupational characteristics along with their individual behavioral characteristics according to a decision theory framework. From the pattern of responses to the vignettes, a K-means clustering algorithm was used to distinguish those who were likely to prescribe more intensive therapy and those who were likely to prescribe less intensive or no therapy. Multivariate analyses were used to identify physician's characteristics predictive of medical decision-making. We obtained 230 assessable answers, which represented an adjusted response rate of 45.4%. A multivariate model (n=210) revealed that physicians averse to uncertainty recommend significantly more intensive chemotherapy: Odds Ratio (OR) [95% Confidence Interval (CI)]: 1.15 [1.01;1.30]; P=0.039. Male physicians who do not conform to the expected utility model (assumed as economically irrational) recommend more intensive chemotherapy [OR (95% CI) = 3.45 (1.34; 8.85); P=0.01]. Patient volume per physician also correlated with therapy intensity [OR (95% CI)=0.98 (0.96; 0.99); P=0.032]. The physicians' medical decision-making was not affected by their age, years of experience, or hospital facility. The significant association between medical decision and individual behavioral characteristics of the physician identifies a novel non-biological factor that may affect acute myeloid leukemia patients' outcomes and explain variations in clinical practice. It should also encourage the use of validated predictive models and the description of novel bio-markers to best select patients for intensive chemotherapy or low-intensity therapy.
| S-EPMC6269286 | biostudies-literature
Project description:Background. Multiple studies have shown that digitally mediated decision aids help prepare patients for medical decision making with their providers. However, few studies have investigated whether decision-support preferences differ between non-English-speaking and English-speaking Latino men with limited literacy. Objective. To identify and compare health information seeking patterns, preferences for information presentation, and interest in digital decision aids in a sample of Southern Californian underserved Latino men with newly diagnosed prostate cancer at a county hospital. Methods. We conducted semistructured, in-depth telephone interviews with 12 Spanish-speaking and 8 English-speaking Latino men using a purposive sampling technique. Following transcription of taped interviews, Spanish interviews were translated. Using a coding protocol developed by the team, two bilingual members jointly analyzed the transcripts for emerging themes. Coder agreement exceeded 80%. Differences were resolved through discussion. Results. Thematic differences between groups with different preferred languages emerged. Most respondents engaged in online health information seeking using cellphones, perceived a paternalistic patient-provider relationship, and expressed willingness to use hypothetical digital decision aids if recommended by their provider. English speakers reported higher digital technology proficiency for health-related searches. They also more frequently indicated family involvement in digital search related to their condition and preferred self-guided, web-based decision aids. In comparison, Spanish speakers reported lower digital technology proficiency and preferred family-involved, coach-guided, paper and visual decision aids. English speakers reported substantially higher levels of formal education. Conclusion. Preferences regarding the use of digital technology to inform prostate cancer treatment decision making among underserved Latino men varied depending on preferred primary language. Effective preparation of underserved Latino men for shared decision making requires consideration of alternative approaches depending on level of education attainment and preferred primary language.
| S-EPMC8165846 | biostudies-literature
Project description:Selective estrogen receptor modulators (SERMs) reduce breast cancer risk. Adoption of SERMs as prevention medication remains low. This is the first study to quantify social, cultural, and psychologic factors driving decision making regarding SERM use in women counseled on breast cancer prevention options. A survey study was conducted with women counseled by a health care provider (HCP) about SERMs. A statistical comparison of responses was performed between those who decided to use and those who decided not to use SERMs. Independent factors associated with the decision were determined using logistic regression. Of 1,023 participants, 726 made a decision: 324 (44.6%) decided to take a SERM and 402 (55.4%) decided not to. The most important factor for deciding on SERM use was the HCP recommendation. Other characteristics associated with the decision included attitudes and perceptions regarding medication intake, breast cancer worry, trust in HCP, family members with blood clots, and others' experiences with SERMs. The odds of SERM intake when HCP recommended were higher for participants with a positive attitude toward taking medications than for those with a negative attitude (Pinteraction = 0.01). This study highlights the importance of social and cultural aspects for SERM decision making, most importantly personal beliefs and experiences. HCPs' recommendations play a statistically significant role in decision making and are more likely to be followed if in line with patients' attitudes. Results indicate the need for developing interventions for HCPs that not only focus on the presentation of medical information but, equally as important, on addressing patients' beliefs and experiences. Cancer Prev Res; 10(11); 625-34. ©2017 AACRSee related editorial by Crew, p. 609.
| S-EPMC5848501 | biostudies-literature
Project description:IntroductionThe participation of general practitioners (GPs) in primary care research is variable and often poor. We aimed to develop a substantive and empirical theoretical framework to explain GPs' decision-making process to participate in research.MethodsWe used the grounded theory approach to construct a substantive theory to explain the decision-making process of GPs to participate in research activities. Five in-depth interviews and four focus group discussions were conducted among 21 GPs. Purposeful sampling followed by theoretical sampling were used to attempt saturation of the core category. Data were collected using semi-structured open-ended questions. Interviews were recorded, transcribed verbatim and checked prior to analysis. Open line-by-line coding followed by focus coding were used to arrive at a substantive theory. Memoing was used to help bring concepts to higher abstract levels.ResultsThe GPs' decision to participate in research was attributed to their inner drive and appreciation for primary care research and their confidence in managing their social and research environments. The drive and appreciation for research motivated the GPs to undergo research training to enhance their research knowledge, skills and confidence. However, the critical step in the GPs' decision to participate in research was their ability to align their research agenda with priorities in their social environment, which included personal life goals, clinical practice and organisational culture. Perceived support for research, such as funding and technical expertise, facilitated the GPs' participation in research. In addition, prior experiences participating in research also influenced the GPs' confidence in taking part in future research.ConclusionsThe key to GPs deciding to participate in research is whether the research agenda aligns with the priorities in their social environment. Therefore, research training is important, but should be included in further measures and should comply with GPs' social environments and research support.
| S-EPMC5919004 | biostudies-literature
Project description:BackgroundShared decision-making is the gold standard for good clinical practice, and thus, psychometric instruments have been established to assess patients' generic preference for participation (e.g., the Autonomy Preference Index, API). However, patients' preferences may vary depending on the specific disease and with respect to the specific decision context. With a modified preference index (API-Uro), we assessed patients' specific participation preference in preference-sensitive decisions pertaining to urological cancer treatments and compared this with their generic participation preference.MethodsIn Study 1, we recruited (N = 469) urological outpatients (43.1% urooncological) at a large university hospital. Participation preference was assessed with generic measures (API and API case vignettes) and with the disease-specific API-Uro (urooncological case vignettes describing medical decisions of variable difficulty). A polychoric exploratory factor analysis was used to establish factorial validity and reduce items. In Study 2, we collected data from N = 204 bladder cancer patients in a multicenter study to validate the factorial structure with confirmatory factor analysis. Differences between the participation preference for different decision contexts were analyzed.ResultsStudy 1: Scores on the specific urooncological case vignettes (API-Uro) correlated with the generic measure (r = .44) but also provided incremental information. Among the disease-specific vignettes of the API-Uro, there were two factors with good internal consistency (α ≥ .8): treatment versus diagnostic decisions. Patients desired more participation for treatment decisions (77.8%) than for diagnostic decisions (22%), χ2(1) = 245.1, p ≤ .001. Study 2: Replicated the correlation of the API-Uro with the API (r = .39) and its factorial structure (SRMR = .08; CFI = .974). Bladder cancer patients also desired more participation for treatment decisions (57.4%) than for diagnostic decisions (13.3%), χ²(1) =84, p ≤ .001.ConclusionsThe desire to participate varies between treatment versus diagnostic decisions among urological patients. This underscores the importance of assessing participation preference for specific contexts. Overall, the new API-Uro has good psychometric properties and is well suited to assess patients' preferences. In routine care, measures of participation preference for specific decision contexts may provide incremental, allowing clinicians to better address their patients' individual needs.
| S-EPMC10324222 | biostudies-literature
Project description:Background and objectiveInhaled corticosteroids (ICS) reduce asthma-related morbidity and mortality. However, ICS non-adherence is more common in African American (AA) adults than White adults and explains, in part, the marked asthma disparities that AAs experience. We aimed to understand how ICS non-adherence could be addressed from the perspective of AA adults with asthma, their family, and friends.MethodsWe held six focus groups at two urban federally qualified health centers separately with adult asthma patients (n?=?2), patients' family/friends (n?=?2), and patients and family/friends together (n?=?2). Qualitative descriptive methodology guided the design and the conduct of focus groups. Verbatim transcripts were analyzed by three coders working independently using conventional content analysis to capture responses to interview questions and identify emergent categories.ResultsForty-six AA adults participated (32 patients, 14 family/friends); 67% were female. Participants stated that ICS adherence could be improved if they were heard, respected, and received patient-centered care, and if providers highlighted the risk of ICS non-adherence at clinic visits. Though not explicitly described by participants as shared decision-making (SDM), what they described included many essential elements of SDM.ConclusionsParticipants desired SDM and offered reasons for ICS non-adherence that could be used to inform an SDM intervention for clinical application. Strategies informed by the recipients of care and delivered by providers during routine office visits offer a scalable approach to narrowing asthma disparities experienced by AA adults.Trial registrationClinicalTrials.gov identifier NCT03036267.
| S-EPMC6960328 | biostudies-literature
Project description:For men with newly diagnosed prostate cancer the decisions about treatment options are complex and difficult. The aim of this study was to investigate any association between the extent to which men wanted to be involved in the decision making process, their satisfaction with that process, and their levels of decision regret after treatment. The study population consisted of men diagnosed with prostate cancer at a regional center in Australia. Men (n = 324) were invited to complete a mail out survey which included demographic questions, the treatment chosen, and three validated tools: The Control Preference Scale to measure the degree of control assumed when making decisions about medical interventions; the Treatment Decision-Making Satisfaction Scale (TDM- SAT) to assess satisfaction with the treatment decision making process; and the Decision Regret Scale to assess the level of regret after treatment. The majority of the 151 respondents (47% response rate) expressed an active decision control preference. There was no correlation between age and the treatment chosen or the degree of control men exerted over the decision-making process. Men who preferred a passive role were less satisfied with the decision-making process than were those who took an active or collaborative approach. A strong inverse correlation was demonstrated between regret experienced and satisfaction with the decision-making process. In conclusion, for men newly diagnosed with prostate cancer, taking an active role in the treatment decision making process led to greater satisfaction with that process, which in turn reduced their chances of experiencing regret following treatment.
| S-EPMC8287369 | biostudies-literature