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Getting the right fit: Convergence between preferred and perceived involvement in treatment decision making among medical oncology outpatients.

ABSTRACT: Background and Aims:While cancer patients' preferences for their level of involvement in treatment decision making (TDM) vary, previous research indicates a large proportion of patients are not experiencing TDM that meets their preferences. Evidence is needed to identify the characteristics of cancer patients who are less likely to report experiencing their preferred level of involvement in TDM, so that appropriate decision-making support can be provided to them. We examined in a sample of medical oncology outpatients (1) the level of agreement between preferred and perceived involvement in TDM and (2) demographic, psychological, disease, and treatment characteristics associated with having unmet preferences for involvement in TDM. Methods and Results:Cancer patients from three medical oncology treatment centers in Australia completed surveys assessing demographic, disease and treatment variables, psychological distress, and preferred and perceived involvement in TDM. Data were collected between February 2013 and December 2014. Factors associated with having unmet TDM preferences were examined using logistic regression. There were 355 patients included in the analysis (75% response rate). The mean age (±SD) of the participants was 61 (±12), and 45% were male. Overall, 60% of participants reported that their preferences for involvement in TDM were met. No demographic, psychological, disease, or treatment characteristics were significantly associated with an increased probability of not having TDM preferences met. Conclusions:In line with previous research, a large proportion (40%) of patients reported TDM experiences that were not in alignment with their preferences. Future research should explore additional characteristics that are associated with a lower likelihood of having TDM preferences met.

SUBMITTER: Mansfield E

PROVIDER: S-EPMC6346985 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundAt the start of the COVID-19 pandemic, guidance was needed more than ever to direct frontline healthcare and national containment strategies. Rigorous guidance based on robust research was compromised by the emergence of the pandemic and the urgency of need for guidance. Rather than aiming to "get guidance right", guidance developers needed to "get guidance right now".AimTo examine how guidance developers have responded to the need for credible guidance at the start of the COVID-19 pandemic.MethodsAn exploratory mixed-methods study was conducted among guidance developers. A web-based survey and follow-up interviews were used to examine the most pertinent challenges in developing COVID-19 guidance, strategies used to address these, and perspectives on the implications of the COVID-19 pandemic on future guidance development.ResultsThe survey was completed by 46 guidance developers. Survey findings showed that conventional methods of guidance development were largely unsuited for COVID-19 guidance, with 80% (n = 37) of respondents resorting to other methods. From the survey and five follow-up interviews, two themes were identified to bolster the credibility of guidance in a setting of extreme uncertainty: (1) strengthening end-user involvement and (2) conjoining evidence review and recommendation formulation. 70% (n = 32) of survey respondents foresaw possible changes in future guidance production, most notably shortening development time, by reconsidering how to balance between rigour and speed for different types of questions.Conclusion"Getting guidance right" and "getting guidance right now" are not opposites, rather uncertainties are always part of guidance development and require guidance developers to balance scientific robustness with usability, acceptability, adequacy and contingency. This crisis points to the need to acknowledge uncertainties of scientific evidence more explicitly and points to mechanisms to live with such uncertainty, thus extending guidance development methods and processes more widely.

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.

Project description:BackgroundLiterature on decision making about breast cancer prevention focuses on individual perceptions and attitudes that predict chemoprevention use, rather than the process by which women decide whether to take risk-reducing medications. This secondary analysis aimed to understand how women's perceptions of breast cancer risk and locus of control influence their decision making.MethodsWomen were accrued as part of the NRG Oncology/National Surgical Adjuvant Breast and Bowel Project Decision-Making Project 1, a study aimed at understanding contributors to chemoprevention uptake. Thirty women participated in qualitative in-depth interviews after being counseled about chemoprevention. Deductive codes grouped women based on dimensions of risk perception and locus of control. We used a constant comparative method to make connections among inductive themes focused on decision making, deductive codes for perceived risk and perceived locus of control, and the influence of explanatory models within and across participants.ResultsParticipants were predominantly non-Hispanic white (63%), with an average age of 50.9 years. Decision making varied across groups: the high-perceived risk/high-perceived control group used "social evidence" to model the behaviors of others. High-perceived risk/low-perceived control women made decisions based on beliefs about treatment, rooted in the experiences of social contacts. The low-perceived risk/low-perceived control group interpreted signs of risk as part of the normal continuum of bodily changes in comparison to others. Low-perceived risk/high-perceived control women focused on maintaining a current healthy trajectory.Conclusion"Social evidence" plays an important role in the decision-making process that is distinct from emotional aspects. Attending to patients' perceptions of risk and control in conjunction with social context is key to caring for patients at high risk in a way that is evidence based and sensitive to patient preferences.

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Getting the right fit: Convergence between preferred and perceived involvement in treatment decision making among medical oncology outpatients.

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