Genomic profiling: Shared decision making and emotional well-being among patients with metastatic genitourinary cancers.

2019 ◽  
Vol 37 (31_suppl) ◽  
pp. 31-31
Author(s):  
Cristiane Decat Bergerot ◽  
Paulo Gustavo Bergerot ◽  
Errol James Philip ◽  
Meghan Salgia ◽  
Nicholas Salgia ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Clinical Care ◽  
Well Being ◽  
Medical Decision ◽  
Genomic Profiling ◽  
Shared Decision ◽  
Therapeutic Implications ◽  
Essential Components ◽  
Genitourinary Cancers

31 Background: Little is known regarding patients’ beliefs concerning genomic profiling (GP) and its potential association with emotional well-being. We examined essential components of shared decision-making in the context of GP and their relationship to symptoms of anxiety (SAnx) and of depression (SDep) among patients with metastatic genitourinary cancers. Methods: Patients were recruited from a single institution after receiving a standardized dialogue about GP from their oncologist. Patients were included if they had received GP in the context of routine clinical care, and assessed across a range of perceptions related to GP (e.g., communication, expectations, risks associated, reasons and hopes), SAnx (PROMIS-Anxiety) and SDep (PROMIS-Depression). The Kruskal-Wallis test was used. Results: Seventy patients with incurable genitourinary cancers (60% kidney, 21% prostate and 18% bladder cancers) were surveyed. Patients reported that information about GP was presented clearly (95%), comprehensively (94%), accurately (92%), and compassionately (98%), and most felt they possessed a good understanding of GP (78%). No significant differences emerged between patients with or without SAnx or SDep. Patients reported similar reasons for pursuing GP, including to help guide treatment decision making and to follow their physician’s suggestion. Notably, those with SAnx or SDep were more likely to report a desire for information that could help predict their disease outcome (20% and 33%) compared to patients without SAnx or SDep (0%) (P < 0.05). Those with SDep tended to report a desire for GP to improve their treatment response compared to those without SDep (42% vs. 21%, P = 0.04). Compared to those without SDep, patients with SDep were more likely to report a belief that GP could reveal a cure to their disease (73% vs. 50%, P = 0.01). Conclusions: Our findings reinforce the importance of effective counselling in the context of complex medical decision-making. SAnx and SDep may be associated with erroneous beliefs or expectations the role of GP in treatment. Given the complexity of GP, interventions are needed to enhance patients' understanding of these tests and therapeutic implications.

scholarly journals Treatment Choice in Adolescents With Cleft Lip and/or Palate: The Importance of Shared Decision-Making

2019 ◽  
Vol 56 (9) ◽  
pp. 1220-1229
Author(s):  
Francesca Wogden ◽  
Alyson Norman ◽  
Louise Dibben
Keyword(s):  
Decision Making ◽  
Young People ◽  
Shared Decision Making ◽  
Cleft Lip ◽  
Well Being ◽  
Medical Decision ◽  
Shared Decision ◽  
Pediatric Dentist ◽  
Semistructured Interviews ◽  
Inductive Thematic Analysis

Objective: Limited research has studied the involvement of children in medical decision-making. The aim of the study was to understand the involvement of adolescents with cleft lip and/or palate (CL/P) in decisions about elective surgeries and treatments. Design: Parents and professionals completed mixed-methods questionnaires about the degree to which children had been involved in choices about elective treatments. Data were analyzed using content analysis. Young people aged 12 to 25 years were asked to take part in semistructured interviews. The data were analyzed using inductive thematic analysis. Setting: Questionnaire data collection took place online, and interview data were collected via messenger or telephone-based interviews. Participants: The study employed 30 participants; 11 young people (3 male, 8 female), 17 parents (13 mothers, 4 fathers), and 5 professionals (2 surgeons, 2 speech and language therapists, and 1 pediatric dentist). Results: Five main themes were identified. These reflected participants feeling that with increasing age should come increased involvement in decision-making and that it was important for adolescents to “have a voice” during decision-making. Parents, peers, and health professionals were identified as influencing decisions. Most adolescents reported overall satisfaction with their involvement in decision-making but sometimes felt “left in the dark” by professionals or under pressure from parents. A desire to improve speech and/or appearance was as an area where adolescents wanted to be more involved in decision-making. Conclusions: Shared decision-making is an important factor for psychological well-being by promoting autonomy and self-esteem among adolescents with CL/P.

Prudence in Shared Decision-Making: The Missing Link between the “Technically Correct” and the “Morally Good” in Medical Decision-Making

2020 ◽  
Author(s):  
Paul Muleli Kioko ◽  
Pablo Requena Meana
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Patient Autonomy ◽  
Intellectual Ability ◽  
Medical Decision ◽  
Shared Decision ◽  
Physician Patient Relationship ◽  
Good Healing ◽  
The Right ◽  
Physician Patient

Abstract Shared Decision-Making is a widely accepted model of the physician–patient relationship providing an ethical environment in which physician beneficence and patient autonomy are respected. It acknowledges the moral responsibility of physician and patient by promoting a deliberative collaboration in which their individual expertise—complementary in nature, equal in importance—is emphasized, and personal values and preferences respected. Its goal coincides with Pellegrino and Thomasma’s proximate end of medicine, that is, a technically correct and morally good healing decision for and with a particular patient. We argue that by perfecting the intellectual ability to apprehend the complexity of clinical situations, and through a perfection of the application of the first principles of practical reason, prudence is able to point toward the right and good shared medical decision. A prudent shared medical decision is therefore always in keeping with the kind of person the physician and the patient have chosen to be.

scholarly journals Navigating the Decision Space: Shared Medical Decision Making as Distributed Cognition

2016 ◽  
Vol 27 (7) ◽  
pp. 1035-1048 ◽  
Author(s):  
Katherine D. Lippa ◽  
Markus A. Feufel ◽  
F. Eric Robinson ◽  
Valerie L. Shalin
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Distributed Cognition ◽  
Medical Decision Making ◽  
Medical Training ◽  
Adverse Outcomes ◽  
Medical Decision ◽  
Shared Decision ◽  
Access To Information ◽  
Decision Space

Despite increasing prominence, little is known about the cognitive processes underlying shared decision making. To investigate these processes, we conceptualize shared decision making as a form of distributed cognition. We introduce a Decision Space Model to identify physical and social influences on decision making. Using field observations and interviews, we demonstrate that patients and physicians in both acute and chronic care consider these influences when identifying the need for a decision, searching for decision parameters, making actionable decisions Based on the distribution of access to information and actions, we then identify four related patterns: physician dominated; physician-defined, patient-made; patient-defined, physician-made; and patient-dominated decisions. Results suggests that (a) decision making is necessarily distributed between physicians and patients, (b) differential access to information and action over time requires participants to transform a distributed task into a shared decision, and (c) adverse outcomes may result from failures to integrate physician and patient reasoning. Our analysis unifies disparate findings in the medical decision-making literature and has implications for improving care and medical training.

Improving the Perception of Patient-Centered Wellness in a Virtual Population During the COVID-19 Pandemic

2021 ◽  
pp. JDNP-D-20-00078
Author(s):  
Sybilla Myers ◽  
Christopher Kennedy
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Shared Decision Making ◽  
Cognitive Theory ◽  
Well Being ◽  
Mobile App ◽  
Shared Decision ◽  
Patient Centered ◽  
The Social

BackgroundPerceived health-related quality of life (HRQOL) is fundamental to well-being and is a meaningful way to measure physical and mental health.Local ProblemNo standard method exists for measuring perceived HRQOL during the COVID-19 pandemic in participants as they attempt to improve their self-determined wellness goals. An implementation plan that considers the social distancing limitations imposed can be used to predict an individual’s likelihood of long-term success.MethodsDuring the four, 2-week plan-do-study-act (PDSA) cycles, the Social Cognitive Theory model informed the implementation of the four core interventions. To guide iterative changes, the data was analyzed through Excel and run charts.InterventionsThe four core interventions were the shared decision-making tool (SDMT), health mobile app tool (HMAT), wellness tracker tool (WTT), and the team engagement plan.ResultsAmong 28 participants, perceived quality of life increased by 70%, engagement in shared decision-making increased to 82%, app use and confidence increased to 85%, and goal attainment reached 81%.ConclusionsThe SDMT, health app, and wellness tracker created a methodical plan of accountability for increasing participant wellness. The contextual barrier of the COVID-19 pandemic added a negative wellness burden which was mitigated by creating a patient-centered culture of wellness.

scholarly journals The Association Between Patients' eHealth Literacy and Satisfaction With Shared Decision-making and Well-being: Multicenter Cross-sectional Study (Preprint)

2020 ◽  
Author(s):  
Richard Huan Xu ◽  
Ling-Ming Zhou ◽  
Eliza Lai-Yi Wong ◽  
Dong Wang
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Regression Models ◽  
Well Being ◽  
Shared Decision ◽  
Background Characteristics ◽  
Cross Sectional ◽  
Ehealth Literacy ◽  
High Level ◽  
The Relationship

BACKGROUND Although previous studies have shown that a high level of health literacy can improve patients’ ability to engage in health-related shared decision-making (SDM) and improve their quality of life, few studies have investigated the role of eHealth literacy in improving patient satisfaction with SDM (SSDM) and well-being. OBJECTIVE This study aims to assess the relationship between patients’ eHealth literacy and their socioeconomic determinants and to investigate the association between patients’ eHealth literacy and their SSDM and well-being. METHODS The data used in this study were obtained from a multicenter cross-sectional survey in China. The eHealth Literacy Scale (eHEALS) and Investigating Choice Experiments Capability Measure for Adults were used to measure patients’ eHealth literacy and capability well-being, respectively. The SSDM was assessed by using a self-administered questionnaire. The Kruskal-Wallis one-way analysis of variance and Wilcoxon signed-rank test were used to compare the differences in the eHEALS, SSDM, and Investigating Choice Experiments Capability Measure for Adults scores of patients with varying background characteristics. Ordinary least square regression models were used to assess the relationship among eHealth literacy, SSDM, and well-being adjusted by patients’ background characteristics. RESULTS A total of 569 patients completed the questionnaire. Patients who were male, were highly educated, were childless, were fully employed, were without chronic conditions, and indicated no depressive disorder reported a higher mean score on the eHEALS. Younger patients (SSDM<sub>≥61 years</sub>=88.6 vs SSDM<sub>16-30 years</sub>=84.2) tended to show higher SSDM. Patients who were rural residents and were well paid were more likely to report good capability well-being. Patients who had a higher SSDM and better capability well-being reported a significantly higher level of eHealth literacy than those who had lower SSDM and poorer capability well-being. The regression models showed a positive relationship between eHealth literacy and both SSDM (<i>β</i>=.22; <i>P</i>&lt;.001) and well-being (<i>β</i>=.26; <i>P</i>&lt;.001) after adjusting for patients’ demographic, socioeconomic status, lifestyle, and health status variables. CONCLUSIONS This study showed that patients with a high level of eHealth literacy are more likely to experience optimal SDM and improved capability well-being. However, patients’ depressive status may alter the relationship between eHealth literacy and SSDM. CLINICALTRIAL

scholarly journals The “Preparation for Shared Decision-Making” Tool for Women With Advanced Breast Cancer: Qualitative Validation Study

10.2196/16511 ◽  
2019 ◽  
Vol 11 (4) ◽  
pp. e16511
Author(s):  
Domitilla Masi ◽  
Amalia Elvira Gomez-Rexrode ◽  
Rina Bardin ◽  
Joshua Seidman
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Advanced Breast Cancer ◽  
Shared Decision Making ◽  
Validation Study ◽  
Clinical Care ◽  
Advanced Breast ◽  
Future Research ◽  
Shared Decision ◽  
Clinical Workflow

Background The range of decisions and considerations that women with advanced breast cancer (ABC) face can be overwhelming and difficult to manage. Research shows that most patients prefer a shared decision-making (SDM) approach as it provides them with the opportunity to be actively involved in their treatment decisions. The current engagement of these patients in their clinical decisions is suboptimal. Moreover, implementing SDM into routine clinical care can be challenging as patients may not always feel adequately prepared or may not expect to be involved in the decision-making process. Objective Avalere Health developed the Preparation for Shared Decision-Making (PFSDM) tool to help patients with ABC feel prepared to communicate with their clinicians and engage in decision making aligned with their preferences. The goal of this study was to validate the tool for its acceptability and usability among this patient population. Methods We interviewed a diverse group of women with ABC (N=30). Interviews were audiorecorded, transcribed, and double coded by using NVivo. We assessed 8 themes to understand the acceptability and usability of the tool. Results Interviewees expressed that the tool was acceptable for preparing patients for decision making and would be useful for helping patients know what to expect in their care journey. Interviewees also provided useful comments to improve the tool. Conclusions This validation study confirms the acceptability and usability of the PFSDM tool for women with ABC. Future research should assess the feasibility of the tool’s implementation in the clinical workflow and its impact on patient outcomes.

scholarly journals Development and Evaluation of the Shared Decision Making Process Scale: A Short Patient-Reported Measure

2020 ◽  
pp. 0272989X2097787
Author(s):  
K. D. Valentine ◽  
Ha Vo ◽  
Floyd J. Fowler ◽  
Suzanne Brodney ◽  
Michael J. Barry ◽  
...  
Keyword(s):  
Decision Making ◽  
Construct Validity ◽  
Shared Decision Making ◽  
Small Sample ◽  
Decision Quality ◽  
Medical Decision ◽  
Shared Decision ◽  
Partial Credit ◽  
Patient Reported ◽  
Process Scale

Background The Shared Decision Making (SDM) Process scale is a short patient-reported measure of the amount of SDM that occurs around a medical decision. SDM Process items have been used previously in studies of surgical decision making and exhibited discriminant and construct validity. Method Secondary data analysis was conducted across 8 studies of 11 surgical conditions with 3965 responses. Each study contained SDM Process items that assessed the discussion of options, pros and cons, and preferences. Item wording, content, and number of items varied, as did inclusion of measures assessing decision quality, decisional conflict (SURE scale), and regret. Several approaches for scoring, weighting, and the number of items were compared to identify an optimal approach. Optimal SDM Process scores were compared with measures of decision quality, conflict, and regret to examine construct validity; meta-analysis generated summary results. Results Although all versions of the scale were highly correlated, a short, partial credit, equally weighted version of the scale showed favorable properties. Overall, higher SDM Process scores were related to higher decision quality ( d = 0.18, P = 0.029), higher SURE scale scores ( d = 0.57, P < 0.001), and lower decision regret ( d = −0.34, P < 0.001). Significant heterogeneity was present in all validity analyses. Limitations Included studies all focused on surgical decisions, several had small sample sizes, and many were retrospective. Conclusion SDM Process scores showed resilience to coding changes, and a scheme using the short, partial credit, with equal weights was adopted. The SDM Process scores demonstrated a small, positive relationship with decision quality and were consistently related to lower decision conflict and less regret, providing evidence of validity across several surgical decisions.

Does shared decision making for PSA screening empower patients?

2017 ◽  
Vol 35 (6_suppl) ◽  
pp. e549-e549
Author(s):  
James Austin Talcott ◽  
Maureen Bezuhly ◽  
Gina Aharanoff ◽  
Jessica Herzstein ◽  
Michael P. Osborne ◽  
...  
Keyword(s):  
Decision Making ◽  
Randomized Trial ◽  
Shared Decision Making ◽  
Specific Antigen ◽  
Cluster Randomized Trial ◽  
Educational Interventions ◽  
Medical Decision ◽  
Shared Decision ◽  
Psa Screening ◽  
Screening Guideline

e549 Background: Participant characteristics affect shared decision making. In a randomized trial of physician (MD) educational interventions to improve cancer screening guideline compliance, we studied patient (PT) and MD recall of discussions and how PT characteristics affected recall. Methods: In a cluster-randomized trial of educational supports for MDs, we are enrolling an age- (30-89 years) and sex-stratified sample of 216 PTs who underwent a physical examination at two urban hospitals, 18 for each of 12 primary care MDs. Screening guideline formatting (color-coding) and academic detailing were randomly assigned in a 2x2 design. Immediate post-encounter surveys recorded PT and MD recall of screening discussions. Results: Of the first 174 participants, 92 were men. PTs were diverse (69% white) and well educated (73% college degree). When MDs reported a prostate specific antigen (PSA) screening discussion, 32% of PTs did not, and 26% of MDs disagreed when PTs reported the discussion occurred. Further, when the MD reported recommending screening, 26% of PTs disagreed, and 33% of MDs disagreed when their patients reported a recommendation. Overall, agreement between all PTs and MDs on whether screening was recommended was fair (kappa = 0.29) but there was no agreement for PTs over 70 years (kappa = -0.03). PTs reported more elements of shared decision making than MDs (data not shown). When both PT and MD or the MD alone reported that all elements of shared medical decision making had occurred, agreement on whether screening was recommended improved (kappa = 0.54 and 0.45, respectively). When PTs disagreed with their MD, they more often reported recommending for screening not against (11 vs. 4). Conclusions: In a highly educated, diverse PT population, PTs and MDs surveyed immediately after their encounter often disagreed on whether PSA screening was discussed and recommended. Disagreement was worse with older PT age but improved when both PT and MD or the MD alone reported all shared decision making elements. Clinical trial information: NCT02430948.

scholarly journals Institutional constraints on strategic maneuvering in shared medical decision-making

2012 ◽  
Vol 1 (1) ◽  
pp. 19-32 ◽  
Author(s):  
A. Francisca Snoeck Henkemans ◽  
Dima Mohammed
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Medical Decision Making ◽  
Critical Discussion ◽  
Medical Decision ◽  
Institutional Constraints ◽  
Treatment Preferences ◽  
Shared Decision ◽  
Basic Principles ◽  
The Ideal

In this paper it is first investigated to what extent the institutional goal and basic principles of shared decision making are compatible with the aim and rules for critical discussion. Next, some techniques that doctors may use to present their own treatment preferences strategically in a shared decision making process are discussed and evaluated both from the perspective of the ideal of shared decision making and from that of critical discussion.

scholarly journals Patient autonomy in dental medical decision making – demonstrating the need for shared decision making

2020 ◽  
Author(s):  
Mareike Benecke ◽  
Jürgen Kasper ◽  
Christoph Heesen ◽  
Nina Schäffler ◽  
Daniel Reissmann
Keyword(s):  
Multiple Sclerosis ◽  
Decision Making ◽  
General Practice ◽  
Shared Decision Making ◽  
Treatment Decisions ◽  
Medical Decision ◽  
Shared Decision ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Study Results

Abstract Background: Evidence-based Dentistry (EBD), decision aids, patient preferences and autonomy preferences (AP) play an important role in shared decision making (SDM) and are useful tools in the process of medical and dental decisions as well as in developing of quality criteria for decision making in many fields of health care. However, there aren’t many studies on SDM and AP in the field of dentistry. This study aimed at exploring patients’ autonomy preferences in dentistry in comparison to other medical domains. Methods: As a first step, a consecutive sample of 100 dental patients and 16 dentists was recruited at a university-based prosthodontic clinic to assess and compare patients’ and dentists’ preferences regarding their roles in dental decision making for commonly performed diagnostic and treatment decisions using the Control Preference Scale (CPS). This was followed by a cross sectional survey to study autonomy preferences in three cohorts of 100 patients each recruited from general practices, a multiple sclerosis clinic, and a university-based prosthodontic clinic . A questionnaire with combined items from the Autonomy Preference Index (API) to assess general and the CPS to assess specific preferences was used in this process. Results: Dentists were slightly less willing to deliver control than patients willing to enact autonomy. Decisions about management of tooth loss were however considered relevant for a shared decision making by both parties. Highest AP was expressed by people with multiple sclerosis, lowest by patients in dentistry (CPS means: dentistry 2.5, multiple sclerosis 2.1, general practice 2.4, p=.035). Patients analysis showed considerable differences in autonomy preferences referring to different decision types (p<.001). More autonomy was needed for treatment decisions in comparison to diagnostic decisions, for trivial compared to severe conditions, and for dental care compared to general practice (all: p<.001). Conclusion: The study results showed substantial relevance of patient participation in decision making in dentistry. Furthermore, a need has been discovered to refer to specific medical decisions instead of assessing autonomy preferences in general.

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