scholarly journals Patient-Reported Outcome Measures may optimize shared decision-making for cancer risk management in BRCA mutation carriers

Breast Cancer ◽  
2019 ◽  
Vol 27 (3) ◽  
pp. 426-434
Author(s):  
L. S. E. van Egdom ◽  
M. A. de Kock ◽  
I. Apon ◽  
M. A. M. Mureau ◽  
C. Verhoef ◽  
...  
Keyword(s):  
Decision Making ◽  
Risk Management ◽  
Cancer Risk ◽  
Shared Decision Making ◽  
Well Being ◽  
Shared Decision ◽  
Mutation Carriers ◽  
Patient Reported ◽  
One Year ◽  
Cancer Risk Management

Abstract Purpose The aim of this study was to compare patient-reported outcomes (PROs) of BRCA1/2 mutation carriers, either after bilateral prophylactic mastectomy (BPM) or during breast surveillance, to improve shared decision-making in their cancer risk management. Methods Unaffected BRCA1/2 mutation carriers at least one year after BPM followed by immediate breast reconstruction (BPM-IBR) or one year under surveillance were eligible. After informed consent, the Hospital Anxiety and Depression Scale (HADS) and BREAST-Q were administered and compared between the different strategies. PROs were also compared to available normative data. Results Ninety-six participants were analyzed in this study and showed significant differences between strategies in age, age at genetic testing, and time since BPM or starting breast surveillance. All HADS scores were below 8 suggesting no signs of anxiety or depression in both groups. Higher mean ‘Q-physical well-being’ scores were reported by the surveillance group (81.78 [CI 76.99–86.57]) than the BPM group (76.96 [CI 73.16 – 80.75]; p = 0.011). Overall, for both questionnaires better scores were seen when compared to age-matched normative data. Conclusions No signs of anxiety or depression were seen in the surveillance or BPM-IBR group. Slightly better mean BREAST-Q scores were seen for the surveillance group in comparison to BPM-IBR, except for ‘Q-psychological well-being’. The difference in ‘Q-physical well-being’ was significantly worse for BPM-IBR. Approaches to obtain longitudinal PROs and reference values should be explored in the future, which could add value to shared decision-making in regards to breast cancer risk management in this specific patient population.

scholarly journals Randomized Trial of a Shared Decision-Making Intervention Consisting of Trade-Offs and Individualized Treatment Information for BRCA1/2 Mutation Carriers

2004 ◽  
Vol 22 (16) ◽  
pp. 3293-3301 ◽  
Author(s):  
M.S. van Roosmalen ◽  
P.F.M. Stalmeier ◽  
L.C.G. Verhoef ◽  
J.E.H.M. Hoekstra-Weebers ◽  
J.C. Oosterwijk ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Well Being ◽  
Individualized Treatment ◽  
Shared Decision ◽  
Treatment Information ◽  
Mutation Carriers ◽  
Trade Offs ◽  
Test Result

Purpose To evaluate a shared decision-making intervention (SDMI) for BRCA1/2 mutation carriers who have to make a choice between screening and prophylactic surgery for breasts and/or ovaries. Patients and Methods The SDMI consisted of two value assessment sessions, using the time trade-off method, followed by individualized treatment information based on (quality-adjusted) life expectancy. After the baseline assessment (2 weeks after a positive DNA test result), women were randomly assigned to the SDMI group (n = 44), receiving the SDMI 2 months after the test result, or to the control group (n = 44). The short- and long-term effects, 3 and 9 months after the test result, were assessed using questionnaires. Data were collected on well-being, treatment choice, and decision-related outcomes. Results In the short term, the SDMI had no effect. In the long term, with respect to well-being, patients in the SDMI group had less intrusive thoughts (P = .05) and better general health (P = .01) and tended to be less depressed (P = .07). With respect to decision-related outcomes for the breasts, the SDMI group held stronger preferences (P = .02) and agreed more strongly to having weighed the pros and cons (P = .01). No effect was found on treatment choice. In the long term, interaction effects between the SDMI and cancer history were found. The SDMI showed an overall beneficial effect for unaffected women, whereas affected women tended to experience detrimental effects. Conclusion We conclude that the SDMI improved decision making in unaffected BRCA1/2 mutation carriers. Supporting decision making in a systematic way using trade-offs is beneficial for these women.

Shared Decision-Making for Diabetes Prevention—One-Year Results from the Prediabetes Informed Decision and Education (PRIDE) Study

Diabetes ◽  
2018 ◽  
Vol 67 (Supplement 1) ◽  
pp. 168-OR ◽  
Author(s):  
TANNAZ MOIN ◽  
NORMAN TURK ◽  
CAROL MANGIONE ◽  
YELBA CASTELLON-LOPEZ ◽  
KIA SKRINE JEFFERS ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Diabetes Prevention ◽  
Informed Decision ◽  
Shared Decision ◽  
One Year ◽  
Pride Study

scholarly journals Patient and physician perspectives guiding intra-articular treatment choice in knee osteoarthritis: stakeholders are aligned on treatment priorities but have different assessments of treatment effect

2021 ◽  
pp. jisakos-2020-000578
Author(s):  
Vandana Menon ◽  
Caroline Huber ◽  
Alexandria Portelli ◽  
Marissa Baker-Wagner ◽  
Scott Kelley ◽  
...  
Keyword(s):  
Decision Making ◽  
Knee Osteoarthritis ◽  
Shared Decision Making ◽  
Symptom Relief ◽  
Activity Level ◽  
Shared Decision ◽  
Treatment Needs ◽  
Knee Oa ◽  
Patient Reported ◽  
Selection Factors

ObjectivesKnee osteoarthritis (OA) is a leading cause of health-related disability. In the absence of curative non-operative therapies, treatment goals are limited to symptom relief. Data are limited on how patients and physicians prioritise available treatment options. We assessed patients’ preferences for and physicians’ attitudes towards intra-articular treatments including corticosteroids (IACS), an extended-release corticosteroid (TA-ER) and hyaluronic acids (IAHA).MethodsWe conducted a prospective, IRB-exempt, double-blind survey of patients with and providers who treat knee OA. Respondents were required to have received or prescribed TA-ER in a non-trial setting. We evaluated patients’ OA history, impact of knee OA and treatment preferences, and physicians’ decision-making and prescribing experiences.ResultsOf the 97 patient participants, mean age was 56 years, 70.0% were women, 75.0% had bilateral knee OA and 46.4% were diagnosed over 5 years ago. Of the 50 physician participants, 34.0% were rheumatologists, 42.0% were orthopaedic surgeons and 60.0%, on average, treat 50+ patients with knee OA per month. Treatment selection factors considered ‘very important’ to patients and physicians included disease severity (88.7%, 82.0%), impact on quality of life (88.7%, 72.0%), disease extent (84.5%, 54.0%) and activity level (80.4%, 64.0%). A majority (93.8%) of patients indicated moderate to severe difficulty with their knees. Fewer patients (76.3%) reported shared decision making compared with physicians (92.0%). Half (50.5%) of the patients reported that they experienced months of pain relief with TA-ER, 27.7% with IACS and 18.8% with IAHA. Physician assessments were consistent but estimated a greater duration of treatment effects than that reported by patients across all therapies.ConclusionWhile knee OA has a tremendous impact on patients, there are significant unmet treatment needs. The increasing use of patient-reported outcomes will allow patients and physicians to track pain and functional status over time and across therapies, improving shared decision-making.

Describing the Spectrum of Patient Reported Outcomes after Radical Prostatectomy: Providing Information to Improve Patient Counseling and Shared Decision Making

2019 ◽  
Vol 201 (4) ◽  
pp. 751-758 ◽  
Author(s):  
Christopher Martin ◽  
Benjamin Haaland ◽  
Alexander E. Tward ◽  
Christopher Dechet ◽  
Will Lowrance ◽  
...  
Keyword(s):  
Decision Making ◽  
Radical Prostatectomy ◽  
Shared Decision Making ◽  
Patient Reported Outcomes ◽  
Shared Decision ◽  
Patient Counseling ◽  
Patient Reported ◽  
Improve Patient

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.

Co-Design of an Electronic Dashboard to Support Coproduction of Care in Pediatric Rheumatic Disease (Preprint)

2021 ◽  
Author(s):  
Alysha Taxter ◽  
Lisa Johnson ◽  
Doreen Tabussi ◽  
Yukiko Kimura ◽  
Brittany Donaldson ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Clinical Data ◽  
The United States ◽  
Shared Decision ◽  
Time Data ◽  
Vertical Orientation ◽  
Patient Reported ◽  
Data Elements ◽  
The Right

BACKGROUND Coproduction of care involves patients and families partnering with their clinicians and care teams, with the premise that each brings their own perspective, knowledge, and expertise, as well as their own values, goals, and preferences to the partnership. Dashboards can display meaningful patient and clinical data to assess how a patient is doing and inform shared decision making. Increasing communication between patients and care teams is particularly important for children with chronic conditions, such as juvenile idiopathic arthritis (JIA), which is the most common, chronic rheumatic condition of childhood, and is associated with increased pain, decreased function, and decreased quality of life. OBJECTIVE We aimed to design a dashboard prototype for use in coproducing care for JIA patients. We evaluated the context use and needs of end users, obtained consensus on the necessary dashboard data elements, and constructed display prototypes to inform meaningful discussions for coproduction. METHODS A human-centered design approach involving parents, patients, clinicians, and care team members was used to develop a dashboard to support coproduction of care in four diverse ambulatory pediatric rheumatology clinics across the United States. We engaged a multidisciplinary team (n=18) of patients/parents, clinicians, nurses, and staff during an in-person kick-off meeting, followed by bi-weekly meetings. We also leveraged advisory panels. Teams mapped workflows and patient journeys, created personas, and developed dashboard sketches. Final necessary dashboard components were determined using Delphi consensus voting. Low-tech dashboard testing was completed during clinic visits, and visual display prototypes were iterated using PDSA methodology. Patients and providers were surveyed about their experiences. RESULTS Teams achieved consensus on what data matters most at point-of-care to support JIA patients, families, and clinicians partnering together to make the best possible decisions for better health. Notable themes included: the right data, in the right place, at the right time; data in once for multiple purposes; patient and family self-management components; and opportunity for education and increased transparency. A final set of 11 dashboard data elements were identified which include patient-reported outcomes, clinical data, and medications. Important design considerations include incorporation of real-time data, clearly labeled graphs, and vertical orientation to facilitate review and discussion. Prototype paper testing with 36 patients/families yielded positive feedback about the dashboard’s usefulness during clinic discussions, helped to talk about what mattered most, and informed healthcare decision making. CONCLUSIONS Our study developed a dashboard prototype that displays patient-reported and clinical data over time, along with medications, that can be used during a clinic visit to support meaningful conversations and shared decision making between JIA patients/families and their clinicians and care teams. CLINICALTRIAL N/A

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

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