Patient Engagement In Decision-making Research Articles

Shared decision making with breast cancer patients – does it work? Results of the cluster-randomized, multicenter DBCG RT SDM trial

Background and purposeShared decision making (SDM) is a patient engaging process advocated especially for preference-sensitive decisions, such as adjuvant treatment after breast cancer. An increasing call for patient engagement in decision making highlights the need for a systematic SDM approach. The objective of this trial was to investigate whether the Decision Helper (DH), an in-consultation patient decision aid, increases patient engagement in decisions regarding adjuvant whole breast irradiation. Material and methodsOncologists at four radiotherapy units were randomized to practice SDM using the DH versus usual practice. Patient candidates for adjuvant whole breast irradiation after breast conserving surgery for node-negative breast cancer were eligible. The primary endpoint was patient-reported engagement in the decision process assessed with the Shared Decision Making Questionnaire (SDM-Q-9) (range 0–100, 4 points difference considered clinical relevant). Other endpoints included oncologist-reported patient engagement, decisional conflict, fear of cancer recurrence, and decision regret after 6 months. ResultsOf the 674 included patients, 635 (94.2%) completed the SDM-Q-9. Patients in the intervention group reported higher level of engagement (median 80; IQR 68.9 to 94.4) than the control group (71.1; IQR 55.6 to 82.2; p < 0.0001). Oncologist-reported patient engagement was higher in the invention group (93.3; IQR 82.2 to 100) compared to control group (73.3; IQR 60.0 to 84.4) (p < 0.0001). ConclusionPatient engagement in medical decision making was significantly improved with the use of an in-consultation patient decision aid compared to standard. The DH on adjuvant whole breast irradiation is now recommended as standard of care in the Danish guideline.

Through Clinicians Eyes: Use of an In-consultation Patient Decision Aid in Radiation Treatment for Early Breast Cancer. A Qualitative Study

IntroductionShared decision making (SDM) has become a crucial element on the political agenda and represents a vital aspect of modern healthcare. However, successful implementation of SDM highly depends on the attitude of clinicians towards SDM. The overall aim of our study was to explore the experience of oncologists and nurses with SDM using the Decision Helper, an in-consultation decision aid, at four Danish radiotherapy departments. MethodsSemi-structured interviews were conducted with 20 clinicians. The participants were selected using purposive sampling to include nurses and oncologists, male and female, with different levels of experience with SDM and clinical work. The analysis was a data-driven, iterative process with inductive coding of all interviews and meaning condensation. ResultsTwo main themes emerged: “Using the Decision Helper changes the consultation” and “Change of attitude among Danish oncologists.” Each of the two themes included four elaborative subthemes, which are reported with supporting citations in this paper. In brief, the use of SDM and the Decision Helper should ideally be adjusted to the individual patient and depends highly on the oncologist. The participants described ambitions towards “making the right decision for this patient at this time.” The healthcare system, however, has pitfalls that may hinder SDM, e.g., rigid interpretation of guideline-based recommendations. ConclusionUsing an in-consultation Decision Helper has the potential for individualized, structured patient engagement in decision making. There is a need for patient decision aids in clinical guidelines to ensure patient engagement in decision making.

Perspectives of Adolescents and Young Adults with Sickle Cell Disease and Clinicians on Improving Transition Readiness and a Videogame Intervention

Background Adolescents and young adults with sickle cell disease (AYA-SCD) have higher rates of mortality and the highest rates of healthcare utilization compared with older and younger SCD patients. The transition period between pediatric and adult care for AYA-SCD is well recognized as a critical window because it represents the intersection of normal adolescent development, change in healthcare access and increased clinical manifestations of disease. Interventions that support AYA-SCD during this time are crucial to improving outcomes. Hallmarks of transition readiness amongst AYA-SCD include self-efficacy (i.e., patients' ability to manage their disease), active participation in shared decision-making (SDM), and adequate disease specific knowledge. Although videogames have been shown to positively affect adolescents' behavior and health outcomes, there has been no study evaluating this technology for improving transition readiness in AYA-SCD. Our objective was to learn AYA-SCD patients' and clinicians' experiences with AYA-SCD managing their disease at home and making medical decisions as they transition from pediatric to adult care, including whether a videogame intervention can positively impact these skills. Methods We conducted individual, semi-structured interviews with purposively sampled patients (AYA-SCD ages 15 to 26 with any genotype of SCD) and clinicians who provide care or support to AYA-SCD (pediatric and adult hematology providers, pediatric and general emergency medicine physicians and nurses, child life specialists) at an urban, quaternary care hospital. Interviews elicited patients' and clinicians' experiences with AYA-SCD in the clinic, emergency department, and/or hospital, including the transition from pediatric to adult care, barriers and facilitators to successful home management, and their perspectives on SDM and a videogame intervention. To identify themes related to patients' and clinicians' experiences with AYA-SCD managing their disease at home and making medical decisions, we conducted an inductive analysis following the principles of grounded theory until data saturation was reached for both groups. For patients' and clinicians' perspectives on a videogame intervention, we used a deductive analysis. Three investigators independently coded all transcripts to identify themes, with discrepancies resolved by consensus. Results We interviewed 16 patients and 21 clinicians. Participants identified two main themes: 1) self-efficacy to manage their disease successfully as they transition from pediatric to adult care, and 2) the importance of patient engagement in making medical decisions (Table 1; representative quotations). Sub-themes were environmental, clinician, and patient factors that served as barriers and facilitators to achieving self-efficacy and patient engagement in decision-making. Facilitators including having social support, the importance of education about SCD and SDM before adolescence, clinicians having good communication, building trust, listening, and involving patients in medical decisions, and patient self-advocacy by voicing their needs and being empowered to actively participate in medical decisions. Barriers included lack of support and resources, adolescent behaviors/traits, co-dependency on a parent/caregiver, pediatric vs. adult culture, and stigma/implicit bias/provider judgement (Figure 1; conceptual model). Participants were supportive of a videogame intervention to improve self-efficacy and engagement in decision-making (Table 1), with the primary goal being education and insight into SCD, and the secondary goal being distraction during pain crises. Conclusions AYA-SCD patients and their clinicians identified self-efficacy in successful disease management and patient engagement in medical decision-making as two primary areas of importance in the transition from pediatric to adult care. Several barriers and facilitators to achieving self-efficacy and patient engagement are potential targets for interventions to improve these skills in AYA-SCD. Overall, patients and clinicians supported the concept of a videogame to support self-efficacy and patient engagement to improve transition readiness. Future studies will focus on the design, development, and implementation of a videogame intervention which centers the key themes identified in this study.

Impact of a web-based decision aid on socioeconomically disadvantaged patients’ engagement in decision making (Alliance A231701CD).

6520 Background: Increased patient engagement in decision making may mitigate disparities in breast cancer surgical care. Socioeconomically disadvantaged patients disproportionately experience barriers to engagement. Decision aids (DA) increase engagement by providing information, establishing role expectations during the consult, and increasing confidence in surgeon interactions. The objective was to test the effectiveness of a surgical web-based DA in increasing engagement among breast cancer patients in clinics that care for a high proportion of socioeconomically disadvantaged patients. Methods: A stepped wedge trial was conducted with 10 NCI Community Oncology Research Program clinics (Alliance for Clinical Trials in Oncology Research Base, 6/19-12/21). Clinics were randomized to time of transition from usual care (UC) to delivery of a web-based DA. Patients with stage 0-3 breast cancer eligible for surgery provided consent prior to a surgical consult. Socioeconomic disadvantage was assessed with the Area Deprivation Index measured at the zip+4 level and dichotomized. Patient engagement was measured by Patient’s Self-Efficacy in Patient-Physician Interactions (PEPPI-5, follow-up survey) and count of Active Patient Behaviors (Street protocol, audio recorded consult). Intervention effects were tested with linear mixed-effects models, accounting for surgeon and clinic-level clustering, time, and enrollment post-COVID. Heterogeneity of treatment effect by socioeconomic disadvantage was assessed with an interaction term. Results: 573 patients enrolled. 44% (136/309) reviewed the DA. No significant difference in engagement was observed comparing DA and UC for PEPPI-5 (-0.80 [95% CI -2.13, 0.54], p = 0.24) or Active Patient Behaviors (2.52 [CI -4.11, 9.15], p = 0.46). Enrollment post-COVID was associated with increased Active Patient Behaviors (9.59 [CI 1.76, 17.43], p = 0.02) but no change in PEPPI-5 (-1.31 [CI -2.88, 0.26], p = 0.10). No heterogeneity of treatment effect was observed. Conclusions: In this trial conducted in clinics that serve diverse populations, no significant relationship was observed between a web-based DA and patient engagement. Conducting this stepped wedge trial during the pandemic was challenging. Future analyses will explore the impact of COVID on outcomes and effect of the decision aid for patients who reviewed it. UG1 CA189823; AHRQ R01HS025194; https://acknowledgments.alliancefound.org . Clinical trial information: NCT03766009 . [Table: see text]

Shared decision making among hypertensive clients in public hospitals of West Shoa, central Ethiopia, 2020: Institution based cross sectional study

BackgroundPatient involvement in health care empowers patients to choose treatment and improves the quality of care and treatment outcomes. Despite its purpose, shared decision-making in clinical encounters was not given attention. So, this study aims to assess the level of shared decision-making among hypertensive patients. ObjectiveTo study the level of shared decision-making among hypertensive patients. MethodThe institution-based cross-sectional study method was used to collect data in three randomly selected public hospitals in the West Shoa Zone. A simple random sampling method was used for the selection of study participants. A pretested and structured shared decision-making questionnaire was used to measure patient engagement in decision-making. A descriptive analysis was done to determine the individual patient's level of involvement in shared decision-making. A 95% confidence interval (95% CI) was used to determine the level of shared decision-making. ResultsA total of 406 patients with hypertension participated in the study, yielding a response rate of 96.2%. Totally, 45.3% [CI (43.28–46.75)] of the participants have actively participated in shared decision-making. On the other hand, 53.6% [CI (49.42–56.7)] of participants reported they have been understood by their caregivers, and 52.9% [CI (46.2–58.9)] of the participants reported their caregiver helped them understand all the treatment options. On the other hand, only 121 patients, i.e., 34.7% [CI [28.86–37.8]] of the participants, have jointly chosen one type of treatment with their care provider. ConclusionThe level of involvement in shared decision-making among hypertensive patients is low in the study area compared to the expected standard of shared decision-making. So enhanced patient involvement in health care decisions is important.

Patient engagement in decision making and associated factors among outpatients with selected non-communicable chronic diseases in public hospitals of West Shoa, Ethiopia.

Despite the importance of patient engagement in health care decision-making in the care of patients with chronic diseases, there is limited information about it and the factors affecting it in Ethiopia and in the Public Hospitals of West Shoa in particular. Thus, this study was designed to assess the engagement of patients with selected chronic non-communicable diseases in health care decision-making and associated factors in public hospitals of West Shoa Zone, Oromia, Ethiopia. We used an institution -based cross-sectional study design. We used systematic sampling for the selection of study participants from June 7-July 26, 2020. Standardized, pretested, and structured Patient Activation Measure was used to measure patient engagement in healthcare decision-making. We did descriptive analysis to determine the magnitude of patient engagement in health care decision-making. Multivariate logistic regression analysis was used to determine factors associated with patients' engagement in the health care decision-making process. Adjusted odds ratio with a 95% confidence interval was calculated to measure the strength of association. We declared statistical significance at p<0.05. we presented the results in tables and graphs. 406 patients with chronic diseases took part in the study, yielding a response rate of 96.2%. Less than a fifth [19.5% (95% CI: 15.5, 23.6)] of participants in the study area had a high engagement in their health care decision-making. Educational level (college or above) [AOR = 5.2, 95% CI (1.76-15.46)], duration of diagnosis >5 years [AOR = 1.8, 95% CI (1.03-3.2)], health literacy [AOR = 1.15, 95% CI (1.06-1.24)], autonomy preference in decision making [AOR = 1.35, 95% CI (1.03-1.96)] were factors significantly associated with participants' engagement in health care decision making among patients with chronic diseases. A high number of respondents had a low engagement in their health care decision-making. Preference for autonomy in decision making, educational level, health literacy, duration of diagnosis with the disease were factors associated with patient engagement in health care decision making among patients with chronic diseases in the study area. Thus, patients should be empowered to be involved in decision making to increase their engagement in the care.

Individual Differences in the Patient Experience of Relapsing Multiple Sclerosis (RMS): A Multi-Country Qualitative Exploration of Drivers of Treatment Preferences Among People Living with RMS.

The aim of this study was to explore the experiences, values and preferences of people living with relapsing multiple sclerosis (PLwRMS) focusing on their treatments and what drives their treatment preferences. In-depth, semi-structured, qualitative telephone interviews were conducted using a purposive sampling approach with 72 PLwRMS and 12 health care professionals (HCPs, MS specialist neurologists and nurses) from the United Kingdom, United States, Australia and Canada. Concept elicitation questioning was used to elicit PLwRMS' attitudes, beliefs and preferences towards features of disease-modifying treatments. Interviews with HCPs were conducted to inform on HCPs' experiences of treating PLwRMS. Responses were audio recorded and transcribed verbatim and then subjected to thematic analysis. Participants discussed numerous concepts that were important to them when making treatment decisions. Levels of importance participants placed on each concept, as well as reasons underpinning importance, varied substantially. The concepts with the greatest variability in terms of how much PLwRMS found them to be important in their decision-making process were mode of administration, speed of treatment effect, impact on reproduction and parenthood, impact on work and social life, patient engagement in decision making, and cost of treatment to the participant. Findings also demonstrated high variability in what participants described as their ideal treatment and the most important features a treatment should have. HCP findings provided clinical context for the treatment decision-making process and supported patient findings. Building upon previous stated preference research, this study highlighted the importance of qualitative research in understanding what drives patient preferences. Characterized by the heterogeneity of the RMS patient experience, findings indicate the nature of treatment decisions in RMS to be highly individualized, and the subjective relative importance placed on different treatment factors by PLwRMS to vary. Such qualitative patient preference evidence could offer valuable and supplementary insights, alongside quantitative data, to inform decision making related to RMS treatment.

Exploring the Need for Mobile Application in Stroke Management by Informal Caregivers: A Qualitative Study.

Background: Mobile health (mHealth) has been considered as a prominent concept in digital health and is widely used and easily accessible. Periodic follow-up visits, previously planned procedures, and rehabilitation services for stroke survivors have been cut down during the recent COVID-19 pandemic. Therefore, in this qualitative study we aimed to explore the need for a mobile application in stroke management by informal caregivers. Methods: A phenomenological qualitative study was conducted from November 2020 to June 2021. Thirteen respondents were recruited from two public rehabilitation centers in Kota Bharu, Kelantan, Malaysia. In-depth interviews were conducted. A comprehensive representation of perspectives from the respondents was achieved through purposive sampling. The interviews were conducted in the Kelantanese dialect, recorded, transcribed, and analyzed by using thematic analysis. Results: Thirteen participants were involved in the interviews. All of them agreed with the need for a mobile application in stroke management. They believed the future stroke application will help them to seek information, continuous stroke home care, and help in the welfare of caregivers and stroke patients. Conclusions: The current study revealed two themes with respective subthemes that were identified, namely, self-seeking for information and reasons for using a stroke mobile application in the future. This application helps in reducing healthcare costs, enhancing the rehabilitation process, facilitating patient engagement in decision making, and the continuous monitoring of patient health.

Impact of Home Blood Pressure Data Visualization on Hypertension Medical Decision Making in Primary Care.

Evidence shows the value of home blood pressure (BP) monitoring in hypertension management. Questions exist about how to effectively incorporate these readings into BP follow-up visits. We developed and implemented a tool that combines clinical and home BP readings into an electronic health record (EHR)-integrated visualization tool. We examined how this tool was used during primary care visits and its effect on physician-patient communication and decision making about hypertension management, comparing it with home BP readings on paper. We video recorded the hypertension follow-up visits of 73 patients with 15 primary care physicians between July 2018 and April 2019. During visits, physicians reviewed home BP readings with patients, either directly from paper or as entered into the EHR visualization tool. We used conversation analysis to analyze the recordings. Home BP readings were viewed on paper for 26 patients and in the visualization tool for 47 patients. Access to home BP readings during hypertension management visits, regardless of viewing mode, positioned the physician and patient to assess BP management and make decisions about treatment modification, if needed. Length of BP discussion with the visualization tool was similar to or shorter than that with paper. Advantages of the visualization tool included ease of use, and enhanced and faster sense making and decision making. Successful use of the tool required patients' ability to obtain their BP readings and enter them into the EHR via a portal, and an examination room configuration that allowed for screen sharing. Reviewing home BP readings using a visualization tool is feasible and enhances sense making and patient engagement in decision making. Practices and their patients need appropriate infrastructure to realize these benefits.

Patient Perspectives on Improving Patient-Provider Relationships and Provider Communication During Opioid Tapering

BackgroundEfforts to reduce opioid overdose fatalities have resulted in tapering (i.e., reducing or discontinuing) opioid prescriptions despite a limited understanding of patients’ experiences.ObjectiveTo explore patients’ perspectives on opioid taper experiences to ultimately improve taper processes and outcomes.DesignQualitative study.ParticipantsPatients on long-term opioid therapy for chronic pain who had undergone a reduction of opioid daily prescribed dosage of ≥50% in the past 2 years in two distinct medical systems and regions.ApproachFrom 2019 to 2020, we conducted semi-structured interviews that were audio-recorded, transcribed, systematically coded, and analyzed to summarize the content and identify key themes regarding taper experiences overall and with particular attention to patient-provider relationships and provider communication during tapers.Key ResultsParticipants (n=41) had lived with chronic pain for an average of 17.4 years (range, 3–36 years) and described generally adverse experiences with opioid tapers, the initiation of which was not always adequately justified or explained to them. Consequences of tapers ranged from minor to substantial and included withdrawal, mobility issues, emotional distress, exacerbated mental health symptoms, and feelings of social stigmatization for which adequate supports were typically unavailable. Narratives highlighted the consequential role of patient-provider relationships throughout taper experiences, with most participants describing significant interpersonal challenges including poor provider communication and limited patient engagement in decision making. A few participants identified qualities of providers, relationships, and communication that fostered more positive taper experiences and outcomes.ConclusionsFrom patients’ perspectives, opioid tapers can produce significant physical, emotional, and social consequences, sometimes reducing trust and engagement in healthcare. Patient-provider relationships and communication influence patients’ perceptions of the quality and outcomes of opioid tapers. To improve patients’ experiences of opioid tapers, tapering plans should be based on individualized risk-benefit assessments and involve patient-centered approaches and improved provider communication.

Abstract 202: A Pilot Study to Evaluate the Impact of Decision Aid Timing on Mandatory Shared Decision Making for Defibrillator Implantation

Background: In 2018, CMS required shared decision-making (SDM) with a decision (DA) prior to implantation of a primary prevention cardioverter defibrillator (ICD). Little is known about how DAs should be incorporated, but the implementation strategy may affect the process. Providing DAs prior to the SDM visit may facilitate informed discussion. However, this requires identifying ICD candidates ahead of time which may be logistically challenging. Providing the DA during the office visit requires less administrative effort but may reduce the impact of the DA. Objective: To evaluate the impact of DA timing on SDM outcomes. Methods: Patients referred for ICD implantation were block randomized across 3 clinics to receive the DA 30 minutes prior to, or at the end of the SDM visit. Patients were surveyed on implant day in several SDM domains including knowledge about ICDs, decisional conflict, values-choice concordance and the extent to which patients felt engaged in the decision-making process. Patients who chose not to have an ICD implanted after the SDM visit were surveyed by mail. Implanting physicians were also surveyed to assess perceptions about the impact of the DA. Results: Of 42 randomized patients, 24 completed the survey with 9 who received the DA before and 15 after the SDM visit. Three chose not to have an ICD implanted: 1 received the DA before and 2 after the visit. Though overall knowledge about ICDs was similar between groups (Table), every patient who received the DA before the encounter understood the primary purpose of the ICD, compared with 10/15 who received the DA after the visit. Receiving the DA earlier showed a numerically higher rate of understanding the risk of inappropriate ICD shocks. No significant differences were observed in decisional conflict, values-choice concordance, or reported patient engagement in decision-making. Conclusion: Patients who received a DA prior to the visit had numerically, but not significantly, higher rates of understanding the purpose of the ICD and risk of inappropriate shocks. These pilot data suggest that efforts to provide DAs ahead of time may strengthen SDM interaction and that an implementation strategy is critical to study. Important knowledge gaps remain in both groups, suggesting opportunities to improve SDM for ICDs.

Engaging Multidisciplinary Stakeholders to Drive Shared Decision-Making in Oncology.

Although recognized as best practice, regular integration of shared decision-making (SDM) approaches between patients and oncologists remains an elusive goal. It is clear that usable, feasible, and practical tools are needed to drive increased SDM in oncology. To address this goal, we convened a multidisciplinary collaborative inclusive of experts across the health-care delivery ecosystem to identify key principles in designing and testing processes to promote SDM in routine oncology practice. In this commentary, we describe 3 best practices for addressing challenges associated with implementing SDM that emerged from a multidisciplinary collaborative: (1) engagement of diverse stakeholders who have interest in SDM, (2) development and validation of an evidence-based SDM tool grounded within an established conceptual framework, and (3) development of the necessary roadmap and consideration of the infrastructure needed for engendering patient engagement in decision-making. We believe these 3 principles are critical to the success of creating SDM tools to be utilized both within and outside of clinical practice. We are optimistic that shared use across settings will support adoption of this tool and overcome barriers to implementing SDM within busy clinical workflows. Ultimately, we hope that this work will offer new perspectives on what is important to patients and provide an important impetus for leveraging patient preferences and values in decision-making.

Coordinating care for older adults in primary care settings: understanding the current context

BackgroundIt is well known that older adults are high users of the health care system. Older adults with chronic conditions receive care from multiple providers, across multiple settings, and this care is often unorganized and confusing. In 2005, Ontario established a model of inter-professional primary care (family health teams) with the aim of providing enhanced interdisciplinary primary care to patients. Primary care requires an in-depth understanding of the operations of primary care teams and their relationships with other community services. The aim of this study was to develop a deeper understanding of the current operations of two family health teams in Ontario, including their current processes for referrals, information sharing, and engagement of patients in decision-making.MethodsFocus group and individual semi-structured interviews with health care providers were conducted. Purposeful sampling was used to ensure information was obtained from different professional perspectives. Interviews were audio-recorded and transcribed verbatim. Using NVivo 10, data were analyzed using line by line thematic analysis techniques. A cluster technique was then applied to group similar codes into themes.ResultsThree focus group interviews (involving 4–6 health care providers/focus group) and six individual interviews were conducted with health care providers from two primary care teams and surrounding community care organizations. Six key themes were identified: 1) challenges engaging older adults in decisions about their care; 2) who is responsible for coordinating the care? 3) fragmented information sharing between health care providers; 4) lack of standardized referral processes and follow-up; 5) identifying services in the community for older adults; and 6) caring for older adults in rural communities.ConclusionsThe results of this study provide an in-depth understanding of the current context in which the primary care teams are currently operating. Improved primary care will require stronger processes of coordination, greater knowledge of and connections with other community services, and enhanced patient engagement processes. This information provides a helpful basis for implementing interventions in primary care.

Opportunities to Improve Patient Engagement in Dialysis Decisions for Older Adults with Life-Limiting Kidney Disease (TH370B)

•Identify opportunities to improve patient engagement in decision making during visits with specialist providers.•Identify how the Best Case/Worst Case tool can help specialists improve patient engagement in conversations regarding life-sustaining treatments.•List key components of physician-patient conversations that promote patient engagement. Older adults who initiate dialysis often passively accept treatment without making an active choice to commit to life-supporting therapy. Interventional strategies that target the dialysis decision-making conversation between patients and their nephrologists may promote earlier access to palliative care, leading to better outcomes. To characterize communication about dialysis and evaluate the proof of concept of an intervention to change nephrologist communication. Pre/post-intervention study design. We recorded 16 outpatient conversations between nephrologists and patients age 70 and older with an eGFR≤20 mL/min/1.73 m2, not on dialysis. After recording the first 12 conversations, we trained seven nephrologists to use the Best Case/Worst Case (BC/WC) communication tool to describe treatment options and potential outcomes within the context of the patient's overall health. We used OPTION 5 and qualitative analysis to measure and characterize patient engagement in decision making before and after BC/WC training. Before training, OPTION 5 scores were low (median 20 out of 100 (IQR 15-35)), suggesting limited patient engagement in decision making. Nephrologists typically discussed lab values and considered when and how patients might receive dialysis. Few acknowledged the option of “no dialysis.” After training, nephrologists used BC/WC with fidelity and OPTION 5 scores increased (median 65 (IQR 50-76)). Using the BC/WC tool, nephrologists presented a choice between dialysis and supportive care without dialysis, described how dialysis and other health events might be experienced, provided prognostic information, and used phrases to elicit patients' goals. Currently nephrologists discuss the mode and timing of dialysis without disclosing prognosis or presenting dialysis as a choice. This leaves limited opportunity for patients to understand the role of supportive care or palliative care concurrent with dialysis. Interventions to support patient engagement in treatment decisions may improve access to palliative care.

Navigating high-risk surgery: protocol for a multisite, stepped wedge, cluster-randomised trial of a question prompt list intervention to empower older adults to ask questions that inform treatment decisions

IntroductionOlder patients frequently undergo operations that carry high risk for postoperative complications and death. Poor preoperative communication between patients and surgeons can lead to uninformed decisions and result in unexpected...

Treatment experiences of Latinas after diagnosis of breast cancer.

The authors examined racial/ethnic differences in patient perspectives regarding their breast cancer treatment experiences. A weighted random sample of women newly diagnosed with breast cancer between 2013 and 2015 in Los Angeles County and Georgia were sent surveys 2 months after undergoing surgery (5080 women; 70% response rate). The analytic sample was limited to patients residing in Los Angeles County (2397 women). The pattern of visits with different specialists before surgery was found to be similar across racial/ethnic groups. Low acculturated Latinas (Latinas-LA) were less likely to report high clinician communication quality for both surgeons and medical oncologists (<69% vs >72% for all other groups; P<.05). The percentage of patients who reported high satisfaction regarding how physicians worked together was similar across racial/ethnic groups. Latinas-LA were more likely to have a low autonomy decision style (48% vs 24%-50% for all other groups; P<.001) and were more likely to report receiving too much information versus other ethnic groups (20% vs <16% for other groups; P<.001). Patients who reported a low autonomy decision style were more likely to rate the amount of information they received for the surgery decision as "too much" (16% vs 9%; P<.001). There appears to be moderate disparity in breast cancer treatment communication and decision-making experiences reported by Latinas-LA versus other groups. The approach to treatment decision making by Latinas-LA represents an important challenge to health care providers. Initiatives are needed to improve patient engagement in decision making and increase clinician awareness of these challenges in this patient population. Cancer 2017;123:3022-30. © 2017 American Cancer Society.

Not another Complaint!

Introduction: Surgical patient complaints can be used to identify deficiencies within healthcare provision. The Francis report highlighted that at Mid-Staffordshire multiple complaints had demonstrated the problems at the trust. The number of complaints in the NHS is still rising yearly. Review of patient complaints by clinicians could highlight areas of clinical care requiring improvement. Methods: A University hospitals surgical patient complaints reported to Patient Advice and Liaison Service from 2011-2015 were reviewed. Complaints were classified into: Attitude of Staff, General Nursing, Clinical Treatment, Admission transfer and discharge arrangements, Inpatient appointment delay/cancellation, Consent to Treatment, Communication, Aids and appliances, Other, Outpatient appointment delay/cancellation, Hotel Services and Records. Results: The number of patient complaints within the NHS is increasing. 869 complaints were received. It is often reported that communication is the basis of most complaints but “All aspects of Clinical Treatment” was the most common complaint category, constituting of >50% of complaints. The other common categories were attitude of staff, admission Delay/Discharge and appointments Inpatients/Outpatient. Within clinical treatment the most frequent issues were suitability of treatment followed by delay in providing results. Conclusion: It is often reported that communication is the basis of most complaints however, in this study the commonest complaint related to the suitability of the treatment. This may indicate an underlying problem with communication regarding management decisions, specifically explanation and consent. Clear communication and improving patient engagement in decision could yield dramatic decreases in complaints

Measuring shared decision making: a review of constructs, measures, and opportunities for cardiovascular care.

In the past few decades, patient-centeredness has gained in importance,1,2 and policies to promote patient-centered care have been increasing.3 Several different models of patient-centered care have been described. Although these models vary on their specific definitions and dimensions, they all emphasize the importance of facilitating the engagement of patients in their own healthcare decisions.1,4,5 In some cases, facilitating patient engagement in decisions focuses on ensuring patients receive proven, effective care and do not receive proven, ineffective care. In cardiology, these situations often correspond to American College of Cardiology/American Heart Association class I or III recommendations with strong evidence, and the quality of decisions can be measured by the percentage of eligible patients who receive care that is consistent with the guidelines. Several quality measures endorsed by the National Quality Forum for cardiovascular care fall into these situations, such as the percentage of patients who receive β-blockers at discharge from cardiac surgery or persistence of β-blocker usage after a heart attack except for those patients at low risk. However, even in situations with class I recommendations, some questions arise in implementing these recommendations into clinical care. For example, the high nonadherence rates for β-blocker therapy (or statin therapy) suggest that patients think differently about the tradeoffs between the potentially modest survival gain and the side effects of the therapy.6,7 In these cases, is it acceptable for patients to decline therapy, and if so, what if any documentation might we need to be confident that the decision was informed and high quality? As Brindis and Walsh8 highlight in their presidential address, decisions, such as the use of statins for primary prevention, treatment of atrial fibrillation, valve replacement (eg, the use of tissue or mechanical valves), and use of implantable …

Circulation: Cardiovascular Quality and Outcomes Editors’ Picks

<i>Circulation: Cardiovascular Quality and Outcomes</i> Editors’ Picks

Racial differences in health care utilization in Medicare beneficiaries with metastatic prostate cancer.

31 Background: Racial differences in the prostate cancer (PC) incidence and outcomes have been previously reported. Patterns of PC care have been studied previously in commercially insured populations. This study evaluated racial differences in health care (HC) utilization in Medicare Beneficiaries with metastatic prostate cancer (MBMPC). Methods: MBMPCs were identified using Medicare 5% Standard Analytic Files (2002-2009) which included the Medicare fee-for-service population covered by Part A and Part B. HC costs were standardized to 2010 dollars. Patterns of care were analyzed and compared by race [White (W), Black (B), Other (O)]. Results: We identified 5,857 MBMPCs (W: 2,998, B: 748, O: 164) with a mean (SD) age 79.3 (9.4) years. Minimal differences in care were present between W and O. Compared to W, B received less outpatient care. Mean physician office visits/year: 21% fewer for all specialties (B: 10.4, W: 12.6, p&lt;0.001), 20% fewer for primary care (B: 3.5, W: 4.2, p&lt;0.001), 27% fewer for oncology (B: 2.2, W: 2.8, p&lt;0.001), and no difference in urology (B: 1.9, W: 1.9, p=0.638). There was a 50% higher number of mean hospitalizations/yr in the B group (B: 1.2, W: 0.8, p&lt;0.001). There was no difference in surgical intervention by race, however B were generally less likely to receive injection hormone therapy (HT), radiation therapy (RT), or chemotherapy (CT) prior to, concomitant to, or subsequent to the first metastatic diagnosis. Mean annual HC costs were 23% higher for B (B: $29,141, W: $23,735, p&lt;0.001), with institutional care comprising 62% of total costs for B and 52% for W. Conclusions: In MBMPC, significant differences in HC between B and W were observed. B were less likely to experience physician office visits and to receive HT, RT, or CT, and more likely to be hospitalized. Further study is warranted to identify contributing factors and potential ways to reduce these observed HC disparities including patient education and patient engagement in decision-making.