Support Shared Decision Making Research Articles

Development and user-testing of a digital patient decision aid to facilitate shared decision-making for people with stable angina

BackgroundResearch shows that people with stable angina need decision support when considering elective treatments. Initial treatment is with medicines but patients may gain further benefit with invasive percutaneous coronary intervention (PCI). Choosing between these treatments can be challenging for patients because both confer similar benefits but have different risks. Patient decision aids (PtDAs) are evidence-based interventions that support shared decision-making (SDM) when making healthcare decisions. This study aimed to develop and user-test a digital patient decision aid (CONNECT) to facilitate SDM for people with stable angina considering invasive treatment with elective PCI.MethodsA multi-phase study was conducted to develop and test CONNECT (COroNary aNgioplasty dECision Tool) using approaches recommended by the International Patient Decision Aid Standards Collaboration: (i) Steering Group assembled, (ii) review of clinical guidance, (iii) co-design workshops with patients and cardiology health professionals, (iv) first prototype developed and ‘alpha’ tested (semi-structured cognitive interviews and 12-item acceptability questionnaire) with patients, cardiologists and cardiac nurses, recruited from two hospitals in Northern England, and (v) final PtDA refined following iterative user-feedback. Quantitative data were analysed descriptively and qualitative data from the interviews analysed using deductive content analysis.ResultsCONNECT was developed and user-tested with 34 patients and 29 cardiology health professionals. Findings showed that CONNECT was generally acceptable, usable, comprehensible, and desirable. Participants suggested that CONNECT had the potential to improve care quality by personalising consultations and facilitating SDM and informed consent. Patient safety may be improved as CONNECT includes questions about symptom burden which can identify asymptomatic patients unlikely to benefit from PCI, as well as those who may need to be fast tracked because of worsening symptoms.ConclusionsCONNECT is the first digital PtDA for people with stable angina considering elective PCI, developed in the UK using recommended processes and fulfilling international quality criteria. CONNECT shows promise as an approach to facilitate SDM and should be evaluated in a clinical trial. Further work is required to standardise the provision of probabilistic risk information for people considering elective PCI and to understand how CONNECT can be accessible to underserved communities.

MO928: Patients’ and Healthcare Professionals’ Perspectives on Nephrogeriatric Assessment as Shared Decision Making Tool for Older Patients With Kidney Failure: A Qualitative Study

Abstract BACKGROUND AND AIMS Dialysis might not benefit all older patients with kidney failure, particularly those with multi-morbid conditions and frailty. Awareness of the presence of geriatric impairments has the potential to improve outcomes by tailoring treatment plans and decisions for individual patients. Geriatric assessment has been recommended in guidelines to support shared decision making (SDM) in older patients with kidney failure. We aimed to describe the perspectives of patients and healthcare professionals on the Nephro-Geriatric Assessment (NGA) as a SDM tool for treatment choice in older patients approaching kidney failure (eGFR)<20 mL/min/1.73 m2). METHOD Patients (N = 18) with kidney failure, caregivers (N = 4) and professionals (N = 25) were purposively sampled from three university medical centre initiatives and seven regional hospitals from different provinces in the Netherlands. Six semi-structured focus groups were held to discuss participants’ experiences with and perspectives on NGA as an aid to SDM in their choices to start or forego dialysis. Transcripts were analysed inductively using thematic analysis. RESULTS Professionals reported that NGA, performed prior to SDM about kidney replacement therapy (KRT), creates awareness of patients’ possibilities but also of their limitations. Somatic frailty is unearthed alongside in-depth knowledge about patients’ social system and psychological wellbeing––information they consider vital for good quality SDM relative to KRT. Professionals reported NGA as being a valuable tool to initiate discussions on treatment decisions and patient goals, and improve awareness to (re)consider different treatment options. Although patients and caregivers had positive attitudes towards NGA, they were mostly unaware of the purpose and role that NGA could play in SDM about KRT. Several interconnecting themes, which could facilitate or hinder SDM in kidney failure were identified and grouped under three main themes: (1) patient psycho-social situation: social support system and who influences decisions (e.g. choosing to dialyze due to family pressure), trusting patient–professional relationships, patient emotions (e.g. anxiety about being a burden to family and society), quality of life and life goals; (2) on modality choice: medical history and frailty, patient character and attitudes (e.g. an optimistic or pessimistic view of life), health-related information and education, continual assessment of situation; (3) organization of health care: multidisciplinary approach, consultation with geriatrician, early referral to kidney failure care and consultation time. CONCLUSION Professionals confirmed the benefits of NGA as a tool to identify geriatric impairments in older patients approaching kidney failure and how integration of its outcomes can facilitate a more holistic approach to inform choices about KRT based on patient values, expectations and goals. Recognition of supporting factors and resolution of impeding factors to SDM about KRT can be beneficial for good SDM. Our study underscores the importance of clear patient–professional communication. Conducting NGA provides anchors to include information on geriatric impairments, which is potentially valuable for the prevention of decisional regret.

Feasibility of a Digital Patient-Provider Communication Intervention to Support Shared Decision-Making in Chronic Health Care, InvolveMe: Pilot Study.

BackgroundEnhanced communication with health care providers (HCPs) can improve symptom management and health-related quality of life (HRQoL) for patients with chronic health conditions. Access to appropriate communication venues is needed to improve communication, however. As such, digital communication interventions mediated by patient portals carry the potential to support patient-provider communication and interaction and through this, also facilitate shared decision-making (SDM). The InvolveMe intervention was designed to provide patients with the opportunity to communicate symptoms and informational needs prior to consultation via digital assessment, including prioritizing what is most important to discuss with their HCPs, as well as to interact with HCPs through secure messages between outpatient visits.ObjectiveThe aim of this study was to assess the feasibility of the InvolveMe intervention by investigating acceptability, demand (ie, system use), and limited efficacy.MethodsThe study was designed as a single-arm, pre-post feasibility study combining quantitative and qualitative methods for data collection. Patients from an endocrine outpatient clinic were invited to use the InvolveMe intervention for 3 months, and HCPs administering InvolveMe were invited to participate in a focus group. Guided by descriptions of how to design feasibility studies by Bowen et al, feasibility was tested by exploring (1) acceptability, using data collected during recruitment from patient participants and nonparticipants (ie, declined to participate or did not meet study requirements), HCP experiences with recruitment, and the System Usability Scale (SUS); (2) demand via exploration of system use through extraction of system log data and HCP experiences with system use; and (3) limited efficacy testing, via exploration of potential effects from the Short-Form Health Survey (RAND 36), Hospital Anxiety and Depression Scale, and Health Literacy Questionnaire.ResultsPatient participants (N=23) were a median 54 (range 26-78) years old and primarily male (14/23, 61%). Nonparticipants (N=16) were a median 73 (range 55-80) years old and primarily male (12/16, 75%). The average SUS score was 72.2, indicating good system usability. Assessments were completed by 8 participants from home prior to outpatient visits. The assessments entailed various bodily symptoms and needs for information. Participants sent 17 secure messages related to patient administrative matters, symptoms, and challenges. Focus group participants (N=4) were all female and registered nurses. Data were analyzed in 2 predefined themes: Acceptability and Demand. Acceptability included the subthemes intervention attractiveness and intervention suitability. Demand included the subthemes elements of SDM and intervention challenges and opportunities. All patient participants completed outcome measures at baseline, and 19 (19/23, 83%) completed outcome measures at 3 months. These preliminary efficacy findings were mixed and inconclusive.ConclusionsThe study design provided findings from both patient and HCP perspectives and supported feasibility of the InvolveMe intervention. The investigation of acceptability and demand supported the potential for remote SDM mediated by patient portals using assessments and secure messages.Trial RegistrationClinicalTrials.gov NCT NCT04218721; https://www.clinicaltrials.gov/ct2/show/NCT04218721

Web-Based Training for Nurses on Using a Decision Aid to Support Shared Decision-making About Prenatal Screening: Parallel Controlled Trial.

BackgroundNurses play an important role in supporting pregnant women making decisions about prenatal screening for Down syndrome. We developed a web-based shared decision-making (SDM) training program for health professionals focusing on Down syndrome screening decisions.ObjectiveIn this study, we aim to assess the impact of an SDM training program on nurses’ intention to use a decision aid with pregnant women deciding on prenatal screening for Down syndrome.MethodsIn this 2-arm, parallel controlled trial, French-speaking nurses working with pregnant women in the province of Quebec were recruited by a private survey firm. They were allocated by convenience either to the intervention group (web-based SDM course that included prenatal screening) or to the control group (web-based course focusing on prenatal screening alone, with no SDM content). The primary outcome was the intention to use a decision aid. Secondary outcomes were psychosocial variables of intention, knowledge, satisfaction, acceptability, perceived usefulness, and reaction to the pedagogical approach. All outcomes were self-assessed through web-based questionnaires, including the space for written comments. We used 2-tailed Student t test and Fisher exact test to compare continuous and categorical variables between groups, respectively.ResultsOf the 57 participants assessed for eligibility, 40 (70%) were allocated to the intervention (n=20) or control group (n=20) and 36 (n=18 in each) completed the courses. The mean age of the participants was 41 (SD 9) years. Most were women (39/40, 98%), White (38/40, 95%), clinical nurses (28/40, 70%), and had completed at least a bachelor’s degree (30/40, 75%). After the intervention, the mean score of intention was 6.3 (SD 0.8; 95% CI 5.9-6.7) for the intervention group and 6.0 (SD 1.2; 95% CI 5.42-6.64) for the control group (scale 1-7). The differences in intention and other psychosocial variable scores between the groups were not statistically significant. Knowledge scores for SDM were significantly higher in the intervention group (79%, 95% CI 70-89 vs 64%, 95% CI 57-71; P=.009). The intervention was significantly more acceptable in the intervention group (4.6, 95% CI 4.4-4.8 vs 4.3, 95% CI 4.1-4.5; P=.02), and reaction to the pedagogical approach was also significantly more positive in the intervention group (4.7, 95% CI 4.5-4.8 vs 4.4, 95% CI 4.2-4.5; P=.02). There was no significant difference in overall satisfaction (or in perceived usefulness). Furthermore, 17 participants (9 in the intervention group and 8 in the control group) provided written comments on the intervention.ConclusionsThis study focuses on web-based nursing education and its potential to support pregnant women’s decision-making needs. It shows that nurses’ intention to use a decision aid to enhance SDM in prenatal care is high, with or without training, but that their knowledge about SDM can be improved with web-based training.International Registered Report Identifier (IRRID)RR2-10.2196/17878

A Shared Decision-making Tool for Drug Interactions Between Warfarin and Nonsteroidal Anti-inflammatory Drugs: Design and Usability Study.

BackgroundExposure to life-threatening drug-drug interactions (DDIs) occurs despite the widespread use of clinical decision support. The DDI between warfarin and nonsteroidal anti-inflammatory drugs is common and potentially life-threatening. Patients can play a substantial role in preventing harm from DDIs; however, the current model for DDI decision-making is clinician centric.ObjectiveThis study aims to design and study the usability of DDInteract, a tool to support shared decision-making (SDM) between a patient and provider for the DDI between warfarin and nonsteroidal anti-inflammatory drugs.MethodsWe used an SDM framework and user-centered design methods to guide the design and usability of DDInteract—an SDM electronic health record app to prevent harm from clinically significant DDIs. The design involved iterative prototypes, qualitative feedback from stakeholders, and a heuristic evaluation. The usability evaluation included patients and clinicians. Patients participated in a simulated SDM discussion using clinical vignettes. Clinicians were asked to complete eight tasks using DDInteract and to assess the tool using a survey adapted from the System Usability Scale.ResultsThe designed DDInteract prototype includes the following features: a patient-specific risk profile, dynamic risk icon array, patient education section, and treatment decision tree. A total of 4 patients and 11 clinicians participated in the usability study. After an SDM session where patients and clinicians review the tool concurrently, patients generally favored pain treatments with less risk of gastrointestinal bleeding. Clinicians successfully completed the tasks with a mean of 144 (SD 74) seconds and rated the usability of DDInteract as 4.32 (SD 0.52) of 5.ConclusionsThis study expands the use of SDM to DDIs. The next steps are to determine if DDInteract can improve shared decision-making quality and to implement it across health systems using interoperable technology.

A Policy Framework to Support Shared Decision-Making through the Use of Person-Generated Health Data

Abstract Background Individuals increasingly want to access, contribute to, and share their personal health information to improve outcomes, such as through shared decision-making (SDM) with their care teams. Health systems' growing capacity to use person-generated health data (PGHD) expands the opportunities for SDM. However, SDM not only lacks organizational and information infrastructure support but also is actively undermined, despite public interest in it. Objectives This work sought to identify challenges to individual–clinician SDM and policy changes needed to mitigate barriers to SDM. Methods Two multi-stakeholder group of consumers, patients, caregivers; health services researchers; and experts in health policy, informatics, social media, and user experience used a consensus process based on Bardach's policy analysis framework to identify barriers to SDM and develop recommendations to reduce these barriers. Results Technical, legal, organizational, cultural, and logistical obstacles make data sharing difficult, thereby undermining use of PGHD and realization of SDM. Stronger privacy, security, and ethical protections, including informed consent; promoting better consumer access to their data; and easier donation of personal data for research are the most crucial policy changes needed to facilitate an environment that supports SDM. Conclusion Data protection policy lags far behind the technical capacity for third parties to share and reuse electronic information without appropriate permissions, while individuals' right to access their own health information is often restricted unnecessarily, poorly understood, and poorly communicated. Sharing of personal information in a private, secure environment in which data are shared only with individuals' knowledge and consent can be achieved through policy changes.

Development of an electronic conversation aid to support shared decision making for children with acute otitis media.

ObjectiveThe overuse of antibiotics for acute otitis media (AOM) in children is a healthcare quality issue in part arising from conflicting parent and physician understanding of the risks and benefits of antibiotics for AOM. Our objective was to develop a conversation aid that supports shared decision making (SDM) with parents of children who are diagnosed with non-severe AOM in the acute care setting.Materials and MethodsWe developed a web-based encounter tool following a human-centered design approach that includes active collaboration with parents, clinicians, and designers using literature review, observations of clinical encounters, parental and clinician surveys, and interviews. Insights from these processes informed the iterative creation of prototypes that were reviewed and field-tested in patient encounters.ResultsThe ear pain conversation aid includes five sections: (1) A home page that opens the discussion on the etiologies of AOM; (2) the various options available for AOM management; (3) a pictograph of the impact of antibiotic therapy on pain control; (4) a pictograph of complication rates with and without antibiotics; and (5) a summary page on management choices. This open-access, web-based tool is located at www.earpaindecisionaid.org.ConclusionsWe collaboratively developed an evidence-based conversation aid to facilitate SDM for AOM. This decision aid has the potential to improve parental medical knowledge of AOM, physician/parent communication, and possibly decrease the overuse of antibiotics for this condition.

Feasibility and Acceptability of a Digital Intervention to Support Shared Decision-making in Children's and Young People's Mental Health: Mixed Methods Pilot Randomized Controlled Trial.

BackgroundInterventions to involve parents in decisions regarding children’s and young people’s mental health are associated with positive outcomes. However, appropriately planning effectiveness studies is critical to ensure that meaningful evidence is collected. It is important to conduct pilot studies to evaluate the feasibility and acceptability of the intervention itself and the feasibility of the protocol to test effectiveness.ObjectiveThis paper reports the findings from a feasibility and acceptability study of Power Up for Parents, an intervention to promote shared decision-making (SDM) and support parents and caregivers making decisions regarding children’s and young people’s mental health.MethodsA mixed method study design was adopted. In stage 1, health care professionals and parents provided feedback on acceptability, usefulness, and suggestions for further development. Stage 2 was a multicenter, 3-arm, individual, and cluster randomized controlled pilot feasibility trial with parents accessing services related to children’s and young people’s mental health. Outcome measures collected data on demographics, participation rates, SDM, satisfaction, and parents’ anxiety. Qualitative data were analyzed using thematic analysis. Google Analytics estimates were used to report engagement with the prototype. Outcomes from both stages were tested against a published set of criteria for proceeding to a randomized controlled trial.ResultsDespite evidence suggesting the acceptability of Power Up for Parents, the findings suggest that recruitment modifications are needed to enhance the feasibility of collecting follow-up data before scaling up to a fully powered randomized controlled trial. On the basis of the Go or No-Go criteria, only 50% (6/12) of the sites successfully recruited participants, and only 38% (16/42) of parents completed follow-up measures. Nonetheless, health care practitioners and parents generally accessed and used the intervention. Themes describing appearance and functionality, perceived need and general helpfulness, accessibility and appropriateness, and a wish list for improvement emerged, providing valuable information to inform future development and refinement of the intervention.ConclusionsOwing to the high attrition observed in the trial, proceeding directly to a full randomized controlled trial may not be feasible with this recruitment strategy. Nonetheless, with some minor adjustments and upgrades to the intervention, this pilot study provides a platform for future evaluations of Power Up for Parents.Trial RegistrationInternational Standard Randomized Controlled Trial Number (ISRCTN) 39238984; http://www.isrctn.com/ISRCTN39238984.International Registered Report Identifier (IRRID)RR2-10.2196/14571

Addressing Discordant Perceptions and Beliefs between Patients with Hemophilia and Their Care Teams: Results from a Pilot Program to Build Skills in Shared Decision-Making

Background Evidence-based guidelines for hemophilia management support shared decision-making (SDM) as a method for personalizing treatment decisions and achieving hemophilia control. Using a validated collaborative learning model (Sapir 2017), we evaluated patient and healthcare provider (HCP) perceptions regarding SDM and hemophilia treatment. Methods From April to June 2020, 161 patients and caregivers of patients with hemophilia and 66 HCPs participated in 1 of 6 live, virtual collaborative learning sessions developed with the National Hemophilia Foundation (Table 1). Before and after the sessions, patients and their providers completed tethered surveys to assess alignments and discordances in preferences, experiences, and concerns around hemophilia treatment and SDM. Results Patients and HCPs differed in their estimates of how often providers engage their patients in components of SDM (Figure 1; all comparisons P < 0.01). Relative to patients' responses, HCPs were more likely to report that they usually or always: askhow hemophilia is affecting the patient's quality of life (50% vs 71%), ask about the patient's goals for treatment (48% vs 67%), explain their goals for hemophilia treatment (48% vs 67%), describe different treatment options (46% vs 67%), explain the pros/cons of each treatment option (45% vs 71%), and work with the patient to create a treatment plan that fits the patient's needs and goals (52% vs 74%). When asked why patients are not more involved in treatment decisions, HCPs were more likely than patients to select the following reasons: patients trust the care team to make decisions on their behalf (42% HCPs, 26% patients), patients lack knowledge about hemophilia and available therapies (30% HCPs, 15% patients), and patients feel too overwhelmed to make decisions (27% HCPs, 5% patients). Conversely, HCPs were less likely to report that patients are already fully involved in treatment decisions (15% HCPs, 46% patients). In addition, 10% of patients reported that they are not more involved in treatment decisions because their care team never asks about their treatment goals and priorities. Patients and HCPs held discordant beliefs about the degree of patients' progress toward treatment goals. While HCPs estimated that 79% of their patients are on track to meet their goals, only 49% of patients described themselves similarly; instead, 51% reported that they are only somewhat on track, not on track, or unsure about their degree of progress. Notably, during the past year, 49% of patients treated 2 or more bleeds at home and 22% had 2 or more bleeds treated at an ER. Regarding switching hemophilia treatments, HCPs overestimated patients' concerns about whether a new plan will work for the patient's type of hemophilia (39% HCPs, 25% patients) and fear of side effects (30% HCPs, 22% patients). By comparison, providers correctly estimated patients' low degree of concern about adapting to a new treatment schedule (9% HCPs, 11% patients) and knowing how to treat a bleed (9% HCPs, 7% patients), but underestimated patients' concern about affording different treatment (3% HCPs, 8% patients). In total, providers underestimated how many patients would not worry about switching treatment (8% HCPs, 19% patients). Following the collaborative learning sessions, patients set goals to talk to their care team about their treatment goals (45%), consider their treatment options more closely (40%), take a more active role in treatment decision-making (38%), and notify their care team with concerns about their treatment (31%). HCPs made commitments to engage their patients more frequently in SDM (52%), increase the variety of educational materials they provide to patients (52%), educate their patients about wellness strategies and self-care (33%), and conduct additional small-group education sessions with their patients (30%). Conclusions Patients with hemophilia and their HCPs differed in their experiences, perceptions, and beliefs related to SDM and other key aspects of patient-centered care. Collaborative education can support improved knowledge, communication, and understanding between patients and providers, leading to greater engagement in SDM around personalized hemophilia care. Study Sponsor Statement The study reported in this abstract was funded by an independent educational grant from Genentech. The grantor had no role in the study design, execution, analysis, or reporting. Disclosures No relevant conflicts of interest to declare.

Discordant Beliefs, Perceptions, and Experiences between Patients with Sickle Cell Disease and Their Care Teams: Insights from a Pilot Program to Support Shared Decision-Making

Background For patients with sickle cell disease (SCD), shared learning, understanding, and decision-making with their healthcare providers (HCPs) is critical for achieving treatment goals. Using a validated collaborative learning model (Sapir 2017), we evaluated patient and HCP perceptions of shared decision-making (SDM) related to SCD treatment. Methods In June 2020, 113 patients/caregivers of patients with SCD and 30 HCPs participated in 3 live, virtual collaborative learning sessions developed with the Sickle Cell Disease Association of America (Table 1). Before and after the sessions, patients and their HCPs completed tethered surveys to assess alignments and discordances in preferences, experiences, and concerns around SCD treatment and SDM. Results Patients and HCPs held discordant beliefs about the degree of patients' progress toward treatment goals. While HCPs estimated that only 29% of their patients are on track to meet their goals, 85% of patients reported that they felt somewhat (39%) or fully (46%) on track. The magnitude of this discrepancy suggests that patients may not be aware of treatment milestones they are not reaching. Participants differed in their perceptions of how often HCPs engage patients in SDM (Figure 1). Relative to patients' estimates, HCPs were more likely to report that they usually or always: ask about the patient's goals for treatment (41% vs 61%), work with the patient to create a treatment plan (47% vs 55%), explain their own goals for the patient's treatment (47% vs 55%), and explain the pros/cons of each treatment choice (47% vs 55%). The biggest missed opportunity for SDM involved how often HCPs ask patients about stigma related to opioids for pain management (28% vs 35%). The reported lack of communication around stigma may contribute to providers' underestimation of how often their patients encounter stigma. HCPs estimated that 47% of their patients have faced barriers to adequate pain management in the ER due to opioid stigma and/or poor knowledge of pain crises among ER staff. By comparison, 74% of patients reported ever feeling that ER doctors, nurses, or staff questioned their need for pain medication during a pain crisis (20% once; 54% more than once). When asked why patients are not more involved in SDM (Figure 2), HCPs were more likely to select patient factors: feeling too overwhelmed to make treatment decisions (52% HCPs, 14% patients), low health literacy (49% HCPs, 12% patients), and lack of confidence in validity of opinions/concerns (44% HCPs, 10% patients). In contrast, patients were more likely to report that they are completely involved in treatment decisions (40% patients, 4% HCPs) and that they trust their care team to make decisions on their behalf (37% patients, 30% HCPs). Regarding adjusting SCD therapy, HCPs overestimated how many patients were concerned about learning a new routine/schedule (23% HCPs, 7% patients), but underestimated concerns about being able to pay for it (4% HCPs, 9% patients). HCPs correctly estimated concerns about knowing whether treatment will work (33% HCPs, 34% patients), fear of side effects (29% HCPs, 25% patients), and knowing how to manage a pain episode (9% HCPs, 9% patients). Overall, HCPs underestimated how many patients would not worry about switching treatment (1% HCPs, 9% patients). Following the collaborative learning sessions, patients made commitments to talk to their care team about their treatment goals (52%), consider treatment options more closely (50%), take a more active role in decision-making (46%), and notify their care team with concerns (41%). HCPs set goals to increase the types of educational materials they provide (57%), attempt to ease the transition to the adult care setting (50%), engage their patients more frequently in SDM (47%), and train colleagues on how to conduct additional learning sessions (34%). The full data set with 2 additional learning sessions (Aug 2020) will be presented. Conclusions Patients with SCD and their care teams differed in their experiences and beliefs related to SDM. Collaborative education can reveal opportunities for greater understanding and facilitate improved patient-provider communication, leading to greater engagement in SDM around SCD treatment. Study Sponsor Statement The study reported in this abstract was funded by an independent educational grant from bluebird bio. The grantor had no role in the study design, execution, analysis, or reporting. Disclosures Smith-Whitley: Prime: Other: Education material; Novartis: Membership on an entity's Board of Directors or advisory committees; Global Blood Therapeutics: Membership on an entity's Board of Directors or advisory committees; Celgene: Membership on an entity's Board of Directors or advisory committees.

Patient and physician perspectives on shared decision-making for coronary procedures in people with chronic kidney disease: a patient-oriented qualitative study.

Patients with chronic kidney disease (CKD) and heart disease face challenging treatment decisions. We sought to explore the perceptions of patients and physicians about shared decision-making for coronary procedures for people with CKD, as well as opinions about strategies and tools to improve these decisions. We partnered with 4 patients with CKD and 1 caregiver to design and conduct a qualitative descriptive study using semi-structured interviews and content analysis. Patient participants with CKD and either acute coronary syndrome or cardiac catheterization in the preceding year were recruited from a provincial cardiac registry, cardiology wards and clinics in Calgary between March and September 2018. Cardiologists from the region also participated in the study. Data analysis emphasized identifying, organizing and describing themes found within the data. Twenty patients with CKD and 10 cardiologists identified several complexities related to bidirectional information exchange needed for shared decision-making. Themes identified by both patients and physicians included challenges synthesizing best evidence, variable patient knowledge seeking, timeliness in the acute care setting and influence of roles on decision-making. Themes identified by physicians related to processes and tools to help support shared decision-making in this setting included personalization to reflect the variability of risks and heterogeneity of patient preferences as well as allowing for physicians to share their clinical judgment. There are complexities related to bidirectional information exchange between patients with CKD and their physicians for shared decision-making about coronary procedures. Processes and tools to facilitate shared decision-making in this setting require personalization and need to be time sensitive.

Development of an App to Facilitate Communication and Shared Decision-making With Parents of Febrile Infants≤60 Days Old.

We aimed to develop and test a tool to engage parents of febrile infants≤60days of age evaluated in the emergency department (ED). The tool was designed to improve communication for all parents and to support shared decision-making (SDM) about whether to perform a lumbar puncture (LP) for infants 29 to 60days of age. We conducted a multiphase development and testing process: 1) individual, semistructured interviews with parents and clinicians (pediatric and general emergency medicine [EM] physicians and pediatric EM nurses) to learn their preferences for a communication and SDM tool; 2) design of a "storyboard" of the tool with design impression testing; 3) development of a software application (i.e., app) prototype, called e-Care; and 4) usability testing of e-Care, using qualitative assessment and the system usability scale (SUS). We interviewed 27 parents and 23 clinicians. Interviews revealed several themes, including that a communication tool should augment but not replace verbal communication; a Web-based format was preferred; and information about infections and testing, including the rationales for specific tests, would be valuable. We then developed separate versions of e-Care for infants≤28days and 29 to 60days of age, in both English and Spanish. The e-Care app includes four sections: 1) homepage; 2) why testing is done; 3) what tests are done; and 4) what happens after testing, including a table for parents of infants 29 to 60days of age to compare the risks/benefits of LP in preparation for an SDM conversation. Parents and clinicians reported that e-Care was understandable and helpful. The mean SUS score was 90.3 (95% confidence interval= 84 to 96.6), representing "excellent" usability. The e-Care app is a useable and understandable tool to support communication and SDM with parents of febrile infants≤60days of age in the ED.

Quality and effectiveness of osteoporosis treatment decision aids: a systematic review and environmental scan.

Decision aids (DAs) are evidence-based tools that support shared decision-making (SDM) implementation in practice; this study aimed to identify existing osteoporosis DAs and assess their quality and efficacy; and to gain feedback from a patient advisory group on findings and implications for further research. We searched multiple bibliographic databases to identify research studies from 2000 to 2019 and undertook an environmental scan (search conducted February 2019, repeated in March 2020). A pair of reviewers, working independently selected studies for inclusion, extracted data, evaluated each trial's risk of bias, and conducted DA quality assessment using the International Patient Decision Aid Standards (IPDAS). Public contributors (patients and caregivers with experience of osteoporosis and fragility fractures) participated in discussion groups to review a sample of DAs, express preferences for a new DA, and discuss plans for development of a new DA. We identified 6 studies, with high or unclear risk of bias. Across included studies, use of an osteoporosis DA was reported to result in reduced decisional conflict compared with baseline, increased SDM, and increased accuracy of patients' perceived fracture risk compared with controls. Eleven DAs were identified, of which none met the full set of IPDAS criteria for certification for minimization of bias. Public contributors expressed preferences for encounter DAs that are individualized to patients' own needs and risk. Using a systematic review and environmental scan, we identified 11 decision aids to inform patient decisions about osteoporosis treatment and 6 studies evaluating their effectiveness. Use of decision aids increased accuracy of risk perception and shared decision-making but the decision aids themselves fail to comprehensively meet international quality standards and patient needs, underpinning the need for new DA development.

Shared Decision-Making: A New Frontier for Case Management Leadership.

Despite improved access to information, many people are neither engaged in their health care nor in the decision-making process. As the hub of care coordination, case managers are perfectly positioned to participate in and support shared decision-making (SDM) efforts. This article addresses SDM from a case management perspective.The objectives are to PRIMARY PRACTICE SETTING(S):: Applicable to all health care sectors where professional case management is practiced. Communication skill is an essential case management competency. Shared decision-making is a communication process in which a case manager and a client collaborate to make the best health care decisions based on what matters most to the client. Case managers must undertake education and training to become fluent in shared decision-making as a core feature of person-centered, professional practice. Professional case managers must understand the concept and principles of shared decision-making as applies in their practice as well as their responsibilities to support care team colleagues using shared decision-making concepts. Organizations should incorporate shared decision-making language in program descriptions, individual performance plans, satisfaction surveys, and department/organization goals.

The impact of a patient decision aid on shared decision-making behaviour in oncology care and pulmonary medicine-A field study based on real-life observations.

A patient decision aid (PtDA) is often developed and evaluated to support shared decision making (SDM) and a patient-centred approach. In this study, a PtDA template was developed to support two different preference sensitive decisions: adjuvant therapy for breast cancer and diagnostic workup for lung cancer. The aim of the study was to explore whether a PtDA improved SDM and supported a patient-centred approach from an observational point of view. Real-life observations were conducted using the validated observational instrument OPTION 12. Three nurses conducted observations of consultations in two different clinical settings. The study consisted of a baseline cohort (phase 1) and an intervention cohort (phase 2). In phase 1, standard consultations were observed. Subsequently, the PtDA was introduced, and in phase 2, consultations with the clinician using the PtDA were observed. Twenty-nine observations were conducted in phase 1 and 24 in phase 2. Using a PtDA increased the overall OPTION score significantly (P<.0001), both in decisions on adjuvant treatment for breast cancer and on diagnostic workup of lung cancer. Items in the OPTION instrument regarding systematic conversation to obtain SDM had a higher increase of scores compared to items regarding a patient-centred approach. Real-life observations and the use of a validated observational tool provided comprehensive knowledge as to how a PtDA affects SDM in consultations. Applying a PtDA resulted in a significant overall increase of SDM behaviour in decisions on adjuvant treatment after breast cancer surgery and diagnostic workup in case of a small suspicion of lung cancer. In conclusion, the PtDA supports SDM in consultations independently of type of decision and department.

Tailoring and field-testing the use of a knowledge translation peer support shared decision making strategy with First Nations, Inuit and M\xe9tis people making decisions about their cancer care: a study protocol

Plain English summaryTailoring and testing a peer support decision making strategy with First Nations, Inuit and Métis people making decisions about their cancer care: A study protocol.First Nations, Inuit and Métis (FNIM) people face higher risks for cancer compared to non-FNIM populations. They also face cultural barriers to health service use. Within non-FNIM populations an approach to health decision making, called shared decision making (SDM), has been found to improve the participation of people in their healthcare. Peer support with SDM further improves these benefits. The purpose of this study is to tailor and test a peer support SDM strategy with community support workers to increase FNIM people’s participation in their cancer care.This project has two phases that will be designed and conducted with a Steering Committee that includes members of the FNIM and cancer care communities. First, a peer support SDM strategy will be tailored to meet the needs of cancer system users who are receiving care in urban settings, and training in the SDM strategy developed for community support workers. Three communities will be supported for participation in the study and community support workers who are peers from each community will be trained to use the SDM strategy.Next, each community support worker will work with a community member who has a diagnosis of cancer or who has supported a family member with cancer. Each community support worker and community member pair will use the SDM strategy. The participation and experience of the community support worker and community member will be evaluated.The research will be used to develop strategies to support people who are making decisions about their health.Tailoring and field-testing the use of a knowledge translation peer support shared decision making strategy with First Nations, Inuit and Métis people making decisions about their cancer care: A study protocolBackgroundFirst Nations, Inuit and Métis (“FNIM”) people face increased cancer risks in relation to general populations and experience barriers to health service use. Shared decision making (SDM) has been found to improve peoples’ participation and outcomes in healthcare and peer support with SDM further improves these benefits. The purpose of this study is to tailor and then field test, by and with FNIM communities, a peer support SDM strategy for use in cancer care.MethodsThis project has 2 theory-driven phases and 5 stages (a-e). A core research team that includes members of the Aboriginal Cancer Control Unit of Cancer Care Ontario communities and academic researchers, will work with a Steering Committee. In phase 1, (stage a) a peer support SDM strategy will be tailored to meet the needs of cancer system users who are receiving care in urban settings and (stage b), training developed that will i) introduce participant communities to SDM, and ii) train community support workers (CSWs) within these communities. Next (stage c), three communities will be approached for voluntary participation in the study. These communities will be introduced to SDM in community meetings, and if in agreement then CSWs from each community will be recruited to participate in the study. One volunteer CSW from each community will be trained to use the peer support SDM strategy to enable phase 2 (field test of the peer support SDM strategy).During phase 2 (stage d), each CSW will be matched to a volunteer community member who has had a diagnosis of cancer or has supported a family member with cancer and is familiar with Ontario cancer systems. Each CSW-community member pair (3 to 4 pairs/community) will use the tailored peer support SDM strategy; their interaction will be audio-recorded and their participation and experience evaluated (total of 9 to 12 interviews). As well (stage e), data will be collected on health systems’ factors related to the use of the peer support SDM strategy.DiscussionFindings will develop peer support SDM strategies to enhance participation of FNIM people in cancer care decisions, advance knowledge translation science, and support a proposal to conduct a multi-site implementation trial.

Primary Prevention with Statins: Strategies to Support Shared Decision-Making

This paper proposes several strategies for health systems, primary care clinicians, cardiologists, and other members of the healthcare team to better engage individuals in decisions around primary preventive statin therapy. The 2013 American College of Cardiology and American Heart Association (ACC/AHA) guidelines for cholesterol management provide an opportunity to better engage patients in decisions about primary prevention of cardiovascular disease, including the initiation of statin therapy. In the shared decision making process, clinicians and patients work together to determine what is best for the patient, taking into account the scientific evidence informing guideline recommendations, the clinician’s knowledge and experience, the known burdens of taking a daily lifelong medication, and the patient’s preferences, values and goals. Several challenges exist to adopting shared decision making as a patient-centered model of care.

Developing a patient decision aid for the treatment of women with early stage breast cancer: the struggle between simplicity and complexity

BackgroundA patient decision aid (PtDA) can support shared decision making (SDM) in preference-sensitive care, with more than one clinically applicable treatment option. The development of a PtDA is a complex process, involving several steps, such as designing, developing and testing the draft with all the stakeholders, known as alpha testing. This is followed by testing in ‘real life’ situations, known as beta testing, and then finalising the definite version.Our aim was developing and alpha testing a PtDA for primary treatment of early stage breast cancer, ensuring that the tool is considered relevant, valid and feasible by patients and professionals.MethodsOur qualitative descriptive study applied various methods including face-to-face think-aloud interviews, a focus group and semi-structured telephone interviews. The study population consisted of breast cancer patients facing the choice between breast-conserving therapy with or without preceding neo-adjuvant chemotherapy and mastectomy, and professionals involved in breast cancer care in dedicated multidisciplinary breast cancer teams.ResultsA PtDA was developed in four iterative test rounds, taking nearly 2 years, involving 26 patients and 26 professionals. While the research group initially opted for simplicity for the sake of implementation, the clinicians objected that the complexity of the decision could not be ignored. Other topics of concern were the conflicting views of professionals and patients regarding side effects, the amount of information and how to present it.ConclusionThe development was an extensive process, because the professionals rejected the simplifications proposed by the research group. This resulted in the development of a completely new draft PtDA, which took double the expected time and resources. The final version of the PtDA appeared to be well-appreciated by professionals and patients, although its acceptability will only be proven in actual practice (beta testing).Trial registrationNTR TC 5721.

Views of general practice staff about the use of a patient-oriented treatment decision aid in shared decision making for patients with type 2 diabetes: A mixed-methods study.

BackgroundDecision aids can be used to support shared decision making (SDM). A patient‐oriented treatment decision aid (DA) was developed for type 2 diabetes but its use by general practice staff appeared to be limited.ObjectivesTo explore views of practice staff towards SDM and the DA.DesignA mixed‐methods study within the Dutch PORTDA‐diab trial.Setting and participantsIncluded were 17 practices with staff members who were responsible for routine diabetes care and had worked with the DA, and 209 of their patients.MethodsInterviews were conducted focusing on applicability, usefulness and feasibility of the DA. Interviews were tape‐recorded, transcribed verbatim and subjected to content analysis for identifying and classifying views. Patient‐reported data about the use of the DA were collected. Associations between specific views and use of the DA were tested using Pearson point‐biserial correlation.ResultsThe majority of practice staff expressed positive views towards SDM, which was associated with making more use of the DA. Most of the staff expressed that the DA stimulated a two‐way conversation. By using the DA, several became aware of their paternalistic approach. Some staff experienced a conflict with the content of the DA, which was associated with making less use of the DA.ConclusionsThe DA was considered useful by practice staff to support SDM. A positive view towards SDM was a facilitator, whereas experiencing a conflict with the content of the DA was a barrier for making use of the DA.

Oral Anticoagulation in Atrial Fibrillation: Development and Evaluation of a Mobile Health Application to Support Shared Decision-Making

BackgroundAtrial fibrillation is responsible for one in four strokes, which may be prevented by oral anticoagulation, an underused therapy around the world. Considering the challenges imposed by this sort of treatment, mobile health support for shared decision-making may improve patients’ knowledge and optimize the decisional process.ObjectiveTo develop and evaluate a mobile application to support shared decision about thromboembolic prophylaxis in atrial fibrillation.MethodsWe developed an application to be used during the clinical visit, including a video about atrial fibrillation, risk calculators, explanatory graphics and information on the drugs available for treatment. In the pilot phase, 30 patients interacted with the application, which was evaluated qualitatively and by a disease knowledge questionnaire and a decisional conflict scale.ResultsThe number of correct answers in the questionnaire about the disease was significantly higher after the interaction with the application (from 4.7 ± 1.8 to 7.2 ± 1.0, p < 0.001). The decisional conflict scale, administered after selecting the therapy with the app support, resulted in an average of 11 ± 16/100 points, indicating a low decisional conflict.ConclusionsThe use of a mobile application during medical visits on anticoagulation in atrial fibrillation improves disease knowledge, enabling a shared decision with low decisional conflict. Further studies are needed to confirm if this finding can be translated into clinical benefit.