Defining the Denominator for Measuring Quality of End-of-Life Care in Children with Cancer: Results of a Nominal Group Technique.

OBJECTIVE: To determine which groups of children with cancer for whom to apply the newly developed quality measures (QMs) for end-of-life (EOL) care. STUDY DESIGN: In a series of nominal groups, panelists answered the question: "Which children, diagnoses, conditions, or prognoses should be included when examining the quality of EOL care for children with cancer?" In each group, individual panelists proposed answers to the question. After collating individual responses, each panelist ranked their 5 top answers and points were assigned (5 pts for the best answer, 4 pts the second best, etc.). A team of pediatric oncology and palliative care clinician-scientists developed and applied a coding structure for responses and associated themes and subthemes for responses. RESULTS: We conducted 5 nominal groups with a total of 44 participants. Most participants identified as female (88%) and non-Hispanic White (86%). Seventy-nine percent were clinicians, mainly in pediatric palliative care, pediatric oncology, or hospice; 40% were researchers and 12% were bereaved parents. Responses fell into 5 themes: (1) poor prognosis cancer; (2) specific treatment scenarios; (3) certain populations; (4) certain symptoms; and (5) specific utilization scenarios. Poor prognosis cancer and specific treatment scenarios received the most points (320 pts [49%] and 147 pts [23%], respectively). CONCLUSIONS: Participants developed a framework to identify which children should be included in EOL QMs for children with cancer. The deliberate identification of the denominator for pediatric QMs serves as a potent tool for enhancing quality, conducting research, and developing clinical programs.

Which Educational Topics and Smartphone App Functions Are Prioritized by US Patients With Rheumatic and Musculoskeletal Diseases? A Mixed-Methods Study.

OBJECTIVE: We sought to identify (1) what types of information US adults with rheumatic and musculoskeletal diseases (RMD) perceive as most important to know about their disease, and (2) what functions they would use in an RMD-specific smartphone app. METHODS: Nominal groups with patients with RMD were conducted using online tools to generate a list of needed educational topics. Based on nominal group results, a survey with final educational items was administered online, along with questions about desired functions of a smartphone app for RMD and wearable use, to patients within a large community rheumatology practice-based research network and the PatientSpot registry. Chi-square tests and multivariate regression models were used to determine differences in priorities between groups of respondents with rheumatic inflammatory conditions (RICs) and osteoarthritis (OA), and possible associations. RESULTS: At least 80% of respondents considered finding a rheumatologist, understanding tests and medications, and quickly recognizing and communicating symptoms to doctors as extremely important educational topics. The highest-ranked topic for both RIC and OA groups was "knowing when the medication is not working." The app functions that most respondents considered useful were viewing laboratory results, recording symptoms to share with their rheumatology provider, and recording symptoms (eg, pain, fatigue) or disease flares for health tracking over time. Approximately one-third of respondents owned and regularly used a wearable activity tracker. CONCLUSION: People with RMD prioritized information about laboratory test results, medications, and disease and symptom monitoring, which can be used to create educational and digital tools that support patients during their disease journey.

Managing diabetes during treatment for breast cancer: oncology and primary care providers' views on barriers and facilitators.

PURPOSE: Diabetes is a prevalent comorbid condition among many women with breast cancer. The roles and responsibilities of managing diabetes during cancer care are unclear, as oncologists lack interest and clinical expertise and many patients stop seeing their primary care providers (PCPs). Uncertainty around who should manage diabetes for cancer patients can result in gaps in care for survivors. We sought to elicit the perspectives of providers about a novel diabetes care delivery intervention for women undergoing chemotherapy for breast cancer. METHODS: We conducted nominal group sessions with PCPs and breast oncologists across the USA. We introduced a novel care delivery model, which involved a nurse practitioner (NP) specifically trained in diabetes to work within the oncology team to manage diabetes for women during chemotherapy. PCPs and oncologists were asked to identify potential barriers and facilitators to the intervention's success and then vote on the top three most important barriers and facilitators, separately. Votes were aggregated across sessions and presented as frequencies and weighted percentages. RESULTS: From November to December 2020, two 60-min sessions with PCPs and two 60-min sessions with breast oncologists were held virtually. In total, 29 providers participated, with 16 PCPs and 13 breast oncologists. At the health system level, financial support for the NP-led intervention was identified as the most important barrier across both provider types. Clearly defined roles for each care team member were identified as the most important facilitator at the care team level. At the patient level, lack of cancer-specific diabetes education was identified as an important barrier. CONCLUSION: Our findings underscore the need to engage various stakeholders including policy makers, institutional leadership, care team members, and patients to improve diabetes care for patients undergoing chemotherapy for breast cancer. As such, multi-disciplinary interventions are warranted to increase awareness, engagement, and self-management practices among breast cancer patients with diabetes.

Barriers to antigen detection and avoidance in chronic hypersensitivity pneumonitis in the United States.

BACKGROUND: Chronic hypersensitivity pneumonitis (CHP) is an interstitial lung disease (ILD) caused by long term exposure to an offending antigen. Antigen avoidance is associated with improved outcomes. We are unable to identify the antigen source in approximately half of patients. When an antigen is successfully identified, patients have difficulty with avoidance. METHODS: We conducted three structured group discussions with US based ILD specialists utilizing the nominal group technique (NGT). Participants listed barriers to antigen detection and avoidance in CHP. Each participant ranked what they perceived to be the top three barriers in the list in terms of importance. The master list of barriers was consolidated across the three groups into themes that were prioritized based on receiving the highest rankings by participants. RESULTS: Twenty-five physicians participated; 56% had experience caring for CHP patients for ≥ 16 years. Sixty barriers to antigen detection were categorized into seven themes of which the top three were: 1. unclear significance of identified exposures; 2. gaps in clinical knowledge and testing capabilities; 3. there are many unknown and undiscovered antigens. Twenty-eight barriers to antigen avoidance were categorized into five themes of which the top three were: 1. patient limitations, financial barriers and lack of resources; 2. individual patient beliefs, emotions and attachments to the antigen source; and 3. gaps in clinical knowledge and testing capabilities. CONCLUSIONS: This study uncovered challenges at the individual patient, organizational, and societal levels and ranked them in terms of level of importance. These findings provide information to guide development and validation of multidisciplinary support and interventions geared towards antigen identification and avoidance in CHP.

Barriers to Beta-Blocker Use and Up-Titration Among Patients with Heart Failure with Reduced Ejection Fraction.

PURPOSE: For patients with heart failure with reduced ejection fraction (HFrEF), guidelines recommend use of beta-blockers with gradual up-titration. However, many patients with HFrEF do not use beta-blockers and up-titration is rare. Our purpose was to identify and rank barriers to beta-blocker use and up-titration from the perspective of primary care physicians. METHODS: We conducted 4 moderated, structured group discussions among 19 primary care physicians using the nominal group technique; 16 participants also completed a survey. Participants generated lists of barriers to beta-blocker use and up-titration among patients with HFrEF. Each participant had six votes with three votes assigned to the item ranked most important, two to the second most important item, and one to the third most important item. Investigators characterized items into themes. The percentage of available votes was calculated for each theme. RESULTS: Fifteen of 16 participating primary care physicians who completed the survey reported that management of beta-blockers was their responsibility. Treatment/side effects, particularly hypotension, were identified as the most important barrier for beta-blocker use (72% of available votes) followed by polypharmacy (11%), healthcare system barriers (10%), and comorbidities (6%). Barriers to up-titration included treatment/side effects (49% of available votes), patient communication/buy-in (21%), polypharmacy (13%), and healthcare system barriers (8%). CONCLUSIONS: Many barriers to guideline concordant use of beta-blockers among patients with HFrEF identified by primary care providers are not readily modifiable. Addressing these barriers may require development, testing, and dissemination of protocols for beta-blocker initiation and up-titration that are safe and appropriate in primary care.

Primary Care Physician Perspectives on Barriers to Statin Treatment.

PURPOSE: Discontinuation of statin therapy represents a major challenge for effective cardiovascular disease prevention. It is unclear how often primary care physicians (PCPs) re-initiate statins and what barriers they encounter. We aimed to identify PCP perspectives on factors influencing statin re-initiation. METHODS: We conducted six nominal group discussions with 23 PCPs from the Deep South Continuing Medical Education network. PCPs answered questions about statin side effects, reasons their patients reported for discontinuing statins, how they respond when discontinuation is reported, and barriers they encounter in getting their patients to re-initiate statin therapy. Each group generated a list of responses in round-robin fashion. Then, each PCP independently ranked their top three responses to each question. For each PCP, the most important reason was given a weight of 3 votes, and the second and third most important reasons were given weights of 2 and 1, respectively. We categorized the individual responses into themes and determined the relative importance of each theme using a "percent of available votes" metric. RESULTS: PCPs reported that side effects, especially muscle/joint-related symptoms, were the most common reason patients reported for statin discontinuation (47% of available votes). PCPs reported statin re-challenge as their most common response when a patient discontinues statin use (31% of available votes). Patients' fear of side effects was ranked as the biggest challenge PCPs encounter in getting their patients to re-initiate statin therapy (70% of available votes). CONCLUSION: PCPs face challenges getting their patients to re-initiate statins, particularly after a patient reports side effects.

Performance improvement CME for quality: challenges inherent to the process.

PURPOSE: The purpose of this paper is to discuss the perspective debates upon the real-time challenges for a three-staged Performance Improvement Continuing Medical Education (PI-CME) model, an innovative and potential approach for future CME, to inform providers to think, prepare and to act proactively. DESIGN/METHODOLOGY/APPROACH: In this discussion, the challenges associated for adopting the American Medical Association's three-staged PI-CME model are reported. FINDINGS: Not many institutions in USA are using a three-staged performance improvement model and then customizing it to their own healthcare context for the specific targeted audience. They integrate traditional CME methods with performance and quality initiatives, and linking with CME credits. PRACTICAL IMPLICATIONS: Overall the US health system is interested in a structured PI-CME model with the potential to improve physicians practicing behaviors. ORIGINALITY/VALUE: Knowing the dearth of evidence for applying this structured performance improvement methodology into the design of CME activities, and the lack of clarity on challenges inherent to the process that learners and providers encounter. This paper establishes all-important first step to render the set of challenges for a three-staged PI-CME model.

Barriers and Facilitators for Under-Represented in Medicine (URiM) Medical Students Interested in Surgical Sub-specialties.

Background: Little is known on drivers and detractors underrepresented in medicine (URiM) medical students face. Methods: Using the nominal group technique (NGT), we explored experiences that strengthen or weaken the enthusiasm to pursue a career in surgery among URiM medical students (October 2021- April 2022); participants voted on the three most important experiences (weight of 3= top rated, = 1 for the lowest rated). Responses from NGT with at least one vote were weighted, ranked, and categorized. Results: Seventeen students participated. Experiences that strengthen enthusiasm (36 responses with at least one vote) involved mentorship and role models (weighted sum percentage, 35%), demonstrating grit (15%), lifestyle (15%), patient interactions (14%), technical skills (11%), community and team (10%), and intellectual stimulation (1%). Experiences that weaken enthusiasm (33 responses with at least one vote) include the minority experience (weighted sum percentage, 51%), quality of life (25%), toxic environment (13%), lack of information (7%), and finances (5%). Conclusions: Mentorship, demonstrating grit, and feeling a sense of community were important positive experiences or attitudes. The minority experience, toxic environment, perceptions of self-worth, and lifestyle misconceptions perceived by URiM must be addressed to increase diversity, equity, and inclusion.

Evaluating the consistency with guideline recommendations for diagnosis and management of idiopathic pulmonary fibrosis in non-academic settings.

BACKGROUND: Idiopathic pulmonary fibrosis (IPF) is a progressive lung disease with elevated mortality. Delay in diagnosis lead to worse outcomes. Guidelines developed at academic medical centers are difficult to replicate in the community. OBJECTIVES: Our primary objective was to ascertain consistency with the 2011 IPF guidelines. Our secondary objective was to conduct an interdisciplinary review to ascertain whether the evidence supported the original diagnosis of IPF or not. METHODS: We asked permission from pulmonologists to review records of patients diagnosed with IPF after 2011. We collected physician demographics and training data; patient demographics, clinical and diagnostic/management data. The clinical data and available images were reviewed by the interdisciplinary review panel. RESULTS: 26 practicing pulmonologists located in the Southeast of the United States consented to participate. Mean age was 48, 70% were male and all had current certification. We reviewed data from 96 patients. The mean age was 71.4 and most were male. Only 23% had the recommended screening for a connective tissue disease and 42.6% were screened for exercise-induced hypoxemia. Among patients with available images for review (n=66), only 50% had a high-resolution CT scan. 22% of patients underwent a surgical biopsy and in only 33% of the cases three lobes were sampled. No patient had documentation that a multidisciplinary discussion occurred. In 20% of the cases with available images, the evidence supported an alternative diagnosis. 56% of eligible candidates were ever started on anti-fibrotics. CONCLUSIONS: Our findings suggest that consistency with the IPF guidelines is low in non-academic settings.

Evaluation of an Intervention to Support Patient-Rheumatologist Conversations About Escalating Treatment in Patients with Rheumatoid Arthritis: A Proof-of-Principle Study.

OBJECTIVE: This study's objective was to test whether an online video intervention discussing appropriate treatment escalation improves willingness to change treatment in people living with rheumatoid arthritis (RA). METHODS: We conducted a controlled, randomized trial among patients with RA enrolled in ArthritisPower, a United States patient registry. We recruited participants by email and surveyed their assessment of disease activity (patient global), satisfaction with disease control (patient acceptable symptom state), attitudes about RA medications, decisional conflict (decisional conflict scale), and willingness to modify RA treatment (choice predisposition scale, higher scores are better) if or when recommended by their rheumatologist. Intervention groups watched educational videos relevant to a treat-to-target (T2T) strategy, whereas control groups viewed vaccination-related videos as an "attention control." We compared the between-group difference in patients' willingness to modify RA treatment (primary outcome) and difference in decisional conflict about changing RA treatment (secondary outcome) after watching the videos using t tests. RESULTS: Participants with self-reported RA (n = 208) were 90% White and 90% women, with a mean (standard deviation) age of 50 (11) years, and 52% reported familiarity with the RA T2T strategy. We found a significant improvement in between-group difference in willingness to change RA treatment among intervention versus control participants (0.49 [95% confidence interval 0.09-0.88], P = 0.02). The effect size (Glass's delta) for the intervention was 0.48. Decisional conflict about treatment change decreased, but the between-group difference was not significant. CONCLUSION: This novel educational patient-directed intervention discussing appropriate treatment escalation was associated with improved willingness to change RA treatment if or when recommended by a rheumatologist. Further studies should evaluate whether this change in patients' predisposition translates into actual treatment escalation.

Views of primary care physicians and rheumatologists regarding screening and treatment of hyperlipidemia among patients with rheumatoid arthritis.

BACKGROUND: Despite high risk for cardiovascular disease (CVD) mortality, screening and treatment of hyperlipidemia in patients with rheumatoid arthritis (RA) is suboptimal. We asked primary care physicians (PCPs) and rheumatologists to identify barriers to screening and treatment for hyperlipidemia among patients with RA. METHODS: We recruited rheumatologists and PCPs nationally to participate in separate moderated structured group teleconference discussions using the nominal group technique. Participants in each group generated lists of barriers to screening and treatment for hyperlipidemia in patients with RA, then each selected the three most important barriers from this list. The resulting barriers were organized into physician-, patient- and system-level barriers, informed by the socioecological framework. RESULTS: Twenty-seven rheumatologists participated in a total of 3 groups (group size ranged from 7 to 11) and twenty PCPs participated in a total of 3 groups (group size ranged from 4 to 9). Rheumatologists prioritized physician level barriers (e.g. 'ownership' of hyperlipidemia screening and treatment), whereas PCPs prioritized patient-level barriers (e.g. complexity of RA and its treatments). CONCLUSION: Rheumatologists were conflicted about whether treatment of CVD risk among patients with RA should fall within the role of the rheumatologist or the PCP. All participating PCPs agreed that CVD risk reduction was within their role. Factors that influenced PCPs' decisions for screening and treatment for CVD risk in patients with RA were mainly related to their concern about how treatment for CVD risk could influence RA symptomatology (myalgia from statins) or how inflammation from RA and RA medications influences lipid profiles.

Patient and Rheumatologist Perspectives Regarding Challenges to Achieving Optimal Disease Control in Rheumatoid Arthritis.

OBJECTIVE: To identify and prioritize patient- and rheumatologist-perceived barriers to achieving disease control. METHODS: Patients with rheumatoid arthritis (RA) and rheumatologists from the Corrona registry were invited by e-mail to participate in nominal groups. Two separate lists of barriers were created, 1 from RA patient-only nominal groups and the other from rheumatologist-only nominal groups, and barriers were sorted into themes. Next, using an online survey, a random sample of RA patients from the Corrona registry were asked to rank their top 3 barriers to achieving disease control. RESULTS: Four nominal groups totaling 37 RA patients identified patient barriers to achieving control of RA activity that were classified into 17 themes. Three nominal groups totaling 25 rheumatologists identified barriers that were classified into 11 themes. The financial aspects of RA care ranked first for both types of nominal groups, while medication risk aversion ranked second among the perceived barriers of the physician nominal group and third among those of the RA patient nominal group. Among the 450 RA patients surveyed, 77% considered RA a top health priority, and 51% reported being aware of the treat-to-target strategy for RA care; the 3 most important patient-perceived challenges to achieving disease control were RA prognosis uncertainty, medication risk aversion, and the financial/administrative burden associated with RA care. CONCLUSION: There are common, potentially modifiable, patient- and rheumatologist-reported barriers to achieving RA disease control, including perceived medication risk aversion, suboptimal treatment adherence, and suboptimal patient-physician communication regarding the benefits of tight control of disease activity in RA. Addressing these obstacles may improve adherence to goal-directed RA care.

Which patient reported outcome domains are important to the rheumatologists while assessing patients with rheumatoid arthritis?

BACKGROUND: Patient-reported outcomes (PROs) aid in rheumatoid arthritis (RA) management, but it is not well understood which measures would be most relevant to the rheumatologists for making treatment decisions. METHODS: We recruited rheumatologists nationally to participate in moderated structured group teleconference discussions using the nominal group technique. Participants in each group generated lists of the elements from patient's history and signs that they use to make treatment recommendations for RA. Each participant then selected the three most important elements from the generated list. The results of each group were then combined and summarized. RESULTS: Twenty-five rheumatologists participated in 4 groups (group size ranged from 4 to 8) and 150 available ranking votes across all groups. The statements generated across the 4 groups were categorized into 13 topics (including symptoms, physical function, comorbidities, social aspects, physical findings, response to treatment, treatment adherence, pain management, side effects, tests, access to care, contraception, and organ involvement), 10 of which received ranking votes. Symptoms received the highest ranking (46% of votes), followed by physical function (16%), and physical findings (13%). Among the unranked topics, social aspects had the highest number of statements (8 statements). CONCLUSION: Rheumatologists highly valued patient-reported RA symptoms and physical function to inform their treatment decisions, even above objective data such as physical findings and test results. These results can guide the selection of validated PRO measures to assess these domains to inform the clinical care of patients with rheumatoid arthritis.

Barriers to conducting ambulatory and home blood pressure monitoring during hypertension screening in the United States.

In 2015, the US Preventive Services Task Force updated their hypertension recommendations to advise that adults with elevated office blood pressure (BP) undergo out-of-office BP measurement to exclude white coat hypertension before diagnosis. Our goal was to determine the most important barriers to primary care providers' ordering ambulatory and home BP monitoring in the United States. We enrolled 63 primary care providers into nominal group panels in which participants iteratively listed and ranked barriers to ambulatory and home BP monitoring. Top-ranked barriers to ambulatory BP monitoring were challenges in accessing testing, costs of testing, concerns about the willingness or ability of patients to successfully complete tests, and concerns about the accuracy and benefits of testing. Top-ranked barriers to home BP monitoring were concerns about compliance with the correct test protocol, accuracy of tests results, out-of-pocket costs of home BP devices, and time needed to instruct patients on home BP monitoring protocol. Efforts to increase the use of ambulatory and home BP monitoring by primary care providers in the United States should prioritize increasing the financial and personnel resources available for testing and addressing provider concerns about patients' ability to conduct high-quality tests.