How can pharmacists better support patients with chronic diseases? The patient perspective.

BACKGROUND: Patients' perceptions of their interaction with pharmacists can affect how they use this resource for chronic disease care. OBJECTIVE: This qualitative study explored pharmacist-patient interactions and patients' perceptions of pharmacists' roles in cardiovascular disease (CVD) and inflammatory bowel disease (IBD). METHODS: Patient volunteers, recruited through Janssen's Patient Engagement Research Council program, completed a 15-minute prework survey before a 90-minute live virtual focus group session to provide feedback on pharmacist-patient interactions, the pharmacist's role in patient care, and recommendations for improvement. RESULTS: In total, 27 patients participated. Among patients with CVD (n=18), 56% were female, 61% aged ≥65 years, and 39%/39% Black/White. Of those with IBD (n=9), 56% were female, 89% aged 25-44 years, and 33%/56% Black/White. In the CVD cohort, patients conversed with their pharmacists at least monthly, on average. Patients were generally happy with their relationship with their pharmacist, viewing pharmacists as a trusted resource for medication information. Polypharmacy was common in the CVD cohort (mean, 10.8 medications). For patients with IBD, pharmacist-patient interactions were less frequent, relationships were generally perceived as transactional, patients took fewer medications (mean, 3.2), and felt uncomfortable discussing their disease in public. All patients (CVD and IBD) were unaware of pharmacists' medical training/knowledge. Recommendations included private spaces for sensitive conversations, phone/text support, in-depth regular check-ins, and proactive communication to highlight that the pharmacist's role is to provide patient-centered holistic care. CONCLUSION: This research demonstrates a lack of understanding of pharmacist training, accessibility and role among patients with chronic disease, and highlights opportunities to amend delivery of care. These insights can be used to inform strategies and approaches tailored to address unique needs of specific patient populations to enhance pharmacist-patient interactions.

Experience of Autologous Stem Cell Transplant in Multiple Myeloma: The Patient and Caregiver Perspective.

A qualitative study of the experiences of patients who received autologous stem cell transplant (ASCT) for the treatment of multiple myeloma (MM) was conducted to better understand their MM disease journey, including first symptoms, diagnosis, ASCT, and recovery. Sixteen participants, including 12 patients with MM and 4 caregivers of patients with MM, were interviewed in focus group meetings. Pain, weakness, and bone pain were common first symptoms among patients. The MM diagnosis was often made by a hematologist or oncologist. Patients were referred to a specialized oncologist after diagnosis, who was the primary driver in making ASCT treatment decisions. Eight patients received their ASCT in the inpatient setting, with some having lengthy hospital stays; 4 received their ASCT in an outpatient setting with 3 eventually being hospitalized. The focus groups identified that patients and caregivers perceived various unmet needs and impacts on quality of life throughout their transplant journey. Educational resources and innovative therapies are needed to reduce the disease burden of MM and enhance the quality of life for both patients and their caregivers.

Patient Perceptions of CAR-T Therapy in the USA: Findings from In-Depth Interviews.

INTRODUCTION: Chimeric antigen receptor-T cell (CAR-T) therapy has revolutionized advanced blood cancer treatment. However, preparation, administration, and recovery from these therapies can be complex and burdensome to patients and their care partners. Utilization of an outpatient setting for CAR-T therapy administration could help improve convenience and quality of life. METHODS: In-depth qualitative interviews were conducted with 18 patients in the USA with relapsed/refractory multiple myeloma or relapsed/refractory diffuse large B-cell lymphoma, 10 of whom had completed investigational or commercially approved CAR-T therapy and 8 of whom had discussed it with their physicians. We aimed to better understand inpatient experiences and patient expectations regarding CAR-T therapy and to ascertain patient perspectives on the possibility of outpatient care. RESULTS: CAR-T offers unique treatment benefits, particularly high response rates with an extended treatment-free period. All study participants completing CAR-T were very positive about their inpatient recovery experience. Most reported mild-to-moderate side effects; two experienced severe side effects. All said that they would opt to undergo CAR-T therapy again. Participants felt that the primary advantage of inpatient recovery was immediate access to care and on-going monitoring. Perceived advantages of the outpatient setting were comfort and familiarity. Because immediate access to care was seen as crucial, patients recovering in an outpatient setting would seek either a direct contact person or phone line for assistance if needed. CONCLUSION: As institutions become more experienced with CAR-T therapies, outpatient care may help reduce financial strain. Patient input can help institutions improve the outpatient experience and ensure safety and effectiveness of CAR-T programs.

Perspectives on applying immuno-autonomics to rheumatoid arthritis: results from an online rheumatologist survey.

The term "immuno-autonomics" has been coined to describe an emerging field evaluating the interaction between stress, autonomic nervous system (ANS), and inflammation. The field remains largely unknown among practicing rheumatologists. Our objective was to evaluate the perspectives of rheumatologists regarding the role of stress in the activity and management of rheumatoid arthritis (RA). A 31-item survey was conducted with 231 rheumatologists. Rheumatologists were asked to assess the role of stress in rheumatoid arthritis (RA) disease activity and were provided with information regarding immuno-autonomics. They were asked to consider how immuno-autonomics resonated with their patient management needs. The majority of rheumatologists are eager to better understand non-response, believe that stress biology and ANS dysfunction interfere with disease activity, and embrace the theory that measurement of ANS via next-generation HRV may be able to evaluate autonomic dysfunction and the biology of stress. Rheumatologists are open to the idea that quantitative measurement of ANS function using next-generation HRV can be a helpful tool to RA practice. The majority agree that ANS state influences RA disease control and that quantitative measures of ANS state are helpful to RA practice. Rheumatologists also agree that patients with poor ANS function may be at risk for not responding adequately to conventional, biologic, or targeted synthetic DMARDs. Almost all would use an in-office test to quantitatively measure ANS using next-generation HRV. This study shows that rheumatologists are open to embracing evaluation of ANS function as a possible tool in the management and treatment of RA.

Perceived clinical utility of a test for predicting inadequate response to TNF inhibitor therapies in rheumatoid arthritis: results from a decision impact study.

Tumor necrosis factor inhibitor (TNFi) therapies are often the first biologic therapy used to treat rheumatoid arthritis (RA) patients. However, a substantial fraction of patients do not respond adequately to TNFi therapies. A test with the ability to predict response would inform therapeutic decision-making and improve clinical and financial outcomes. A 32-question decision-impact survey was conducted with 248 rheumatologists to gauge the perceived clinical utility of a novel test that predicts inadequate response to TNFi therapies in RA patients. Participants were informed about the predictive characteristics of the test and asked to indicate prescribing decisions based on four result scenarios. Overall, rheumatologists had a favorable view of the test: 80.2% agreed that it would improve medical decision-making, 92.3% said it would increase their confidence when making prescribing decisions, and 81.5% said it would be useful when considering TNFi therapies. Rheumatologists would be more likely to prescribe a TNFi therapy when the test reported that no signal of non-response was detected (79.8%) and less likely to prescribe a TNFi therapy when a signal of non-response was detected (11.3%-25.4%). Rheumatologists (84.7%) agreed that payers should provide coverage for such a test. This study shows that rheumatologists support the clinical need for a test to predict inadequate response to TNFi therapies. Test results were perceived to lead to changes in prescribing behaviors as results instill confidence in the ordering rheumatologist.

A Randomized Controlled Study Comparing the National Cancer Institute's Original and Revised Consent Form Templates.

Since 1998, the National Cancer Institute (NCI) has mandated that researchers use its consent form template in developing consent forms for their NCI-funded clinical trials. The template was substantially revised in 2013 to aid in the development of simpler, more concise consent forms. The NCI conducted a randomized controlled trial with cancer survivors (N = 153) to assess the revised template's effect on individuals' knowledge, satisfaction, clarity, and likelihood of joining a trial in the future. We found that the revised template resulted in equally high knowledge and satisfaction scores as the original template, but with fewer words and pages. The likelihood that an individual would participate in a trial diminished after he or she reviewed either the original or revised consent form, yet having knowledge about trials before reviewing the consent forms resulted in increased satisfaction. To ensure an informed decision-making process, we recommend using the revised NCI consent form template along with using educational interventions aimed at increasing the understanding potential participants have of a trial before they receive a consent form.

Do newspapers lead with lead? A content analysis of how lead health risks to children are covered.

Lead poses a serious environmental health risk to young children, causing such irreversible health effects as mental retardation, stunted growth, and hearing and visual impairment. Studies suggest that various sectors of the public, including children's caregivers, are not sufficiently concerned about this risk or knowledgeable about ways of minimizing it. Because newspapers are one of the primary ways members of the public learn about risks, the authors examined the characteristics and content of 152 newspaper articles on lead to determine when coverage occurred and what information was provided. Results revealed that newspapers most often covered lead as a local news story. Few articles identified children under six years of age as the most vulnerable group or provided important information on health effects, sources of exposure, or abatement methods. The authors' recommendations focus on helping environmental health professionals work with newspaper journalists to improve the information available to the public.