Stakeholder Perspectives on Overcoming Barriers to Cascade Testing in Lynch Syndrome: A Qualitative Study.
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ABSTRACT:
SUBMITTER: Srinivasan S
PROVIDER: S-EPMC7718347 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundConventional clinical trials are essential for generating high-quality evidence by measuring the efficacy of interventions in rigorously controlled clinical environments. However, their execution can be expensive and time-consuming. In addition, clinical trials face several logistical challenges regarding the identification, recruitment, and retention of participants; consistent data collection during trials; and adequate patient follow-up. This might lead to inefficient resource utilization. In order to partially address the current problems with conventional clinical trials, there exists the need for innovations. One such innovation is the virtual clinical trial (VCT). VCTs allow for the collection and integration of diverse data from multiple information sources, such as electronic health records, clinical and demographic data, patient-reported outcomes, anthropometric and activity measurements, and data collected by digital biomarkers or (small) samples that participants can collect themselves. Although VCTs have the potential to provide substantial value to clinical research and patients because they can lower clinical trial costs, increase the volume of data collected from patients' daily environment, and reduce the burden of patient participation, so far VCT adoption is not commonplace.ObjectiveThis paper aims to better understand the barriers and facilitators to VCT adoption by determining the factors that influence individuals' considerations regarding VCTs from the perspective of various stakeholders.MethodsBased on online semistructured interviews, a qualitative study was conducted with pharmaceutical companies, food and health organizations, and an applied research organization in Europe. Data were thematically analyzed using Rogers' diffusion of innovation theory.ResultsA total of 16 individuals with interest and experience in VCTs were interviewed, including persons from pharmaceutical companies (n=6), food and health organizations (n=4), and a research organization (n=6). Key barriers included a potentially low degree of acceptance by regulatory authorities, technical issues (standardization, validation, and data storage), compliance and adherence, and lack of knowledge or comprehension regarding the opportunities VCTs have to offer. Involvement of regulators in development processes, stakeholder exposure to the results of pilot studies, and clear and simple instructions and assistance for patients were considered key facilitators.ConclusionsCollaboration among all stakeholders in VCT development is crucial to increase knowledge and awareness. Organizations should invest in accurate data collection technologies, and compliance of patients in VCTs needs to be ensured. Multicriteria decision analysis can help determine if a VCT is a preferred option by stakeholders. The findings of this study can be a good starting point to accelerate the development and widespread implementation of VCTs.
| S-EPMC8294122 | biostudies-literature
Project description:The rate of screening for colorectal cancer (CRC) in the U.S. remains low (under 65%), meaning that thousands of people die of colorectal cancer unnecessarily. Colorectal cancer screening tests range from more invasive and very sensitive for polyps and cancer (colonoscopy) to less invasive and less sensitive (e.g., fecal immunochemical testing (FIT)). Screening rates go up when patients consider all these tests, not just colonoscopy. Informing patients about their options for CRC screening could produce higher quality decisions, improve the match between patient preferences and tests performed, and increase uptake of CRC screening. Decision aids (DAs) are a promising tool for accomplishing this goal. Also, precision CRC prevention - providing information about an individual’s specific risk for CRC - has great promise to increase uptake and improve decision making.
Unfortunately, the COVID-19 pandemic is causing severe challenges to providing CRC screening and other prevention services. Health systems are trying to adapt, but these efforts have only begun and are poorly understood. Moreover, patient perceptions of disease risk and risk from COVID-19 are unknown.
| 2361924 | ecrin-mdr-crc
Project description:This article explores the views of general practitioners and specialists on their referral of patients with suspected Lynch syndrome to cancer genetic services. Using a purposive maximum variation sampling strategy, we conducted semi-structured interviews face-to-face with 28 general practitioners and specialists in public or private hospitals and specialist clinics between March and August 2011. General practitioners and specialists were recruited in a major metropolitan area in Australia. Interview transcripts were reviewed by two independent researchers, and thematic analysis was performed using NVivo10 software. The main barriers and motivators identified were: (1) clinician-related (e.g., familiarity with Lynch syndrome and family history knowledge); (2) patient-related (e.g., patients' interests and personal experience with cancer); and (3) organizational-related (e.g., access to services, guidelines and referral pathway). Referral of patients with suspected Lynch syndrome to cancer genetic services is motivated and hindered by a range of individual, interpersonal and organizational factors. In order to improve the care and quality of life of patients and family with suspected Lynch syndrome, further research is needed to develop supportive tools for clinicians.
| S-EPMC4251408 | biostudies-literature
Project description:BackgroundThe United States health care sector is one of the largest polluting industries, which has significant adverse effects on human health. Medical device reprocessing (MDR) is a sustainability solution that has the potential to decrease hospital waste, cut carbon emissions, reduce spending, and improve supply chain resiliency; however, only a small proportion of FDA-approved devices are actually reprocessed. Thus, we conducted a qualitative study to understand barriers and facilitators of scaling up MDR.Methods and findingsWe conducted in-depth interviews with 17 stakeholders (exceeding thematic saturation) at a large academic health system in New England and national MDR organizations. We also collected observations through site visits at the health system. We recruited participants from June 2021 to April 2022 through purposive sampling. Using an analytic approach guided by the Consolidated Framework for Implementation Research, we applied inductive and deductive codes related to key implementation constructs. We then conducted a thematic analysis and identified five overarching themes related to barriers and facilitators of MDR. First, respondents explained that regulatory bodies and original equipment manufacturers determine which devices can be reprocessed. For example, some respondents described that original equipment manufacturers use tactics of forced obsolescence that prevent their devices from being reprocessed. Second, respondents explained that MDR has variable compatibility with hospital priorities; for example, the potential cost savings of MDR is compatible with their priorities, while the perception of decreased functionality of reprocessed medical devices is incompatible. Third, respondents described that physician preferences influence which reprocessed devices get ordered. Fourth, respondents explained that variable staff knowledge and beliefs about MDR influence their motivations to select and collect reprocessable devices. Lastly, respondents emphasized that there was a lack of infrastructure for evaluating and maintaining MDR programs within their health system.ConclusionsBased on our findings, we have outlined a number of recommendations that target these barriers and facilitators so that the environmental and financial benefits of MDR can be realized at this health system and nationally. For example, implementing federal policies that prevent original equipment manufacturers from using tactics of forced obsolescence can facilitate the scale-up of MDR nationally. Additionally, providing life cycle assessments that compare the environmental effects of single-use disposable, reprocessable disposable, and reusable devices could facilitate health systems' purchasing decisions. Creating and disseminating audit and feedback reports to hospital staff might also facilitate their continued engagement in the program. Lastly, hiring a full-time program manager that leads MDR programs within health systems could improve program sustainability.
| S-EPMC9803114 | biostudies-literature
Project description:ObjectiveAlthough widely recommended, Lynch syndrome (LS) testing with tumor microsatellite instability (MSI) and/or immunohistochemistry (IHC) is infrequently performed in early-onset colorectal cancer (CRC), and CRC generally. Reasons are poorly understood. Hence, we conducted a national survey focusing on gastroenterologists, as they are frequently first to diagnose CRC, assessing testing barriers and which specialist is felt responsible for ordering MSI/IHC. Additionally, we assessed factors influencing timing of MSI/IHC ordering; testing on colonoscopy biopsy, opposed to post-operative surgical specimens, assists decisions on preoperative germline genetic testing and extent of colonic resection (ECR).MethodsA 21-question web-based survey was distributed through an American College of Gastroenterology email listing.ResultsIn total 509 completed the survey. 442 confirmed gastroenterologists were analyzed. Only 33.4% felt gastroenterologists were responsible for MSI/IHC ordering; pathologists were believed most responsible (38.6%). Cost, unfamiliarity interpreting results and unavailable genetic counseling most commonly prevented routine ordering (33.3%, 29.2%, 24.9%, respectively). In multivariable analysis, non-academic and rural settings were associated with cost and genetic counseling barriers. Only 46.1% felt MSI/IHC should always be performed on colonoscopy biopsy. Guideline familiarity predicted whether respondents felt surgical resection should be delayed until results returned given potential effect on ECR decisions.ConclusionInconsistencies in who is felt should order MSI/IHC may lead to diffusion of responsibility, preventing consistent testing, including preoperatively. Assuring institutional universal testing protocols are in place, with focus on timing of testing, can optimize care. Strategies addressing cost barriers and genomic service availability in rural and non-academic settings can enhance testing. Greater emphasis on guideline familiarity is required.
| S-EPMC6148048 | biostudies-literature
Project description:BackgroundLocating technologies are a subtype of assistive technology that aim to support persons with dementia by helping manage spatial orientation impairments and provide aid to care partners by intervening when necessary. Although a variety of locating devices are commercially available, their adoption has remained low in the past years. Several studies have explored barriers to the adoption of assistive technologies from the perspective of professional stakeholders, but in-depth explorations for locating technologies are sparse. Additionally, the inputs of business professionals are lacking. The aim of this study was to expand knowledge on barriers to the adoption of locating technologies from a multi-stakeholder professional perspective, and to explore strategies to optimize adoption.MethodsIn total, 22 professionals working in business (n = 7), healthcare (n = 6) and research (n = 9) fields related to gerontology and gerontechnology participated in our focus group study. Perceptions on the value of using locating technologies for dementia care, barriers to their adoption, as well as salient services and information dissemination strategies were explored. After verbatim transcription, transcripts were analysed following an inductive data-driven content analysis approach in MAXQDA.ResultsSix key adoption barriers centering on: (1) awareness-, (2) technological-, (3) product characteristic- and (4) capital investment-based limitations, (5) unclear benefits, as well as (6) ethical concerns emerged. The interplay between barriers was high. Five core themes on services and information dissemination strategies centering on: (1) digital autonomy support, (2) emergency support, (3) information dissemination actors, (4) product acquisition, and (5) product advertising were extracted.ConclusionsOur study with interdisciplinary stakeholders expands knowledge on barriers to the adoption of locating technologies for dementia care, and reinforces recommendations that an interdisciplinary strategy is needed to optimize adoption. Also, our findings show that focusing on services to increase digital autonomy and on information dissemination strategies has been largely overlooked and may be particularly effective.
| S-EPMC8218472 | biostudies-literature
Project description:BACKGROUND:Attending physician preceptors are accountable to many stakeholder groups, yet stakeholders' views about what the preceptor role entails have not been sufficiently considered. OBJECTIVE:To explore stakeholder groups' unique perspectives of the preceptor role. DESIGN:Qualitative study with a constructivist orientation. PARTICIPANTS:Semi-structured interviews were conducted with 73 participants from two university teaching hospitals between October 2012 and March 2014. Participants included representatives from seven stakeholder groups: patients and their families, allied healthcare providers, bedside nurses, nurse managers, medical students, internal medicine residents, and preceptors. APPROACH:An inductive thematic analysis was conducted where researchers coded transcripts, abstracted codes into themes, and then mapped themes onto six focus areas: role dimensions, role performance, stressors and rewards, mastery, fulfillment, and impact on others. Two authors then identified "recurrent themes" (emerging in two or more focus areas) and compared them across groups to identify "unique themes" (emerging from a maximum of two stakeholder groups). "Unique thematic emphases" (unique themes that would not have emerged if a stakeholder group was not interviewed) are described. KEY RESULTS:Patients and their families emphasized preceptors' ultimate authority. Allied healthcare providers described preceptors as engaged collaborators involved in discharge planning and requiring a sense of humor. Bedside nurses highlighted the need for role standardization. Nurse managers stressed preceptors' need for humanism. Medical students highlighted preceptors' emotional labor and their influence on learners' emotional well-being. Residents emphasized preceptors' responsibilities to multiple stakeholders. Preceptors described lifelong learning and exercising control over one's environment. CONCLUSIONS:Various stakeholder groups hold unique and nuanced views of the attending physician preceptor role. These views could broaden formal role guidance for medical education and patient care. This study generated real-world, practical examples of what stakeholders feel are important preceptor skills. These skills should be practiced, taught, and role modeled in this clinical setting.
| S-EPMC6614296 | biostudies-literature
Project description:BackgroundThe success of workplace clinical training (WCT) is important given that veterinary students are licensed to work independently upon graduation. Considering this, it is perhaps surprising that there is limited published work describing what it means to be prepared for this educational experience, particularly given that the transition to WCT can be stressful for students. This paper reports the results of a qualitative study aiming to generate a rich understanding of veterinary student preparedness for WCT using emic, or insider, perspectives of key stakeholders.MethodsFrom a constructivist standpoint, homogenous online group interviews were held with final year veterinary students, recent student alumni, clinical supervisors, faculty, and academic educationalists to discuss what it means to be prepared for WCT. The data was analysed using a template analysis approach.ResultsA three-tier taxonomy to describe preparedness for WCT was constructed from the data. At the topmost level, there were seven themes to illuminate different aspects of preparedness: students should be prepared 1) for the transition to learning and working in a clinical and professional environment, 2) for self-directed and experiential learning whilst working, 3) with a growth mindset, 4) with intrinsic motivation and enthusiasm for learning and working, 5) for communication, consultation and clinical reasoning, 6) with the knowledge for work, and 7) with the practical competence and confidence for work.ConclusionsThis study provides a deeper understanding of the tools we can provide, and the attributes we can nurture in, senior veterinary students to facilitate their learning and working during WCT. This improved understanding is a necessary precursor to refining pedagogical support and curriculum design within veterinary schools.
| S-EPMC9461096 | biostudies-literature
Project description:BackgroundWith increasing survival rates, a growing population of patients with cancer have received or will receive adjuvant therapy to prevent cancer recurrences. Patients and caregivers will confront the complexities of balancing the preventative benefits of adjuvant therapy with possible near-term or long-term adverse events (AEs). Adjuvant treatment-related AEs (from minimal to severe) can impact therapeutic adherence, quality of life, emotional and physical health, and survival. However, to the authors' knowledge, limited information is available regarding how stakeholders use or desire to use adjuvant-related AE information to inform the care of patients with cancer.MethodsA qualitative, purposeful sampling approach was used to elicit stakeholder feedback via semistructured interviews (24 interviews). Drug development, drug regulatory, clinical, payer, and patient/patient advocacy stakeholders were questioned about the generation, dissemination, and use of adjuvant treatment-related AE information to inform the care of patients with cancer. Transcripts were coded independently by 2 senior health care researchers and reconciled to identify key themes.ResultsAll stakeholder groups in the current study identified needed improvements in each of the following 4 areas: 1) improving the accessibility and relevance of AE-related information; 2) better integrating and implementing available information regarding AEs for decisions; 3) connecting contemporary cultural and economic value systems to the generation and use of information regarding adjuvant treatment-related AEs; and 4) addressing a lack of alignment and ownership of stakeholder efforts to improve the use of AE information in the adjuvant setting.ConclusionsDespite commonalities in the overall needs identified by the diverse stakeholders in the current study, broad systemic change has been stymied. The current study identified the lack of alignment and the absence of a central "owner" of these diffuse efforts as a previously unrecognized hurdle to realizing the desired systemic improvements. Future initiatives aimed at improving quality of life and outcomes for patients receiving adjuvant therapy through the improved use of AE information must address this challenge through innovative collectives and novel leadership strategies.
| S-EPMC6916390 | biostudies-literature
Project description:Despite evidence suggesting that skills training is an important mechanism of change in dialectical behaviour therapy, little research exploring facilitators and barriers to this process has been conducted. The study aimed to explore clients' experiences of barriers to dialectical behaviour therapy skills training and how they felt they overcame these barriers, and to compare experiences between treatment completers and dropouts. In-depth qualitative interviews were conducted with 40 clients with borderline personality disorder who had attended a dialectical behaviour therapy programme. A thematic analysis of participants' reported experiences found that key barriers to learning the skills were anxiety during the skills groups and difficulty understanding the material. Key barriers to using the skills were overwhelming emotions which left participants feeling unable or unwilling to use them. Key ways in which participants reported overcoming barriers to skills training were by sustaining their commitment to attending therapy and practising the skills, personalising the way they used them, and practising them so often that they became an integral part of their behavioural repertoire. Participants also highlighted a number of key ways in which they were supported with their skills training by other skills group members, the group therapists, their individual therapist, friends and family. Treatment dropouts were more likely than completers to describe anxiety during the skills groups as a barrier to learning, and were less likely to report overcoming barriers to skills training via the key processes outlined above. The findings of this qualitative study require replication, but could be used to generate hypotheses for testing in further research on barriers to skills training, how these relate to dropout, and how they can be overcome. The paper outlines several such suggestions for further research.
| S-EPMC4605586 | biostudies-literature