Defining Priorities to Improve Patient Experience in Non-Muscle Invasive Bladder Cancer

Although approximately 75% of bladder cancers are non-muscle invasive (NMIBC) at diagnosis, most research tends to focus on invasive disease (e.g., experiences related to radical cystectomy and urinary diversion). There is a lack of studies on quality of life, and especially qualitative research, in bladder cancer generally. As a result, relatively little is known about the experiences and needs of NMIBC patients. Objective: To understand patient experience, define care priorities, and identify targets for care improvement in NMIBC across the cancer continuum. Methods: Through focus groups, patients treated for NMIBC (stage <T2) were invited to share their care experiences including diagnosis, treatment, and survivorship. Transcripts were analyzed using conventional content analysis to identify themes and subthemes. Results: Twenty patients (16 male, 4 female, all white) participated in three focus groups. Five primary themes emerged: access to care, provider characteristics and communication, quality of life, goals of care/influences on decision-making, and role of social support. Patients with NMIBC desired timely access to care and honest and caring provider communication. They described urinary function and emotional quality of life changes resulting from diagnosis and treatment. Avoiding cystectomy and being alive for family were the major decision influencers. Conclusion: In this qualitative study, we identified access to care, provider characteristics and communication, quality of life, values/influences on decision-making, and social support as priority areas to improve patient experience in NMIBC. Care redesign efforts should focus on improving access, enhancing provider communication, reducing side effects, and supporting caregiver roles

An empirical approach to assessing pediatric residents\u27 attitudes, knowledge, and skills in primary care behavioral health

This paper describes an empirical approach to assessing pediatric residents\u27 attitudes, knowledge and skills in primary care behavioral health. Outcomes from that assessment approach are presented from two pediatric residency training programs in the northeastern United States. Thirty-six pediatric residents completed attitudes, knowledge and skills surveys. The survey was developed to align with the American Academy of Pediatrics’ Policy Statement in 2009 citing aspirational competencies for pediatricians in primary care behavioral health. This alignment addressed both learner variables (attitudes, knowledge, and skills) as well as clinical presentations (ADHD, anxiety, depression, and suicide) highlighted in the policy statement. The survey specifically inquired about self-reported confidence and comfort in managing behavioral health concerns using evidence-based practice parameters (attitudes and knowledge) and their measured ability to deliver evidence-based care in response to clinical vignettes (skills). Findings largely revealed no statistically significant differences in attitudes, knowledge or skills between interns and upper-level residents. Training programs can use the approach described in this paper and the assessment instrument with some possible modifications to monitor annual progress and evaluate any changes in didactic and clinical training

As a Pediatrician, I Don’t Know the Second, Third, or Fourth Thing to Do: A Qualitative Study of Pediatric Residents’ Training and Experiences in Behavioral Health

Despite a mandated 1-month rotation in developmental-behavioral pediatrics (DBP), pediatric residents report inadequate training in behavioral health care. As a first step in much needed curriculum development in this area, this study sought to assess learner experiences regarding the management of behavioral health problems during residency. Four focus groups were conducted for residents in years 1-3 of training in 2 residency programs in a northeastern state. Transcripts were analyzed and coded by researchers through qualitative classical content analysis. The exploratory analysis revealed 9 key themes: time requirements, rapport building, resources and referrals for behavioral health, psychiatric medications, diagnosis vs. treatment, working with families, the importance of behavioral health, fears of working with a pediatric population, and training issues. These qualitative data further identify gaps in the behavioral health training of pediatric residents and may inform future innovations in training curricula

Treating Behavioral Health Conditions: What Worries Pediatric Residents?

Background: Changes in the delivery of health care have increased attention to behavioral health care. Particularly, there is an emphasis on improving the delivery of behavioral health care through integrated care delivery systems. Unfortunately, many medical students emerge from their medical school experience with little more than a brief exposure, often a 1-month rotation, in a psychiatric setting. As residents arrive for their first and subsequent years of training, formal exposure to behavioral training often does not occur. Pediatric residents frequently begin their residency in “continuity clinic,” where they are providing primary behavioral care to children, adolescents and their parents. This care often involves providing guidance about behavioral health issues. Residents are often “flying by the seat of their pants” in this particular care area because there has not been formal training. This study represents a qualitative study of Year 1 residents early in their first year of residency and as they transition into Year 2 of their pediatric residency. It is intended to document their concerns, knowledge and attitudes about providing behavioral health care. Residents will be followed in this project for 3 years as a program of formal didactic education. Integration of clinical psychologists, curbside consults and shared visits is implemented to address gaps in behavioral health experience and knowledge. Methods: Residents participated in focus groups during years 1 and 2 of their residency. Discussion focused on knowledge gaps, concerns and successes in delivery of behavioral health care within their general pediatric practice. Results: Several key themes emerged including time management, struggles with establishing rapport with patients, knowing referral sources and protocols, comfort level diagnosing but not knowing how to treat a variety of conditions, difficulties in establishing communication and relationships with adults and dysfunctional families, making mistakes that result in children dying, and the relative importance of behavioral health. Conclusion: Changes in residency training to improve skills in behavioral health treatment may be warranted

Treating Behavioral Health Conditions: What Worries Pediatric Residents?

Background: Changes in the delivery of health care have increased attention to behavioral health care. Particularly, there is an emphasis on improving the delivery of behavioral health care through integrated care delivery systems. Unfortunately, many medical students emerge from their medical school experience with little more than a brief exposure, often a 1-month rotation, in a psychiatric setting. As residents arrive for their first and subsequent years of training, formal exposure to behavioral training often does not occur. Pediatric residents frequently begin their residency in “continuity clinic,” where they are providing primary behavioral care to children, adolescents and their parents. This care often involves providing guidance about behavioral health issues. Residents are often “flying by the seat of their pants” in this particular care area because there has not been formal training. This study represents a qualitative study of Year 1 residents early in their first year of residency and as they transition into Year 2 of their pediatric residency. It is intended to document their concerns, knowledge and attitudes about providing behavioral health care. Residents will be followed in this project for 3 years as a program of formal didactic education. Integration of clinical psychologists, curbside consults and shared visits is implemented to address gaps in behavioral health experience and knowledge. Methods: Residents participated in focus groups during years 1 and 2 of their residency. Discussion focused on knowledge gaps, concerns and successes in delivery of behavioral health care within their general pediatric practice. Results: Several key themes emerged including time management, struggles with establishing rapport with patients, knowing referral sources and protocols, comfort level diagnosing but not knowing how to treat a variety of conditions, difficulties in establishing communication and relationships with adults and dysfunctional families, making mistakes that result in children dying, and the relative importance of behavioral health. Conclusion: Changes in residency training to improve skills in behavioral health treatment may be warranted

An empirical approach to assessing pediatric residents\u27 attitudes, knowledge, and skills in primary care behavioral health

This paper describes an empirical approach to assessing pediatric residents\u27 attitudes, knowledge and skills in primary care behavioral health. Outcomes from that assessment approach are presented from two pediatric residency training programs in the northeastern United States. Thirty-six pediatric residents completed attitudes, knowledge and skills surveys. The survey was developed to align with the American Academy of Pediatrics’ Policy Statement in 2009 citing aspirational competencies for pediatricians in primary care behavioral health. This alignment addressed both learner variables (attitudes, knowledge, and skills) as well as clinical presentations (ADHD, anxiety, depression, and suicide) highlighted in the policy statement. The survey specifically inquired about self-reported confidence and comfort in managing behavioral health concerns using evidence-based practice parameters (attitudes and knowledge) and their measured ability to deliver evidence-based care in response to clinical vignettes (skills). Findings largely revealed no statistically significant differences in attitudes, knowledge or skills between interns and upper-level residents. Training programs can use the approach described in this paper and the assessment instrument with some possible modifications to monitor annual progress and evaluate any changes in didactic and clinical training

The Healthcare Systems Research Network (HCSRN) as an Environment for Dissemination and Implementation Research: A Case Study of Developing a Multi-Site Research Study in Precision Medicine

Context: In existence for nearly 25 years, the Healthcare Systems Research Network (HCSRN) is an established and sustainable network of health care systems that serves as a “real world” laboratory to enable the integration of research findings into practice. The objective of this paper is to demonstrate how the HCSRN serves as an ideal environment for studying dissemination and implementation of evidence-based practices into health care systems through the example of developing a multi-site study on the implementation of evidence-based precision medicine practices. Case description: The “Implementing Universal Lynch Syndrome Screening (IMPULSS)” study (NIH R01CA211723) involves seven HCSRN health care systems and two external health care systems. The IMPULSS study will describe and explain organizational variability around Lynch syndrome (LS) screening to identify which factors in different organizational contexts are important for successful implementation of LS screening programs and will create a toolkit to facilitate organizational decision making around implementation and improvement of precision medicine programs in health care systems. Major Themes: The strengths of the HCSRN that facilitate D&I research include: 1) a culture of collaboration, 2) standardization of data and processes across systems, and 3) researchers embedded in diverse health care systems. We describe how these strengths contributed to developing the IMPULSS study. Conclusion: Given the importance of conducting research in real world settings to improve patient outcomes, the unique strengths of the HCSRN are of vital importance. The IMPULSS study is one case example of how the strengths of the HCSRN make it an excellent environment for research on implementing evidence-based precision medicine practices in health care systems

Acceptability, Appropriateness, and Feasibility of Automated Screening Approaches and Family Communication Methods for Identification of Familial Hypercholesterolemia: Stakeholder Engagement Results from the IMPACT-FH Study

Guided by the Conceptual Model of Implementation Research, we explored the acceptability, appropriateness, and feasibility of: (1) automated screening approaches utilizing existing health data to identify those who require subsequent diagnostic evaluation for familial hypercholesterolemia (FH) and (2) family communication methods including chatbots and direct contact to communicate information about inherited risk for FH. Focus groups were conducted with 22 individuals with FH (2 groups) and 20 clinicians (3 groups). These were recorded, transcribed, and analyzed using deductive (coded to implementation outcomes) and inductive (themes based on focus group discussions) methods. All stakeholders described these initiatives as: (1) acceptable and appropriate to identify individuals with FH and communicate risk with at-risk relatives; and (2) feasible to implement in current practice. Stakeholders cited current initiatives, outside of FH (e.g., pneumonia protocols, colon cancer and breast cancer screenings), that gave them confidence for successful implementation. Stakeholders described perceived obstacles, such as nonfamiliarity with FH, that could hinder implementation and potential solutions to improve systematic uptake of these initiatives. Automated health data screening, chatbots, and direct contact approaches may be useful for patients and clinicians to improve FH diagnosis and cascade screening