Survivors of childhood cancer face barriers to receiving guideline-based, long-term follow-up care. Two digital tools, Passport for Care (PFC) and Cancer SurvivorLink (SurvivorLink), address complementary gaps by enabling tailored survivorship care plan (SCP) generation, updating, storage, and sharing. As part of a joint initiative to integrate the tools, 18 survivorship clinics using PFC and/or SurvivorLink were surveyed to assess awareness of features and preferred information dissemination strategies. Overall, awareness of core features of each tool was high, but knowledge of educational and clinician-focused resources was limited. Respondents prioritized distinct dissemination strategies for clinics, clinicians, survivors, and broader community engagement.
Background The Children's Oncology Group Long-Term Follow-Up Guidelines provide exposure-based risks and recommendations for late effects screening of survivors of childhood cancer. Passport for Care (PFC) is a web-based clinical decision support tool for generating a personalized survivorship care plan (SCP) derived from the Guidelines and user-entered exposures. We assessed PFC clinician user practices and perceptions of PFC impact on clinic workflow, guidelines application, and survivor shared decision-making. Procedure A 35-item REDCap survey was emailed to all PFC users (n = 936) in 146 current and former PFC user clinics. Anonymous responses were permitted. Results were summarized and compared with a 2012 survey. Results Data were available from 148 respondents representing 64 out of 146 PFC user clinics (minimum clinic response rate 44%, excluding 49 anonymous responses). Generation of a personalized SCP was the most common application of PFC, followed by determination of surveillance recommendations and use as a survivor database. Twenty-five respondents (17%) felt data entry was a significant or insurmountable barrier to PFC application. Sixty-nine percent of respondents attributed PFC with a very high/high impact on guidelines adherence in their clinical practice, compared with 40% who attributed PFC with having a significant impact on adherence in 2012 (p < .001). Conclusion The survey results provide valuable insights on patterns of SCP delivery and Survivor Clinic workflow. User-perceived benefits to PFC included facilitating clinician ability to follow guidelines recommendations in clinical practice. Importantly, some barriers to resource utilization were also identified, suggesting a need for user-informed adaptations to further improve uptake.
e24058 Background: Survivors of childhood cancer are at lifelong risk for late effects. The Children’s Oncology Group evidence-based guidelines provide exposure-based risks and recommendations for late effects screening. The Passport for Care (PFC) was developed in 2007 as a web-based clinical decision support tool that uses advanced algorithms to generate a personalized survivorship care plan (SCP), derived from the guidelines and user-entered exposures. Over 150 Long-Term Survivor (LTS) clinics utilize PFC, generating over 47,000 SCPs to date. Our objective was to assess PFC user practices and perceptions of PFC’s impact on clinic workflow, guideline application, and survivor shared decision-making. Methods: We designed a 35-item survey based on a 2012 PFC survey and expanded to include items related to interval website improvements. In June 2021, a REDCap™ survey was sent via email to 935 PFC users in 145 clinics: 107 active PFC clinics and 38 inactive (no data entry in the preceding 6 months). Responses were anonymous, but those who provided an email address were given a $5 gift card. Survey results were reviewed, summarized, and compared with data from 2012 using a Chi square test, when applicable. Results: There were 148 respondents of whom 104 declined anonymity, representing 64 clinics (44%): 58 of the active (54%) and 6 of the inactive clinics (16%). Respondents were largely physicians (n = 46), advanced practice providers (APPs, n = 42), and nurses (n = 49). Of the 148 respondents, 142 provided valid data for the remaining items. PFC was most often used to generate a personalized SCP (n = 131, 93%), compared with 63% in 2012. Other common uses were as a clinical database (59%) and to document late effects (51%). Seventy-one respondents (50%) used PFC to generate an SCP at entry to LTS, and 54 (38%) used PFC at every survivor visit. Most used PFC for > 75% of survivors (n = 103, 73%). Nurses (n = 89, 63%), APPs (n = 63, 44%), physicians (n = 37, 26%), and data managers (n = 13, 9%) performed data entry. Sixty-four respondents (45%) estimated requiring over 30 minutes/patient for data abstraction and entry, and 67 respondents (48%) felt data entry was a modest or significant barrier to PFC application. The majority of respondents were very or generally satisfied with PFC (87%), unchanged from previous (90%). The perceived impact of PFC on accurate application of the guidelines improved from 41% to 72% (p < 0.001), and on fostering conversations with survivors about risk for late effects and screening improved from 44% to 70% (p < 0.001). Conclusions: These results underscore the PFC’s role in increasing guidelines utilization and facilitating conversations with survivors about screening needs. The burden of data entry was a noted limitation, particularly when this responsibility fell to the physician or APP, and was further corroborated by user prioritization of ‘exposure data pre-population by treatment protocol’ for future PFC modifications.
Purpose: Congenital heart diseases (CHDs) are the most common type of birth defects. Improvements in CHD care have led to roughly 1.4 million survivors reaching adulthood. Unfortunately, <30% of adults with CHD are seen by adult CHD physicians, and few formal CHD transition-to-adult programs exist. The objective of this project was to first complete a stakeholder needs assessment to inform the knowledge gaps, transition readiness, and delivery of transition education for a diverse group of adolescents with CHD. Second, to develop the workflow, educational content, and electronic medical record (EMR) components for a clinical and mobile-based education with the assistance of an adolescent CHD expert panel.
Survivors of childhood cancer are at increased risk for late effects of cancer therapy, but evidence suggests that adherence to follow-up care is suboptimal. Here, we review the barriers to adherence, including those unique to childhood cancer survivors, and the rationale for distribution of a survivorship care plan. We also discuss advantages and potential limitations of delivering survivorship care plans via web-based platforms, and describe the unique features of one of these platforms, Passport for Care. A baseline survey directed toward survivors and conducted through Passport for Care found that a significant proportion of survivors are unaware of their specific health risks resulting from cancer and its treatment, and compared with their parents, are less afraid of the risks of recurrence and of cancer therapy-associated late effects (n = 528). Web-based platforms such as Passport for Care have enormous potential for improving access to health information, as well as for enhancing patient, family caregiver, and healthcare provider awareness of both risks of late effects and recommended surveillance. Results from this survey also suggest the potential utility of leveraging these tools to conduct additional research on consenting survivors.
Congenital heart diseases (CHDs) are the most common type of birth defects. Improvements in CHD care have led to approximately 1.4 million survivors reaching adulthood. Successful transition and transfer from pediatric to adult care is crucial. Unfortunately, less than 30% of adolescents with CHD successfully transition to adult care; this number is lower for minority and lower socioeconomic status populations. Few CHD programs exist to facilitate successful transition. The goal of our study was to describe the formative research used to develop a prototype mobile app to facilitate transition to adult care for adolescents with CHD. A literature search about best practices in transition medicine for CHD was conducted to inform app development. Formative research with a diverse group of CHD adolescents and their parents was conducted to determine gaps and needs for CHD transition to adult care. As part of the interview, surveys assessing transition readiness and CHD knowledge were completed. Two adolescent CHD expert panels were convened to inform educational content and app design. The literature review revealed 113 articles, of which 38 were studies on transition programs and attitudes and 3 identified best practices in transition specific to CHD. A total of 402 adolescents aged 15 to 22 years (median 16 years) participated in semistructured interviews. The group was racially and ethnically diverse (12.6% [51/402] African American and 37.8% [152/402] Latino) and 42.0% (169/402) female; 36.3% (146/402) received public insurance. Most adolescents (313/402, 76.7%) had moderate or severe CHD complexity and reported minimal CHD understanding (79.0% [275/348] of those aged 15 to 17 years and 61.1% [33/54] of those aged 18 to 22 years). Average initial transition readiness score was 50.9/100, meaning that transition readiness training was recommended. When participants with moderate to severe CHD (313/402, 77.9%) were asked about technology use, 94.2% (295/313) reported having access to a mobile phone. Interviews with parents revealed limited interactions with the pediatric cardiologist about transition-related topics: 79.4% (331/417) reported no discussions regarding future family planning, and 55.2% (230/417) reported the adolescent had not been screened for mental health concerns (depression, anxiety). Further, 66.4% (277/417) reported not understanding how health care changes as adolescents become adults. Adolescents in the expert panels (2 groups of 3 adolescents each) expressed interest in a CHD-specific tailored app consisting of quick access to specific educational questions (eg, “Can I exercise?”), a CHD story-blog forum, a mentorship platform, a question and answer space, and a checklist to facilitate transition. They expressed interest in using the app to schedule CHD clinic appointments and receive medication reminders. Based on this data, a prototype mobile app was created to assist in adolescent CHD transition. Formative research revealed that most adolescents with CHD had access to mobile phones, were not prepared for transition to adult care, and were interested in an app to facilitate transition to adult CHD care. Understanding adolescent and parent needs, interests, and concerns helped in the development of a mobile app with a broader, tailored approach for adolescents with CHD.
Background: Congenital heart diseases (CHDs) are the most common type of birth defects. Improvements in CHD care have led to roughly 1.4 million survivors reaching adulthood. This emerging “survivor” population are often palliated but not cured. Thus successful transition from pediatric to adult care for CHD patients is crucial. Of adults with CHD, <30% are seen by adult CHD physicians. Transition and Transfer rates are even worse for minority and lower socioeconomic status (SES) populations. Few CHD transition programs exist, necessitating creation of a tool to assist in the transition to adult care for a diverse CHD population.
Introduction: Although systematic reviews represent a source of best evidence to support clinical decision-making, reviews are underutilized by clinicians. Barriers include lack of awareness, familiarity, and access. Efforts to promote utilization have focused on reaching practicing clinicians, leaving unexplored the roles of continuing medical education (CME) directors and faculty in promoting systematic review use. This study explored the feasibility of working with CME directors and faculty for that purpose. Methods: A convenience sample of five academic CME directors and faculty agreed to participate in a feasibility study exploring use in CME courses of systematic reviews from the Agency for Healthcare Research and Quality (AHRQ-SRs). AHRQ-SR topics addressed the comparative effectiveness of health care options. Participants received access to AHRQ-SR reports, associated summary products, and instructional resources. The feasibility study used mixed methods to assess 1) implementation of courses incorporating SR evidence, 2) identification of facilitators and barriers to integration, and 3) acceptability to CME directors, faculty, and learners. Results: Faculty implemented 14 CME courses of varying formats serving 1700 learners in urban, suburban, and rural settings. Facilitators included credibility, conciseness of messages, and availability of supporting materials; potential barriers included faculty unfamiliarity with SRs, challenges in maintaining review currency, and review scope. SR evidence and summary products proved acceptable to CME directors, course faculty, and learners by multiple measures. Discussion: This study demonstrates the feasibility of approaches to use AHRQ-SRs in CME courses/programming. Further research is needed to demonstrate generalizability to other types of CME providers and other systemic reviews.
Introduction: Academic detailing uses communication skills, relationship building, and feedback to facilitate behavior change. This report, part of a larger initiative to disseminate evidence summaries of systematic reviews, demonstrates the feasibility of disseminating a comparative effectiveness module to physicians using peer detailers and examines the development of faculty for this process. We describe planning and implementation of a train-the-detailer session, detailer reactions to the process, and results of the dissemination project.Methods: We recruited 10 experienced primary care clinical faculties in Family and Social Medicine at the Albert Einstein College of Medicine. Detailers attended a 90-minute train-the-detailer session and detailed 150 practitioners at community practices. We evaluated the experiences of the learners and detailers with questionnaires, a focus group, and individual interviews of the detailers.Results: The experiences of detailing in different contexts were uniformly positive. Learners felt the materials were valuable, and that they would implement them or already had implemented them. In the postsurvey completed by 65 of the 150 detailed learners, 97% percent stated that they changed their practice or had already incorporated the practice change before the detailing. All detailers reported a change in their own practice. Detailers found the teaching materials and detailers' guide helpful. Some initially expressed a concern about not knowing enough, which lessened with detailing experience.Discussion: Peer detailing seems doable and well received, especially with the availability of high quality, previously prepared, and tested evidence-based content and materials. Detailers were easily recruited and trained to apply their teaching skills in this new format. The amount of time spent in training sessions on detailing training as opposed to content mastery can be adjusted depending on faculty needs.
ObjectiveThe purpose of this study was to explore the transition process in congenital heart disease (CHD) care through the perceived needs and concerns of adolescents (pretransition) and the experiential insight from adults (post-transition), in order to inform future transition initiatives and information delivery methods.DesignIn this cross-sectional study, adolescents and adults with moderate or complex CHD participated in semistructured telephone interviews. Interview transcripts were coded using NVivo qualitative data software.SettingSingle large urban tertiary care CHD centerPatientsAdolescents (between 16 and 20 years of age) and adults (21-40 years of age) with moderate or complex CHD. Patients with global developmental delay or known chromosomal abnormalities were excluded. Twenty adolescents and 20 adults participated in the study; each interview allowed for participants to discuss issues relevant to them.ResultsAmong adolescents, half wanted more CHD information and half were concerned about becoming adults with CHD. All adolescents had access to the Internet via a mobile phone, but only 55% had searched online for CHD information. Adolescents were interested in mentorship with other adolescents (90%) and adults (60%) with CHD either in person or via protected social media. Among adults, 55% were satisfied with the amount of information they had received as adolescents. Areas in which adults would have preferred additional information include longer-term implications of CHD, employment, insurance, family planning, and mental health.ConclusionsThere are similarities and differences in the perceived transition needs of a diverse group of adolescents and adults with CHD. Both cohorts desire additional information during the transition process, including interest in use of a transition checklist to learn about managing their CHD. Adolescents are interested in interactions with other teens and adult mentors with CHD and are open to Internet-based interventions. Web-based initiatives could deliver CHD information and provide a platform for social media mentorship.
Liaison Committee on Medical Education standard MS-8 requires medical schools to partner with other educational institutions or develop programs to make medical education more accessible to potential applicants from diverse backgrounds. From 1994 to the present, Baylor College of Medicine and the University of Texas-Pan American (UTPA) have partnered to offer a BS-MD program to increase access to medical education for students from South Texas, a predominantly Latino, largely medically underserved region. Since its inception in 1994, the Premedical Honors College (PHC) has produced 134 medical school matriculants (as of 2008), an average of 12 students per year since 1998, when the first program graduates matriculated to medical school. This represents a significant increase; only 10 students entered medical school from the region's five undergraduate institutions at baseline year 1994, including six from UTPA. Of those matriculating to medical school, through the PHC 110 (82%) are from underrepresented minority backgrounds, and 106 (79%) are Latino. In addition, the program has produced 65 MDs to date; 55 (85%) are Latino. Twenty PHC participants have already completed residency training and are practicing, 12 of those in or near South Texas. As of 2008, 44 were completing residencies or fellowships, 9 in South Texas, and several have expressed a desire to return to South Texas eventually to practice. Six PHC graduates are academic faculty members (four clinical instructors and two assistant professors), all of them Latino. These results suggest that pipeline strategies involving academic partnerships can have a meaningful impact on diversity in medical education.
BACKGROUND: Women at increased risk of breast cancer (BC) are not widely accepting of chemopreventive interventions, and ethnic minorities are underrepresented in related trials. Furthermore, there is no validated instrument to assess the health-seeking behavior of these women with respect to these interventions. METHODS: By using constructs from the Health Belief Model, the authors developed and refined, based on pilot data, the Breast Cancer Risk Reduction Health Belief (BCRRHB) scale using a population of 265 women at increased risk of BC who were largely medically underserved, of low socioeconomic status (SES), and ethnic minorities. Construct validity was assessed using principal components analysis with oblique rotation to extract factors, and generate and interpret summary scales. Internal consistency was determined using Cronbach alpha coefficients. RESULTS: Test-retest reliability for the pilot and final data was calculated to be r = 0.85. Principal components analysis yielded 16 components that explained 64% of the total variance, with communalities ranging from 0.50-0.75. Cronbach alpha coefficients for the extracted factors ranged from 0.45-0.77. CONCLUSIONS: Evidence suggests that the BCRRHB yields reliable and valid data that allows for the identification of barriers and enhancing factors associated with use of breast cancer chemoprevention in the study population. These findings allow for tailoring treatment plans and intervention strategies to the individual. Future research is needed to validate the scale for use in other female populations. Cancer 2009;115:4907-16. (C) 2009 American Cancer Society.
Context Despite evidence that a variety of continuing medical education (CME) techniques can foster physician behavioral change, there have been no randomized trials comparing performance outcomes for physicians participating in Internet-based CME with physicians participating in a live CME intervention using approaches documented to be effective.Objective To determine if Internet-based CME can produce changes comparable to those produced via live, small-group, interactive CME with respect to physician knowledge and behaviors that have an impact on patient care.Design, Setting, and Participants Randomized controlled trial conducted from August 2001 to July 2002. Participants were 97 primary care physicians drawn from 21 practice sites in Houston, Tex, including 7 community health centers and 14 private group practices. A control group of 18 physicians from these same sites received no intervention.Interventions Physicians were randomly assigned to an Internet-based CME intervention that could be completed in multiple sessions over 2 weeks, or to a single live, small-group, interactive CME workshop. Both incorporated similar multifaceted instructional approaches demonstrated to be effective in live settings. Content was based on the National Institutes of Health National Cholesterol Education Program-Adult Treatment Panel III guidelines.Main Outcome Measures Knowledge was assessed immediately before the intervention, immediately after the intervention, and 12 weeks later. The percentage of high-risk patients who had appropriate lipid panel screening and pharmacotherapeutic treatment according to guidelines was documented with chart audits conducted over a 5-month period before intervention and a 5-month period after intervention.Results Both interventions produced similar and significant immediate and 12-week knowledge gains, representing large increases in percentage of items correct (pretest to posttest: 31.0% [95% confidence interval {CI}, 27.0%-35.0%]; pretest to 12 weeks: 36.4% [95% Cl, 32.2%-40.6%]; P<.001 for all comparisons). Chart audits revealed high baseline screening rates in all study groups (>= 93%) with no significant postintervention change. However, the Internet-based intervention was associated with a significant increase in the percentage of high-risk patients treated with pharmacotherapeutics according to guidelines (preintervention, 85.3%; postintervention, 90.3%; P.=.04).Conclusions Appropriately designed, evidence-based online CME can produce objectively measured changes in behavior as well as sustained gains in knowledge that are comparable or superior to those realized from effective live activities.
The Premedical Honors College (PHC) is an eight-year, BS-MD program created in 1994 by Baylor College of Medicine (BCM) and The University of Texas-Pan American (UT-PA) to increase the number of physicians addressing the health care needs of underserved populations in Texas. The PHC targets South Texas, a 13-county, medically underserved area with a population that is 82% Hispanic. To date, the PHC has had 159 matriculants and 71 graduates, of whom 60 (84.5%) have matriculated into medical school. These results are significant considering that in 1996, only four students from all five South Texas colleges (combined enrollment of 30000 students) were accepted to medical school. An outcomes study comparing PHC matriculants with students of similar academic ability, ethnicity, and interest in medicine revealed that the odds of medical school matriculation were seven times higher for PHC students than for non-PHC students. The PHC's initial success has been acknowledged by the Texas legislature, which recently passed a bill to promote the PHC's replication. In addition, the number of PHC students-of whom 95% are Mexican American-who matriculate into medical school annually is significant nationally. In 2001, only 386 U.S. medical school matriculants (2.3% of all matriculants) were Mexican American; 17 of these students (4.4%) were PHC graduates. If current trends continue, the PHC could significantly expand the number of physicians serving minority and medically underserved populations in Texas and the nation. Also, the PHC provides an opportunity for research on programs designed to create pathways from high school to medical school.
Although the algorithm for generating a best-subsets variable-selection routine in logistic regression was presented more than a decade ago, a search of the literature reveals that the technique is seldom applied. A possible explanation is its omission from popular statistical computing packages. Newer versions of the Statistical Analysis System (SAS) provide limited capabilities, and the Statistical Package for the Social Sciences (SPSS) does not allow for its calculation. Using a sample data set, this article briefly describes in nonmathematical terms how to implement and interpret results from a best-subsets logistic regression using SAS.
A Monte Carlo simulation study compared four bootstrapping procedures in generating confidence intervals for the robust Winsorized and percentage bend correlations. Results revealed the superior resiliency of the robust correlations over r, with neither outperforming the other. Unexpectedly, the bootstrapping procedures achieved roughly equivalent outcomes for each correlation.