Focus group study of factors relevant to treatment decisions and experiences among patients with symptomatic peripheral artery disease.

BACKGROUND: Clinical guidelines recommend shared decision-making for treatment of peripheral artery disease (PAD), which requires understanding of patient perspectives and preferences. We conducted a focus group study of patients with symptomatic PAD to identify factors important and relevant to treatment choices, and to characterize aspects of the health care process that contribute to positive vs negative experiences apart from the specific treatment(s) received. METHODS: Participants were recruited from an academic medical center over 2 years using a purposeful sampling approach based on a clinical diagnosis of symptomatic PAD (either claudication or chronic limb-threatening ischemia [CLTI]) confirmed by the abnormal ankle or toe brachial index. Focus groups were led by a nonphysician moderator, consisted of 5 to 12 participants, and were conducted separately for patients with CLTI and claudication. Audio recordings converted to verbatim transcripts were used for qualitative analysis. RESULTS: A total of 51 patients (26 with CLTI and 25 with claudication) were enrolled and participated in focus groups. Major themes identified related to treatment preferences and decisions included specific interventions under consideration, the chance of technical success versus failure, anticipated degree of symptom improvement, outcome durability, and risk. Major themes related to the process of care included decision-making input, provider communication and trust, the timeline from diagnosis to definitive treatment, and compartmentalized care (including different venues of care). CONCLUSIONS: The results provide insights into patient preferences, perspectives, and experiences related to PAD treatment. These observations can be used to inform patient-centered approaches to shared decision-making, communication, and assessment of PAD treatment outcomes.

Modifiable risk factors for homebound progression among those with and without dementia in a longitudinal survey of community-dwelling older adults.

BACKGROUND: Being homebound is independently associated with increased mortality but the homebound population is heterogeneous. In order to improve precision medicine, we analyzed potentially modifiable factors that contribute to homebound progression (from independent to needing assistance, to homebound), stratified by dementia status. METHODS: Using National Aging and Trends Survey (NHATS), a nationally-representative, longitudinal annual survey from 2011 to 2017 (n = 11,528), we categorized homebound progression if one transitioned from independent or needing assistance to homebound, including competing risks of institutionalization or death between 2011 and last year of data available for each unique respondent. Using proportional hazards regression, we calculated hazard ratios of potentially modifiable risk factors on homebound progression. RESULTS: Depressive symptoms, mobility impairment, and pain increased risk of homebound progression regardless of dementia status. Social isolation increased risk of homebound progression only among those without dementia at baseline. CONCLUSION: Future clinical care and research should focus on the treatment of depressive symptoms, mobility, and pain to potentially delay progression to homebound status.

Cumulative Number of Treatment Interventions Predicts Health-Related Quality of Life in Patients with Critical Limb Ischemia.

BACKGROUND: Health-related quality of life (QOL) is usually assessed after a defined interval following a single intervention, but critical limb ischemia (CLI) is a chronic condition where multiple interventions are often required over a patient's lifetime. We hypothesized that the impact of CLI treatment interventions on QOL is diminished in the setting of multiple previous interventions. To test this hypothesis, we performed a cross-sectional study evaluating associations between cumulative number of previous peripheral artery disease (PAD) treatment interventions and QOL adjusting for both comorbidity and disease severity. METHODS: Participants with CLI (abnormal ankle brachial index [ABI] plus rest pain and/or tissue loss) were enrolled in a cross-sectional study and completed a disease-specific QOL assessment, (the Vascular Quality of Life Questionnaire-6 [VascuQol-6]). Minimum ABI was used to assess disease severity, and comorbidity was evaluated based on Charlson Comorbidity Index. Cumulative number of PAD treatment interventions was defined based on the lifelong total for both legs. QOL associations were evaluated using a multivariable linear regression model adjusted for age and gender. RESULTS: Thirty-two patients with CLI participated. Mean age was 63 ± 10 years, 72% were men, and 63% were white; mean ABI was 0.6 ± 0.2. Mean VQ-6 score was 11.6 ± 4.2, and QOL was lower in patients with more previous interventions. Multivariable models demonstrated that an increasing number of previous treatment interventions negatively impacted QOL (P = 0.047), whereas positive associations were identified for female gender (P = 0.006) and ABI (P = 0.006). No association between comorbidity and QOL was identified. CONCLUSIONS: Vascular-specific factors appear to be key determinants of QOL among patients with CLI, whereas comorbidity appears less important. Strategies focused on definitive and durable revascularization may reduce cumulative interventions and potentially maximize QOL for patients with CLI.

Exploring patient involvement in decision making for vascular procedures.

BACKGROUND: Developing patient-centered approaches to health care requires increased engagement of patients in their own care, including treatment decisions. Current levels of patient involvement in treatment choices have not been quantified, however, and whether patients desire greater decision-making responsibility is unknown. We conducted a prospective study to explore patients' desired vs experienced roles in treatment decisions, characterize perceptions of treatment outcomes, and identify important sources of information. METHODS: Patients undergoing elective vascular procedures completed a survey consisting of multiple choice, Likert scale, and open-ended questions. Statistics are displayed as mean ± standard deviation or count (%). Differences among procedure categories were evaluated using χ(2) or the Fisher exact test at P < .05 based on responses scored 1 to 2, indicating importance, agreement, or satisfaction based on a 1 to 5 Likert scale where 1 = "very important," "strongly agree" or "very satisfied". RESULTS: Of 101 patients who were contacted, 81 participated. Procedure categories included abdominal aortic aneurysm (AAA) repair in 20, arteriovenous (AV) hemodialysis access in 21, carotid endarterectomy (CEA) in 20, and intervention for lower extremity peripheral arterial disease (PAD) in 20. Participants preferred discussion of all treatments being considered vs only the provider's recommended treatment (90% vs 56%) and choosing together with the provider vs having the provider choose for them (93% vs 62%). Although participants indicated adequate information to ask questions without feeling overwhelmed, only 77% agreed that they had the opportunity to ask questions and only 54% indicated that they were offered a choice. Thirty-seven participants (46%) considered their first treatment was successful, 38% considered a subsequent treatment was successful, and 16% considered none of their treatments were successful. Participants undergoing PAD and AV access procedures most often felt confused or overwhelmed (25% and 24%, respectively, vs 0% for AAA and CEA; P < .01). Patients with PAD had adequate information least often (70% vs 85% for AAA, 100% for AV access, and 95% for CEA; P = .01), had the lowest satisfaction with understanding of their diagnosis (65% vs 95% for AAA, 100% for AV access, and 95% for CEA; P < .01), and most often considered none of their treatments successful (35% vs 0% for AAA, 15% for AV access, and 15% for CEA; P = .02). Providers were identified as the most important information source. CONCLUSIONS: Patients have variable levels of participation in decision making related to vascular procedures and often consider their treatments unsuccessful. Although providers are important sources of information, patients still prefer to discuss all options being considered and contribute to shared decision making.

Implementing the learning health system paradigm within academic health centers.

Introduction: The learning health system (LHS) concept represents a bold innovation that combines organizational learning, strategic analysis of patient data, stakeholder engagement and the systematic translation of research into practice - all in service of improving the quality of health care delivered across the organization. This innovation has been diffused and widely adopted by healthcare organizations over the past 15 years, but academic health centers (AHCs) have been slower on the uptake. The irony is that AHCs have the resources (e.g., trained researchers, sophisticated clinical data systems, informatics infrastructure) that are necessary to do the highest-quality and most impactful LHS work. Methods: Based on a review of publications describing how AHCs have implemented LHS work, as well as the authors' direct experience promoting the adoption of the LHS paradigm at Atrium Health Wake Forest Baptist (AHWFB), we:identify a set of factors that have inhibited broader adoption of the LHS paradigm among AHCs; distinguish between the forms of LHS work that are consistent and inconsistent with the mission of AHCs; and offer recommendations for broader adoption and fuller implementation of the LHS paradigm. Results: The LHS paradigm represents an expansion of the scientific paradigm which serves as the foundation of research enterprise within AHCs. Both paradigms value rigorous studies of new treatments and practices, including pragmatic clinical trials. The LHS paradigm also places a high value on quality improvement studies, organizational learning, and the translation of research findings into improved patient care and operations within the local health system. The two paradigms differ on the origin of the research question, i.e., a pressing patient-care issue facing the health system versus the investigator's own research interests. Academic researchers have been disincentivized from pursuing at least some forms of LHS research. However, a growing number of AHCs are finding ways to integrate the LHS paradigm into their research enterprise, either by providing research faculty with institutional funding to cover their effort on studies that address the health system's priority issues, or by establishing an institute dedicated to LHS research. Conclusions: The LHS paradigm is a disruptive intervention for AHCs, one that was initially resisted but is increasingly being embraced. AHCs are developing strategies for conducting LHS research, typically in parallel to the more traditional biomedical science that is core to academic medicine. Full implementation of the LHS paradigm will require further alignment between LHS and science, including a shift in the criteria for promotion and tenure to support those researchers who choose to focus on the pressing issues facing the health system.

Factors associated with collaboration among agencies serving children with complex chronic conditions.

Our objective was to identify agency-level factors that increase collaborative relationships between agencies that serve children with complex chronic conditions (CCC). We hypothesized that an agency will collaborate with more partners in the network if the agency had a coordinator and participated in a community coalition. We surveyed representatives of 63 agencies that serve children with CCC in Forsyth County, North Carolina about their agencies' collaborations with other agencies. We used social network analytical methods and exponential random graph analysis to identify factors associated with collaboration among agencies. The unit of analysis was the collaborative tie (n = 3,658) between agencies in the network. Agencies participating in a community coalition were 1.5 times more likely to report collaboration than agencies that did not participate in a coalition. Presence of a coordinator in an agency was not associated with the number of collaborative relationships. Agencies in existence for a longer duration (≥11 vs. ≤10 years; adjusted odds ratio (aOR): 2.1) and those with a higher proportion of CCC clientele (aOR: 2.1 and 1.6 for 11-30 % and ≥31 % compared to ≤10 %) had greater collaboration. Care coordination agencies and pediatric practices reported more collaborative relationships than subspecialty clinics, home-health agencies, durable medical equipment companies, educational programs and family-support services. Collaborative relationships between agencies that serve children with CCC are increased by coalition participation, longer existence and higher CCC clientele. Future studies should evaluate whether interventions to improve collaborations among agencies will improve clinical outcomes of children with CCC.

The Academic Learning Health System: A Framework for Integrating the Multiple Missions of Academic Medical Centers.

The learning health system (LHS) has emerged over the past 15 years as a concept for improving health care delivery. Core aspects of the LHS concept include: promoting improved patient care through organizational learning, innovation, and continuous quality improvement; identifying, critically assessing, and translating knowledge and evidence into improved practices; building new knowledge and evidence around how to improve health care and health outcomes; analyzing clinical data to support learning, knowledge generation, and improved patient care; and engaging clinicians, patients, and other stakeholders in processes of learning, knowledge generation, and translation. However, the literature has paid less attention to how these LHS aspects may integrate with the multiple missions of academic medical centers (AMCs). The authors define an academic learning health system (aLHS) as an LHS built around a robust academic community and central academic mission, and they propose 6 features that emphasize how an aLHS differs from an LHS. An aLHS capitalizes on embedded academic expertise in health system sciences; engages the full spectrum of translational investigation from mechanistic basic sciences to population health; builds pipelines of experts in LHS sciences and clinicians with fluency in practicing in an LHS; applies core LHS principles to the development of curricula and clinical rotations for medical students, housestaff, and other learners; disseminates knowledge more broadly to advance the evidence for clinical practice and health systems science methods; and addresses social determinants of health, creating community partnerships to mitigate disparities and improve health equity. As AMCs evolve, the authors expect that additional differentiating features and ways to operationalize the aLHS will be identified and hope this article stimulates further discussion around the intersection of the LHS concept and AMCs.

Participatory logic modeling in a multi-site initiative to advance implementation science.

BACKGROUND: Logic models map the short-term and long-term outcomes that are expected to occur with a program, and thus are an essential tool for evaluation. Funding agencies, especially in the United States (US), have encouraged the use of logic models among their grantees. They also use logic models to clarify expectations for their own funding initiatives. It is increasingly recognized that logic models should be developed through a participatory approach which allows input from those who carry out the program being evaluated. While there are many positive examples of participatory logic modeling, funders have generally not engaged grantees in developing the logic model associated with their own initiatives. This article describes an instance where a US funder of a multi-site initiative fully engaged the funded organizations in developing the initiative logic model. The focus of the case study is Implementation Science Centers in Cancer Control (ISC3), a multi-year initiative funded by the National Cancer Institute. METHODS: The reflective case study was collectively constructed by representatives of the seven centers funded under ISC3. Members of the Cross-Center Evaluation (CCE) Work Group jointly articulated the process through which the logic model was developed and refined. Individual Work Group members contributed descriptions of how their respective centers reviewed and used the logic model. Cross-cutting themes and lessons emerged through CCE Work Group meetings and the writing process. RESULTS: The initial logic model for ISC3 changed in significant ways as a result of the input of the funded groups. Authentic participation in the development of the logic model led to strong buy-in among the centers, as evidenced by their utilization. The centers shifted both their evaluation design and their programmatic strategy to better accommodate the expectations reflected in the initiative logic model. CONCLUSIONS: The ISC3 case study demonstrates how participatory logic modeling can be mutually beneficial to funders, grantees and evaluators of multi-site initiatives. Funded groups have important insights about what is feasible and what will be required to achieve the initiative's stated objectives. They can also help identify the contextual factors that either inhibit or facilitate success, which can then be incorporated into both the logic model and the evaluation design. In addition, when grantees co-develop the logic model, they have a better understanding and appreciation of the funder's expectations and thus are better positioned to meet those expectations.

Participatory Logic Modeling in a Multi-Site Initiative to Advance Implementation Science.

Background: It is increasingly being recognized that logic models should be developed through a participatory approach which allows input from those who carry out the program being evaluated. While there are many positive examples of participatory logic modeling, funders have generally not used this approach in the context of multi-site initiatives. This article describes an instance where the funder and evaluator of a multi-site initiative fully engaged the funded organizations in developing the initiative logic model. The focus of the case study is Implementation Science Centers in Cancer Control (ISC 3 ), a multi-year initiative funded by the National Cancer Institute (NCI). Methods: The case study was collectively constructed by representatives of the seven centers funded under ISC 3 . Members of the Cross-Center Evaluation (CCE) Work Group jointly articulated the process through which the logic model was developed and refined. Individual Work Group members contributed descriptions of how their respective centers reviewed and used the logic model. Cross-cutting themes and lessons emerged through CCE Work Group meetings and the writing process. Results: The initial logic model for ISC 3 changed in significant ways as a result of the input of the funded groups. Authentic participation in the development of the logic model led to strong buy-in among the centers, as evidenced by their utilization. The centers shifted both their evaluation design and their programmatic strategy to better accommodate the expectations reflected in the initiative logic model. Conclusions: The ISC 3 case study provides a positive example of how participatory logic modeling can be mutually beneficial to funders, grantees and evaluators of multi-site initiatives. Funded groups have important insights about what is feasible and what will be required to achieve the initiative's stated objectives. They can also help identify the contextual factors that either inhibit or facilitate success, which can then be incorporated into both the logic model and the evaluation design. In addition, when grantees co-develop the logic model, they have a better understanding and appreciation of the funder's expectations, and thus are better positioned to meet those expectations.

Clarifying the concept of a learning health system for healthcare delivery organizations: Implications from a qualitative analysis of the scientific literature.

The "learning health system" (LHS) concept has been defined in broad terms, which makes it challenging for health system leaders to determine exactly what is required to transform their organization into an LHS. This study provides a conceptual map of the LHS landscape by identifying the activities, principles, tools, and conditions that LHS researchers have associated with the concept. Through a multi-step screening process, two researchers identified 79 publications from PubMed (published before January 2020) that contained information relevant to the question, "What work is required of a healthcare organization that is operating as an LHS?" Those publications were coded as to whether or not they referenced each of 94 LHS elements in the taxonomy developed by the study team. This taxonomy, named the Learning Health Systems Consolidated Framework (LHS-CF), organizes the elements into five "bodies of work" (organizational learning, translation of evidence into practice, building knowledge, analyzing clinical data, and engaging stakeholders) and four "enabling conditions" (workforce skilled for LHS work, data systems and informatics technology in place, organization invests resources in LHS work, and supportive organizational culture). We report the frequency that each of the 94 elements was referenced across the 79 publications. The four most referenced elements were: "organization builds knowledge or evidence," "quality improvement practices are standard practice," "patients and family members are actively engaged," and "organizational culture emphasizes and supports learning." By dissecting the LHS construct into its component elements, the LHS-CF taxonomy can serve as a useful tool for LHS researchers and practitioners in defining the aspects of LHS they are addressing. By assessing how often each element is referenced in the literature, the study provides guidance to health system leaders as to how their organization needs to evolve in order to become an LHS - while also recognizing that each organization should emphasize elements that are most aligned with their mission and goals.

Collaboration networks of the implementation science centers for cancer control: a social network analysis.

BACKGROUND: Multi-center research initiatives offer opportunities to develop and strengthen connections among researchers. These initiatives often have goals of increased scientific collaboration which can be examined using social network analysis. METHODS: The National Cancer Institute (NCI)-funded Implementation Science Centers in Cancer Control (ISC3) initiative conducted an online social network survey in its first year of funding (2020) to (1) establish baseline network measures including the extent of cross-center collaboration and (2) assess factors associated with a network member's access to the network such as one's implementation science (IS) expertise. Members of the seven funded centers and NCI program staff identified collaborations in planning/conducting research, capacity building, product development, scientific dissemination, and practice/policy dissemination. RESULTS: Of the 192 invitees, 182 network members completed the survey (95%). The most prevalent roles were faculty (60%) and research staff (24%). Almost one-quarter (23%) of members reported advanced expertise in IS, 42% intermediate, and 35% beginner. Most members were female (69%) and white (79%). One-third (33%) of collaboration ties were among members from different centers. Across all collaboration activities, the network had a density of 14%, suggesting moderate cohesion. Degree centralization (0.33) and betweenness centralization (0.07) measures suggest a fairly dispersed network (no single or few central member(s) holding all connections). The most prevalent and densely connected collaboration was in planning/conducting research (1470 ties; 8% density). Practice/policy dissemination had the fewest collaboration, lowest density (284 ties' 3% density), and the largest number of non-connected members (n=43). Access to the ISC3 network varied significantly depending on members' level of IS expertise, role within the network, and racial/ethnic background. Across all collaboration activities, most connected members included those with advanced IS expertise, faculty and NCI staff, and Hispanic or Latino and white members. CONCLUSIONS: Results establish a baseline for assessing the growth of cross-center collaborations, highlighting specific areas in need of particular growth in network collaborations such as increasing engagement of racial and ethnic minorities and trainees or those with less expertise in IS.

Randomized controlled trial evaluating a collaborative model of care for transitioning children with medical complexity from hospital to home healthcare: Study protocol.

This article describes the study protocol for an evaluation of an innovative model of care that supports home health nurses (HHN) who serve children with medical complexity (CMC). CMC constitute a small proportion of children, but have very high need for health services, are hospitalized frequently, and account for significant proportion of pediatric healthcare expenditures. High-quality home health nursing services are important for CMC, but models of care of home healthcare, after discharge of CMC from the hospital, have not been tested. Our project aims are to develop, implement, and test a model of care, called ICollab, to improve home healthcare delivery for CMC. The ICollab model consists of collaboration between HHN, primary-care physicians and clinicians of the complex care program of a tertiary-care children's hospital in the care of CMC. In this randomized clinical trial, we will recruit 110 CMC discharged home on home health nursing services. The intervention group (n = 55) will receive the ICollab intervention for 6 months post-discharge from the hospital, in addition to usual care. Children in the control group (n = 55) will receive only usual care. Outcome measures will include healthcare utilization metrics (hospitalization rates, emergency room visit rates, and days to readmission), caregiver burden and caregiver satisfaction with home healthcare, HHN retention, and HHN collaboration with other healthcare providers. We hypothesize that ICollab will reduce healthcare utilization and caregiver burden, and improve caregiver satisfaction with home healthcare, increase HHN retention, and increase HHN collaboration with other healthcare providers. Results of this study have the potential to provide a critically needed evidence-base for interventions to improve the quality of healthcare delivery for CMC. This study is registered on clinicaltrials.gov (NCT03978468) and is ongoing.

Inter-agency collaboration in the care of children with complex chronic conditions.

OBJECTIVES: The purpose of this article was to describe the network of collaboration among agencies that serve children with complex chronic conditions (CCCs) and identify gaps in the network. METHODS: We surveyed representatives from agencies that serve children with CCCs in Forsyth County, North Carolina, about their agencies' existing and desired collaborations with other agencies in the network. We used Social Network Analytical (SNA) methods to describe gaps in the network. Mean out-degree and in-degree centrality (number of collaborative ties extending from or directed toward an agency) and density (ratio of extant ties to all possible ties) were measured. RESULTS: In this network with 3658 possible collaborative ties, care-coordination agencies and pediatric practices reported the highest existing collaborations with other agencies (out-degree centrality: 32 and 30, respectively). Pediatric practices reported strong ties with subspecialty clinics (density: 73%), but weak ties with family support services (density: 3%). Pediatric practices and subspecialty clinics (in-degree: 26) received the highest collaborative ties from other agencies. Support services and durable medical equipment (DME) companies reported low ties with other agencies (out-degree: 7 and 10, respectively). Nursing agencies reported the highest desired collaborations (out-degree: 18). Support services, pediatric practices, and care-coordination programs had the highest in-degree centrality (7, 6, and 6, respectively) for desired collaborations. Nursing agencies and support services had the greatest gaps in collaboration. CONCLUSION: Although collaboration exists among agencies serving children with CCCs, there are many gaps in the network. Future studies should explore barriers and facilitators to inter-agency collaborations and whether increased collaboration in the network improves patient-level outcomes.

Smoking behaviour and attitudes of Hungarian Roma and non-Roma population towards tobacco control policies.

OBJECTIVES: To assess the smoking status and support for tobacco control policies among the Roma minority compared with the non-Roma population in Hungary. METHODS: A cross-sectional survey was delivered among Roma minority and local non-Roma population; 83 Roma and 126 non-Roma people were interviewed. Chi-square tests and logistic regression were applied to compare Roma and non-Roma populations. RESULTS: The prevalence of smoking was significantly higher and the support for tobacco control measures was significantly lower in the Roma population. This effect of ethnicity on attitudes toward tobacco control was explained somewhat, but not completely, by the Roma group's higher rate of smoking and lower level of education. CONCLUSIONS: Tobacco control policies are a proven strategy for denormalizing smoking and discouraging initiation. This strategy has important potential for Roma communities because of their high rates of tobacco use. However, this study shows that the Roma are resistant the efforts to limit smoking. Changing these attitudes will require targeted public health interventions that take into account not only the lower educational levels of the Roma, but also their cultural beliefs regarding tobacco.