A qualitative study of stakeholders' experiences with and acceptability of a technology-supported health coaching intervention (SHARE-S) delivered in coordination with cancer survivorship care.

PURPOSE: Healthy cancer survivorship involves patients' active engagement with preventative health behaviors and follow-up care. While clinicians and patients have typically held dual responsibility for activating these behaviors, transitioning some clinician effort to technology and health coaches may enhance guideline implementation. This paper reports on the acceptability of the Shared Healthcare Actions & Reflections Electronic systems in survivorship (SHARE-S) program, an entirely virtual multicomponent intervention incorporating e-referrals, remotely-delivered health coaching, and automated text messages to enhance patient self-management and promote healthy survivorship. METHODS: SHARE-S was evaluated in single group hybrid implementation-effectiveness pilot study. Patients were e-referred from the clinical team to health coaches for three health self-management coaching calls and received text messages to enhance coaching. Semi-structured qualitative interviews were conducted with 21 patient participants, 2 referring clinicians, and 2 health coaches to determine intervention acceptability (attitudes, appropriateness, suitability, convenience, and perceived effectiveness) and to identify important elements of the program and potential mechanisms of action to guide future implementation. RESULTS: SHARE-S was described as impactful and convenient. The nondirective, patient-centered health coaching and mindfulness exercises were deemed most acceptable; text messages were less acceptable. Stakeholders suggested increased flexibility in format, frequency, timing, and length of participation, and additional tailored educational materials. Patients reported tangible health behavior changes, improved mood, and increased accountability and self-efficacy. CONCLUSIONS: SHARE-S is overall an acceptable and potentially effective intervention that may enhance survivors' self-management and well-being. Alterations to tailored content, timing, and dose should be tested to determine impact on acceptability and outcomes.

Cultural and linguistic adaptation of a telephone-based cognitive-behavioral therapy (CBT) intervention to treat depression and anxiety in Hispanic cancer survivors.

PURPOSE/OBJECTIVES: The purpose of this study was to transcreate a manualized cognitive-behavioral therapy (CBT) intervention to address depression and anxiety among Hispanic cancer survivors. DESIGN/RESEARCH APPROACH: Stakeholders reviewed the CBT workbook for language, content, and cultural relevance. We designed semi-structured interview guides to elicit intervention feedback. SAMPLE/PARTICIPANTS: Stakeholder participants were Hispanic cancer survivors (n = 4), bilingual mental health providers (n = 2), and oncology professionals (n = 4). METHODS: Transcreation was conducted by initial translation of the workbook followed by incorporation of stakeholder feedback. A bilingual (Spanish and English) interviewer conducted stakeholder interviews. The study team discussed themes/suggestions before refining the workbook. FINDINGS: Stakeholders reported enthusiasm for the intervention. We gathered significant feedback regarding wording, images, and resources for the workbook. CONCLUSION: Development of culturally appropriate mental health resources for Hispanic cancer survivors is critical. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS OR POLICY: By broadening research on psychosocial care to the Hispanic population, we increase the reach of evidence-based psychological care. Future research should fully evaluate the adapted CBT intervention among Hispanic survivors.

Pilot study of implementing the Shared Healthcare Actions & Reflections Electronic systems in Survivorship (SHARE-S) program in coordination with clinical care.

INTRODUCTION: Initial cancer survivorship care planning efforts focused on information sharing demonstrated limited impact on patient health outcomes. We designed the Shared Healthcare Actions & Reflections Electronic Systems in survivorship (SHARE-S) program to enhance survivorship guideline implementation by transitioning some effort from clinicians to technology and patients through supporting health self-management (e.g., healthy lifestyles). METHODS: We conducted a single-group hybrid implementation-effectiveness pilot study. SHARE-S incorporated three strategies: (1) e-referral from the clinical team for patient engagement, (2) three health self-management coach calls, and (3) text messages to enhance coaching. Our primary implementation measure was the proportion of patients e-referred who enrolled (target >30%). Secondary implementation measures assessed patient engagement. We also measured effectiveness by describing changes in patient health outcomes. RESULTS: Of the 118 cancer survivor patients e-referred, 40 engaged in SHARE-S (proportion enrolled = 34%). Participants had a mean age of 57.4 years (SD = 15.7), 73% were female, 23% were Black/African American, and 5 (12.5%) were from a rural location. Patient-level adherence to coach calls was >90%. Changes from baseline to follow-up showed at least a small effect (Cohen's d = 0.2) for improvements in: mindful attention, alcohol use, physical activity, fruit and vegetable intake, days of mindfulness practice, depressive symptoms, ability to participate in social roles and activities, cancer-specific quality of life, benefits of having cancer, and positive feelings. CONCLUSION: The SHARE-S program successfully engaged cancer survivor patients. Once enrolled, patients showed promising improvements in health outcomes. Supporting patient self-management is an important component of optimizing delivery of cancer survivorship care.

Adaptation of a Personalized Electronic Care Planning Tool for Cancer Follow-up Care: Formative Study.

BACKGROUND: Most patients diagnosed with colorectal cancer will survive for at least 5 years; thus, engaging patients to optimize their health will likely improve outcomes. Clinical guidelines recommend patients receive a comprehensive care plan (CP) when transitioning from active treatment to survivorship, which includes support for ongoing symptoms and recommended healthy behaviors. Yet, cancer care providers find this guideline difficult to implement. Future directions for survivorship care planning include enhancing information technology support for developing personalized CPs, using CPs to facilitate self-management, and assessing CPs in clinical settings. OBJECTIVE: We aimed to develop an electronic tool for colorectal cancer follow-up care (CFC) planning. METHODS: Incorporating inputs from health care professionals and patient stakeholders is fundamental to the successful integration of any tool into the clinical workflow. Thus, we followed the Integrate, Design, Assess, and Share (IDEAS) framework to adapt an existing application for stroke care planning (COMPASS-CP) to meet the needs of colorectal cancer survivors (COMPASS-CP CFC). Constructs from the Consolidated Framework for Implementation Research (CFIR) guided our approach. We completed this work in 3 phases: (1) gathering qualitative feedback from stakeholders about the follow-up CP generation design and workflow; (2) adapting algorithms and resource data sources needed to generate a follow-up CP; and (3) optimizing the usability of the adapted prototype of COMPASS-CP CFC. We also quantitatively measured usability (target average score ≥70; range 0-100), acceptability, appropriateness, and feasibility. RESULTS: In the first phase, health care professionals (n=7), and patients and caregivers (n=7) provided qualitative feedback on COMPASS-CP CFC that informed design elements such as selection, interpretation, and clinical usefulness of patient-reported measures. In phase 2, we built a minimal viable product of COMPASS-CP CFC. This tool generated CPs based on the needs identified by patient-completed measures (including validated patient-reported outcomes) and electronic health record data, which were then matched with resources by zip code and preference to support patients' self-management. Elements of the CFIR assessed revealed that most health care professionals believed the tool would serve patients' needs and had advantages. In phase 3, the average System Usability Scale score was above our target score for health care professionals (n=5; mean 71.0, SD 15.2) and patients (n=5; mean 95.5, SD 2.1). Participants also reported high levels of acceptability, appropriateness, and feasibility. Additional CFIR-informed feedback, such as desired format for training, will inform future studies. CONCLUSIONS: The data collected in this study support the initial usability of COMPASS-CP CFC and will inform the next steps for implementation in clinical care. COMPASS-CP CFC has the potential to streamline the implementation of personalized CFC planning to enable systematic access to resources that will support self-management. Future research is needed to test the impact of COMPASS-CP CFC on patient health outcomes.

Feasibility of Systems Support Mapping to guide patient-driven health self-management in colorectal cancer survivors.

OBJECTIVE: To evaluate feasibility of System Support Mapping (MAP), a systems thinking activity that involves creating a diagram of existing self-management activities (e.g. symptom management, health behaviors) to facilitate autonomous engagement in optimal self-management. DESIGN: One-arm pilot study of MAP in colorectal cancer survivors (NCT03520283). MAIN OUTCOME MEASURES: Feasibility of recruitment and retention (primary outcome), acceptability, and outcome variability over time. RESULTS: We enrolled 24 of 66 cancer survivors approached (36%) and 20 completed follow-up (83%). Key reasons for declining participation included: not interested (n = 18), did not perceive a need (n = 9), and emotional distress/overwhelmed (n = 7). Most participants reported that MAP was acceptable (e.g. 80% liked MAP quite a bit/very much). Exploratory analyses revealed a -4.68 point reduction in fatigue from before to 2 weeks after MAP exceeding a minimally important difference (d = -0.68). There were also improvements in patient autonomy (d = 0.63), self-efficacy (for managing symptoms: d = 0.56, for managing chronic disease: d = 0.44), psychological stress (d = -0.45), anxiety (d = -0.34), sleep disturbance (d = -0.29) and pain (d = -0.32). Qualitative feedback enhanced interpretation of results. CONCLUSIONS: MAP feasibility in colorectal cancer survivors was mixed, predominantly because many patients did not perceive a need for this approach. MAP was acceptable among participants and showed promise for improving health outcomes.

The experiences of community organizations partnering with a medical school to improve students' understanding of the social determinants of health: A qualitative study.

PURPOSE: There has been increasing interest among national organizations for medical schools to provide students experiential training in the social determinants of health (SDH) through community partnerships. Despite this interest, there is limited data about how these experiential activities can be designed most effectively, and community organizations' views of partnering with medical schools on these curricula is unknown. The authors' objective was to determine community organizations' and clinical clerkship directors' perceptions of the benefits and challenges of utilizing academic-community partnerships to improve medical students' understanding of the SDH. METHODS: The authors conducted a qualitative study consisting of open-ended, semi-structured interviews (between 2018 and 2021). All community organizations and clinical clerkship directors who partnered with a health equity curriculum were eligible to participate. Semi-structured interviews elicited participants' perceptions of the academic-community partnership; experience with the curriculum and the students; and recommendations for improving the curriculum. All interviews were audio recorded and transcribed. The authors used a directed content analysis approach to code the interviews inductively and identified emerging themes through an iterative process. RESULTS: Of the fifteen participants interviewed, ten were from community organizations and five from clinical clerkships. Three primary themes emerged: (1) community organizations felt educating students about the SDH aligned with the organization's mission and they benefited from consistent access to volunteers; (2) students benefited through greater exposure to the SDH; (3) participants suggested standardizing students' experiences, ensuring the students and organizations are clear about the goals and expectations, and working with organizations that have experience with or the capacity for a large volume of volunteers as ways to improve the experiential activity. CONCLUSION: This study found that community organizations were very willing to partner with a medical school to provide students experiential learning about the SDH, and this partnership was beneficial for both the students and the organizations.

Facilitators and Barriers to Implementing a Digital Informed Decision Making Tool in Primary Care: A Qualitative Study.

BACKGROUND: Informed decision aids provide information in the context of the patient's values and improve informed decision making (IDM). To overcome barriers that interfere with IDM, our team developed an innovative iPad-based application (aka "app") to help patients make informed decisions about colorectal cancer screening. The app assesses patients' eligibility for screening, educates them about their options, and empowers them to request a test via the interactive decision aid. OBJECTIVE: The aim of the study is to explore how informed decision aids can be implemented successfully in primary care clinics, including the facilitators and barriers to implementation; strategies for minimizing barriers; adequacy of draft training materials; and any additional support or training desired by clinics. DESIGN: This work deals with a multicenter qualitative study in rural and urban settings. PARTICIPANTS: A total of 48 individuals participated including primary care practice managers, clinicians, nurses, and front desk staff. APPROACH: Focus groups and semi-structured interviews, with data analysis were guided by thematic analysis. KEY RESULTS: Salient emergent themes were time, workflow, patient age, literacy, and electronic health record (EHR) integration. Saving time was important to most participants. Patient flow was a concern for all clinic staff, and they expressed that any slowdown due to patients using the iPad module or perceived additional work to clinic staff would make staff less motivated to use the program. Participants voiced concern about older patients being unwilling or unable to utilize the iPad and patients with low literacy ability being able to read or comprehend the information. CONCLUSION: Integrating new IDM apps into the current clinic workflow with minimal disruptions would increase the probability of long-term adoption and ultimate sustainability. NIH TRIAL REGISTRY NUMBER: R01CA218416-A1.

Stakeholder-informed conceptual framework for financial burden among adolescents and young adults with cancer.

BACKGROUND: Cancer and its treatments can result in substantial financial burden that may be especially distressing for adolescents and young adults (AYAs) since they are at a developmental stage focused on completing one's education and establishing independence. The purpose of this study was to develop a conceptual model of financial burden among AYA cancer patients to inform development of a financial burden measure. METHODS: In-depth concept elicitation interviews were conducted with a purposive-selected stakeholder sample (36 AYAs and 36 AYA oncology health care providers). The constant comparative method was used to identify themes that illustrate AYAs' experience of financial burden by stakeholder groups. RESULTS: Eleven financial burden themes emerged: (1) impact of socioeconomic status and age; (2) significant cancer costs; (3) indirect cost "ripple effects"; (4) limited awareness of costs (adolescents); (5) emotional impact; (6) feeling overwhelmed navigating the health care system; (7) treatment decision modifications; (8) reducing spending; (9) coping strategies; (10) financial support; and (11) long-lasting impact. The conceptual model highlights the importance of material, psychosocial, and behavioral domains of financial burden with an emphasis on phase along the cancer continuum and developmental stage in the experience of financial burden for AYAs. CONCLUSIONS: Issues presented in the voice of AYA patients and providers highlight the profound impact of financial burden in this survivor group. The next step in this work will be to develop and test a patient-reported measure of financial burden among AYA cancer survivors.

A conceptual model of fertility concerns among adolescents and young adults with cancer.

OBJECTIVE: For adolescents and young adults (AYAs), cancer-related fertility concerns (FC) are salient, disruptive, and complex. Clinical communication about FC and fertility preservation options are suboptimal, increasing patient distress. The purpose of this study is to construct a conceptual model of FC among AYAs with cancer to inform future measurement development. METHODS: Concept elicitation interviews were conducted with a purposive sample of stakeholders: 36 AYAs (10 adolescents, 12 emerging adults, and 14 young adults), 36 AYA oncology health care providers, and 12 content experts in cancer-related infertility. The constant comparative method was used to identify themes and properties that illustrate AYAs' conceptualization and/or experience of FC. RESULTS: Thirteen themes characterized FC among AYAs with cancer, varying by stakeholder group and domain affiliations. Themes were grouped by four domains (e.g., affective, information, coping, and logistical), which organized the conceptual model. Affective experiences were further determined to be an important component within the other three domains. AYAs' fertility and fertility preservation experiences were shaped by communication factors and timing factors including placement along the lifespan/cancer continuum. CONCLUSIONS: AYA FC are characterized by uncertainty and confusion that may contribute to future decisional regret or magnify feelings of loss. Results add to previous research by examining individual, relational, and health care factors that fluctuate to inform fertility preservation perceptions and decision-making across the AYA age spectrum. Findings will be used to develop and test new self-report measures of FC among AYAs with cancer and survivors using classic and modern measurement theory approaches.

A qualitative assessment of body image in adolescents and young adults (AYAs) with cancer.

CONTEXT: Among adolescents and young adults (AYAs), cancer and its treatment can disturb body image in distinct ways compared to younger or older individuals. OBJECTIVE: Since AYA body image is not well understood, this study was designed to develop a conceptual framework for body image in AYAs with cancer. METHODS: Concept elicitation interviews were conducted with 36 AYA patients [10 adolescents (15-17 years), 12 emerging adults (18-25 years), 14 young adults (26-39 years)] and health care providers (n = 36). The constant comparative method was used to analyze for themes and properties, with themes considered saturated if they were present and salient across participant sets. RESULTS: Twenty themes emerged from participant data. Three themes illustrate a shared understanding of patients' experience of body image: (1) physical changes produce shifts in identity and experience of self; (2) precancer body image shapes how the AYA experiences cancer-related physical changes, and (3) changes to the body are upsetting. Nine themes were unique to patients while eight themes were unique to providers. Patient body image experiences were found to evolve over time, largely affected by concerns about how others view them. Providers appeared attuned to AYA patient body image but recognized that it is not systematically addressed with patients. CONCLUSION: More striking than differences between patient groups is the consistency of themes that emerged. The conceptual framework of body image developed from these data offers an important step toward addressing body image concerns for AYA patients.

A meta-analysis reveals temperature, dose, life stage, and taxonomy influence host susceptibility to a fungal parasite.

Complex ecological relationships, such as host-parasite interactions, are often modeled with laboratory experiments. However, some experimental laboratory conditions, such as temperature or infection dose, are regularly chosen based on convenience or convention, and it is unclear how these decisions systematically affect experimental outcomes. Here, we conducted a meta-analysis of 58 laboratory studies that exposed amphibians to the pathogenic fungus Batrachochytrium dendrobatidis (Bd) to understand better how laboratory temperature, host life stage, infection dose, and host species affect host mortality. We found that host mortality was driven by thermal mismatches: hosts native to cooler environments experienced greater Bd-induced mortality at relatively warm experimental temperatures and vice versa. We also found that Bd dose positively predicted Bd-induced host mortality and that the superfamilies Bufonoidea and Hyloidea were especially susceptible to Bd. Finally, the effect of Bd on host mortality varied across host life stages, with larval amphibians experiencing lower risk of Bd-induced mortality than adults or metamorphs. Metamorphs were especially susceptible and experienced mortality when inoculated with much smaller Bd doses than the average dose used by researchers. Our results suggest that when designing experiments on species interactions, researchers should carefully consider the experimental temperature, inoculum dose, and life stage, and taxonomy of the host species.

Impacts of thermal mismatches on chytrid fungus Batrachochytrium dendrobatidis prevalence are moderated by life stage, body size, elevation and latitude.

Global climate change is increasing the frequency of unpredictable weather conditions; however, it remains unclear how species-level and geographic factors, including body size and latitude, moderate impacts of unusually warm or cool temperatures on disease. Because larger and lower-latitude hosts generally have slower acclimation times than smaller and higher-latitude hosts, we hypothesised that their disease susceptibility increases under 'thermal mismatches' or differences between baseline climate and the temperature during surveying for disease. Here, we examined how thermal mismatches interact with body size, life stage, habitat, latitude, elevation, phylogeny and International Union for Conservation of Nature (IUCN) conservation status to predict infection prevalence of the chytrid fungus Batrachochytrium dendrobatidis (Bd) in a global analysis of 32 291 amphibian hosts. As hypothesised, we found that the susceptibility of larger hosts and hosts from lower latitudes to Bd was influenced by thermal mismatches. Furthermore, hosts of conservation concern were more susceptible than others following thermal mismatches, suggesting that thermal mismatches might have contributed to recent amphibian declines.

Socioeconomic status and access to care and the incidence of a heart failure diagnosis in the inpatient and outpatient settings.

PURPOSE: Despite well-documented associations of socioeconomic status with incident heart failure (HF) hospitalization, little information exists on the relationship of socioeconomic status with HF diagnosed in the outpatient (OP) setting. METHODS: We used Poisson models to examine the association of area-level indicators of educational attainment, poverty, living situation, and density of primary care physicians with incident HF diagnosed in the inpatient (IP) and OP settings among a cohort of Medicare beneficiaries (n = 109,756; 2001-2013). RESULTS: The age-standardized rate of HF incidence was 35.8 (95% confidence interval [CI], 35.1-36.5) and 13.9 (95% CI, 13.5-14.4) cases per 1000 person-years in IP and OP settings, respectively. The incidence rate differences (IRDs) per 1000 person-years in both settings suggested greater incidence of HF in high- compared to low-poverty areas (IP IRD = 4.47 [95% CI, 3.29-5.65], OP IRD = 1.41 [95% CI, 0.61-2.22]) and in low- compared to high-education areas (IP IRD = 3.73 [95% CI, 2.63-4.82], OP IRD = 1.72 [95% CI, 0.97-2.47]). CONCLUSIONS: Our results highlight the role of area-level social determinants of health in the incidence of HF in both the IP and OP settings. These findings may have implications for HF prevention policies.

Identification of Heart Failure Events in Medicare Claims: The Atherosclerosis Risk in Communities (ARIC) Study.

BACKGROUND: We examined the accuracy of Medicare heart failure (HF) diagnostic codes in the identification of acute decompensated (ADHF and chronic stable (CSHF) HF. METHODS AND RESULTS: Hospitalizations were identified from medical discharge records for Atherosclerosis Risk in Communities (ARIC) study participants with linked Medicare Provider Analysis and Review (MedPAR) files for the years 2005-2009. The ARIC study classification of ADHF and CSHF, based on adjudicated review of medical records, was considered to be the criterion standard. A total 8,239 ARIC medical records and MedPAR records meeting fee-for-service (FFS) criteria matched on unique participant ID and date of discharge (68.5% match). Agreement between HF diagnostic codes from the 2 data sources found in the matched records for codes in any position (κ > 0.9) was attenuated for primary diagnostic codes (κ < 0.8). Sensitivity of HF diagnostic codes found in Medicare claims in the identification of ADHF and CSHF was low, especially for the primary diagnostic codes. CONCLUSION: Matching of hospitalizations from Medicare claims with those obtained from abstracted medical records is incomplete, even for hospitalizations meeting FFS criteria. Within matched records, HF diagnostic codes from Medicare show excellent agreement with HF diagnostic codes obtained from medical record abstraction. The Medicare data may, however, overestimate the occurrence of hospitalized ADHF or CSHF.

Acquired and introduced macroparasites of the invasive Cuban treefrog, Osteopilus septentrionalis.

Because shifts in host-parasite relationships can alter host populations, attention should be given to the parasites that introduced species take with them or acquire in their introduced range. The Cuban treefrog, Osteopilus septentrionalis, is a successful invasive species in Florida with its parasites in the native range being well-documented, but there is a void in the literature regarding what parasites were lost or introduced in its expansion. We necropsied 330 O. septentrionalis from Tampa, FL and compared their macroparasites to those of O. septentrionalis in their native range and to the parasites of anurans native to the Tampa, FL area to determine the species O. septentrionalis likely introduced or acquired in Florida. At least nine parasite species (Aplectana sp., Oswaldocruzia lenteixeirai, Cylindrotaenia americana, Physaloptera sp., Rhabdias sp., Centrorhynchus sp., unidentified trematode metacercariae, unidentified larval acuariids, and unidentified pentastomids) were isolated. We found no differences in parasite communities of adult male and female frogs, which averaged 19.36 parasite individuals and 1.39 parasite species per adult frog, and had an overall prevalence of 77.52%. Acuariid larvae were likely acquired by O. septentrionalis in FL because they are not found in their native range. O. lenteixeirai was likely introduced because it is commonly reported in O. septentrionalis' native range but has never been reported in FL-native anurans. Aplectana sp. is also likely introduced because it has been reported in several anurans in Cuba but only reported once in Florida. O. septentrionalis tended to harbor fewer of its native parasites in the introduced range, which is consistent with the enemy release hypothesis and potentially creates an immunological advantage for this invasive host. Because native populations can be threatened by introduced parasites, there is a need to further explore the frequency and rate at which non-native hosts introduce parasites.

Amphibians acquire resistance to live and dead fungus overcoming fungal immunosuppression.

Emerging fungal pathogens pose a greater threat to biodiversity than any other parasitic group, causing declines of many taxa, including bats, corals, bees, snakes and amphibians. Currently, there is little evidence that wild animals can acquire resistance to these pathogens. Batrachochytrium dendrobatidis is a pathogenic fungus implicated in the recent global decline of amphibians. Here we demonstrate that three species of amphibians can acquire behavioural or immunological resistance to B. dendrobatidis. Frogs learned to avoid the fungus after just one B. dendrobatidis exposure and temperature-induced clearance. In subsequent experiments in which B. dendrobatidis avoidance was prevented, the number of previous exposures was a negative predictor of B. dendrobatidis burden on frogs and B. dendrobatidis-induced mortality, and was a positive predictor of lymphocyte abundance and proliferation. These results suggest that amphibians can acquire immunity to B. dendrobatidis that overcomes pathogen-induced immunosuppression and increases their survival. Importantly, exposure to dead fungus induced a similar magnitude of acquired resistance as exposure to live fungus. Exposure of frogs to B. dendrobatidis antigens might offer a practical way to protect pathogen-naive amphibians and facilitate the reintroduction of amphibians to locations in the wild where B. dendrobatidis persists. Moreover, given the conserved nature of vertebrate immune responses to fungi and the fact that many animals are capable of learning to avoid natural enemies, these results offer hope that other wild animal taxa threatened by invasive fungi might be rescued by management approaches based on herd immunity.