Bridging Research, Accurate Information and Dialogue (BRAID): A Novel Strategy to Build Community Trust.

BACKGROUND: Efforts to promote COVID-19 vaccination uncovered the effects of longstanding structural racism and perpetuated the erosion of community trust in science and public health institutions. Rebuilding trust is a priority to overcome barriers to vaccine uptake. Bridging Research, Accurate Information and Dialogue (BRAID) is a model that combines several evidence-based approaches to nurture trusting relationships with community experts, leading to the dissemination of accurate, timely, and acceptable COVID-19 vaccine messages. OBJECTIVE: To describe an innovative community-engaged participatory research model with the potential to build trust and spread accurate health information through social networks. METHODS: BRAID provided safe spaces for a series of facilitated conversation circles involving trusted community experts and invited clinicians and scientists. Community experts were encouraged to share their experiences, raise concerns, and ask pandemic-related questions in an informal setting. Community experts were empowered to codesign and coproduce accurate health messages acceptable to their communities. To gain insight into the process of building trust, dialogues involving 22 community experts were transcribed and coded, and post survey data from 21 participants were analyzed. CONCLUSIONS: BRAID is a manualized community engagement model that aims to build the trust needed to improve COVID-19 vaccine uptake in historically marginalized communities. Through BRAID, participants developed increased trust in health systems and research. By empowering community experts to share information through their established social networks, BRAID has the potential to amplify the reach and impact of communications regarding health topics that are controversial and divisive, such as COVID-19 vaccination.

Emerging priorities and concerns in the wake of the COVID-19 pandemic: qualitative and quantitative findings from a United States national survey.

Purpose: The present study examines how the coronavirus disease 2019 (COVID-19) experience affected values and priorities. Methods: This cross-sectional study collected data between January and April 2023, from 1,197 individuals who are chronically ill or part of a general population sample. Using open-ended prompts and closed-ended questions, we investigated individuals' perceptions about COVID-19-induced changes in what quality of life means to them, what and who are important, life focus, and changes in norms and stressors. Data analyses included content and psychometric analysis, leading to latent profile analysis (LPA) to characterize distinct groups, and analysis of variance and chi-squared to compare profile groups' demographic characteristics. Results: About 75% of the study sample noted changes in values and/or priorities, particularly in the greater prominence of family and friends. LPA yielded a four-profile model that fit the data well. Profile 1 (Index group; 64% of the sample) had relatively average scores on all indicators. Profile 2 (COVID-Specific Health & Resignation to Isolation Attributable to COVID-19; 5%) represented COVID-19-specific preventive health behaviors along with noting the requisite isolation and disengagement entailed in the social distancing necessary for COVID-19 prevention. Profile 3 (High Stress, Low Trust; 25%) represented high multi-domain stress, with the most elevated scores both on focusing on being true to themselves and perceiving people to be increasingly uncivil. Profile 4 (Active in the World, Low Trust; 6%) was focused on returning to work and finding greater meaning in their activities. These groups differed on race, marital status, difficulty paying bills, employment status, number of times they reported having had COVID-19, number of COVID-19 boosters received, whether they had Long COVID, age, BMI, and number of comorbidities. Conclusion: Three years after the beginning of the worldwide COVID-19 pandemic, its subjective impact is notable on most study participants' conceptualization of quality of life, priorities, perspectives on social norms, and perceived stressors. The four profile groups reflected distinct ways of dealing with the long-term effects of COVID-19.

When better is the enemy of good: two cautionary tales of conceptual validity versus parsimony in clinical psychometric research.

This paper presents an empirical challenge to the assumption that an item-response theory analysis always yields a better measure of a clinical construct. We summarize results from two measurement development studies that showed that such an analysis lost important content reflecting the conceptual model ("conceptual validity"). The cost of parsimony may thus be too high. Conceptual models that form the foundation of QOL measurement reflect the patient's experience. This experience may include concepts and items that are psychometrically "redundant" but capture distinct features of the concept. Good measurement is likely a balance between relying on IRT's quantitative metrics and recognizing the importance of conceptual validity and clinical utility.

Functional Status Correlates of Change and Stability in Appraisal after Spine Surgery: Earlier versus Later Effects.

Spine surgery generally yields a notable improvement in patients' health state, and there is variability in measured patient outcomes after spine surgery. The present work aimed to describe for clinicians how appraisal underlies their patients' experience of healthcare interventions. This prospective longitudinal cohort study (n = 156) included adults undergoing spine surgery for degenerative spinal conditions. The analysis was a descriptive illustration of the relationship between change in the spine-related disability using the Oswestry Disability Index and change in cognitive-appraisal processes using the Quality-of-Life Appraisal Profilev2-Short Form, early versus later during the recovery trajectory (i.e., between baseline and 3 months post-surgery; and between 3 and 12 months post-surgery). Cognitive-appraisal processes related to Sampling of Experience showed greater change soon after surgery, whereas Standards of Comparison appraisals changed more later in the recovery trajectory. Different appraisal processes were emphasized by patients who reported worsening of the spine-related disability, as compared to those who reported no change or improvement. These findings suggest that changes in appraisal differ depending on the individual's experience of the impact of spine surgery. Appraisal processes thus reflect an ongoing dynamic in adaptation to changing function.

Reserve-building as a buffer for depression among individuals living with disability: a longitudinal study of current activities related to brain health.

Aims: This study examined whether reserve-building activities are associated with attenuated reported depression among people who were disabled from work due to a medical condition as compared to employed, retired, and unemployed participants. Methods: This secondary analysis included 771 individuals who provided data at three time points: baseline (late Spring 2020), follow-up 1 (Spring 2021), and follow-up 2 (Fall 2021). The DeltaQuest Reserve-Building Measure assessed current activities related to brain health. An analysis of variance and Pearson correlation coefficients assessed group differences in reserve-building activity scores. Classification and regression tree (CART) modeling investigated factors associated with higher and lower reported depression by employment group. The random effects (RE) models tested two buffering hypotheses: (1) comparing all groups to the employed group and (2) examining within-group effects. Results: Engaging in outdoor activities, exercise, and religious/spiritual activities was associated with reduced depression over time in the overall sample. While disabled participants endorsed lower levels of being Active in the World, Outdoor activities, and Exercise and higher levels of Inner Life and Passive Media Consumption than the other employment groups, more reserve-building activities distinguished depression levels in the disabled group's CART models compared to the others. Among the disabled, unemployed, and retired participants, engaging in any reserve-building activities was also associated with lower depression scores, which was distinct from the employed participants. In the RE models that used the employed group as the reference category, only the disabled group's level of depression was buffered by engaging in creative activities. In the within-group RE models, the disabled group's engagement in Religious/Spiritual, Outdoors, and Games was associated with substantially reduced within-group depression, which was different from the other employment groups. In contrast, reserve-building activities were not implicated at all as buffers for employed participants. Conclusion: This study revealed a beneficial effect of reserve-building activities on buffering depression over time during the COVID-19 pandemic, particularly for disabled people. It documented that even if such individuals engaged in lesser amounts of such activities as compared to other employment groups, the buffering effect was substantial. Given the low-cost and accessible nature of reserve-building activities, it would be worthwhile to encourage such activities for disabled individuals.

Mental health after lumbar spine surgery: cognitive appraisal processes and outcome in a longitudinal cohort study.

BACKGROUND CONTEXT: A not uncommon finding following spine surgery is that many patients do not achieve mental health improvement up to population norms for their age cohort, despite improvement in pain and functioning. PURPOSE: This study examined how patients who were categorized as depressed versus not depressed think about health-related quality of life as assessed by cognitive-appraisal processes. It examined cross-sectional and longitudinal differences over 12 months postsurgery. DESIGN: Prospective longitudinal cohort study with data collected at presurgery and at ∼3- and ∼12-months postsurgery from August 2013 to August 2023. PATIENT SAMPLE: We included 173 adults undergoing lumbar spine surgery for degenerative spinal conditions at an academic medical center. The study sample was 47% female, with a mean age of 61 (SD=15.0), and a median level of education of college graduate. OUTCOME MEASURES: Depression was defined as a Mental Component Score (MCS)≤38 on the Rand-36, building on studies that equated MCS scores with significant depression as assessed by clinically validated depression scales. The Quality-of-Life Appraisal Profile assessed the cognitive-appraisal domains of Experience Sampling and Standards of Comparison. METHODS: The analysis focused on two comparisons: cross-sectionally comparing those who were not depressed (n=82) to those who were depressed (n=77) at baseline; and comparing longitudinal trajectories among those depressed before surgery and improved (n=54) versus did not improve (n=23). T-tests characterized group differences in appraisal endorsement; analysis of variance evaluated appraisal items in terms of explained variance; and Pearson correlation coefficients assessed direction of association in predicting mental health. RESULTS: There were presurgical and longitudinal differences in both cognitive appraisal domains. Before surgery, depressed patients were less likely than nondepressed patients to endorse emphasizing the positive; more likely to focus on worst moments, recent flare-ups, their spinal condition, and the future; and more likely to compare themselves to high aspirations (eg, perfect health). Over time, among those who were depressed before surgery, those who improved focused decreasingly on worst moments and on the time before their spinal condition, and increasingly on emphasizing the positive and balancing the positives/negatives. Appraisal explained more variance in mental health among those who did not improve as compared to those who did, at all timepoints. All appraisal items were more highly correlated with mental health among those who remained depressed as compared to those who improved, particularly over time. CONCLUSIONS: Endorsement of cognitive appraisal processes was different for depressed versus nondepressed spine-surgery patients before surgery and distinguished those who were depressed before surgery and improved versus those who did not improve. These findings suggest that targeted interventions could be beneficial for addressing mental health concerns during the spine surgery recovery trajectory. These interventions might use appraisal measures to identify patients likely to remain depressed after surgery, and then focus on helping these patients shift their focus and standards of comparison.

Individual differences in the long-term impact of the pandemic: moderators of COVID-related hardship, worry, and social support.

PURPOSE: Understanding people's response to the pandemic needs to consider individual differences in priorities and concerns. The present study sought to understand how individual differences in cognitive-appraisal processes might moderate the impact of three COVID-specific factors-hardship, worry, and social support-on reported depression. METHODS: This longitudinal study of the psychosocial impact of the COVID-19 pandemic included 771 people with data at three timepoints over 15.5 months. Participants were recruited from panels of chronically ill or general population samples. Depression was measured by an item response theory validated depression index created using items from existing measures that reflected similar content to the Patient Health Questionnaire-8. COVID-specific factors of hardship, worry, and social support were assessed with items compiled by the National Institutes of Health. The Quality of Life Appraisal Profilev2 Short-Form assessed cognitive appraisal processes. A series of random effects models examined whether appraisal moderated the effects of hardship, worry, and social support on depression over time. RESULTS: Over time the association between low social support and depression was greater (p = 0.0181). Emphasizing the negative was associated with exacerbated depression, in particular for those with low social support (p = 0.0007). Focusing on demands and habituation was associated with exacerbated depression unless one experienced greater hardship (p = 0.0074). There was a stronger positive connection between recent changes and depression for those people with higher worry scores early in the pandemic as compared to later, but a stronger positive correlation for those with lower worry scores later in the pandemic (p = 0.0015). Increased endorsement of standards of comparison, emphasizing the negative, problem goals, and health goals was associated with worse depression scores (all p < 0.0001). People who were younger, disabled, or had greater difficulty paying bills also reported worse depression (p < 0.0001, 0.0001, and 0.002, respectively). CONCLUSION: At the aggregate level, COVID-specific stressors changed over the course of the pandemic, whereas depression and social-support resources seemed stable. However, deeper analysis revealed substantial individual differences. Cognitive-appraisal processes showed considerable variability across individuals and moderated the impact of COVID-specific stressors and resources over time. Future work is needed to investigate whether coaching individuals away from maladaptive cognitive-appraisal processes can reduce depression and lead to better overall well-being.

Respondent Driven Sampling Method of Recruitment for a Case Control Study of Gastric Cancer Risk.

OBJECTIVE: Gastric cancer (GC) disproportionately affects ethnic minorities in the US including Asians and Pacific Islanders. Research with minority groups who are at high risk are needed to provide more effective treatment. Successful recruitment of minorities to research must overcome obstacles of language, access, fear and mistrust. Respondent Driven Sampling (RDS) is a sampling strategy designed to recruit underrepresented minority populations using social networks. However, there are no reports of RDS being used for a case-control study. METHODS: Our pilot study examined the feasibility of using RDS as a recruitment strategy to enroll a large number of participants to develop a GC screener. Our preliminary work showed that 750 cases and 5,250 controls would be needed to fully develop this tool. GC cases, who also served as the seeds, were asked to refer 2 more people to participate as controls in our study. Our pilot goal was to recruit 8 GC cases (as seeds) and 112 controls using three waves of referrals and recruitment. RESULTS: Twenty-seven GC cases were contacted of which 10 refused, 4 expressed interested to participate in the survey but were unwilling to recruit controls. Thirteen cases were recruited but only 5 Complete the survey. Of these 5, 3 cases did not pass on referral coupons and only 2 of the participants gave coupons to 3 potential controls. CONCLUSION: Our study revealed the limitations of using RDS with cancer patients to support recruitment. GC patients' constrained social networks, inadequate incentives or other factors may have contributed to the lack of success with using RDS in this setting.

A qualitative analysis of patients' experiences with an emergency department diagnosis of gastrointestinal cancer.

OBJECTIVES: Optimally, cancer is diagnosed through periodic screening or detection of early symptoms in primary care settings. However, an estimated 23%-52% of gastrointestinal (GI) cancers are diagnosed in the emergency department (ED). Cancer diagnosed in the ED has been associated with worse clinical and patient-reported outcomes even after adjustment for cancer stage. We sought to explore patients' accounts of patient and health care system factors related to their diagnosis in the ED and their lived experience of receiving a diagnosis in this setting. METHODS: Patients with an ED visit during or within 30 days of their GI cancer diagnosis at an urban academic hospital serving a largely disadvantaged population were recruited. Interviews were coded in NVivo 12 and analyzed using a thematic analysis approach. RESULTS: Patient-reported factors associated with their experiences included denial and avoidance of symptoms, mistrust of the health system, and lack of cancer screening knowledge. Health care system factors included misdiagnosis and delayed access to specialty care or tests. Experiences receiving a cancer diagnosis in the ED were overwhelmingly negative. CONCLUSIONS: This study highlights the unmet needs in identifying and diagnosing patients who ultimately present to the ED for evaluation and eventual diagnosis of cancer. Our results shed light on several modifiable factors, including the need for increased public awareness of the asymptomatic nature of cancer and the importance of cancer screening. Additionally, health care systems modifications beyond the ED are needed to improve access to timely care when symptoms arise.

Depression trajectories during the COVID-19 pandemic: a secondary analysis of the impact of cognitive-appraisal processes.

PURPOSE: This study characterized depression trajectories during the COVID pandemic and investigated how appraisal and changes in appraisal over time related to these depression trajectories. METHODS: This longitudinal study of the psychosocial impact of the COVID-19 pandemic included 771 people with data at three timepoints over 15.5 months. The depression index was validated using item-response-theory methods and receiver-operating-characteristic curve analysis. The Quality of Life (QOL) Appraisal Profilev2 Short-Form assessed cognitive-appraisal processes. Sequence analysis characterized depression-trajectory groups, and random effects models examined appraisal main effects, appraisal-by-group, and appraisal-by-group-by-time interactions. RESULTS: Sequence analysis generated six trajectory groups: Stably Well (n = 241), Stably Depressed (n = 299), Worsening (n = 79), Improving (n = 83), Fluctuating Pattern 1 (No-Yes-No; n = 41), and Fluctuating Pattern 2 (Yes-No-Yes; n = 28). While all groups engaged in negative appraisal processes when they were depressed, the Stably Depressed group consistently focused on negative aspects of their life. Response-shift effects were revealed such that there were differences in the appraisal-depression relationship over time for standards of comparison and recent changes for the Stably Depressed, and in health goals for those Getting Better. CONCLUSION: The present work is, to our knowledge, the first study of response-shift effects in depression. During these first 15.5 pandemic months, group differences highlighted the connection between negative appraisals and depression, and response-shift effects in these relationships over time. Egregious life circumstances may play a lesser role for the Stably Depressed but a greater role for people who have transient periods of depression as well as for those with improving trajectories (i.e., endogenous vs. reactive depression). How one thinks about QOL is intrinsically linked to mental health, with clear clinical implications.

Impact of comorbidities on people with and without cancer early in the COVID-19 pandemic: An observational study.

BACKGROUND: The present study sought to investigate how comorbidity burden influences cancer survivors' quality of life (QoL) and the challenges/adaptations during the coronavirus disease 2019 (COVID) pandemic, and to examine how appraisal processes are related to this impact. METHODS: This cross-sectional study, administered in spring/summer 2020, compared cancer survivors to a general-population comparison sample. QoL was assessed with standardized tools. COVID-specific questions included selected items compiled by the US National Institutes of Health, and cognitive appraisal processes were assessed using the QoL Appraisal Profilev2 Short-Form. Principal components analysis reduced the number of comparisons. Multivariate analysis of covariance investigated group differences in QoL, COVID-specific variables, and cognitive-appraisal processes. Linear regression investigated group differences in COVID-specific variables as a function of cognitive-appraisal processes, QoL, demographic covariates, and their interactions. RESULTS: Cancer survivors fared substantially better than non-cancer participants in QoL and cognitive functioning when they had no other comorbidities, but substantially worse on QoL when they had three or more comorbidities. Cancer survivors with no comorbidities were less likely to feel worried about COVID, less likely to engage in self-protection, and prioritized engaging in problem-focused and prosocial actions compared to non-cancer participants. Conversely, cancer survivors confronted with multiple comorbidities exhibited more proactive self-protection and experienced more anxiety about the pandemic. CONCLUSION: The impact of having multiple comorbidities in the context of cancer is associated with notable differences in social determinants of health, QoL outcomes, COVID-specific challenges/adaptations, and appraisal of QoL. These findings provide an empirical basis for implementing appraisal-based coping interventions.

Oncologists' perceived confidence and attitudes toward managing pre-existing chronic comorbidities during patients' active cancer treatment.

PURPOSE: To examine practicing oncologists' perceived confidence and attitudes toward management of pre-existing chronic conditions(PECC) during active cancer treatment(ACT). METHODS: In December 2018, oncologists in the National Cancer Institute's Community Oncology Research Program (NCORP) were invited to complete a was pilot-tested, IRB-approved online survey about their perceived confidence in managing PECC. Pearson chi-square test was used to identify oncologists' differences in perceived confidence to manage PECC and attitudes toward co-management of patients' PECC with non-oncologic care providers. Perceived confidence and attitudes were analyzed as a function of medical specialty while controlling demographic and medical practice variables. RESULTS: A total of 391 oncologists responded to the survey, 45.8% stated medical oncology as their primary specialty, 15.1% hematology oncology, 15.1% radiation oncology, 6.9% surgical oncology, and 17.1% other specialties such as gynecology oncology. Overall, 68.3% agreed (agree/strongly agree) that they were confident to manage PECC in the context of standard of care. However, only 46.6% and 19.7% remained confident when managing PECC previously managed by a primary care physician (PCP) and by a non-oncology subspecialist, respectively. Most oncologists (58.3%) agreed that patients' overall care was well coordinated, and 63.7% agreed that patients had optimal cancer and non-cancer care when PECC was co-managed with a non-oncology care provider. CONCLUSION: Most oncologists felt confident to manage all PECC during patients' ACT, but their perceived confidence decreased for PECC previously managed by PCPs or by non-oncology subspecialists. Additionally, they had positive attitudes toward co-management of PECC with non-oncologic care providers. These results indicate opportunities for greater collaboration between oncologists and non-oncology care providers to ensure comprehensive and coordinated care for cancer patients with PECC.

Cancer beliefs and screening behaviors: The impact of neighborhood and other social determinants of health.

Background: Beliefs about cancer influence breast and colorectal cancer (CRC) screening behavior. Screening rates for these cancers differ in the contiguous neighborhoods of East Harlem (EH), Central Harlem (CH), and the Upper East Side (UES), which have distinct socio-demographic compositions. We assessed the belief-screening behavior relationship in these neighborhoods. Methods: The 2019 Community Cancer Needs Survey included adults eligible for breast and/or colorectal cancer screening. Raking was used to generate neighborhood-specific distribution estimates. Categorical variables were compared using Chi-square tests. Stepwise logistic regression models were used to estimate odds ratios (OR) and 95% confidence intervals (CI) for the association between cancer beliefs and screening. Results: Our weighted sample included 147,726 respondents. Screening was 75% in CH, 81% in EH, and 90% in the UES for breast cancer, and 71%, 76%, and 92% for CRC, respectively. The fatalistic belief "There's not much you can do to lower your chances of getting cancer" differed by neighborhood with screening more likely in CH respondents (breast OR =1.45 and colorectal OR =1.11), but less likely in EH (OR= 0.77 and 0.37, respectively). UES ORs were not generated due to too few unscreened respondents. Conclusions: Cancer beliefs were inconsistently associated with breast and CRC screening across three NYC neighborhoods. This suggests that a given belief may either motivate or deter screening, depending upon context or interpretation. Once access is addressed, efforts seeking to enhance screening rates should consider implications of communities' varying beliefs.

Health-related Quality of Life After Robotic-assisted vs Open Radical Cystectomy: Analysis of a Randomized Trial.

PURPOSE: We compare health-related quality of life using a broad range of validated measures in patients randomized to robotic-assisted radical cystectomy vs open radical cystectomy. METHODS: We retrospectively analyzed patients that had enrolled in both a randomized controlled trial comparing robotic-assisted laparoscopic radical cystectomy vs open radical cystectomy and a separate prospective study of health-related quality of life. The prospective health-related quality of life study collected 14 patient-reported outcomes measures preoperatively and at 3, 6, 12, 18, and 24 months postoperatively. Linear mixed-effects models with an interaction term (study arm×time) were used to test for differences in mean domain scores and differing effects of approach over time, adjusting for baseline scores. RESULTS: A total of 72 patients were analyzed (n=32 robotic-assisted radical cystectomy, n=40 open radical cystectomy). From 3-24 months post-radical cystectomy, no significant differences in mean scores were detected. Mean differences were small in the following European Organization for Research and Treatment of Cancer QLQ-C30 (Core Quality of Life Questionnaire) domains: Global Quality of Life (-1.1; 95% CI -8.4, 6.2), Physical Functioning (-0.4; 95% CI -5.8, 5.0), Role Functioning (0.7; 95% CI -8.6, 10.0). Mean differences were also small in bladder cancer-specific domains (European Organization for Research and Treatment of Cancer QLQ-BLM30 [Muscle Invasive Bladder Cancer Quality of Life Questionnaire]): Body Image (2.9; 95% CI -7.2, 13.1), Urinary Symptoms (8.0; 95% CI -3.0, 19.0). In Urostomy Symptoms, there was a significant interaction term (P < .001) due to lower open radical cystectomy scores at 3 and 24 months. Other domains evaluating urinary, bowel, sexual, and psychosocial health-related quality of life were similar. CONCLUSIONS: Over a broad range of health-related quality of life domains comparing robotic-assisted radical cystectomy and open radical cystectomy, there are unlikely to be clinically relevant differences in the medium to long term, and therefore health-related quality of life over this time period should not be a consideration in choosing between approaches.

Association of smoking history on health-related quality of life in patients undergoing radical cystecomy.

PURPOSE: Radical cystectomy (RC) has the potential to impact health-related quality of life (HRQOL). Many patients who undergo RC are current or former smokers. To better inform preoperative patient counseling, we examined the association between smoking status and HRQOL after RC. MATERIALS AND METHODS: A secondary analysis was performed on a prospective, longitudinal study (2008-2014) examining HRQOL in patients undergoing RC for bladder cancer. We analyzed 12 validated patient-reported outcome measures that focused on functional, symptomatic, psychosocial, and global HRQOL domains. Measures were collected pre-operatively and 3-, 6-, 12-, 18-, and 24-months postoperatively. For each HRQOL domain, we estimated the mean domain scores using a generalized estimation equation linear regression model. Each model included survey time, smoking status, and time-smoking interaction as covariates. Pairwise comparisons of current, former, and never smokers were estimated from the models. RESULTS: Of the 411 patients available for analysis, 29% (n = 119) never smoked, 59% (n = 244) were former smokers, and 12% (n = 48) were current smokers. Over the follow-up period, never smokers compared to current smokers had better global QOL scores (mean difference = +8.9; 95% CI 1.3-16; p = 0.023) and lower pain levels (mean difference = -10; 95% CI -19 to -0.54; p = 0.036). Compared to current smokers, former smokers had marginal improvements in global QOL (+6.9 points) and pain (-7.5 points) during the follow-up period. CONCLUSIONS: Current smokers reported worse HRQOL recovery in the 24-months after RC. These findings can be used to counsel patients who smoke on recovery expectations.

A Learning Health System Approach to Cancer Survivorship Care Among LGBTQ+ Communities.

PURPOSE: Lesbian, gay, bisexual, transgender, and queer (LGBTQ+) individuals who receive primary care services at community health centers are often referred to external specialty care centers after cancer diagnosis, upon which primary care services are disrupted and may be discontinued because of gaps in communication between primary and oncologic care providers. This qualitative study evaluated barriers and facilitators to effective care coordination for LGBTQ+ patients with cancer and the utility of a novel cancer care coordination tool to mitigate identified barriers. MATERIALS AND METHODS: Semistructured interviews with LGBTQ+ cancer survivors, caregivers to LGBTQ+ persons, clinical team members who provide care to LGBTQ+ patients, and members of community-based organizations that work with LGBTQ+ patients were conducted. Interview analysis was a multistage process, wherein a constant comparison approach was used. Transcripts were reviewed and coded using Atlas.ti Cloud. RESULTS: A total of 26 individuals were interviewed: 10 patients, four caregivers, 10 clinical care team members, and two community organization representatives. Interview analysis yielded insight regarding (1) LGBTQ+ patient experiences engaging with primary and oncologic care at the clinic level and (2) perceptions of patient-provider and provider-provider communication and coordination. CONCLUSION: Interview findings indicate a need for further development of interventions aimed at improving care coordination, patient experience, and outcomes in the cancer care continuum for LGBTQ+ patients. Learning health systems, like the one studied, show great potential for contributing to the development of such interventions.