Optimizing Telehealth Services: A Mixed-Methods Needs Assessment Conducted Among Community Health Center Patients.

BACKGROUND: The COVID-19 pandemic increased telehealth services in federally funded community health centers (CHCs). Yet little is known about common determinants of use among CHC patients. OBJECTIVE: We examined the use of telehealth among patient participants at 1 large CHC network providing care to underserved populations at urban and suburban sites in the Midwest. METHODS: We conducted a mixed-methods study utilizing a sequential explanatory design. Participants were English and/or Spanish-speaking adults who attended ≥1 visits for themselves or their child over a 12-month period at any practice location. Research staff conducted a structured phone survey of eligible adults. The results subsequently facilitated purposive sampling of telehealth "users" and "nonusers" for qualitative phone interviews. RESULTS: The survey participants included 500 adults. Most had access to the resources needed to utilize telehealth, including a smartphone (90.4%) and home internet (83.0%). About half (50.8%) "rarely or never" had problems with internet speed, reliability, or quality. Most (81.1%) were aware of the patient portal and 59.8% had utilized video visits. Participants who were Spanish-speaking and with limited English proficiency faced some of the greatest barriers. Qualitative interview participants included 12 users and 12 nonusers of telehealth. Users found telehealth convenient and efficient, while nonusers lacked awareness about how telehealth services could be beneficial or needed assistance to sign up, join, or use telehealth. CONCLUSIONS: Most participants had the resources and awareness necessary to use telehealth services. Those who use them appreciate the convenience and efficiency. Nevertheless, additional support may be needed to prevent telehealth from exacerbating health inequities.

Development and Validation of COVID-19 Vaccine Messaging Materials for Latinx Communities.

With pervasive health misinformation and mistrust, many of those at greatest risk from COVID-19 have demonstrated lower vaccine acceptance. In Chicago, IL, surveillance data has revealed lower rates of vaccine uptake among Black and Latinx individuals compared with others. We partnered with two local federally qualified health centers (FQHCs) to develop and implement language-concordant, low literacy patient education materials to promote COVID-19 vaccine knowledge, acceptance, and uptake. Our multi-phase study included: 1) iterative content generation and refinement by health literacy experts, health center providers and staff, and community-dwelling adults; and 2) materials testing via a two-arm randomized experiment among adults from Latinx communities in the Chicagoland area. Results indicate that our English and Spanish-language COVID-19 Fact Sheets increase knowledge about COVID-19 vaccination. These materials are publicly available and can be used by health centers or community organizations to promote COVID-19 vaccination among diverse populations.

Predictors of HIV Testing among Orphaned Youths in Three East African Countries.

In parts of sub-Saharan Africa, where HIV prevalence is high, HIV is a leading cause of death among youths. Orphaned and separated youths are an especially vulnerable group, yet we know little about what influences their testing behavior. We conducted multiple logistical regression to examine theory-based predictors of past-year HIV testing among 423 orphaned and separated youths in Ethiopia, Kenya and Tanzania. We also conducted moderation, assessing whether predictors varied by sex. Over one-third of our sample reported past-year HIV testing. Those with greater perceived social support and those who reported sexual HIV risk behavior were more likely to report past-year testing. Furthermore, boys who reported ever previously testing for HIV were more likely, a year later, to report past-year HIV testing. In conclusion, our findings have important implications for intervention development, including the potential for enhanced perceived social support to positively influence HIV testing among orphaned and separated youths.

Validity of Social Support Scales Utilized Among HIV-Infected and HIV-Affected Populations: A Systematic Review.

Social support enhances self-management and prevention of behaviors and is typically assessed using self-report scales; however, little is known about the validity of these scales in HIV-infected or affected populations. This systematic review aims to identify available validated social support scales used in HIV-infected and HIV-affected populations. A systematic literature search using key search terms was conducted in electronic databases. After rounds abstract screenings, full-text reviews, and data abstraction 17 studies remained, two of which assessed multiple social support scales, which increased number of scales to 19. Most scales assessed positive social support behaviors (n = 18). Most scales assessed perceived social support (n = 14) compared to received social support. Reliability ranged from 0.67 to 0.97. The most common forms of validation reported were content validity and construct validity and the least was criterion-related validity. Future research should seek to build evidence for validation for existing scales used in HIV-infected or HIV-affected populations.

Stakeholder acceptability of adolescent participation in clinical trials for biomedical HIV prevention products: considerations from Tanzania and India.

Researchers and advocates have increasingly called for adolescent participation in clinical trials for new HIV prevention products, particularly adolescent girls in areas most affected by the epidemic. However, recent trials have highlighted the challenges for young women and adolescents to be able to effectively use new products that require daily dosing. This analysis provides a highly relevant context for this challenging environment by examining community members acceptability of adolescent girls' participation in clinical trials for new HIV prevention products. We conducted 41 in-depth interviews in Dar es Salaam, Tanzania and Pune, India with 22 key informants (KIs). Cultural perspectives on adolescent sexuality varied between countries, with KIs in Tanzania more readily acknowledging adolescent girls' sexual activity than KIs in India. KIs in both countries felt strongly adolescents must be well-informed about research concepts prior to participation, and emphasis should be given to preventative misconception. Despite concern in both countries that the trials might be seen as encouraging sexual behavior, KIs in Tanzania overwhelmingly supported adolescent inclusion, whereas KIs in India were more cautious. Involving adolescent girls in clinical trials for new HIV prevention products is potentially acceptable, although meaningful community engagement will be necessary.

The Role of Financial Incentives Along the Antiretroviral Therapy Adherence Continuum: A Qualitative Sub-study of the HPTN 065 (TLC-Plus) Study.

The stages of change (SOC) theory suggests individuals adapt incrementally to behaviors like adherence, requiring different strategies over the behavior change continuum. Offering financial incentives (FIs) is one strategy to motivate adherence. This qualitative sub-study examined adherence barriers and the role of FIs to increase viral suppression (VS) among HIV Prevention Trials Network (HPTN) 065 study participants categorized into SOC-related adherence stages based on changes from baseline to follow-up viral load tests. Of 73 participants, most were in Maintenance stage (n = 31), defined as having achieved VS throughout HPTN 065, or in Action stage (n = 29), defined as moving from virally unsuppressed to suppressed in 50% or more of tests. Only 13 were Low Adherers, having achieved VS in fewer than 50% of tests. The latter group faced substantial social and structural adherence barriers. Participants in the Action stage made positive changes to adherence routines to achieve VS. Those in Maintenance were less incentivized by FIs, as they were already committed. Results from this sub-study suggest FI effectiveness may vary across the SOC continuum, with greatest impact for those initiating antiretroviral or without explicit adherence routines. FIs may be insufficient to overcome strong social or structural barriers, and unnecessary for those intrinsically committed to remaining adherent.

Risk factors for transactional sex among young females in post-conflict Liberia.

This study aimed to examine the risk factors for engaging in transactional sex among young females in Montserrado County, Liberia. Data from an HIV behavioral survey conducted among young people aged 14 - 25 years were used. The analytical sample included 493 sexually-experienced females. Bivariate and multivariate analyses were conducted. We found that 72% of our sample had ever engaged in transactional sex. Engagement in transactional sex was associated with education (OR: 0.5); reporting no earned income (OR: 1.9); longer duration of sexual activity (OR: 3.5); early sexual debut (OR: 2.5); history of sexual violence (OR: 2.1) and multiple sexual partnerships (OR: 4.0). Respondents' age, residence, and drug/alcohol use were not associated with engagement in transactional sex. HIV interventions should incorporate educational strategies to reduce the prevalence of transactional sex among young people. These strategies should include economic opportunities to offset financial need as well as efforts to eradicate sexual violence.

Factors associated with unmet need for modern contraception in post-conflict Liberia.

We examined the association between intimate partner violence and unmet need for modern contraception in post-conflict Liberia. This is a secondary analysis of data collected using the Priorities for Local AIDS Control Efforts (PLACE) method. Data from 499 sexually experienced young women (aged 14-25) in Montserrado County, Liberia were examined. Intimate partner violence (55.7%), unintended pregnancy (83.2%), and abortion (45.3%) were pervasive in the study population. An estimated 35.9% of respondents had an unmet need for modern contraception. However, multivariate logistic regression results did not reveal an association between intimate partner violence and unmet need (OR 1.11; 95% CI 0.70-1.75). Among covariates examined, only contraceptive use at sexual debut (26.1%) was significantly associated with unmet need (OR 0.27; 95% CI 0.14-0.52). Liberian youth need information about and access to modern contraceptive methods besides condoms. Interventions to identify and treat victims of violence are also needed.

Characterizing Caregiver Roles and Conflict in Health Management Support to Older People With Multiple Chronic Conditions.

Caregivers provide critical support for older adults managing multiple chronic conditions (MCCs), but few studies describe the assistance caregivers provide or identify factors influencing their provision of support. We conducted qualitative interviews with 25 caregivers to older adults with MCCs to describe caregivers' roles and identify the factors that influence caregivers' ability to carry out these roles. Transcripts were analyzed using the Framework Method. Caregivers supported the management of MCCs in several ways, including monitoring conditions, communicating with clinicians, and tracking health information. Disagreement, or conflicted relationships, between caregivers and older adults over health and behaviors influenced the provision of support, resulting in less involved and less effective caregivers. Caregivers in conflicted relationships were more challenged by resistance from older adults. Greater agreement, or collaboration, between caregivers and older adults resulted in more involved and effective caregivers. Addressing health-related conflict may enhance caregivers' capacity to support older adults with MCCs.

Association between awareness and knowledge of medication-overuse headache with medication-taking behavior among adults with migraine.

Frequent use of pain relief medications among patients with migraine can result in disease worsening and medication-overuse headache (MOH), a painful and debilitating condition. We sought to conduct a cross-sectional survey among adult patients diagnosed with migraine to determine: 1) their awareness of MOH, and 2) their knowledge of the condition and its prevention, and 3) the association of these factors with actual use of pain relief medications. We recruited and interviewed 200 English-speaking adults with migraine who had a clinic visit with a neurologist or primary care provider within the past month. Patients were identified via an electronic health record query. Almost 40% of participants had never heard of the term 'medication-overuse headache.' In bivariate analyses, participants who were Black or Hispanic and those with limited health literacy were less likely to have heard of MOH. Participants scored an average of 2.1 (range: 0-3) on a MOH knowledge measure; older participants, those with limited health literacy, lower education, and little or no migraine-related disability demonstrated less knowledge. Almost a third (31.5%) of patients reported overusing pain relief medication and were at risk for MOH. Overuse was not significantly associated with MOH awareness, knowledge, or sociodemographic factors, but was related to greater migraine-related disability. Our findings suggest that patient awareness and knowledge of MOH is suboptimal, particularly among older adults, racial and ethnic minority groups, and those with limited health literacy. Interventions are needed to prevent MOH and better inform patients about risks associated with frequent use of pain relief medications.

Patient and clinician preferences for diabetes management among older adults with co-morbid HIV: A qualitative exploration.

BACKGROUND: Older adults with HIV are at increased risk of developing certain chronic health conditions including type 2 diabetes mellitus (T2DM). As the number and complexity of conditions increases, so do treatment and health care needs. We explored patient and clinician preferences for HIV+T2DM care and perceived solutions to improving care. METHODS: We conducted an exploratory qualitative study comprised of individual in-depth interviews. Participants included English-speaking patients aged 50 and older living with HIV and T2DM and infectious disease (ID) and primary care (PC) clinicians from a large academic health center in Chicago. Thematic analysis drew from the Framework Method. RESULTS: A total of 19 patient and 10 clinician participants were interviewed. Many patients reported seeking HIV and T2DM care from the same clinician; they valued rapport and a 'one-stop-shop'. Others reported having separate clinicians; they valued perceived expertise and specialty care. Nearly all clinicians reported comfort screening for T2DM and initiating first line oral therapy; ID clinicians reported placing referrals for newer, complex therapies. Patients would like educational support for T2DM management; clinicians would like to learn more about newer therapies and easier referral processes. CONCLUSIONS: Patient-centered care includes managing T2DM from a variety of clinical settings for individuals with HIV, yet strategies are needed to better support clinicians. Future research should examine how best to implement these strategies.

Managing medications among individuals with mild cognitive impairment and dementia: Patient-caregiver perspectives.

BACKGROUND: With changing cognitive abilities, individuals with mild cognitive impairment (MCI) and dementia face challenges in successfully managing multidrug regimens. We sought to understand how individuals with MCI or dementia and their family caregivers manage multidrug regimens and better understand patient-to-caregiver transitions in medication management responsibilities. METHODS: We conducted qualitative interviews among patient-caregiver dyads. Eligibility included: patients with a diagnosis of MCI, mild or moderate dementia, managing ≥3 chronic conditions, ≥5 prescription medications, who also had a family caregiver ≥18 years old. Semi-structured interview guides, informed by the Medication Self-Management model, ascertained roles and responsibilities for medication management and patient-to-caregiver transitions in medication responsibilities. RESULTS: We interviewed 32 patient-caregiver dyads. Older adults and caregivers favored older adult autonomy in medication management, and individuals with MCI and mild dementia largely managed their medications independently using multiple strategies (e.g., establishing daily routines, using pillboxes). Among individuals with moderate dementia, caregivers assumed all medication-related responsibilities except when living separately. In those scenarios, caregivers set up organizers and made reminder calls, but did not observe family members taking medications. Patient-to-caregiver transitions in medication responsibilities frequently occurred after caregivers observed older adults making errors with medications. As caregivers sought to assume greater responsibilities with family members' medicines, they faced multiple barriers. Most barriers were dyadic; they affected both the older adult and the caregiver and/or the relationship. Some barriers were specific to caregivers; these included caregivers' competing responsibilities or inaccurate perceptions of dementia, while other barriers were related to the healthcare system. CONCLUSIONS: To ease medication management transitions, balance must be sought between preservation of older adult autonomy and early family caregiver involvement. Clinicians should work to initiate conversations with family caregivers and individuals living with MCI or dementia about transitioning medication responsibilities as memory loss progresses, simplify regimens, and deprescribe, as appropriate.

Delayed opportunities for patient-provider communication about medication overuse headache: Mixed methods perspectives from patients and neurologists.

Objectives: Medication overuse headache (MOH) is a common, debilitating condition occurring when migraine patients overuse pain relief medications. We conducted a convergent mixed methods study examining patient-provider communication on MOH. Methods: Migraine patients were identified from one academic health center via electronic health records. Research staff recruited patients and administered a remote survey on MOH awareness, knowledge, and communication; descriptive and bivariate analyses were conducted. Neurologists from the same health center were invited to participate in qualitative interviews; analysis drew from the Rapid Identification of Themes from Audio Recordings procedures. A side-by-side comparison of results followed. Results: Participants included 200 patients and 13 neurologists. More than one third of patients (39.5 %) had never heard of 'medication overuse headache.' Among those who had, 38.4 % learned about MOH ≥ 5 years after their migraine diagnosis. Neurologists similarly reported limited patient awareness of MOH and suggested communication was provider-initiated, reactive to patient-reported symptoms and behaviors. Participants agreed MOH was described as a 'consequence' of frequent medication taking, though specific terminology varied with neurologists suggesting they choose terms they perceive to be easier to understand and less stigmatizing to patients. Neurologists felt they lacked effective patient education resources. Conclusions: Findings reveal delayed opportunities to inform patients about MOH. Standardized education supporting early preventive communication is needed, perhaps in primary care where many patients seek initial care for migraine symptoms.

Informing HIV prevention efforts targeting Liberian youth: a study using the PLACE method in Liberia.

BACKGROUND: Preventing HIV infection among young people is a priority for the Liberian government. Data on the young people in Liberia are scarce but needed to guide HIV programming efforts. METHODS: We used the Priorities for Local AIDS Control Efforts (PLACE) method to gather information on risk behaviors that young people (ages 14 to 24) engage in or are exposed to that increase their vulnerability for HIV infection. Community informants identified 240 unique venues of which 150 were visited and verified by research staff. 89 of the 150 venues comprised our sampling frame and 571 females and 548 males were interviewed in 50 venues using a behavioral survey. RESULTS: Ninety-one percent of females and 86% of males reported being sexually active. 56% of females and 47% of males reported they initiated sexual activity before the age of 15. Among the sexually active females, 71% reported they had received money or a gift for sex and 56% of males reported they had given money or goods for sex. 20% of females and 6% males reported that their first sexual encounter was forced and 15% of females and 6% of males reported they had been forced to have sex in the past year. Multiple partnerships were common among both sexes with 81% females and 76% males reporting one or more sex partners in the past four weeks. Less than 1% reported having experiences with injecting drugs and only 1% of males reporting have sex with men. While knowledge of HIV/AIDS was high, prevention behaviors including HIV testing and condom use were low. CONCLUSION: Youth-focused HIV efforts in Liberia need to address transactional sex and multiple and concurrent partnerships. HIV prevention interventions should include efforts to meet the economic needs of youth.

Intimate partner violence against female sex workers in Mombasa, Kenya.

Female sex workers are known to be at risk of intimate partner violence (IPV) from numerous sources including clients, pimps, boyfriends and husbands. Better understanding the factors associated with IPV in this population will enhance prevention efforts. This work examines baseline survey data collected as part of a randomised controlled trial for an alcohol-harm reduction intervention. The study sample included 619 sex workers. IPV was common in this sample, with 78.7% of women reporting any IPV in the last 30 days. Multivariate logistic regression results indicated that supporting one to two other people, experiencing child abuse, witnessing mother abuse, and greater alcohol consumption were risk factors for IPV in our sample. Women who frequented Population, Health and Integrated Assistance (APHIA) II drop-in centres located along transport corridors were also at greater risk of recent IPV, as compared with those who frequented other drop-in centres. Only one protective effect was identified in this study: condom use at last sex with a non-paying partner was associated with less recent IPV. Health programmes for women sex workers in Mombasa and elsewhere need to expand beyond HIV prevention - they need to incorporate information on violence prevention and treatment referrals, as well as information on alcohol harm reduction.

Current communication practices for biomarker testing in non-small cell lung cancer: Exploring patient and clinician perspectives.

OBJECTIVES: We qualitatively explored patient and clinician experiences with biomarker testing in one academic health system to identify current communication practices and unmet testing information needs. METHODS: We conducted 1:1 in-depth interviews with 15 clinicians (i.e., nurses, oncologists, pathologists) and 12 patients diagnosed with non-small cell lung cancer between January and May 2022. Participants described experiences with biomarker testing as well as associated communication practices and needs. Interviews were audio-recorded and transcribed. Analysis was informed by the Framework Method. RESULTS: Patients described challenges retaining information early in their patient journey. While patients were generally aware of biomarkers and their effect on treatment options, they expressed limited knowledge of expected time delays between testing and receiving results. Additionally, many did not know their testing results. Clinicians and patients both noted no standard education material on biomarker testing is currently available. They suggested such materials could support patient knowledge and decision-making. CONCLUSIONS: Communication between patients and clinicians about biomarker testing is largely delivered through verbal counseling at a time when patients may be cognitively compromised. All participants supported the idea of delivering standard, tangible education materials on biomarker testing to patients. PRACTICE IMPLICATIONS: Education materials may enhance counseling efforts and patient knowledge.

A Qualitative Exploration of Perceived Medication Adherence Determinants Conducted Among Older Adults with HIV and Type 2 Diabetes Mellitus.

Background: People living with HIV (PLWH) are at higher risk of developing type 2 diabetes (T2DM). Both chronic conditions require individuals to adhere to medication regimens, yet few studies have sought to explore medication-taking behaviors among individuals with comorbid HIV and T2DM (HIV+T2DM). Objective: This qualitative study sought to: 1) identify and compare perceived determinants of medication adherence for HIV and, separately, for T2DM, and 2) explore how participants prioritize conditions. Methods: Between October 2022 and January 2023, we conducted in-depth interviews with individuals aged 50 or older, living with comorbid HIV+T2DM. Participants were prescribed oral medications to treat their conditions and had recent clinical measures indicating probable challenges with medication adherence. Interviews with consented participants from a large academic health center in the Midwest were conducted remotely. Questions largely drew from the Theoretical Domains Framework (TDF), a widely used implementation science framework. Additional questions explored the prioritization of conditions. Analysis employed the Framework Method and a side-by-side comparison of key determinants of medication adherence by condition. Results: A total of 19 interviews were audio recorded, transcribed, and analyzed. Participants were an average age of 61, mostly male (89.5%), and Non-Hispanic White (47.4%). Although results revealed many commonalities between perceived determinants of medication adherence for HIV and for T2DM, differences relating to two TDF domains were noted: nature of the behavior (taking medications as prescribed), and motivations and goals. Many participants viewed their conditions as equally important, though they suggested T2DM was more difficult to manage, largely due to lifestyle modifications. Conclusion: As individuals with HIV develop chronic conditions, such as T2DM, they may require additional medication adherence support. Attention should be paid to offering support early. Disease perceptions may differ by condition, and as such, one's motivations to take medication as prescribed may also differ by condition.

Promoting REproductive Planning And REadiness in Diabetes (PREPARED) Study protocol: a clinic-randomised controlled trial testing a technology-based strategy to promote preconception care for women with type 2 diabetes.

INTRODUCTION: Women with type 2 diabetes (T2DM) are more likely to experience adverse reproductive outcomes, yet preconception care can significantly reduce these risks. For women with T2DM, preconception care includes reproductive planning and patient education on: (1) the importance of achieving glycaemic control before pregnancy, (2) using effective contraception until pregnancy is desired, (3) discontinuing teratogenic medications if pregnancy could occur, (4) taking folic acid, and (5) managing cardiovascular and other risks. Despite its importance, few women with T2DM receive recommended preconception care. METHODS AND ANALYSIS: We are conducting a two-arm, clinic-randomised trial at 51 primary care practices in Chicago, Illinois to evaluate a technology-based strategy to 'hardwire' preconception care for women of reproductive age with T2DM (the PREPARED (Promoting REproductive Planning And REadiness in Diabetes) strategy) versus usual care. PREPARED leverages electronic health record (EHR) technology before and during primary care visits to: (1) promote medication safety, (2) prompt preconception counselling and reproductive planning, and (3) deliver patient-friendly educational tools to reinforce counselling. Post-visit, text messaging is used to: (4) encourage healthy lifestyle behaviours. English and Spanish-speaking women, aged 18-44 years, with T2DM will be enrolled (N=840; n=420 per arm) and will receive either PREPARED or usual care based on their clinic's assignment. Data will be collected from patient interviews and the EHR. Outcomes include haemoglobin A1c (primary), reproductive knowledge and self-management behaviours. We will use generalised linear mixed-effects models (GLMMs) to evaluate the impact of PREPARED on these outcomes. GLMMs will include a fixed effect for treatment assignment (PREPARED vs usual care) and random clinic effects. ETHICS AND DISSEMINATION: This study was approved by the Northwestern University Institutional Review Board (STU00214604). Study results will be published in journals with summaries shared online and with participants upon request. TRIAL REGISTRATION NUMBER: ClinicalTrials.gov Registry (NCT04976881).

Developing, optimizing, and evaluating patient infographics for diagnosing cardiac amyloidosis.

Objective: Advancements in diagnostics and treatment options for cardiac amyloidosis have improved patient outcomes, yet few patient education materials exist to help patients understand the disease and diagnosis process. We sought to develop and evaluate a set of plain language, patient-centered infographics describing the condition and common diagnostic tests. Methods: Using health literacy best practices, we developed 7 infographics which were further revised based on multilevel stakeholder feedback. To evaluate the materials, we recruited 100 patients from healthcare settings in Chicago, IL; participants completed a web-assisted interview during which they were randomized 1:1 to first view either our infographics or a standard material. Participants completed a knowledge assessment on their assigned material and subsequently reported impressions of both materials. Results: No differences were found between study arms in knowledge. The infographics took significantly less time to read and were more highly rated by participants in terms of appearance and understandability. Over two-thirds of participants preferred the infographics to the standard. Conclusions: The infographics created may improve the learning process about a complex condition and diagnosis process unknown to most adults. Innovation: These infographics are the first of their kind for cardiac amyloidosis and were created using health literacy best practices.