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An estimated 37,000 cisgender and transgender women work as sex workers in Malaysia, a population that has been disproportionately affected by the HIV epidemic. Although Malaysia provides no-cost antiretroviral therapy (ART) to people with HIV, little is known about sex workers' engagement in the HIV care continuum. We analyzed data from 57 HIV-infected cisgender women (n = 33) and transgender women (n = 24) sex workers from a respondent-driven sampling study on HIV prevalence among sex workers in Kuala Lumpur, Malaysia. We examined the proportion of women who were newly diagnosed with HIV, had a baseline CD-4 count test, were initiated and retained on antiretroviral treatment (ART). Overall, only 26.3% had ever been HIV tested and almost 60% were newly diagnosed. Only a small proportion of cisgender (15.2%) and transgender (12.5%) women were currently taking ART. Interventions to enhance sex workers' engagement in the HIV care continuum are urgently needed. Deployment of evidence-based strategies to improve linkage and retention in HIV care should be adapted to address the unique needs of this important key population.

Purpose: HIV screening is a critical step in the HIV care continuum to lowering incidence and achieving viral load suppression among at-risk populations. Few studies assess factors associated with HIV screening among transgender individuals living in the southeast region of the United States. This study was conducted to determine factors that influence HIV screening among transgender individuals in South Florida. Methods: During Fall 2016, 68 participants were recruited to complete a questionnaire as part of a pilot pre-exposure prophylaxis study. Correlations were examined between sociodemographic factors, HIV risk, and access to and engagement in care. Significant correlations were entered into one logistic regression model to estimate predictors of HIV screening and knowledge of HIV status. Results: Almost half (48.5%) of the respondents were Latinx, 38.2% Black, 10.3% non-Latinx White, and 3% other. Seventy-eight percent reported access and routine engagement in care within the past year, 25% had not screened for HIV in the past year, and of those who knew their status, 16.7% reported living with HIV. Regression analysis revealed that participants with routine engagement in care were twice as likely to screen for HIV (p=0.02). Unstable housing was associated with no HIV screening in the past year (p=0.05). Conclusion: Stable housing is linked to engagement in routine care that can increase the likelihood of an at-risk transgender individual screening for HIV. Further research is needed to develop interventions to improve engagement in care among transgender individuals who do not have adequate housing or access to care.

During COVID-19 lockdown, the in-hospital number of HIV indicator conditions decreased disproportionally compared with other non–COVID-19 diseases, which was accompanied by reduced HIV testing rates, number and proportion of positive HIV tests, and new HIV referrals, with more late presentation after lockdown cessation, indicating a significantly impacted HIV care continuum.

Background Understanding the sources of HIV transmission provides a basis for prioritizing HIV prevention resources in specific geographic regions and populations. This study estimated the number, proportion, and rate of HIV transmissions attributable to individuals along the HIV care continuum, within different HIV transmission risk groups in six US cities. Methods We used a dynamic, compartmental HIV transmission model that draws on racial/ethnic- and risk-behavior-specific linkage to HIV care and use of HIV prevention services from local, state and national surveillance sources. We estimated the rate and number of HIV transmissions attributable to individuals in the stage of acute undiagnosed HIV, non-acute undiagnosed HIV, HIV diagnosed but antiretroviral therapy (ART) naive, off ART, and on ART, stratified by HIV transmission group for the 2019 calendar year. Results Individuals with undiagnosed non-acute HIV infection accounted for the highest proportion of total transmissions in every city, ranging from 36.8% [26.7%-44.9%] in New York City to 64.9% [47.0%-71.6%] in Baltimore. Individuals who had discontinued ART contributed to the second highest percentage of total infections in four of six cities. Individuals with acute HIV had the highest transmission rate per 100 person years, ranging from 76.4 [58.9-135.9] in Miami to 160.2 [85.7-302.8] in Baltimore. Conclusion These findings underline the importance of both early diagnosis and improved ART retention for ending the HIV epidemic in the US. Differences in the sources of transmission across cities indicate that localized priority-setting to effectively address diverse microepidemics at different stages of epidemic control is necessary.

PURPOSE: Healthcare systems contribute to disparities in breast cancer outcomes. Patient navigation is a widely cited systembased approach to improve outcomes among populations at risk for delays in care. Patient navigation programs exist in all major Boston hospitals, yet disparities in outcomes persist. The objective of this study was to conduct a baseline assessment of navigation processes at six Boston hospitals that provide breast cancer care in preparation for an implementation trial of standardized navigation across the city. METHODS: We conducted a mixed methods study in six hospitals that provide treatment to breast cancer patients in Boston. We administered a web-based survey to clinical champions (n = 7) across six sites to collect information about the structure of navigation programs. We then conducted in-person workflow assessments at each site using a semi-structured interview guide to understand site-specific implementation processes for patient navigation programs. The target population included administrators, supervisors, and patient navigators who provided breast cancer treatment-focused care. RESULTS: All sites offered patient navigation services to their patients undergoing treatment for breast cancer. We identified wide heterogeneity in terms of how programs were funded/resourced, which patients were targeted for navigation, the type of services provided, and the continuity of those services relative to the patient’s cancer treatment. CONCLUSIONS: The operationalization of patient navigation varies widely across hospitals especially in relation to three core principles in patient navigation: providing patient support across the care continuum, targeting services to those patients most likely to experience delays in care, and systematically screening for and addressing patients’ health-related social needs. Gaps in navigation across the care continuum present opportunities for intervention. TRIAL REGISTRATION: Clinical Trial Registration Number NCT03514433, 5/2/2018

The Treat pillar of the Ending the HIV Epidemic in the U.S. plan calls for comprehensive strategies to enhance linkage to, and engagement in, HIV medical care to improve viral suppression among people with HIV and achieve the goal of 95% viral suppression by 2025. The U.S. has seen large increases in the proportion of people with HIV who have a suppressed viral load. Viral suppression has increased 41%, from 46% in 2010 to 65% in 2018. An additional increase of 46% is needed to meet the Ending the HIV Epidemic in the U.S. goal. The rate of viral suppression among those in care increased to 85% in 2018, highlighting the need to ensure sustained care for people with HIV. Greater increases in all steps along the HIV care continuum are needed for those disproportionately impacted by HIV, especially the young, sexual and racial/ethnic minorities, people experiencing homelessness, and people who inject drugs. Informed by systematic reviews and current research findings, this paper describes more recent promising practices that suggest an impact on HIV care outcomes. It highlights rapid linkage and treatment interventions; interventions that identify and re-engage people in HIV care through new collaborations among health departments, providers, and hospital systems; coordinated care and low-barrier clinic models; and telemedicine-delivered HIV care approaches. The interventions presented in this paper provide additional approaches that state and local jurisdictions can use to reach their local HIV elimination plans' goals and the ambitious Ending the HIV Epidemic in the U.S. Treat pillar targets by 2030.

OBJECTIVES HIV prevalence is an estimated 14% among transgender women (TW) and 3% among transgender men (TM). HIV care is vital for viral suppression but is hindered by transphobia and HIV stigma. We assessed HIV care outcomes among transgender persons (TG) with HIV in the United States. DESIGN Systematic review and meta-analysis of peer-reviewed journal articles. METHODS We searched multiple electronic databases and CDC's HIV Prevention Research Synthesis database for 2006-September 2018. Eligible reports were US-based studies that included TG and reported HIV care outcomes. Random-effects models were used to calculate HIV care outcome rates. The protocol is registered with PROSPERO (CRD42018079564). RESULTS Few studies reported outcomes for TM; therefore, only TW meta-analysis results are reported. Twenty-one studies were identified having low-to-medium risk-of-bias scores. Among TW with HIV, 82% had ever received HIV care; 72% were receiving care, and 83% of those were retained in HIV care. Sixty-two percent were currently virally suppressed. Among those receiving HIV care or antiretroviral therapy (ART), 67% were virally suppressed at last test. Sixty-five percent were linked to HIV care ≤3 months after diagnosis. Seventy-one percent had ever been prescribed ART. Approximately 66% were taking ART, and 66% were ART-adherent. Only 56% were currently adherent the previous year. CONCLUSIONS HIV care outcomes for TW were not ideal, and research gaps exists for TM. High heterogeneity was observed; therefore, caution should be taken interpreting the findings. Integrating transgender-specific health needs are needed to improve outcomes of transgender persons across the HIV care continuum.

Hypertension is one of the primary causes of morbidity and premature mortality among the working-age population in India. This study evaluated the burden of hypertension and unmet need for hypertension care among working-age men aged 15–54 years in India using data from the fourth round of the National Family Health Survey (NFHS-4, 2015–16). An individual was recognized as hypertensive if his blood pressure was over 140/90 mmHg or if he was consuming anti-hypertensive medication to lower his blood pressue. The study design was based on the Rule of Halves framework. Hypertensive cases were segmented into five analytical levels: (1) total, (2) screened, (3) diagnosed, (4) treated and (5) controlled cases. The prevalence of hypertension was 16% (n=16,254) among the men aged 15–54 years. Of the total hypertensive individuals, 63.2% (10,314) were screened, 21.5% (3428) were diagnosed, 12.6% (1862) were treated and only 6.1% (905) had controlled blood pressure. Of the screened individuals, 66.8% (6886) had never been diagnosed, 45.7% (1566) of those diagnosed had not receive treatment and 51.4% (957) of those treated still had uncontrolled blood pressure. The analyses revealed that 36.5% (5940) of hypertensive individuals were lost at the screening stage. The results demonstrate that there is a significant burden of hypertension and unmet need for hypertension care among men aged 15–54 in India. There is an urgent need to develop suitable strategies and programmes to manage this rising burden of hypertension among men, and reduce losses in the hypertension care continuum.

Pre-exposure prophylaxis (PrEP) is a medication that prevents HIV acquisition, yet PrEP uptake has been low among people who inject drugs. Stigma has been identified as a fundamental driver of population health and may be a significant barrier to PrEP care engagement among PWID. However, there has been limited research on how stigma operates in rural and urban settings in relation to PrEP. Using in-depth semi-structured qualitative interviews (n = 57) we explore PrEP continuum engagement among people actively injecting drugs in rural and urban settings. Urban participants had more awareness and knowledge. Willingness to use PrEP was similar in both settings. However, no participant was currently using PrEP. Stigmas against drug use, HIV, and sexualities were identified as barriers to PrEP uptake, particularly in the rural setting. Syringe service programs in the urban setting were highlighted as a welcoming space where PWID could socialize and therefore mitigate stigma and foster information sharing. Supplementary Information The online version contains supplementary material available at 10.1007/s10461-021-03488-2.

Pre-exposure prophylaxis (PrEP) is an effective HIV prevention method, but it has been underutilized by women. Anticipated stigma regarding use of PrEP is a contributing factor in the underutilization of this prevention strategy. The current study explored the relationships among PrEP stigma, sex risk (i.e., inconsistent condom use, condomless sex with persons of unknown serostatus, or sex in exchange for money or drugs), substance use, attitudes toward HIV testing, and medical mistrust. Participants were 106 primarily ethnic-minority women who reported recent substance use and agreed to participate in a study exploring HIV prevention attitudes. Within this sample, the majority of participants had one or more CDC-defined PrEP indications. Findings indicate that medical mistrust was associated with perceived PrEP stereotypes and HIV testing attitudes. These results provide some insight into reasons for low PrEP uptake among women at risk for HIV. Implications for HIV prevention with women are discussed.

Risk-stratified pathways of survivorship care seek to optimize coordination between cancer specialists and primary care physicians based on the whole person needs of the individual. While the principle is supported by leading cancer institutions, translating knowledge to practice confronts a lack of clarity about the meaning of risk stratification, uncertainties around the expectations the model holds for different actors, and health system structures that impede communication and coordination across the care continuum. These barriers must be better understood and addressed to pave the way for future implementation. Recognizing that an innovation is more likely to be adopted when user experience is incorporated into the planning process, a deliberative consultation was held as a preliminary step to developing a pilot project of risk-stratified pathways for patients transitioning from specialized oncology teams to primary care providers. This article presents findings from the deliberative consultation that sought to understand the perspectives of cancer specialists, primary care physicians, oncology nurses, allied professionals, cancer survivors and researchers regarding the following questions: what does a risk stratified model of cancer survivorship care mean to care providers and users? What are the prerequisites for translating risk stratification into practice? What challenges are involved in establishing these prerequisites? The multi-stakeholder consultation provides empirical data to guide actions that support the development of risk-stratified pathways to coordinate survivorship care.

Cancer represents an important cause of disease-related death in children worldwide. Improved treatment and understanding of the ways in which cancer manifests has allowed for a greater prospect of survival in children of all ages. However, variation in childhood cancer experience exists based on factors at the individual, community and systems levels. Throughout the cancer care continuum these factors may influence the access and timeliness of care a child receives, leading to delays in diagnosis and treatment. The pejorative designation 'delay in diagnosis and treatment' is better characterised as lag time, representing an interval that is thought to influence survival and overall outcome. In recent decades, work has been done to expedite early childhood cancer diagnosis through the creation of screening and education-based programmes. Although systematic cancer screening in children poses risks and fails to achieve the goal of early diagnosis, a case has been made for risk-based surveillance that has been shown to improve outcome and reduce occurrence of advanced stage disease in targeted populations. The components of lag time are examined separately and individually. This review highlights the challenges of early diagnosis in childhood cancers and describes important contributors in the cancer care continuum.

Background Antiretroviral therapy (ART) has been shown to significantly reduce the likelihood of transmission to other people as well as promoting the health of people living with Human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) (PLH). The purpose of this study was to assess the HIV care continuum of PLH in Korea using the national health insurance system (NHIS) database. Materials and Methods From 2006 to 2015, ART prescription/laboratory test claim data and enlisted accompanying comorbidities were extracted from the NHIS database. Utilizing these data, proportion of PLH on ART among those who registered to Korea Disease Control and Prevention Agency (KDCA), HIV viral load testing, prescription trends of ART, medication possession ratio (MPR) of ART, and accompanying comorbidities were reviewed. Factors related with MPR 90% increased from 54.3% to 78.2%. The most commonly accompanying comorbidities were dyslipidemia (55.7%), osteoporosis (16.3%), hypertension (15.7%) and diabetes (13.7%), respectively. The proportion of PLH with two or more comorbid conditions increased from 22.0% to 31.6%. Regarding the factors associated with suboptimal compliance, age less than 50 years old, under support of National Medical Aid, alcoholic liver disease, mental and behavioral disorders due to use of alcohol, and ART regimen of protease inhibitor and non-single table regimen integrase strand transfer inhibitor were related with MPR 90% was 78.2% in 2015 and there are still much room for improvement in the aspect of compliance.

Background Reducing HIV incidence requires addressing persistent racial/ethnic disparities in HIV burden. Our goal was to evaluate preexposure prophylaxis (PrEP) delivery, overall and relative to community need, among 7 clinical sites participating in a health department-led demonstration project to increase PrEP in Baltimore city, MD. Methods PrEP care continuum stages (screened, indicated, referred, linked, evaluated, prescribed) were examined among HIV-negative individuals receiving services at participating sites between September 30, 2015 and September 29, 2019. Community need was defined using information on new HIV diagnoses (2016-2018). Differences in care continuum progression by demographics/priority population and comparison of demographic compositions between care continuum stages and new HIV diagnoses were examined using modified Poisson regression and χ2 tests, respectively. Results Among 25,886 PrEP-screened individuals, the majority were non-Hispanic (NH) black (81.1%, n = 20,998), cisgender male (61.1%, n = 15,825), and heterosexual (86.7%, n = 22,452). Overall, 31.1% (n = 8063) were PrEP-indicated; among whom, 56.8% (n = 4578), 15.6% (n = 1250), 10.8% (n = 868), and 9.0% (n = 722) were PrEP-referred, linked, evaluated, and prescribed, respectively. Among 2870 men who have sex with men (MSM), 18.7% (n = 538) were PrEP-prescribed. Across all groups, the highest attrition was between PrEP-referred and PrEP-linked. NH-black race (vs. NH-white) was independently associated with lower likelihood of PrEP prescription (aPR, 0.89; 95% confidence interval, 0.81 to 0.98 controlling for age/gender). Relative to the demographic composition of new HIV diagnoses, fewer NH-blacks (80.2% vs. 54.3%) and more NH-whites (10.7% vs. 30.3%) and MSM were PrEP prescribed (55.2% vs. 74.5%). Conclusions This project showed promise delivering PrEP referrals and prescriptions overall and to MSM. Substantial improvement is needed to improve linkage overall and to decrease disparities in PrEP prescriptions among NH-blacks. Future work should focus on addressing service gaps that hinder PrEP utilization.

Academic internists play a unique role in conducting innovative research, developing educational curricula, and influencing policy. As the population of patients living with and beyond cancer is expected to reach 22 million by 2030, it is essential for academic internists to lead innovative research in clinical care and medical education across the cancer care continuum. We characterized cancer-related topics presented at the 2015-2019 annual meetings of the Society of General Internal Medicine, a national organization of over 3,000 academic general internists. We analyzed all scientific (n = 3,437), Innovation in Medical Education (n = 756), and Innovation in Clinical Practice (n = 664) abstracts for content across the cancer continuum: prevention, screening, diagnosis, treatment, survivorship, and palliative/end-of-life care (P/EOL). Of 3,437 scientific abstracts, 304 (8.8%) related to cancer. Prevention, screening, diagnosis, treatment, survivorship, and P/EOL were addressed in 52 (17.1%), 145 (47.7%), 18 (5.9%), 57 (18.8%), 12 (4.0%), and 29 (9.5%) of scientific abstracts, respectively. Some addressed multiple phases, and 6 were classified as "other." Breast (mean = 18.2, SD = 4.66), colorectal (mean = 12.8, SD = 3.11), and lung (mean = 8.2, SD = 2.29) cancers were most presented in scientific abstracts per year. Five (0.66%) of the 756 Innovation in Medical Education abstracts and 41 (6.2%) of the 665 Innovation in Clinical Practice abstracts addressed cancer. Similarly, they primarily focused on screening and prevention. To lead innovation in clinical care, education, and policy across the cancer continuum and prepare the future workforce, academic internists should expand their focus to later phases, particularly survivorship and P/EOL.

This study was designed to: (1) characterize longitudinal patient-reported outcomes (PROs) between breast cancer patients undergoing lumpectomy and mastectomy and (2) compare return to baseline scores at 3 months and 6 months postoperatively. Newly diagnosed breast cancer patients seen at an academic breast center between June 2019 and February 2021 were invited to participate in longitudinal PRO surveys at their initial clinic visit. If willing to participate, patients were emailed the validated BREAST-Q™ questionnaire at the initial clinic visit (baseline), 2 weeks after surgery, and then every 3 months for the first year. We used linear mixed models to estimate the differences in slopes over time between lumpectomy and mastectomy for each PRO measure. Pearson’s Chi-square tests with Yates’ continuity correction were used to compare proportions of patients who return to baseline PRO scores. P < 0.05 was considered significant. Of 164 patients invited to participate, 100 (61%) completed a baseline survey and were included in analyses. Mastectomy patients had significantly greater decreases in breast satisfaction (P = 0.002), psychosocial well-being (P < 0.0001), and sexual well-being (P < 0.0001) over time compared with lumpectomy patients. Both surgical groups reported a decrease in physical well-being, although the decline was more significant in lumpectomy patients (P = 0.005). At 3 months and 6 months after surgery, significantly larger proportions of lumpectomy patients returned to their baseline breast satisfaction, psychosocial well-being, and physical well-being compared with mastectomy patients. Understanding how outcomes important to patients change over the care continuum can provide opportunities for early intervention and may prevent debilitating long-term morbidities of treatment.

Background Primary care physicians have diverse responsibilities. To collaborate with cancer specialists efficiently, they should prioritise roles desired by other collaborators rather than roles based on their own beliefs. No previous studies have reported the priority of roles such clinic-based general practitioners are expected to fulfil across the cancer care continuum. This study clarified the desired roles of clinic-based general practitioners to maximise person-centred cancer care. Methods A web-based multicentre questionnaire in Japan was distributed to physicians in 2019. Physician roles within the cancer care continuum were divided into 12 categories, including prevention, diagnosis, surgery, follow-up with cancer survivors, chemotherapy, and palliative care. Responses were evaluated by the proportion of three high-priority items to determine the expected roles of clinic-based general practitioners according to responding physicians in similarly designated roles. Results Seventy-eight departments (25% of those recruited) from 49 institutions returned questionnaires. Results revealed that some physicians had lower expectations for clinic-based general practitioners to diagnose cancer, and instead expected them to provide palliative care. However, some physicians expected clinic-based general practitioners to be involved in some treatment and survivorship care, though the clinic-based general practitioners did not report the same priority. Conclusion Clinic-based general practitioners prioritised involvement in prevention, diagnoses, and palliative care across the cancer continuum, although lower expectations were placed on them than they thought. Some additional expectations of their involvement in cancer treatment and survivorship care were unanticipated by them. These gaps represent issues that should be addressed.

Despite extraordinary achievements in over the past 20 years, the field of transplantation remains hindered by relatively narrow metrics for success. Eudaimonia is an Aristotelian concept that refers to flourishing, or achieving the best conditions possible, in every sense. The vast amounts of patient data that are collected throughout the transplant care continuum, ranging from social determinants of health to genomic profiles and patient-reported outcomes, afford us unprecedented opportunity to enhance our definition of success for our transplant patients. We must engage the technologies available for data integration and analysis and apply them in an insightful way, such that our clinical practice evolves beyond patient and graft survival and toward a more comprehensive state of wellness.

Cancer care is becoming more complex each year, making the patient’s path to, and through the care continuum confusing and daunting. Patient-navigation programs for cancer patients have grown in recent years, but their navigation support is fragmented in many ways and often incomplete, lessening their effectiveness. Digital tools to support the cancer patient navigator can make them more effective and allow more patients to receive navigation support. A multifaceted analysis of the needs for such tools is presented. The analysis methods include literature review, domain analysis, and qualitative interviews with a sample of ten cancer patient navigators.

A large proportion of HIV infections among men who have sex with men occur within primary partnerships, however, there is a lack of research focused on serodiscordant male couples. We used baseline data collected as part of Project Stronger Together-a randomized controlled trial to improve treatment outcomes among 155 serodiscordant male couples. We described engagement in HIV care/prevention using the HIV treatment cascade and PrEP care continuum. Among partners living with HIV, 86.5% were linked to care, 77.4% retained in care, 81.3% prescribed ART, 60.7% adherent, and 67.7%virally suppressed. Among HIV-negative partners, 62.6% were willing to take PrEP, 48.4% had ever taken PrEP, and 26.5% were adherent to PrEP. Black partners living with HIV had lower odds of being virally suppressed compared to White partners. Our findings provide evidence to suggest designing programs to address the racial disparities in viral suppression, addressing barriers to HIV prevention/treatment, and improving PrEP education.

Objectives Most Medicaid beneficiaries with hepatitis C virus (HCV) are not treated with direct-acting agents because of budget constraints, but they experience costly complications after becoming Medicare eligible. Maryland's "total coverage" proposal could receive a credit from Medicare to offset Medicaid investments in treatments that could lead to Medicare savings. This study analyzes the cost-effectiveness and budget impact of total coverage for HCV treatments sponsored by state Medicare and Medicaid. Study design A Markov model simulated patients going through the care continuum of HCV. The model simulated 3 pathways: standard coverage with a 50% probability of screening for HCV and 20% probability of treatment; risk-stratified total coverage with assumed 80% probability of screening and 60% treatment rate; and total coverage with assumed 80% probability of screening and 100% treatment rate. Methods The model calculated US$ and quality-adjusted life-years (QALYs) to produce an incremental cost-effectiveness ratio evaluated at a willingness-to-pay threshold of $100,000/QALY. The budget impact for the state of Maryland was calculated in terms of per member per year. Results Total coverage and risk-stratified coverage saved $158 per patient and $178 per patient, respectively, compared with standard care at an increased effectiveness of 0.05 and 0.02 QALYs over 25 years. Total coverage and risk-stratified total coverage would save $1.0 billion and $1.1 billion, respectively, after 25 years. Conclusions Medicare-Medicaid partnerships to pay for all HCV treatments today represent good value and a low budget impact. States with trouble covering HCV treatments should consider using this model to plan coverage decisions.

Caregiving experiences are not static. They change across the disease trajectory and care continuum. However, it is not clear how caregiver gender or relationship type is related to evolving caregiver experiences over time. This qualitative study informed by constructivist grounded theory and framework analysis explored the experiences over time of men and women who were adult children and spousal caregivers to persons with Alzheimer’s disease. Forty spousal (10 husbands and 10 wives) and adult children (10 sons and 10 daughters) caregivers to persons with Alzheimer’s disease were interviewed using a semi-structured interview guide. Our findings suggest the experiences of caregiving, examined through a gender and relationship type lens, are complex and variable. The caregiving experience was not related to gender or relationship type alone, but often to a combination of the two. For instance, spousal caregivers did not immediately accept the diagnosis, with wives being more optimistic than husbands about a slow progression of the disease. Adult children caregivers were concerned about the ways the caregiving role would impact their personal and career obligations and sought ways to mitigate the changes to their daily lives. Sons and husband caregivers largely utilized home and community health services to assist with personal care tasks, whereas daughters and wives utilized the same services to allow them to complete other caregiving tasks (e.g., housekeeping). Recognition of the complex inter-relationships among gender and relationship type on caregiving experiences supports the need for family-centered interventions. This article also extends sex and gender research as it highlights that an in-depth understanding of the caregiving experience cannot be understood by gender alone and relationship type must also be considered.

Linkage to and retention in HIV care, as conceptualized in the HIV care continuum, remain critical steps towards achieving and maintaining viral suppression. We evaluated recently published (Jan 2018–Nov 2020) peer-reviewed clinical trials of linkage to and retention in care outcomes in the United States. We identified 12 trials evaluating linkage to and retention in care outcomes in the United States. Most trials did not adhere to standardized definitions or metrics for linkage to or retention in HIV care, hindering comparisons between studies. Four interventions indicated improvements on linkage to or retention in HIV care at follow-up, relying on behavioral incentives and/or case management as key intervention strategies. We recommend the adoption standardize metrics across linkage and retention trials, and the future use of implementation science frameworks to identify implementation facilitators and barriers, and evaluate key strategies associated with improvements in linkage to and retention in care.

A team of health care stakeholders and researchers collaboratively developed a qualitative model and graphic representation of the continuum of HIV care in Vancouver to inform delivery of antiretroviral therapy and other HIV health services. The model describes the patient journey through the HIV care continuum, including states of infection, health services, and care decisions. We used a Unified Modelling Language (UML) activity diagram to capture patient and provider activities and to guide the construction of a UML state machine diagram. The state machine diagram captures model agent states in a formalism that facilitates the development of system dynamics or agent-based models. These quantitative models can be applied to optimizing the allocation of resources, and to evaluate potential strategies for improved patient care and system performance. The novel approach of combining UML diagrams we present provides a general method for modelling capacity ­­­management strategies within complex health systems.

Despite the prominence of self-efficacy as a predictor of antiretroviral therapy (ART) adherence, relatively little work has examined domain-specific associations with steps in the care continuum or the possibility that substance use may have domain-specific associations with self-efficacy. This study analyzed data from a sample of 174 people living with HIV recruited through three clinics in the New York City metro area. Consistent with hypotheses, path analysis showed that appointments kept and viral load were each predicted only by their respective domain-specific self-efficacy components (i.e., self-efficacy for keeping appointments, B = 0.01, p = .04; and self-efficacy for taking ART medications, B = -0.02, p < .01). Path models also indicated domain-specific associations with substance use. Self-efficacy for keeping appointments was negatively associated with severity of drug use (B = -1.81, p < .01); meanwhile, self-efficacy for taking ART medications was negatively associated with severity of alcohol use (B = -0.52, p < .01). Accordingly, studies assessing barriers to retention in the HIV care continuum should conduct multi-domain assessments of self-efficacy for differential associations with specific behaviors. Furthermore, HIV care providers might consider screening for domain-specific self-efficacy to identify patients at risk of drop-out and tailoring interventions to various care continuum domains.

The diverse manifestations of heart failure led to complex treatment guidelines and care scenarios and therefore always require an integrated, multidisciplinary care approach. Patients with chronic heart failure suffer from a large number of cardiac and noncardiac comorbidities. For example, iron deficiency leads to decreased performance and exertional dyspnea and should be diagnosed. Psychological screening questionnaires should be used for the early detection of psychological comorbidities.ARNI and SGLT-inhibitors expand the pharmacotherapeutic possibilities and gain in importance. The constant development of diagnostic possibilities and therapeutic options must be implemented consistently into the care continuum in order to have a lasting effect. The challenge of interdisciplinary coordination can be significantly reduced through jointly agreed process logs (e. g. within the framework of integrated supply contracts or a Heart Failure Unit Network).

Background: Young women diagnosed with breast cancer have unique physical and psycho-social needs that are often unaddressed. Patient-centered models of care, including eHealth strategies, can help empower young women to self-manage symptoms and psychosocial concerns, as well as support informational needs throughout the cancer care trajectory. Methods: YES (Young, Empowered and Strong) is an interactive web-based portal designed with patient-reported outcome questionnaires (PROs) that trigger delivery of young breast cancer patient-specific education and symptom management materials. Personal journal and messaging components are also available. We piloted the YES portal among young women ( Citation Format: Tal Sella, Craig Snow, Hannah Freeman, Phillip D Poorvu, Shoshana M Rosenberg, Ann H Partridge. Young, empowered & strong (YES): A web-based education and supportive care intervention for young women with breast cancer across the care continuum [abstract]. In: Proceedings of the 2020 San Antonio Breast Cancer Virtual Symposium; 2020 Dec 8-11; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2021;81(4 Suppl):Abstract nr PD12-08.

The Institute of Medicine (IOM) report Cancer Care for the Whole Patient: Meeting Psychosocial Needs outlines a standard of care that includes the provision of psychosocial care across the cancer care continuum. 1 Additionally, evidence supports the efficacy of psychological interventions for cancer patients. 2,3 The IOM report emphasizes the need to address psychological distress and makes recommendations regarding psychosocial oncology (PSO) services. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.

Unmet needs can impede optimal care engagement, impacting the health and well-being of people living with HIV (PLWH); yet, whether unmet needs differ by care engagement status is not well understood. Using surveys and qualitative interviews, we examined and compared unmet needs for PLWH (n = 172) at different levels of care engagement. Unmet needs varied only slightly by care status. Survey findings revealed that provision of housing, emergency financial assistance, employment assistance, and food security were the greatest unmet need; for those in care, housing was the greatest unmet need, whereas for those sporadically in care or out of care, employment assistance was the greatest unmet needs. Qualitative interviews likewise illustrated that a lack of financial resources including insurance, housing, employment, and transportation presented barriers to care engagement across all care groups. Our findings indicate that unmet needs among PLWH are complex and multi-faceted across care engagement status.

Purpose of Review This review summarizes HIV care delivered via telemedicine before and during the COVID-19 pandemic and highlights areas of study to inform optimal usage of telemedicine in HIV clinical practice in the future. Recent Findings To address barriers to care created by the COVID-19 pandemic, regulatory agencies and payors waived longstanding restrictions, which enabled rapid expansion of telemedicine across the country. Preliminary data show that providers and persons with HIV (PWH) view telemedicine favorably. Some data suggest telemedicine has facilitated retention in care, but other studies have found increasing numbers of PWH lost to follow-up and worsened virologic suppression rates despite offering video and/or telephone visits. Summary The COVID-19 pandemic has exacerbated gaps in the HIV care continuum. To help mitigate the impact, most clinics have adopted new virtual care options and are now evaluating usage, impact, and concerns. Further research into the effects of telemedicine on HIV care and continued work towards universal access are needed.

To control the HIV epidemic at the population level, a 90–90–90 target has been proposed for sub-Saharan Africa, whereby 90 percent of people living with HIV (PLH) should know their HIV status, 90 ...

This community-based study explored the lived experiences of being in and going through the rural HIV care continuum among 15 gay and bisexual men (GBM) with HIV who live in a rural area of a Midwe...

Introduction: Health systems worldwide are challenged to address the health-care needs of persons with COVID-19. After the immediate need to mitigate the spread of COVID-19 and scale up relevant health-care capacities, one major challenge has emerged – scaling up rehabilitation to address the functioning limitations experienced by COVID-19 patients/survivors. To meet this challenge, the International Society of Physical and Rehabilitation Medicine (ISPRM) endeavors to develop a tool for the assessment and reporting of functioning of COVID-19 patients/survivors – “ClinFIT COVID- 19” to assist health professionals to optimally address patients' health-care needs. The first step in the development process is identifying the International Classification of Functioning, Disability, and Health (ICF) categories that ClinFIT COVID-19 should cover for acute, postacute, and long-term settings. Methods: The multistep process to develop the ClinFIT COVID-19 category list involved the development of a proposed list of ICF categories, a survey of ISPRM members worldwide about the proposed category list, and a postsurvey consultation with the ISPRM ClinFIT Task Force. Results: The final category list for the acute care context contains the seven categories provided to the survey participants (energy/drive functions, sleep, emotional functions, pain, exercise tolerance functions, carrying out daily routine, and walking) plus six categories related to respiration, mobility, and cognition. The postacute and long-term care versions also contain the seven categories plus additional categories relevant for the specific context. The postacute version contains 15 categories and the long-term 16 categories. Conclusions: To advance the next steps, the leaders of ISPRM and the Task Force call national and international societies of rehabilitation professionals to join this coordinated effort.

Lack of family involvement is barrier to antiretroviral therapy adherence among adolescent girls and young women (AGYW). This study assessed family support for AGYW's engagement along the HIV care continuum to inform the design of a family-focused intervention in Lusaka, Zambia. We conducted 16 in-depth interviews and four focus group discussions with 40 AGYW living with HIV. Three strategies were identified to strengthen family support. First, emotional and instrumental support are highly valued by AGYW and should be further developed or reinforced. Second, AGYW wanted more informational support and open discussion of HIV from family, and an intervention should aim to enhance these types of support. Third, existing appraisal support reinforced anticipated stigma among AGYW and discouraged disclosure, yet participants wished for more interactions with peers living with HIV. Appraisal support should therefore be reframed to help AGYW decide to whom they should disclose and how to do so safely.

Human trafficking is a multibillion dollar industry and a public health crisis that is present in every country and every state in the United States. Victims and survivors of forced labor and commercial sex exploitation suffer physical, emotional, and psychological traumas that have long-lasting effects. They access the health care system for treatment, often going unrecognized by providers or clinicians. Nurse executives, through the application of the American Organization of Nursing Leadership (AONL) Nurse Executive Competencies, are uniquely qualified to lead efforts to combat trafficking through advocacy, by serving as catalysts for change, and by influencing nursing practice across the care continuum.

Introduction HIV-related stigma continues to serve as a major barrier to HIV care. HIV stigma reduction interventions are urgently needed to promote and protect the health of persons living with HIV (PLWH). Resilience has been identified as a potential leverage to mitigate the impact of HIV-related stigma among PLWH. Methods We examined whether two resilience measures (i.e., social support and resilience assets and resources [RAR]) moderated the relationship between experienced HIV stigma and the HIV care continuum as well as how they moderated the relationship between the consequences of experienced HIV stigma (CES) and the HIV care continuum among 300 PLWH in Louisiana. Separate bootstrapping analyses were conducted to test for evidence of moderated moderation. Results Most participants were Black (79%) and had been living with HIV for 10 years or more. A relatively high sample of men who have sex with men (MSM) were enrolled (37%). The most common CES were depression (67%). The most common manifestation of experienced HIV stigma was being gossiped about (53%). Participants reported moderate levels of social support. In terms of RAR, most participants (71%) reported that they knew of groups that could support them in responding to experienced HIV stigma. After adjusting for potential covariates, social support and RAR both significantly moderated the relationship between experienced HIV stigma and length of time since their last HIV care visit, B(SE) = .003(.001), p = .03. At high levels of RAR and high levels of social support, those with higher levels of experienced HIV stigma reported a longer length of time since their last HIV care visit than those who reported lower levels of experienced HIV stigma (B(SE) = .17(.04), p

Given the rising numbers of older adults in Canada experiencing falls, evidence-based identification of fall risks and plans for prevention across the continuum of care is a significant priority for health care providers. A scoping review was conducted to synthesize published international clinical practice guidelines (CPGs) and recommendations for fall risk screening and assessment in older adults (defined as 65 years of age and older). Of the 22 CPGs, 6 pertained to multiple settings, 9 pertained to community-dwelling older adults only, 2 each pertained to acute care and long-term care settings only, and 3 did not specify setting. Two criteria, prior fall history and gait and balance abnormalities, were applied either independently or sequentially in 19 CPG fall risk screening algorithms. Fall risk assessment components were more varied across CPGs but commonly included: detailed fall history; detailed evaluation of gait, balance, and/or mobility; medication review; vision; and environmental hazards assessment. Despite these similarities, more work is needed to streamline assessment approaches for heterogeneous and complex older adult populations across the care continuum. Support is also needed for sustainable implementation of CPGs in order to improve health outcomes.

Background Increased uptake of hepatitis C virus (HCV) treatment among people who inject drugs (PWID) will be critical to achieve HCV elimination goals. There are limited data on HCV treatment uptake among PWID recruited from community-based settings in the HCV direct-acting antiviral (DAA) era. Methods We analyzed data from PWID with HCV newly recruited into the Baltimore, Maryland-based AIDS Linked to the IntraVenous Experience (ALIVE) cohort between 2015 and 2018. We characterized the HCV care continuum and evaluated factors associated with HCV treatment uptake. Results Of the 418 PWID with HCV, the median age was 49 years and most (88%) reported recent injection drug use (IDU). Overall, 23% had ever been evaluated by a provider for HCV treatment, 17% ever initiated DAA treatment, and 13% were cured of HCV infection. Treatment uptake approximately doubled between 2015 and 2018 (13% to 26%, p=0.01). In multivariable analyses, HIV infection (adjusted Odds Ratio [aOR] 2.5 [95% Confidence Interval (CI) 1.3, 4.8]), current employment (aOR 4.1 [CI 1.2, 14.4]), having a primary care provider (aOR 4.3 [CI 1.2, 14.9), and longer duration of IDU (aOR 1.3 [CI 1.1, 1.6]) were positively associated with HCV treatment. PWID with a lower annual income (≤$5,000) were less likely to have initiated HCV treatment (aOR 0.5 [CI 0.3, 0.98]). Conclusions Although HCV treatment uptake among PWID in this community-based setting in the DAA era remains suboptimal, it is encouraging that treatment uptake has increased in recent years. Innovative strategies are needed to reach all PWID infected with HCV.

The aim of this study was to generate a theoretical stage model that describes transgender women's coping strategies and responses after a new HIV diagnosis. The sample included 18 transgender women living with HIV in a large metropolitan city in central Indiana. Semi-structured interviews were conducted, digitally recorded, transcribed verbatim, and analyzed using grounded theory methods. Participants commonly described the experience of being newly diagnosed with HIV as, having the world change. Four stages through which attempts at coping occurred were identified: having the world come crashing down; shutting out the world; living in a dark world; and reconstructing the world. This model advances our understanding of the social and behavioral factors that influence how transgender women cope with a new HIV diagnosis and how their coping responses influence entry and engagement in the HIV care continuum.

Background Hepatitis C virus (HCV) remains endemic among people who use drugs (PWUD). Measures of HCV community viral load (CVL) and HCV care continuum outcomes may be valuable for ascertaining unmet treatment need and for HCV surveillance and control. Methods Data from patients in an opioid treatment program during 2013–2016 were used to (1) identify proportions of antibody and viral load (VL) tested, linked-to-care, and treated, in 2013–2014 and 2015–2016, and pre- and postimplementation of qualitative reflex VL testing; (2) calculate engaged-in-care HCV CVL and “documented” and “estimated” unmet treatment need; and (3) examine factors associated with linkage-to-HCV-care. Results Among 11 267 patients, proportions of HCV antibody tested (52.5% in 2013–2014 vs 73.3% in 2015–2016), linked-to-HCV-care (15.7% vs 51.8%), and treated (12.0% vs 44.7%) all increased significantly. Hispanic ethnicity was associated with less linkage-to-care, and Manhattan residence was associated with improved linkage-to-care. The overall engaged-in-care HCV CVL was 4 351 079 copies/mL (standard deviation = 7 149 888); local HCV CVLs varied by subgroup and geography. Documented and estimated unmet treatment need decreased but remained high. Conclusions After qualitative reflex VL testing was implemented, care continuum outcomes improved, but gaps remained. High rates of unmet treatment need suggest that control of the HCV epidemic among PWUD will require expansion of HCV treatment coverage.

Research across the cancer care continuum indicates peer support can improve patient outcomes, yet little is known about how cancer peer support programs are implemented in practice. This study aimed to describe cancer peer support programs in “real world” (i.e., non-research) settings. A web search identified 100 programs in a wide variety of settings and locations; 48 published contact information on their website and were invited to participate in semi-structured interviews. Twenty-nine program leaders participated. From the interviews, we observed eight primary themes, which centered on challenges and responses regarding training and content of peer support services as well as program organization and support. Obstacles include inconsistent funding, reliance on volunteers, and physician concerns about peer supporters’ advice to patients, while increasing diversity, reach, and accessibility are future priorities. Peer support should be recognized and funded as a routine part of cancer care in order to expand its reach and address priorities such as increasing the diversity of supporters and those they help. Electronic supplementary material The online version of this article (10.1007/s13187-020-01861-8) contains supplementary material, which is available to authorized users.

Young adults living with HIV (YALH) have lower rates of retention in care and HIV viral suppression. Multiple barriers exist to engage YALH in care. We developed and implemented a multifaceted, mobile application-based intervention, “OPT-In for Life,” by targeting YALH to encourage retention in care and eventually viral suppression. The app integrated multiple user-friendly features for YALH to manage their HIV care, including a two-way secure messaging function, HIV-related laboratory results, and appointment or medication reminders. We recruited 92 YALH who were 18 to 34 years old and were newly diagnosed with HIV, had a history of falling out of care, or had a detectable HIV viral load into this intervention. Study participants used the app to manage their HIV care and to communicate and interact with their HIV care team. During the intervention period, the retention rate among our study participants increased from 41.3% at baseline to 78.6% at 6-month follow-up, maintained at 12-month follow-up (79.8%), and slightly decreased to 73.4% at 18-month follow-up but it was still significantly higher than the baseline retention rate ( p < .0001). The viral suppression rate (HIV RNA

In 2014, trained health care provider capacity was insufficient to deliver care to an estimated 70,000 persons in Maryland with chronic hepatitis C virus (HCV) infection. The goal of Maryland Community Based Programs to Test and Cure Hepatitis C, a public health implementation project, was to improve HCV treatment access by expanding the workforce. Sharing the Cure (STC) was a package of services deployed 10/1/14 to 9/30/18 that included enhanced information technology and public health infrastructure, primary care provider training, and practice transformation. Nine primary care sites enrolled. HCV clinical outcomes were documented among individuals who presented for care at sites and met criteria for HCV testing including risk factor or birth cohort (born between 1945 and 1965) based testing. Fifty-three providers completed the STC training. STC providers identified 3,237 HCV antibody positive patients of which 2,624 (81%) were RNA+. Of those HCV RNA+, 1,739 (66%) were staged, 932 (36%) were prescribed treatment, 838 (32%) started treatment, 721 (28%) completed treatment, and 543 (21%) achieved cure. Among 1,739 patients staged, 693 (40%) patients had a liver fibrosis assessment score < F2, rendering them ineligible for treatment under Maryland Medicaid guidelines. HCV RNA testing among HCV antibody positive people increased from 40% (baseline) to 95% amongst STC providers. Of 554 patients with virologic data reported, 543 (98%) achieved cure. Primary care practices can effectively serve as HCV treatment centers to expand treatment access. However, criteria by insurance providers in Maryland was a major barrier to treatment.

Infection with hepatitis C virus (HCV) is pervasive throughout the United States of America as we fight the ongoing urban and rural opioid epidemics and rising rates of fatal and non-fatal overdoses. While risk factors for incident HCV abound, our country and the State of Delaware have increasing access to highly effective, short-course, curative HCV treatments. Despite unprecedented medical advances for HCV, as well as expanded HCV screening guidelines calling for universal adult HCV screening and screening during every pregnancy, the epidemiology of HCV at the national and statewide levels continues to be lacking. In attempting to gather, interpret, and present the highest quality available data, we conclude that HCV remains a pressing public and individual health concern for Delawareans, and our nation at large. We urge stakeholders in Delaware to make concerted efforts to fill in the many remaining gaps of HCV epidemiology in order to better inform public health resource allocation, educate the public and healthcare professionals regarding viral hepatitis, and ultimately improve the HCV care continuum, spanning from increasing rates of universal HCV screening and diagnosis to linkage to care to treatment initiation all the way to cure and beyond.

While stigma associated with human immunodeficiency virus (HIV) infection among men who have sex with men (MSM) is well recognized, there remains relatively limited intervention data on effective stigma reduction strategies. This systematic review was conducted to highlight the mechanisms through which sexual and HIV stigma is reduced in relation to HIV prevention and care engagement. Search of PubMed and Scopus resulted in 11 tested interventions to include in our preliminary model constructed from programme frameworks and recommendations. We refined the preliminary programme theory to identify whether, why, or how mitigation strategies produce observed outcomes. Our review showed that the interventions produced stigma reduction through three groups of mechanisms: (1) Self-acceptance, leadership, and motivational activation for behaviour change from intrapersonal strategies, such as education and mobile health strategies, which intervene on internalized and anticipated stigma; (2) socialization, knowledge sharing, and social empowerment from interpersonal strategies, such as peer support and training for care providers; and (3) community introspection, self-reflection, and humanistic activation from structural strategies such as community leaders’ sensitization, which intervene on both anticipated and enacted stigma. Interventions mechanisms act complementarily and can be activated in different contexts in which MSM exposed to and infected with HIV are living.

To assess the impact of a Community Health Worker (CHW) intervention within HIV primary care on patient outcomes. We evaluated a 10-site initiative integrating CHWs into HIV care, examining changes...

Author(s): Haber, Noah A; Lesko, Catherine R; Fox, Matthew P; Powers, Kimberly A; Harling, Guy; Edwards, Jessie K; Salomon, Joshua A; Lippman, Sheri A; Bor, Jacob; Chang, Angela Y; Anglemyer, Andrew; Pettifor, Audrey | Abstract: ObjectivesThe Joint United Nations Programme on HIV/AIDS (UNAIDS) 90-90-90 and other cross-sectional metrics can lead to potentially counterintuitive conclusions when used to evaluate health systems' performance. This study demonstrates how time and population dynamics impact UNAIDS 90-90-90 metrics in comparison with a longitudinal analogue.DesignA simplified simulation representing a hypothetical population was used to estimate and compare inference from UNAIDS 90-90-90 metrics and longitudinal metrics based on Kaplan-Meier-estimated 2-year probability of transition between stages.MethodsWe simulated a large cohort over 15 years. Everyone started out at risk for HIV, and then transitioned through the HIV care continuum based on fixed daily probabilities of acquiring HIV, learning status, entering care, initiating antiretroviral therapy (ART), and becoming virally suppressed, or dying. We varied the probability of ART initiation over three five-year periods (low, high, and low). We repeated the simulation with an increased probability of death.ResultsThe cross-sectional probability of being on ART among persons who were diagnosed responded relatively slowly to changes in the rate of ART initiation. Increases in ART initiation rates caused apparent declines in the cross-sectional probability of being virally suppressed among persons who had initiated ART, despite no changes in the rate of viral suppression. In some cases, higher mortality resulted in the cross-sectional metrics implying improved healthcare system performance. The longitudinal continuum was robust to these issues.ConclusionThe UNAIDS 90-90-90 care continuum may lead to incorrect inference when used to evaluate health systems performance. We recommend that evaluation of HIV care delivery include longitudinal care continuum metrics wherever possible.

Background Human immunodeficiency virus (HIV)–experienced clinicians are critical for positive outcomes along the HIV care continuum. However, access to HIV-experienced clinicians may be limited, particularly in nonmetropolitan areas, where HIV is increasing. We examined HIV clinician workforce capacity, focusing on HIV experience and urban–rural differences, in the Southern United States. Methods We used Medicaid claims and clinician characteristics (Medicaid Analytic eXtract [MAX] and MAX Provider Characteristics, 2009–2011), county-level rurality (National Center for Health Statistics, 2013), and diagnosed HIV cases (AIDSVu, 2014) to assess HIV clinician capacity in 14 states. We assumed that clinicians accepting Medicaid approximated the region’s HIV workforce, since three-quarters of clinicians accept Medicaid insurance. HIV-experienced clinicians were defined as those providing care to ≥ 10 Medicaid enrollees over 3 years. We assessed HIV workforce capacity with county-level clinician-to-population ratios, using Wilcoxon-Mann-Whitney tests to compare urban–rural differences. Results We identified 5012 clinicians providing routine HIV management, of whom 28% were HIV-experienced. HIV-experienced clinicians were more likely to specialize in infectious diseases (48% vs 6%, P Conclusions Significant urban–rural disparities exist in HIV-experienced workforce capacity for communities in the Southern United States. Policies to improve equity in access to HIV-experienced clinical care for both urban and rural communities are urgently needed.

The cancer caregiving experience is multifaceted and dynamic across different phases of the cancer care continuum. This longitudinal study examined the trajectories of CQOL and caregiver emotional distress across the first year post-diagnosis.Participants were 111 caregivers of newly diagnosed patients who completed baseline, 6-month, and 12-month follow-ups. Trajectories of CQOL, CQOL domains, caregiver depression, anxiety, and stress, were estimated using linear and quadratic mixed models.The trajectory of overall CQOL followed an inverse U-shape trend, while caregiver depression, anxiety, and stress remained stable. For CQOL domains, physical/practical needs followed a gradual trend of improvement, while social support followed an inverse U-shape trend; caregiver burden, emotional reactivity, and responsibility/duty remained stable.The multidimensional needs of caregivers of newly diagnosed patients appeared to follow different trajectories across the first year post-diagnosis. While most CQOL domains remained stable, caregivers may experience adjustment difficulties in terms of relational concerns and social support.