Perceptions and Utilization of Online Peer Support Among Informal Dementia Caregivers: Survey Study.

Background: Informal dementia caregivers are those who care for a person living with dementia and do not receive payment (eg, family members, friends, or other unpaid caregivers). These informal caregivers are subject to substantial mental, physical, and financial burdens. Online communities enable these caregivers to exchange caregiving strategies and communicate experiences with other caregivers whom they generally do not know in real life. Research has demonstrated the benefits of peer support in online communities, but this research is limited, focusing merely on caregivers who are already online community users. Objective: We aimed to investigate the perceptions and utilization of online peer support through a survey. Methods: Following the Andersen and Newman Framework of Health Services Utilization and using REDCap (Research Electronic Data Capture), we designed and administered a survey to investigate the perceptions and utilization of online peer support among informal dementia caregivers. Specifically, we collected types of information that influence whether an informal dementia caregiver accesses online peer support: predisposing factors, which refer to the sociocultural characteristics of caregivers, relationships between caregivers and people living with dementia, and belief in the value of online peer support; enabling factors, which refer to the logistic aspects of accessing online peer support (eg, eHealth literacy and access to high-speed internet); and need factors, which are the most immediate causes of seeking online peer support. We also collected data on caregivers' experiences with accessing online communities. We distributed the survey link on November 14, 2022, within two online locations: the Alzheimer's Association website (as an advertisement) and ALZConnected (an online community organized by the Alzheimer's Association). We collected all responses on February 23, 2023, and conducted a regression analysis to identifyn factors that were associated with accessing online peer support. Results: We collected responses from 172 dementia caregivers. Of these participants, 140 (81.4%) completed the entire survey. These caregivers were aged 19 to 87 (mean 54, SD 13.5) years, and a majority were female (123/140, 87.9%) and White (126/140, 90%). Our findings show that the behavior of accessing any online community was significantly associated with participants' belief in the value of online peer support (P=.006). Moreover, of the 40 non-online community caregivers, 33 (83%) had a belief score above 24-the score that was assigned when a neutral option was selected for each belief question. The most common reasons for not accessing any online community were having no time to do so (14/140, 10%) and having insufficient online information-searching skills (9/140, 6.4%). Conclusions: Our findings suggest that online peer support is valuable, but practical strategies are needed to assist informal dementia caregivers who have limited time or online information-searching skills.

Examining Online Behaviors of Adult-Child and Spousal Caregivers for People Living With Alzheimer Disease or Related Dementias: Comparative Study in an Open Online Community.

BACKGROUND: Alzheimer disease or related dementias (ADRD) are severe neurological disorders that impair the thinking and memory skills of older adults. Most persons living with dementia receive care at home from their family members or other unpaid informal caregivers; this results in significant mental, physical, and financial challenges for these caregivers. To combat these challenges, many informal ADRD caregivers seek social support in online environments. Although research examining online caregiving discussions is growing, few investigations have distinguished caregivers according to their kin relationships with persons living with dementias. Various studies have suggested that caregivers in different relationships experience distinct caregiving challenges and support needs. OBJECTIVE: This study aims to examine and compare the online behaviors of adult-child and spousal caregivers, the 2 largest groups of informal ADRD caregivers, in an open online community. METHODS: We collected posts from ALZConnected, an online community managed by the Alzheimer's Association. To gain insights into online behaviors, we first applied structural topic modeling to identify topics and topic prevalence between adult-child and spousal caregivers. Next, we applied VADER (Valence Aware Dictionary for Sentiment Reasoning) and LIWC (Linguistic Inquiry and Word Count) to evaluate sentiment changes in the online posts over time for both types of caregivers. We further built machine learning models to distinguish the posts of each caregiver type and evaluated them in terms of precision, recall, F1-score, and area under the precision-recall curve. Finally, we applied the best prediction model to compare the temporal trend of relationship-predicting capacities in posts between the 2 types of caregivers. RESULTS: Our analysis showed that the number of posts from both types of caregivers followed a long-tailed distribution, indicating that most caregivers in this online community were infrequent users. In comparison with adult-child caregivers, spousal caregivers tended to be more active in the community, publishing more posts and engaging in discussions on a wider range of caregiving topics. Spousal caregivers also exhibited slower growth in positive emotional communication over time. The best machine learning model for predicting adult-child, spousal, or other caregivers achieved an area under the precision-recall curve of 81.3%. The subsequent trend analysis showed that it became more difficult to predict adult-child caregiver posts than spousal caregiver posts over time. This suggests that adult-child and spousal caregivers might gradually shift their discussions from questions that are more directly related to their own experiences and needs to questions that are more general and applicable to other types of caregivers. CONCLUSIONS: Our findings suggest that it is important for researchers and community organizers to consider the heterogeneity of caregiving experiences and subsequent online behaviors among different types of caregivers when tailoring online peer support to meet the specific needs of each caregiver group.

A Blueprint for the Conduct of Large, Multisite Trials in Telemedicine.

Recent literature supports the efficacy and efficiency of telemedicine in improving various health outcomes despite the wide variability in results. Understanding site-specific issues in the implementation of telemedicine trials for broader replication and generalizability of results is needed. Lessons can be learned from existing trials, and a blueprint can guide researchers to conduct these challenging studies using telemedicine more efficiently and effectively. This viewpoint presents relevant challenges and solutions for conducting multisite telemedicine trials using 7 ongoing and completed studies funded by the Patient-Centered Outcomes Research Institute portfolio of large multisite trials to highlight the challenges in implementing telemedicine trials. Critical issues of ensuring leadership and buy-in, appropriate funding, and diverse and representative trials are identified and described, as well as challenges related to clinical, informatics, regulatory, legal, quality, and billing. The lessons learned from these studies were used to create a blueprint of key aspects to consider for the design and implementation of multisite telemedicine trials.

Selective inversion recovery quantitative magnetization transfer imaging: Toward a 3 T clinical application in multiple sclerosis.

BACKGROUND: Assessing the degree of myelin injury in patients with multiple sclerosis (MS) is challenging due to the lack of magnetic resonance imaging (MRI) methods specific to myelin quantity. By measuring distinct tissue parameters from a two-pool model of the magnetization transfer (MT) effect, quantitative magnetization transfer (qMT) may yield these indices. However, due to long scan times, qMT has not been translated clinically. OBJECTIVES: We aim to assess the clinical feasibility of a recently optimized selective inversion recovery (SIR) qMT and to test the hypothesis that SIR-qMT-derived metrics are informative of radiological and clinical disease-related changes in MS. METHODS: A total of 18 MS patients and 9 age- and sex-matched healthy controls (HCs) underwent a 3.0 Tesla (3 T) brain MRI, including clinical scans and an optimized SIR-qMT protocol. Four subjects were re-scanned at a 2-week interval to determine inter-scan variability. RESULTS: SIR-qMT measures differed between lesional and non-lesional tissue (p < 0.0001) and between normal-appearing white matter (NAWM) of patients with more advanced disability and normal white matter (WM) of HCs (p < 0.05). SIR-qMT measures were associated with lesion volumes, disease duration, and disability scores (p ⩽ 0.002). CONCLUSION: SIR-qMT at 3 T is clinically feasible and predicts both radiological and clinical disease severity in MS.

Description of a novel telemedicine-enabled comprehensive system of care: drip and ship plus drip and keep within a system of stroke care delivery.

United States (US) and worldwide telestroke programs frequently focus only on emergency room hyper-acute stroke management. This article describes a comprehensive, telemedicine-enabled, stroke care delivery system that combines "drip and ship" and "drip and keep" models with a comprehensive stroke center primary hub at Ochsner Medical Center in New Orleans, advanced stroke-capable regional hubs, and geographically-aligned, "stroke-ready" spokes. The primary hub provides vascular neurology expertise via telemedicine and monitors care for patients remaining at regional hubs and spokes using a multidisciplinary team approach. By 2014, primary hub telestroke consults grew to ≈1000/year with 16 min average door to consult initiation and 20 min to completion, and 29% of ischemic stroke patients received recombinant tissue-type plasminogen activator (rtPA), increasing 275%. Most patients remained in hospitals close to home, but neurointensive care and interventional procedures were common reasons for primary hub transfer. Given the time sensitivity and expert consultation needed for complex acute stroke care delivery paradigms, telestroke programs are effective for fulfilling unmet care needs. Combining drip and ship and drip and keep management allows more patients to stay "local," limiting primary hub transfer unless more advanced services are required. Post admission telestroke management at spokes increases personnel efficiency and can positively impact stroke outcomes.

Clinical trials: the art of enrollment.

OBJECTIVES: Enrollment barriers and multidisciplinary approaches to increase cancer trials participation are presented. Recruitment barriers, research in Maryland, and a Best Practice for cancer trials are discussed. DATA SOURCES: Journal and research articles, web sites. CONCLUSION: Clinical trials have produced prevention and care advances for cancer and other diseases. Trial enrollment is lower for minorities and underserved communities. A comprehensive program for addressing enrollment barriers should incorporate research on barriers, multidisciplinary teams, and education and trial infrastructure in community settings. IMPLICATIONS FOR NURSING PRACTICE: Health disparities training, including culturally appropriate enrollment approaches for education and retention of underserved communities, should incorporate community stakeholders and nurse/physician researchers.

Breast cancer epidemiology in blacks and whites: disparities in incidence, mortality, survival rates and histology.

BACKGROUND: This study presents black-white breast cancer statistics, tumor histology and receptor status, and treatment patterns for all ages and by age groups (< 40, 40-49, and > or = 50). METHODS: The study used data from the National Cancer Institute (NCI) Surveillance, Epidemiology and End Results (SEER) program for the time period 1995-2004. Age-adjusted incidence, mortality, relative survival rates, tumor grade, histology and receptor status, and treatment patterns for invasive breast cancer were calculated for nine SEER cancer registries for 1995-2004. RESULTS: Invasive breast cancer age-adjusted incidence for black women age < 40 was significantly higher than those for white women (rate ratio = 1.16, 95% confidence interval: 1.10-1.23). Age-adjusted mortality rate for black women age < 40 was twice that for white women. Compared to white women, black women were significantly more likely to be diagnosed with regional or distant disease, have lower relative five-year survival rate and have higher likelihood of being diagnosed with tumors with poorer prognosis. Black women were less likely to receive breast cancer surgery as part of the treatment plan. CONCLUSIONS: Race/ethnic disparities in invasive breast cancer epidemiology, prognostic indicators and treatment patterns exist between black and white women. The study findings support the need for innovative research, especially on the multifaceted determinants of the differential epidemiology of breast cancer. Equally important, there is a need for evidence-guided equal delivery of quality care to eliminate breast cancer disparities among black women.

Recruitment and participation in clinical trials: socio-demographic, rural/urban, and health care access predictors.

BACKGROUND: Recruitment and participation in clinical trials by minorities, particularly African Americans and rural underserved populations, are low. This report examines predictors of clinical trial recruitment and participation for adult Marylanders. METHODS: A cross-sectional design was used to survey 5154 adults (18 years and older) residing in 13 of the 24 jurisdictions in Maryland, including urban Baltimore City, and the rural regions of Western Maryland and the Eastern Shore. The survey, conducted between December 2001 and March 2003, used Computer-Assisted Telephone Interviewing and random-digit dialing procedures. Primary dependent variables included "ever asked to participate" (i.e., recruited) and "participated" in clinical trials. RESULTS: 11.1% of the respondents had been recruited to clinical trials. In addition, 59.4% of the respondents recruited to clinical trials actually participated in a clinical trial. Among respondents recruited to clinical trials, black and middle income respondents were significantly less likely to actually participate in clinical trials; whereas, respondents who received information about clinical trials from their health care provider, who were knowledgeable about clinical trials, and those who had the time commitment were significantly more likely to participate in clinical trials. CONCLUSIONS: These results suggest serious gaps in efforts to recruit racial/ethnic minorities and residents of rural regions into clinical trials. The findings provide the basis for the development and implementation of community-based educational programs for both the general public and health care professionals, and to enhance availability of community-based clinical trials, especially in the rural areas of the state.

Esophageal cancer epidemiology in blacks and whites: racial and gender disparities in incidence, mortality, survival rates and histology.

BACKGROUND: Esophageal cancer rate disparities are pronounced for blacks and whites. This study presents black-white esophageal cancer incidence, mortality, relative survival rates, histology and trends for two five-year time periods--1991-1995 and 1996-2000--and for the time period 1991-2000. METHODS: The study used data from the National Cancer Institute's population-based Surveillance Epidemiology End Results (SEER) program with submission dates 1991-2000. Age-adjusted incidence, mortality, relative survival rates and histology for esophageal carcinoma were calculated for nine SEER cancer registries for 1991-2000. Rates were analyzed by race and gender for changes over specified time periods. RESULTS: Esophageal cancer age-adjusted incidence of blacks was about twice that of whites (8.63 vs. 4.39/100,000, p < 0.05). Age-adjusted mortality for blacks, although showing a declining trend, was nearly twice that of whites (7.79 vs. 3.96, p < 0.05). Although survival was poor for all groups, it was significantly poorer in blacks than in whites. Squamous cell carcinoma was more commonly diagnosed in blacks and white females, whereas adenocarcinoma was more common among white males (p < 0.001). CONCLUSIONS: Racial disparities in esophageal cancer incidence, mortality, survival and histology exist. Survival rates from this disease have not significantly improved over the decade. These data support the need for advances in prevention, early detection biomarker research and research on new, more effective treatment modalities for this disease.

Health disparities research--a model for conducting research on cancer disparities: characterization and reduction.

The existence of disparities in health has gained national attention. While racial disparities in health have been documented for decades, "health disparities research" has not been described or defined. Health disparities may occur in categories such as racial/ethnic, age, and in geographic categories such as rural/urban, as well as in socioeconomic status. This paper, using the documented racial disparities in cancer for blacks and whites, presents a framework and model for documenting disparities, designing and conducting health disparities research, and applying the results of this research to reduce or eliminate disproportionate rates. The model consists of four components: 1. Surveillance 2. Explanatory Research 3. Intervention Research: Development and Evaluation 4. Translation/Application of Research Results. This model is presented to assist researchers in systematically addressing health disparities through well designed, well conducted, and well applied research. The Special Populations Cancer Research Networks are an 18 member national network of grants that focus on cancer disparities research, community awareness and participatory research, increased accrual of minorities to clinical trials, and training of minority investigators. The primary objective of the University of Maryland School of Medicine's grant is to reduce cancer rate disparities in underserved communities.