Discussion of federal policies affecting broadband expansion and telehealth in Appalachia.

BACKGROUND: There have been 188 rural hospital closures in the United States since 2010 with approximately 20% of these in Appalachia. Telehealth has become a way that nurses can reach rural patients who might not otherwise receive health care. OBJECTIVES: The purpose of this paper is to (1) outline the federal policies enacted during COVID-19 for broadband expansion; and (2) suggest how advanced practice nursing care might be affected by broadband expansion and telehealth in the region. METHODS: A search of PubMed was conducted in January 2023, using the search words, "policy", "telehealth", "broadband", and "Appalachia". FINDINGS: New laws appropriated funds to expand broadband infrastructure that made it possible for telehealth to be used by nurses to deliver health care to rural patients. CONCLUSION: This discussion paper found that broadband legislation was instrumental in expanding telecommunications and telehealth by NPs. There is a great need for broadband to continue to expand and for trained nurses to provide care via telehealth.

An Age Group Comparison of Concurrent Hospice Care: A Cost-Effectiveness Analysis.

This study aimed to examine the cost-effectiveness of concurrent hospice care compared with standard care among pediatric patients of different age groups. Using a national Medicaid database of 18 152 pediatric patients enrolled in hospice care between 2011 and 2013, this study calculated and analyzed incremental cost-effectiveness ratios (ICERs) for concurrent care versus standard hospice care for children of 4 age categories: <1 year, 1 to 5 years, 6 to 14 years, and 15 to 20 years. The results indicated that the total Medicaid cost of hospice care was $3229 per patient per month (PPPM; SD, $8709) for those younger than 1 year, $4793 PPPM (SD, $8178) for those aged 1 to 5 years, $5411 PPPM (SD, $7456) for those aged 6 to 14 years, and $5625 PPPM (SD, $11459) for those aged 15 to 20 years. Incremental cost-effectiveness ratio values across all age groups showed that children enrolled in concurrent care had fewer live discharges but at a higher Medicaid cost of care as compared with those enrolled in standard hospice care. Concurrent hospice care was the most cost-effective in the age groups of <1 year and 1 to 5 years, with ICERs equal to $45 (95% confidence interval [CI], $23-$66) and $49 (95% CI, $8-$76), respectively. For the other older age groups, benefits of enrollment in concurrent care came at a much higher cost: in the age group of 6 to 14 years, ICER was equal to $217 (95% CI, $129-$217), and in the age group of 15 to 20 years, it was $107 (95% CI, $82-$183). Concurrent hospice is an effective way to reduce live discharges but has a higher total Medicaid cost than standard hospice care.

Artificial Intelligence and the National Violent Death Reporting System: A Rapid Review.

As the awareness on violent deaths from guns, drugs, and suicides emerges as a public health crisis in the United States, attempts to prevent injury and mortality through nursing research are critical. The National Violent Death Reporting System provides public health surveillance of US violent deaths; however, understanding the National Violent Death Reporting System's research utility is limited. The purpose of our rapid review of the 2019-2023 literature was to understand to what extent artificial intelligence methods are being used with the National Violent Death Reporting System. We identified 16 National Violent Death Reporting System artificial intelligence studies, with more than half published after 2020. The text-rich content of National Violent Death Reporting System enabled researchers to center their artificial intelligence approaches mostly on natural language processing (50%) or natural language processing and machine learning (37%). Significant heterogeneity in approaches, techniques, and processes was noted across the studies, with critical methods information often lacking. The aims and focus of National Violent Death Reporting System studies were homogeneous and mostly examined suicide among nurses and older adults. Our findings suggested that artificial intelligence is a promising approach to the National Violent Death Reporting System data with significant untapped potential in its use. Artificial intelligence may prove to be a powerful tool enabling nursing scholars and practitioners to reduce the number of preventable, violent deaths.

Geographic Information Systems Utilization in Pediatric End-of-Life Research: A Scoping Review.

Currently, little is known about how geographic information systems (GIS) has been utilized to study end-of-life care in pediatric populations. The purpose of this review was to collect and examine the existing evidence on how GIS methods have been used in pediatric end-of-life research over the last 20 years. Scoping review method was used to summarize existing evidence and inform research methods and clinical practice was used. The Preferred Items for Systematic Reviews and Meta-Analyses for Scoping Reviews (PRISMA) was utilized. The search resulted in a final set of 17 articles. Most studies created maps for data visualization and used ArcGIS as the primary software for analysis. The scoping review revealed that GIS methodology has been limited to mapping, but that there is a significant opportunity to expand the use of this methodology for pediatric end-of-life care research.

A Comparison of Hospice Care Utilization Between Rural and Urban Children in Appalachia: A Geographic Information Systems Analysis.

Long driving times from hospice providers to patients lead to poor quality of care, which may exacerbate in rural and highly isolated areas of Appalachia. This study aimed to investigate geographic patterns of pediatric hospice care across Appalachia. Using person-level Medicaid claims of 1,788 pediatric hospice enrollees who resided in the Appalachian Region between 2011 and 2013. A database of boundaries of Appalachian counties, postal addresses of hospices, and population-weighted county centroids of residences of hospice enrollees driving times from the nearest hospices were calculated. A choropleth map was created to visualize rural/urban differences in receiving hospice care. The average driving time from hospice to child residence was 28 minutes (SD = 26). The longest driving time was in Eastern Kentucky-126 minutes (SD = 32), and the shortest was in South Carolina-11 min (SD = 9.1). The most significant differences in driving times between rural and urban counties were found in Virginia 28 (SD = 7.5) and 5 minutes (SD = 0), respectively, Tennessee-43 (SD = 28) and 8 minutes (SD = 7), respectively; and West Virginia-49 (SD = 30) and 12 minutes (SD = 4), respectively. Many pediatric hospice patients reside in isolated counties with long driving times from the nearest hospices. State-level policies should be developed to reduce driving times from hospice providers.

Community-Academic Partnership: Intervention to Prepare Community Members for the End-of-Life Journey.

Despite research findings that rural Appalachians prefer to die at home, few people access palliative and hospice care services, and many report limited knowledge about palliative/end-of-life care resources. A community-academic partnership was formed to address this need. Train-the-trainer workshop and materials were co-developed. This study tested the feasibility and cultural acceptability of the training intervention to increase community members' knowledge about palliative/end-of-life care resources for East Tennessee Appalachian people. Community-based participatory research design and culture care theory guided the project, intervention, and research. After engaging in end-of-life training, participants completed a retrospective pretest-posttest survey. Paired samples t tests were used to compare knowledge before and after training. Means and standard deviations were used to report training material usefulness and cultural acceptability. Short-answer qualitative data were analyzed using content analysis. Sixty-six adults completed the survey. Ratings for training materials and cultural/theological acceptability were high. Participant knowledge rankings showed significant improvement after training at the P <.001 level. Qualitative feedback was positive. The training intervention was feasible, culturally acceptable, and effective for increasing East Tennessee Appalachian persons' palliative/end-of-life care knowledge. Community member expertise/collaboration integrated into every stage of the project is the bedrock of cultural acceptability and feasibility.

Factors Associated With Transitions to Adult Care Among Adolescents and Young Adults With Medical Complexity.

Introduction: Thanks to advances in healthcare and technology, adolescents with medical complexity (AMC) and life-threatening conditions are living longer lives and may be expected to transition to adult health care. Yet, current systems and policies of transition care may not reflect their needs, those of their family, or the impact of social determinants of health. The goal of this study was to describe the relationship between social determinants of health and high-quality transition care. Methods: Retrospective cohort study of the 2019-2020 National Survey of Children's Health. The main outcome variable was any support for transition to adult health care. Independent variables were based on a social determinants of health framework. Weighted logistic regression was used to evaluate the association between social determinants and any support for transition to adult health care. Results: Final weighted sample included 444,915 AMC. AMC were distributed across income levels, most commonly lived in the South, and in supportive, resilient communities. More than 50% experienced adverse childhood events and less than 50% had adequate insurance. Less than one third received any transition support from providers; those who did reported time alone with the provider or active management. Social determinants related to missed days of school, community support/family context, and poverty were associated with both receipt and absence of transition care. Conclusion: AMC and their families navigate complex environments and associated stressors. Social determinants of health, particularly economic, community/social, and healthcare exert significant and nuanced influence. Such impacts should be incorporated into transition care.

East Tennessee older women's perceptions of Medicare, Medicaid, and related health policies.

Older women face unique challenges regarding health disparities. This study aims to provide an understanding of older women's perceptions and situated experiences regarding the gendered health disparities they face, which are characterized by the policies related to older women's health and the geopolitical and social norms in which they live. The purpose of this project is to provide policy and decision-makers with insights and a better understanding of older women's experiences and perceptions of the policies that impact their health and healthcare. The data for this study was collected through semi-structured interviews with twelve women in Appalachian East Tennessee. Areas examined include: the women's perceived impact of federal, state, and local policies on the participants, particularly of Medicare and Medicaid; the role of social norming and health narratives, particularly stigmatization, discrimination, and health marginalization of older women; and the role of place and place-based drivers on these areas. This study sought to determine if these factors impact the participants' awareness or lack of awareness of policies related to older women. Findings showed that older women in East Tennessee lacked knowledge of health policies, that older women perceive systemic and individual discrimination in policymaking, clinical care, and health research, and that they perceive that place-based drivers have impacted their access to healthcare. These findings have implications for policymaking and intervention design in co-production with older women in order to mitigate older women's health disparities.

Understanding Adult Hospices Caring for Children in California, 2018-2021.

In areas where there are absences of pediatric hospice care, adult hospices are often asked to provide hospice care for children. Little is known about these adult hospices. The purpose of our study was to describe the characteristics of adult hospices in California that provided care to children from 2018 to 2021. Using public data from the California Home Health Agencies and Hospice Annual Utilization Report, we conducted a longitudinal, retrospective descriptive study to examine the effects of hospice characteristics on adult hospices which provide care to children. Market, mission, operational, and financial characteristics were measured via the California utilization data using descriptive statistics. Service area was measured via latitude and longitude public data. Hospice location maps were generated for year 2018 and year 2021. The 148 hospices in the study had distinct organizational profiles, mainly small, with broad service coverage areas, in rural and urban communities with predominantly nurses visiting children. There was a significant decline (32%) in availability of adult hospices caring for children between 2018 and 2021, particularly in northern California. Hospice economics, lack of familiarity with Medicaid, and staff comfortability with caring for children in hospice, were not driving this decline. Our study provides critical insight into the characteristics of adult hospices in California providing care for children and has important policy implications.

State of the Service: Pediatric Palliative and Hospice Community-Based Service Coverage in the United States.

Background: The pediatric literature describes reliance on community-based organizations for home-based palliative and hospice care for children. Objective: To quantify and describe the inclusion of children in services, staffing, and care scope offered by community-based hospice organizations in the United States. Design and Subjects: This study utilized an online survey distributed to organizational members of the National Hospice and Palliative Care Organization (NHPCO) in the United States. Results: A total of 481 hospice organizations from 50 states, Washington DC, and Puerto Rico responded. Twenty percent do not provide services for children. Nonmetro geographies are less likely to provide services for children. Pediatric services provided include home-based pediatric hospice (57%), home-based palliative care (31%), inpatient pediatric hospice (23%), and inpatient pediatric palliative care (14%). Hospice annual pediatric census is an average of 16.5 children, while palliative care annual census is an average of 36. Less than half (48%) of responding agencies have a team that is dedicated to only pediatric care. Medicaid and the Children's Health Insurance Program are the most common forms of reimbursement, with 13% depicting "no reimbursement" for provision of care for children and many relying on philanthropy coverage. Lack of trained personnel, discomfort, and competing priorities were depicted as the most common barriers. Conclusions: Children remain underrepresented in the extension of care offered through community-based hospice organizations in the United States particularly in nonmetro settings. Further research into strong training, staffing, and reimbursement models is warranted.

Application of Instrumental Variable Analysis in Pediatric End-of-Life Research: A Case Study.

Instrumental variable analysis (IVA) has been widely used in many fields, including health care, to determine the comparative effectiveness of a treatment, intervention, or policy. However, its application in pediatric end-of-life care research has been limited. This article provides a brief overview of IVA and its assumptions. It illustrates the use of IVA by investigating the comparative effectiveness of concurrent versus standard hospice care for reducing 1-day hospice enrollments. Concurrent hospice care is a relatively recent type of care enabled by the Affordable Care Act in 2010 for children enrolled in the Medicaid program and allows for receiving life-prolonging medical treatment concurrently with hospice care. The IVA was conducted using observational data from 18,152 pediatric patients enrolled in hospice between 2011 and 2013. The results indicated that enrollment in concurrent hospice care reduced 1-day enrollment by 19.3%.

From Hospital to Home: Referrals to Pediatric Hospice and Home-based Palliative Care.

CONTEXT: Hospital-based pediatric palliative care (PPC) may help optimize referrals to community-based hospice and home-based palliative care (HBPC) for children with serious illness, yet little is known about their referral practices. OBJECTIVES: To describe community-based program referrals from a PPC team, identifying factors associated with referral type, and potential misalignment between patient needs and referral received. METHODS: Chart abstraction of patients seen in 2017 by the PPC team of a large, urban children's hospital, followed for at least 6 months or until death, including clinical and demographic characteristics, and referrals to hospice and HBPC. RESULTS: Of the 302 study-eligible patients, 25% died during the hospitalization of the first 2017 visit.  Of the remaining 228 patients, 42 (18.4%) were referred to HBPC and 58 (25.4%) to hospice. Excluding patients referred to hospice care, only one-third with demographic eligibility were referred to HBPC; those seen in the ICU were least likely to be referred.  Over half of the 58 patients referred to hospice died within the study period (n = 34, 58.6%); descendants were more likely to have cancer (P = 0.002) and less likely to have a neurologic (P = 0.021) diagnosis. CONCLUSION: Despite demographic eligibility, a minority of patients seen by a hospital-based PPC team received referrals for hospice or HBPC.  Children discharged from an ICU and those with neurologic conditions may be at higher risk of missing referrals best aligned with their needs.  Future research should identify and address causes of referral misalignment. Advocacy for programs adaptable to patients' changing needs may also be needed.

Conceptualizing the Value of Pediatric Concurrent Hospice Care.

Given that pediatric concurrent hospice care has been available for more than a decade, it is appropriate to seek an understanding of the value of this care delivery approach. Value is the cost associated with achieving beneficial health outcomes. In pursuit of this goal, the current literature on pediatric concurrent hospice care was synthesized and used to develop a model to explain its value. Because of its relevance, the Value Assessment Framework was used to conceptualize the value of pediatric concurrent hospice care. This framework gauges the value of a health care service through 2 components: long-term effect and short-term affordability. The framework considers comparative clinical effectiveness, cost-effectiveness, other benefits or disadvantages, contextual considerations, and potential budget impact. Evidence from the literature suggested that the value of concurrent care depended on clinical outcomes evaluated, costs examined, medical services used, care coordinated, context considered, and budget impacted. The literature demonstrated that pediatric concurrent hospice care does offer significant value for children and their families. The conceptual model highlighted the need for a comprehensive approach to assessing value. The model is a useful framework for future research examining the value of concurrent hospice care.

Perspectives on Access to Novel Therapeutics Through Clinical Trials Among Adolescents and Young Adults with Advanced Cancer: Implications for Patient-Centered Clinical Trials.

Purpose: Adolescents and young adults (AYA) with advanced cancer have unequal access to and enrollment in clinical trials. Many AYA use online platforms to share their treatment experiences. The purpose of this analysis was to explore how AYA discuss clinical trials and their access to novel therapeutics through their blogs. Methods: We studied illness blogs from 22 AYA (ages 16-38 years old) with advanced cancer who specifically discussed experiences enrolling in a clinical trial. Nearly 500 excerpts were abstracted from their blogs, and we used qualitative descriptive methodology and thematic analysis to explore their longitudinal perspectives. Results: We describe three themes: (1) "Blinded", which represents the uncertainty in treatment pathway and underrepresentation of AYA in clinical trials, (2) "Totally healthy except for the damn cancer", which represents the numerous challenges associated with meeting eligibility criteria and lack of available clinical trials, and (3) "Go ahead and send me the bill!", which represents the precarious financial challenges associated with participating with clinical trials (both direct costs and indirect costs associated with travel, time away from work) as well as the costs of novel therapeutics. Conclusions: By studying AYA online narratives, we can outline several gaps in accessing clinical trials and generate future research priorities. AYA with advanced cancer are known to have aggressive trajectories, and there are opportunities to integrate patient-reported outcomes and supportive care frameworks embedded within clinical trial study design.

Patient Goals for Living with Rheumatoid Arthritis: A Qualitative Study.

Rheumatoid arthritis is highly individualized in terms of its flare ups and periods of remission. Each patient's unique experience requires a high level of personalization in terms of treatment making it necessary to understand what their goals for living are. This study explores patient perceptions on how the burden of RA shapes patients' goals for living and their preferences for symptom and side-effect management within the United States. Fifteen patients diagnosed with RA with varying lengths of diagnosis were interviewed. A thematic analysis was conducted to construct a conceptual framework. Emerging themes identified disease burdens as: (1) inability to perform essential needs, (2) negative feelings about disease, and (3) its influence on relationships. These burdens shaped desired goals for living which guided the symptom and side-effect priorities the patient wanted managed. Practitioners should consider patient goals and preferences in conjunction with disease progression when engaging in treatment decisions.

A National Study of Healthcare Service Patterns at the End of Life Among Children With Cardiac Disease.

BACKGROUND: Heart diseases are one of the leading causes of health-related deaths among children. Concurrent hospice care offers hospice and nonhospice healthcare services simultaneously, but the use of these services by children with cardiac disease has been rarely investigated. OBJECTIVE: The aims of this study were to identify patterns of nonhospice healthcare services used in concurrent hospice care and describe the profile of children with cardiac disease in these clusters. METHODS: This study was a retrospective cohort analysis of Medicaid claims data collected between 2011 and 2013 from 1635 pediatric cardiac patients. The analysis included descriptive statistics and latent class analysis. RESULTS: Children in the sample used more than 314 000 nonhospice healthcare services. The most common services were inpatient hospital procedures, durable medical equipment, and home health. Latent class analysis clustered children into "moderate intensity" (60.0%) and "high intensity" classes (40.0%). Children in "moderate intensity" had dysrhythmias (31.7%), comorbidities (85.0%), mental/behavioral health conditions (55%), and technology dependence (71%). They commonly resided in urban areas (60.1%) in the Northeast (44.4%). The health profile of children in the "high intensity" class included dysrhythmias (39.4%), comorbidities (97.6%), mental/behavioral health conditions (71.5%), and technology dependence (85.8%). These children resided in rural communities (50.7%) in the South (53.1%). CONCLUSIONS: Two patterns of use of nonhospice healthcare services were identified in this study. This information may be used by nurses and other healthcare professionals working in concurrent hospice care to assess the healthcare service needs of children with cardiac conditions at the end of life.

Incremental cost analysis of pediatric hospice care in rural and urban Appalachia.

PURPOSE: Considering growing disparities in health outcomes between rural and urban areas of Appalachia, this study compared the incremental Medicaid costs of pediatric concurrent care (implemented by the Patient Protection and Affordable Care Act) versus standard hospice care. METHODS: Data on 1,788 pediatric hospice patients, from the Appalachian region, collected between 2011 and 2013, were obtained from the Centers for Medicare and Medicaid Services. Incremental per-patient-per-month (PPM) costs of enrollment in concurrent versus standard hospice care were analyzed using multilevel generalized linear models. Increments for analysis were hospice length of stay (LOS). RESULTS: For rural children enrolled in concurrent hospice care, the mean Medicaid cost of hospice care was $3,954 PPPM (95% CI: $3,223-$4,684) versus $1,933 PPPM (95% CI: $1,357-$2,509) for urban. For rural children enrolled in standard hospice care, the mean Medicaid cost was $2,889 PPPM (95% CI: $2,639-$3,139) versus $1,122 PPPM (95% CI: $980-$1,264) for urban. There were no statistically significant differences in Medicaid costs for LOS of 1 day. However, for LOS between 2 and 14 days, concurrent enrollment decreased total costs for urban children (IC = $-236.9 PPPM, 95% CI: $-421-$-53). For LOS of 15 days or more, concurrent care had higher costs compared to standard care, for both rural (IC = $1,399 PPPM, 95% CI: $92-$2,706) and urban children (IC = $1,867 PPPM, 95% CI: $1,172-$2,363). CONCLUSIONS: The findings revealed that Medicaid costs for concurrent hospice care were highest among children in rural Appalachia. Future research on factors of high costs of rural care is needed.

Mobile Health Apps for Patient-Centered Care: Review of United States Rheumatoid Arthritis Apps for Engagement and Activation.

BACKGROUND: Rheumatoid arthritis (RA) is a highly dynamic and individualized disease in terms of its patterns of symptomatic flare-ups and periods of remission. Patient-centered care (PCC) aligns patients' lifestyle goals with their preferences for managing symptoms and side effects through the selection of therapies appropriate for disease management. Mobile health (mHealth) apps have the potential to engage and activate patients in PCC. mHealth apps can provide features that increase disease knowledge, collect patient-generated health indicators and behavioral metrics, and highlight goals for disease management. However, little evidence-based guidance exists as to which apps contain functionality essential for supporting the delivery of PCC. OBJECTIVE: The objective of this study was to evaluate the patient-centeredness of United States-based rheumatoid arthritis mobile apps in terms of patient engagement and activation. METHODS: A search of mobile apps on 2 major United States app stores (Apple App Store and Google Play) was conducted from June 2020 to July 2021 to identify apps designed for use by patients with RA by adapting the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses) guidelines for mobile health app screening based on the literature. Reviewers conducted a content analysis of mobile app features to evaluate their functionality for patient engagement and activation. Engagement and activation were assessed using the Mobile Application Rating Scale (MARS) and social cognitive theory, respectively. Apps were ranked by their ability to facilitate PCC care along 2 dimensions: engagement and activation. RESULTS: A total of 202 mobile apps were initially identified, and 20 remained after screening. Two apps emerged with the greatest ability to facilitate PCC. Both apps were scored as having acceptable or good patient engagement according to the MARS. These 2 apps also had high patient activation according to social cognitive theory, with many features within those apps representing theoretical constructs such as knowledge, perceived self-efficacy, and expectations about outcomes that support behavioral management of RA. CONCLUSIONS: We found very few mobile apps available within the United States that have functionality that both engages and activates the patient to facilitate PCC. As the prevalence of mobile apps expands, the design of mobile apps needs to integrate patients to ensure that their functionality promotes engagement and activation. More research is needed to understand how mobile app use impacts patient engagement and activation, and ultimately, treatment decisions and disease trajectory.