RESUMEN
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.
Asunto(s)
Análisis Costo-Beneficio , Cuidados Paliativos al Final de la Vida , Medicaid , Humanos , Adolescente , Análisis Costo-Beneficio/métodos , Análisis Costo-Beneficio/estadística & datos numéricos , Niño , Femenino , Masculino , Estados Unidos , Preescolar , Lactante , Cuidados Paliativos al Final de la Vida/economía , Cuidados Paliativos al Final de la Vida/estadística & datos numéricos , Cuidados Paliativos al Final de la Vida/métodos , Medicaid/estadística & datos numéricos , Medicaid/economía , Adulto Joven , Análisis de Costo-EfectividadRESUMEN
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.
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Sistemas de Información Geográfica , Cuidado Terminal , Niño , Humanos , Muerte , Proyectos de InvestigaciónRESUMEN
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.
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Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Estados Unidos , Humanos , Niño , Sistemas de Información Geográfica , Población Urbana , Accesibilidad a los Servicios de Salud , Región de los ApalachesRESUMEN
BACKGROUND: Telemedicine has the potential to reduce medical costs among health systems. However, there is a limited understanding of the use of telemedicine and its association with direct medical costs. OBJECTIVES: Using nationally representative data, we investigated telemedicine use and the associated direct medical costs among respondents overall and stratified by medical provider type and patient insurance status. RESEARCH DESIGN, SUBJECTS, AND MEASURES: We used the 2020 Medical Expenditure Panel Survey full-year consolidated file, and outpatient department (OP) and office-based (OB) medical provider event files. Outcomes included total and out-of-pocket costs per visit for OP and OB. The primary independent variable was a binary variable indicating visits made through any telemedicine modality. We used multivariable generalized linear models and 2-part models, adjusting for types of providers and care, patient characteristics, and survey design. RESULTS: Among total OP (n = 2938) and OB (n = 20,204) visits, 47.6% and 24.7% of visits, respectively were made through telemedicine. For OP, telemedicine visits were associated with lower total costs (average marginal effect: -$228; 95% confidence interval -$362, -$95) and out-of-pocket costs for all visits and for visits to specialists and to nurse practitioners or physicians assistants. For OB, telemedicine visits were associated with lower total costs, but not with lower out-of-pocket costs, for visits to primary care physicians or nurse practitioners or physician assistants, and for visits by Medicare patients. CONCLUSION: Telemedicine was associated with lower direct medical costs. Its potential for cost curbing should be proactively identified and integrated into clinical practice and health policy design.
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Medicare , Telemedicina , Anciano , Humanos , Estados Unidos , Costos y Análisis de Costo , Gastos en Salud , Visita a Consultorio MédicoRESUMEN
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%.
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Cuidados Paliativos al Final de la Vida , Cuidado Terminal , Estados Unidos , Niño , Humanos , Patient Protection and Affordable Care Act , Cuidados Paliativos , MuerteRESUMEN
BACKGROUND: Non-pharmacologic treatments such as physical therapy (PT) are advocated for musculoskeletal pain. Early access to PT through self-referral has been shown to decrease costs and improve outcomes. Although self-referral is permitted in most U.S. states and supported by some health insurance plans, patients' utilization of self-referral remains low. OBJECTIVE: To identify factors, beyond legislative policies and health insurance, associated with patients' decisions to access physical therapy through self-referral or provider-referral. METHODS: We recruited 26 females and 6 males whose employer-sponsored insurance benefits included financial incentives for self-referral to physical therapy. Between August 2017 and March 2018, participants completed semi-structured interviews about their beliefs about physical therapy and reasons for choosing self-referral (15 participants) or provider referral (17 participants) for accessing physical therapy. Grounded theory approach was employed to identify themes in the data. RESULTS: Patients selecting self-referral reported major thematic differences compared to the provider-referral patients including knowledge of the direct access program, attitudes and beliefs about physical therapy and pharmacologic treatment, and prior experiences with physical therapy. Self-referral patients were aware that their plan benefits included reduced cost for self-referral and felt confident in selecting that pathway. They also had negative beliefs about the effectiveness of pharmacological treatments and surgery, and previously had positive direct or indirect experiences with physical therapy. CONCLUSION: Knowledge of the ability to self-refer, attitudes and beliefs about treatment, and prior experience with physical therapy were associated with self-referral to physical therapy. Interventions aimed at improving knowledge and changing attitudes toward self-referral to physical therapy to increase utilization appear warranted.
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Conocimientos, Actitudes y Práctica en Salud , Dolor Musculoesquelético , Modalidades de Fisioterapia , Femenino , Humanos , Masculino , Investigación Cualitativa , Derivación y Consulta , Accesibilidad a los Servicios de SaludRESUMEN
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.
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Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Anciano , Humanos , Niño , Estados Unidos , Patient Protection and Affordable Care Act , Medicare , Región de los Apalaches , Costos y Análisis de CostoRESUMEN
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.
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Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Humanos , Niño , Atención a la SaludRESUMEN
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.
Asunto(s)
Artritis Reumatoide , Humanos , Investigación CualitativaRESUMEN
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.
Asunto(s)
Artritis Reumatoide , Aplicaciones Móviles , Telemedicina , Humanos , Estados Unidos , Atención Dirigida al Paciente , Artritis Reumatoide/terapiaRESUMEN
BACKGROUND: Implementation of concurrent hospice care led to a new hybrid payment model that combines hospice payments with payments for non-hospice medical care. Little is known about the cost implications of this new hybrid payment model. OBJECTIVE: The purpose was to identify costs and compare concurrent care and standard hospice care costs by estimating the average incremental Medicaid cost of care over time. METHODS: Using national Medicaid data of 18 147 hospice children and a multilevel generalized linear model, we calculated the incremental costs of receiving concurrent vs standard hospice care. We used the total cost of care over the last year of life. Increments for the analysis were hospice length of stay, stratified to 1 day, 2-14 days, and 15 + days. RESULTS: Overall, compared to standard hospice care, enrollment in concurrent hospice care was significantly associated with an increase in outpatient care and prescription drug costs. For a stay of 1 day, concurrent hospice care decreased inpatient costs and increased costs of prescription drugs. For stays between 2 and 14 days, concurrent hospice decreased total costs and inpatient costs, but increased prescription drug costs. With a hospice stay of 15 + days, concurrent hospice had significantly higher costs across all measures, including total costs, inpatient costs, outpatient costs, and prescription drug costs. CONCLUSION: This study provides critical insight into incremental costs of receiving concurrent vs standard hospice care. More research is needed to understand how concurrent hospice lengthy hospice stays are associated with increases of costs.
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Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Medicamentos bajo Prescripción , Estados Unidos , Niño , Humanos , Medicaid , Tiempo de InternaciónRESUMEN
OBJECTIVE: The goal of this study was to compare rural and urban pediatric hospice patients in Appalachia. METHODS: Using a retrospective, nonexperimental design, we sought to compare characteristics of Appalachian rural and urban children younger than 21 years enrolled in the Medicaid hospice benefit. Descriptive statistics were calculated on the demographic, hospice, and clinical characteristics of children from Appalachia. Comparisons were calculated using Pearson χ2 for proportions and the Student t test for means. RESULTS: Less than half of the 1788 Appalachian children admitted to hospice care resided in rural areas (40%). Compared with children in urban areas of Appalachia, rural children were significantly younger (8 years vs 9.5 years) and more often had a complex chronic condition (56.0% vs 35.1%) and comorbidities (38.5% vs 17.0%) with technology dependence (32.6% vs 17.0%). Children in rural Appalachian were commonly from communities in the southern region of Appalachia (27.9% vs <10.0%), with median household incomes <$50,000/year (96.7% vs 22.4%). Significant differences were present in clinical care between rural and urban Appalachian children. Rural children had longer lengths of stay in hospice care (38 days vs 11 days) and were less likely to use the emergency department during hospice admission (19.0% vs 43.0%). These children more often visited their primary care provider (49.9% vs 31.3%) and sought care for symptoms from nonhospice providers (18.1% vs 10.0%) while admitted to hospice. CONCLUSIONS: Our results suggest that children admitted to hospice care in rural versus urban Appalachia have distinct characteristics. Rural children are admitted to hospice care with significant medical complexities and reside in areas of poverty. Hospice care for rural children suggests a continuity of care with longer hospice stays and fewer transitions to the emergency department; however, the potential for care fragmentation is present, with frequent visits to primary care and nonhospice providers for symptom management. Understanding the unique characteristics of children in Appalachia may be essential for advancing knowledge and care for these children at the end of life. Future research examining geographic variation in hospice care in Appalachia is warranted.
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Cuidados Paliativos al Final de la Vida , Región de los Apalaches/epidemiología , Niño , Servicio de Urgencia en Hospital , Hospitalización , Humanos , Estudios Retrospectivos , Estados UnidosRESUMEN
Constipation is a distressing and uncomfortable symptom children experience at end of life. There is a gap in knowledge about how different approaches to hospice care delivery might improve pediatric symptom management of constipation. The purpose of this study was to evaluate the effectiveness of pediatric concurrent hospice versus standard hospice care to manage constipation. Medicaid data (2011-2013) were analyzed. Children who were younger than 21 years enrolled in hospice care and had a hospice enrollment between January 1, 2011, and December 31, 2013, were included. Instrumental variable analysis was used to test the effectiveness of concurrent versus standard hospice care. Among the 18 152 children, approximately 14% of participants were diagnosed or treated for constipation from a nonhospice provider during hospice enrollment. A higher proportion of children received nonhospice care for constipation in concurrent hospice care, compared with standard hospice (19.5% vs 13.2%), although this was not significant (ß = .22, P < .05) after adjusting for covariates. The findings demonstrated that concurrent care was no more effective than standard hospice care in managing pediatric constipation. Hospice and nonhospice providers may be doing a sufficient job ordering bowel regimens before constipation becomes a serious problem for children at end of life.
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Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Niño , Estreñimiento/terapia , Humanos , Medicaid , Cuidados Paliativos , Estados UnidosRESUMEN
BACKGROUND: Families increasingly desire to bring their children home from the acute care setting at end of life. This transition includes home to rural or remote areas. Little is known about the end-of-life care for children who reside in rural areas. OBJECTIVE: The purpose of this study was to comprehensively review and summarize the evidence regarding end-of-life care for children living in rural areas, identify key findings and gaps in the literature, and make recommendations for future research. METHODS: A systematic review was conducted from 2011 to 2021 using MEDLINE and CINAHL databases. RESULTS: Nine studies met inclusion criteria. Key themes from the literature included: barriers, facilitators, and needs. Three articles identified barriers to end-of-life care for children in rural communities, which included access to end-of-life care and clinicians trained to provide pediatric care. Three studies identified and evaluated the facilitators of end-of-life care for rural children. The articles identified technology and additional training as facilitators. Four studies reported on the needs of rural children for end-of-life care with serious illness. CONCLUSIONS: We found major barriers and unmet needs in the delivery of rural pediatric end-of-life care. A few facilitators in delivery of this type of care were explored. Overall research in this area was sparse. Future studies should focus on understanding the complexities associated with delivery of pediatric end-of-life care in rural areas.
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Cuidados Paliativos al Final de la Vida , Cuidado Terminal , Niño , Humanos , Cuidados Paliativos , Población RuralRESUMEN
BACKGROUND: The 2010 Patient Protection and Affordable Care Act (ACA) mandated landmark hospice care legislation for children at end of life. Little is known about the impact of pediatric concurrent hospice care. OBJECTIVE: The purpose of this study was to examine the effect of pediatric concurrent vs standard hospice care on end-of-life care continuity among Medicaid beneficiaries. METHODS: Using national Medicaid data, we conducted a quasi-experimental designed study to estimate the effect of concurrent vs standard hospice care to improve end-of-life care continuity for children. Care continuity (i.e., hospice length of stay, hospice disenrollment, emergency room transition, and inpatient transition) was measured via claims data. Exposures were concurrent hospice vs standard hospice care. Using instrumental variable analysis, the effectiveness of exposures on care continuity was compared. RESULTS: Concurrent hospice care affected care continuity. It resulted in longer lengths of stays in hospice (ß = 2.76, P < .001) and reduced hospice live discharges (ß = -2.80, P < .05), compared to standard hospice care. Concurrent care was not effective at reducing emergency room (ß = 2.09, P < .001) or inpatient care (ß = .007, P < .05) transitions during hospice enrollment. CONCLUSION: Our study provides critical insight into the quality of care delivered for children at end of life. These findings have policy implications.
Asunto(s)
Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Niño , Continuidad de la Atención al Paciente , Muerte , Cuidados Paliativos al Final de la Vida/métodos , Humanos , Patient Protection and Affordable Care Act , Estados UnidosRESUMEN
Using a sample of 18,152 pediatric hospice patients, this study assessed the cost-effectiveness of concurrent care over standard hospice care. Analysis of incremental cost-effectiveness ratios with bootstrapping simulations showed that concurrent care was more effective but at a higher cost.
RESUMEN
BACKGROUND: Patient and Public Involvement (PPI) in research is increasingly being utilized to better connect patients and researchers. The Patient Engagement Studio (PES) supports PPI in research by working directly with researchers throughout various stages of their projects. Recently, two researchers presented to the PES for assistance with their project, Embryo+™. The purpose of Embryo+™ is to decrease miscarriage rates using RNA sequencing technology that screens for the most viable embryos. To date, no examples of PPI directly in the planning or implementation of bench research concerning in vitro fertilization and embryo transfer have been identified. MAIN BODY: Embryo+™ researchers met in-person with the PES two times (fall 2019; each meeting had 9 PES members in attendance) for initial feedback and protocol development. After these meetings, PES leadership and Embryo+™ researchers decided that the unique nature of the project merited a PPI evaluation. Subsequent evaluation of engagement efforts occurred by reviewing the PES reports for the Embryo+™ researchers, conducting two recorded web-based discussion meetings with the PES (summer 2020; meeting 1 n = 7; meeting 2 n = 6), and a brief survey (n = 13). The discussion meetings provided an opportunity for the PES members to define engagement themes through consensus via verbal agreement to the studio director's periodic summaries during the discussions. Combining survey results and PES themes allowed for a broad discussion for meaningful engagement. The Embryo+™ researchers established trust with the patients by changing some of their language in response to patient suggestions, allowing for unintended ethical conversations, and implementing the patient developed protocols. Overall, the patient experts thought this project was very meaningful and valuable, quantified by a mean loyalty score 89.43 (s.d. 10.29). CONCLUSION: Bench science researchers may need additional PPI training prior to engaging with patient groups. PPI in this project was successful in large part due to this training, where the director emphasized the importance of gaining trust with the patients. The researchers applied what they learned and several examples of how to develop trust with patients are discussed. If trust is established, PPI in an ethically charged, basic science research study can be both valuable and successful.
Patients are increasingly becoming involved in all stages of the research process. Patient and public involvement has been shown to answer questions that matter to patients, increase enrollment in studies, and improve the spread of research results to the public. However, there are limited evaluations of patient engagement in basic science research (research performed in a laboratory setting in various fields). Here, we provide an example of patients effectively involved in the planning and implementation of an ethically complex study in the field of Assistive Reproductive Technology. A Patient Engagement Studio, affiliated with an academic health center, directly connects patients and researchers through bi-monthly meetings. Recently, two researchers presented their project, Embryo+™, to the studio during the planning stage of their study. This project aims to use a new testing technology to reduce miscarriage rates. The researchers presented to the studio twice (fall 2019), and two follow-up meetings were conducted with the patients (summer 2020). Also, the patients completed a survey evaluating how engaged they felt with the project. Through the meetings, the researchers changed their language in response to patient feedback, and patients developed project protocols. Survey results showed that the patients thought this project was very meaningful and valuable. Overall, this evaluation shows that patients can add value to contentious bench science projects, particularly in the field of Assistive Reproductive Technology.
RESUMEN
When the 2010 Patient Protection and Affordable Care Act (ACA) was passed, it fundamentally changed end-of-life care for children. Concurrent Care for Children (ACA, section 2302) enables Medicaid/Children's Health Insurance Program children with a prognosis of 6 months to live to use hospice care while continuing treatment for their terminal illness. Although ACA, section 2302, was enacted a decade ago, little is known about these children. The purpose of this study was to generate the first-ever national profile of children enrolled in concurrent hospice care. Using data from multiple sources, including US Medicaid data files from 2011 to 2013, a descriptive analysis of the demographic, community, hospice, and clinical characteristics of children receiving concurrent hospice care was conducted. The analysis revealed that the national sample was extremely medically complex, even for children at end of life. They received care within a complicated system involving primary care providers, hospices, and hospitals. These findings have clinical and care coordination implications for hospice nurses.
Asunto(s)
Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Niño , Humanos , Medicaid , Patient Protection and Affordable Care Act , Cuidado Terminal , Estados UnidosRESUMEN
PURPOSE: The high cost of orthopaedic care has attracted criticism in the current value-based health care environment. The objective of this work was to assess the properties of a willingness to pay (WTP)-based approach to estimate the monetary value that patients place on health improvements in chronic knee conditions following orthopaedic treatment. METHODS: A sample of patients with a chronic knee condition were surveyed between January and May of 2018 at a large orthopaedic practice. Each patient provided their WTP for restoration to ideal knee health and completed the Single Assessment Numerical Evaluation (SANE) to describe their baseline knee state. Average WTP was calculated for the total sample and stratified by income, age, and baseline SANE (for which 0 is the worst and 100 is the best) levels. The patient-perceived monetary value of each unit of SANE improvement was assessed. RESULTS: The study sample included 86 patients seeking orthopaedic care for a chronic knee condition. Mean baseline SANE score was 45.5 (standard deviation: 25.0). Mean WTP to obtain ideal knee function from baseline was $18,704 (standard deviation: $18,040). For the full sample, patients valued a 1-unit improvement in SANE score at $291.1 (ß: 291.1; P<0.05). The amount of money patients were willing to pay to achieve ideal knee function varied with age, income, and baseline knee state. CONCLUSIONS: Patients appear to highly value improvement in chronic knee conditions. Willingness-to-pay survey results appear to track expected variation in patient outcome valuation by income and baseline knee condition and could be a valuable approach to assess value-based care in orthopaedics.