Evaluating feedback reports to support documentation of veterans' care preferences in home based primary care.

BACKGROUND: To evaluate the effectiveness of delivering feedback reports to increase completion of LST notes among VA Home Based Primary Care (HBPC) teams. The Life Sustaining Treatment Decisions Initiative (LSTDI) was implemented throughout the Veterans Health Administration (VHA) in the United States in 2017 to ensure that seriously ill Veterans have care goals and LST decisions elicited and documented. METHODS: We distributed monthly feedback reports summarizing LST template completion rates to 13 HBPC intervention sites between October 2018 and February 2020 as the sole implementation strategy. We used principal component analyses to match intervention to 26 comparison sites and used interrupted time series/segmented regression analyses to evaluate the differences in LST template completion rates between intervention and comparison sites. Data were extracted from national databases for VA HBPC in addition to interviews and surveys in a mixed methods process evaluation. RESULTS: LST template completion rose from 6.3 to 41.9% across both intervention and comparison HBPC teams between March 1, 2018, and February 26, 2020. There were no statistically significant differences for intervention sites that received feedback reports. CONCLUSIONS: Feedback reports did not increase documentation of LST preferences for Veterans at intervention compared with comparison sites. Observed increases in completion rates across intervention and comparison sites can likely be attributed to implementation strategies used nationally as part of the national roll-out of the LSTDI. Our results suggest that feedback reports alone were not an effective implementation strategy to augment national implementation strategies in HBPC teams.

Development and validation of a job aid: Tool to reduce infections in home-based stroke.

BACKGROUND:  Stroke patients who are discharged from hospital because of limited access to rehabilitation facilities are cared for by lay caregivers who at times have limited knowledge of infection prevention and control (IPC). User-friendly educational interventions can help bridge this knowledge gap and enhance safe care of these persons. AIM:  To describe the development and validation of educational interventions for home-based stroke patients. The validation process enhanced the reliability and validity of the job aid resulting in standardised quality patient care of stroke patients. SETTING:  Mutasa district, Manicaland province, Zimbabwe. METHODS:  The systematic six steps in quality intervention development guided the development of the job aid. Graphic designers assisted with development of diagrams and annotations. A purposively selected eight-member panel of IPC expert reviewers was invited to validate the job aid using a standardised validation tool. RESULTS:  The panel agreed that the job aid's title, target group and media of instruction were adequately explained, and the background could be easily understood during practice. The content was approved with some modifications on the description of instructions to caregivers. Seven reviewers agreed that the materials used ensured understandability, acceptability, practicability and usability of the educational interventions by caregivers, and one reviewer was neutral in commenting effectiveness of the job aid. CONCLUSION:  The developed job aid addressed knowledge barriers in IPC for caregivers, and the reviewers confirmed that the developed job aid was adequate for effective use by lay home-based caregivers.Contribution: Utilisation of this intervention standardises patient care practices.

End of life decision making when home mechanical ventilation is used to sustain breathing in Motor Neurone Disease: patient and family perspectives.

BACKGROUND: Motor Neurone Disease (MND) leads to muscle weakening, affecting movement, speech, and breathing. Home mechanical ventilation, particularly non-invasive ventilation (NIV), is used to alleviate symptoms and support breathing in people living with MND. While home mechanical ventilation can alleviate symptoms and improve survival, it does not slow the progression of MND. This study addresses gaps in understanding end-of-life decision-making in those dependent on home mechanical ventilation, considering the perspectives of patients, family members, and bereaved families. METHODS: A UK-wide qualitative study using flexible interviews to explore the experiences of people living with MND (n = 16), their family members (n = 10), and bereaved family members (n = 36) about the use of home mechanical ventilation at the end of life. RESULTS: Some participants expressed a reluctance to discuss end-of-life decisions, often framed as a desire to "live for the day" due to the considerable uncertainty faced by those with MND. Participants who avoided end-of-life discussions often engaged in 'selective decision-making' related to personal planning, involving practical and emotional preparations. Many faced challenges in hypothesising about future decisions given the unpredictability of the disease, opting to make 'timely decisions' as and when needed. For those who became dependent on ventilation and did not want to discuss end of life, decisions were often 'defaulted' to others, especially once capacity was lost. 'Proactive decisions', including advance care planning and withdrawal of treatment, were found to empower some patients, providing a sense of control over the timing of their death. A significant proportion lacked a clear understanding of the dying process and available options. CONCLUSIONS: The study highlights the complexity and evolution of decision-making, often influenced by the dynamic and uncertain nature of MND. The study emphasises the need for a nuanced understanding of decision-making in the context of MND.

Identification of Nursing Outcomes and Quality Indicators for Home Health Care in Older Adults with End-Stage Cancer.

OBJECTIVE: This study aimed to identify nursing outcomes and quality indicators for older adults with end-stage cancer receiving home health care. METHODS: Nineteen experts and professional caregivers, including palliative doctors, nursing faculty, advanced practice nurses, and registered nurses, participated in the Delphi technique. Final medians and interquartile ranges were calculated. RESULT: Seven components with 43 nursing outcomes and quality indicators for older adults with end-stage cancer were developed, encompassing physical pain relief, symptom management, physical well-being, complication prevention, psychosocial support, caregiver and family roles in end-of-life care, and advance care planning. CONCLUSION: The caregiver and family's role in end-of-life care had the most indicators, reflecting the significance of family involvement in Thailand's cultural context. Consistent implementation of these indicators is crucial, and correlational analysis of indicator scores can enhance their validity.

Ascertaining the Francophone population in Ontario: validating the language variable in health data.

BACKGROUND: Language barriers can impact health care and outcomes. Valid and reliable language data is central to studying health inequalities in linguistic minorities. In Canada, language variables are available in administrative health databases; however, the validity of these variables has not been studied. This study assessed concordance between language variables from administrative health databases and language variables from the Canadian Community Health Survey (CCHS) to identify Francophones in Ontario. METHODS: An Ontario combined sample of CCHS cycles from 2000 to 2012 (from participants who consented to link their data) was individually linked to three administrative databases (home care, long-term care [LTC], and mental health admissions). In total, 27,111 respondents had at least one encounter in one of the three databases. Language spoken at home (LOSH) and first official language spoken (FOLS) from CCHS were used as reference standards to assess their concordance with the language variables in administrative health databases, using the Cohen kappa, sensitivity, specificity, positive predictive value (PPV), and negative predictive values (NPV). RESULTS: Language variables from home care and LTC databases had the highest agreement with LOSH (kappa = 0.76 [95%CI, 0.735-0.793] and 0.75 [95%CI, 0.70-0.80], respectively) and FOLS (kappa = 0.66 for both). Sensitivity was higher with LOSH as the reference standard (75.5% [95%CI, 71.6-79.0] and 74.2% [95%CI, 67.3-80.1] for home care and LTC, respectively). With FOLS as the reference standard, the language variables in both data sources had modest sensitivity (53.1% [95%CI, 49.8-56.4] and 54.1% [95%CI, 48.3-59.7] in home care and LTC, respectively) but very high specificity (99.8% [95%CI, 99.7-99.9] and 99.6% [95%CI, 99.4-99.8]) and predictive values. The language variable from mental health admissions had poor agreement with all language variables in the CCHS. CONCLUSIONS: Language variables in home care and LTC health databases were most consistent with the language often spoken at home. Studies using language variables from administrative data can use the sensitivity and specificity reported from this study to gauge the level of mis-ascertainment error and the resulting bias.

Strategies and Interventions to Support Quality Outcomes in the Home Care Setting: A Longitudinal Multilevel Study.

BACKGROUND: The relationship between the practice environment, empowerment, and outcomes such as quality of care, job satisfaction, and intent to stay has been extensively studied in healthcare settings, including hospitals and long-term care facilities. Research consistently demonstrates that a positive practice environment, characterized by supportive leadership, adequate resources, and opportunities for professional growth, are associated with better quality of care, increased job satisfaction, and higher intent to stay among healthcare professionals. Limited knowledge exists regarding the specific relationship between the practice environment, empowerment, and these outcomes within home care organizations. OBJECTIVE: This study assesses the impact of strategies on nurse practice environment, social capital, decision latitude, workload, care quality, job satisfaction, and retention in a Belgian home healthcare organization. METHODS: A longitudinal survey was conducted in a home healthcare organization, with data collected at 3 time points: baseline (T1) (2015), T2 (2018), and T3 (2021). RESULTS: In T3, respondents reported significantly higher scores for departmental and general management compared with T1. The interventions led to significant improvements in social capital and decision latitude. Self-reported quality of care at the department level showed a significant increase, whereas no significant change was observed for quality of care during the last round. CONCLUSION: The implementation of strategies and interventions as part of a broader healthcare transformation process had a positive impact. Improvements were observed in nurse-reported quality of care, job satisfaction, and intent to stay in nursing. These findings emphasize the effectiveness of the implemented measures in enhancing nursing practice and creating a positive work environment. Continuous efforts to implement and evaluate such strategies are essential for enhancing the satisfaction and retention of nursing teams within healthcare organizations.

Mothers' perception of the care of newborn in the home environment.

OBJECTIVES: to identify mothers' perceptions about caring for newborns in the home environment, from the perspective of complexity thinking. METHODS: qualitative, exploratory and descriptive research, carried out between November/2022 and February/2023. Data were collected through individual interviews with 21 mothers from southern Brazil who cared for newborns at home and analyzed using the thematic analysis technique. RESULTS: the four thematic axes resulting from the data analysis: Living amidst order and disorder; embracing singularities; dealing with the certain and the uncertain; support network in the (re)organizing process demonstrate that the mother caring for a newborn in their home environment experiences a distinct and plural adaptive process, which must be welcomed and understood by health professionals who work within the family environment. FINAL CONSIDERATIONS: the care of newborns in a home environment, in the perception of mothers, requires differentiated attention and a formal or informal support network that considers the unique specificities of each woman/mother in the personal, family and social spheres. Therefore, in addition to the social support network, it is important to rethink home intervention approaches.

Appropriate use of medication among home care adult cancer patients at end of life: a retrospective observational study.

BACKGROUND: Medications are commonly used for symptom control in cancer patients at the end of life. This study aimed to evaluate medication utilization among home care palliative patients with cancer at the end of life and assess the appropriateness of these medications. METHOD: This retrospective observational study included adult cancer patients who received home care in 2020. Medications taken during the last month of the patient's life were reviewed and classified into three major categories: potentially avoidable, defined as medications that usually have no place at the end of life because the time to benefit is shorter than life expectancy; medications of uncertain appropriateness, defined as medications that need case-by-case evaluation because they could have a role at the end of life; and potentially appropriate, defined as medications that provide symptomatic relief. RESULTS: In our study, we enrolled 353 patients, and 2707 medications were analyzed for appropriateness. Among those, 1712 (63.2%) were classified as potentially appropriate, 755 (27.9%) as potentially avoidable, and 240 (8.9%) as medications with uncertain appropriateness. The most common potentially avoidable medications were medications for peptic ulcers and gastroesophageal reflux disease (30.5%), vitamins (14.6%), beta-blockers (9.8%), anticoagulants (7.9%), oral antidiabetics (5.4%) and insulin products (5.3%). Among the potentially appropriate medications, opioid analgesics were the most frequently utilized medications (19.5%), followed by laxatives (19%), nonopioid analgesics (14.4%), gamma-aminobutyric acid analog analgesics (7.7%) and systemic corticosteroids (6%). CONCLUSION: In home care cancer patients, approximately one-third of prescribed medications were considered potentially avoidable. Future measures to optimize medication use in this patient population are essential.

[Translation into French and republication of: "Home treatment for patients with cancer-associated venous thromboembolism"]. / Traduction et republication de : « Traitement à domicile des patients atteints de maladie veineuse thromboembolique associée au cancer ¼.

Patients hospitalised with acute venous thromboembolism (VTE), and notably patients with pulmonary embolism, often remain in hospital for extended periods due to the perceived risk of complications. However, several studies have shown that home treatment of selected patients is feasible and safe, with a low incidence of adverse events. This may offer clear benefits for patients' quality of life, hospital planning and cost to the health service. Nonetheless, there is a need for a VTE risk-stratification tool specifically addressing prognosis in patients with cancer. This may aid in the selection of low-risk patients with cancer and VTE who are suitable for outpatient treatment. Although several prognostic scores have been proposed, we suggest using a pragmatic clinical decision-making tool such as the Hestia criteria for selecting patients for home care in everyday clinical practice. Once patients have been discharged, it is mandatory to monitor patients regularly (we suggest after 3 days, 10 days, 1 month and 3 months, or more frequently if needed) with the involvement of a multidisciplinary team, so that appropriate and timely remedial action can be taken in case of warning signs of complications. If patients are selected carefully and monitored effectively, many patients who experience acute VTE can be cared for safely at home.

[Consensus on criteria and minimum data set for the referral of candidate patients for home enteral nutrition teleconsultation: TELENUT project]. / Consenso sobre criterios y conjunto mínimo de datos para la derivación de pacientes candidatos a teleconsulta de nutrición enteral domiciliaria: proyecto TELENUT.

Introduction: Introduction: teleconsultation is a useful healthcare tool in the multidisciplinary management of patients with indications of home enteral nutrition (HEN). The use of different teleconsultation platforms, as it happens in the Andalusian Health System (SAS), results in heterogeneous referral processes between Primary Care and hospital services in the same region. Objectives: to establish a consensus on patient profiles and the minimum data set necessary to guarantee an adequate referral to NED teleconsultation regardless of the existing platform. These agreed aspects in Andalusia can serve as a reference in other regions. Methods: three consecutive steps were followed: a) non-systematic review of the indexed literature on teleconsultation in clinical nutrition in Spain; b) survey to know the implementation and unmet needs of teleconsultation platforms in Andalusian public hospitals; and c) working meetings and consensus of 14 health professionals of Primary Care (n = 4) and endocrinology and hospital clinical nutrition (n = 10). Results: three referral forms were agreed in which three patient profiles were defined, with the corresponding minimum set of data necessary to request NED teleconsultation. The Primary Care team should provide this set of data to the clinical nutrition specialist via a teleconsultation platform, implemented in the SAS. Conclusions: three agreed forms between healthcare professionals involved in the referral process serve to standardize the request for teleconsultation of NED between healthcare teams based on patient profiles.

Introducción: Introducción: la teleconsulta es una herramienta asistencial útil en el manejo multidisciplinar de pacientes con indicación de nutrición enteral domiciliaria (NED). El empleo de diferentes herramientas de teleconsulta de NED, como ocurre en el Sistema Andaluz de Salud (SAS), conlleva heterogeneidad en los procesos de derivación entre los servicios de Atención Primaria (AP) y hospitalaria en una misma región. Objetivos: consensuar perfiles de pacientes y conjunto de datos mínimos necesarios para garantizar una derivación adecuada a la teleconsulta de NED, independientemente de la herramienta existente. Estos aspectos consensuados en Andalucía pueden servir de referencia en otras regiones. Métodos: se siguieron tres pasos consecutivos: a) revisión no sistemática de la literatura indexada sobre la teleconsulta en nutrición clínica en España; b) encuesta para conocer la implementación y las necesidades no satisfechas de las herramientas de teleconsulta en los hospitales públicos andaluces; y c) reuniones de trabajo y consenso de 14 profesionales sanitarios de AP (n = 4) y endocrinología y nutrición clínica hospitalaria (n = 10). Resultados: se consensuaron tres formularios de derivación en los que se definieron tres perfiles de pacientes, con el correspondiente conjunto mínimo de datos necesario para solicitar la teleconsulta de NED. El equipo de AP debe proporcionar este conjunto mínimo de datos al especialista en nutrición clínica a través de una herramienta de teleconsulta, implementada en el SAS. Conclusiones: tres formularios consensuados entre profesionales sanitarios involucrados en el proceso de derivación sirven para estandarizar la solicitud de teleconsulta de NED entre equipos asistenciales en función de perfiles de pacientes.

Comparison of Simplified Palliative Prognostic Index and Palliative Performance Scale in Patients with Advanced Cancer in a Home Palliative Care Setting.

Objective: The Palliative Performance Scale (PPS) has been reported to be as accurate as Palliative Prognostic Index (PPI). PPS is a component of the simplified PPI (sPPI). It is unknown whether PPS is as accurate as sPPI. This study aimed to compare the prognostic performance of the PPS and sPPI in patients with advanced cancer in a home palliative care setting in South Korea. Methods: This was a secondary analysis of a prospective cohort study that included Korean patients with advanced cancer who received home-based palliative care. We used the medical records maintained by specialized palliative care nurses. We computed the prognostic performance of PPS and sPPI using the area under the receiver operating characteristic curve (AUROC) and calibration plots for the 3- and 6-week survival. Results: A total of 80 patients were included, with a median overall survival of 47.0 days. The AUROCs of PPS were 0.71 and 0.69 at the 3- and 6-week survival predictions, respectively. The AUROCs of sPPI were 0.87 and 0.73 at the 3- and 6-week survival predictions, respectively. The calibration plot demonstrated satisfactory agreement across all score ranges for both the PPS and sPPI. Conclusions: This study showed that the sPPI assessed by nurses was more accurate than the PPS in a home palliative care setting in predicting the 3-week survival in patients with advanced cancer. The PPS can be used for a quick assessment.

Systematic review of service improvements for home enteral tube feeding in adults.

BACKGROUND: Patients receiving home enteral tube feeding (HETF) have a high risk of complications and readmission to hospital. This study aims to evaluate effectiveness of staff- and/or patient-focused service-improvement strategies on clinical, patient-reported, and economic outcomes for patients receiving HETF across adult settings. METHODS: The search was conducted using MEDLINE, EMBASE, and CINAHL databases. Quality of studies were appraised using the Cochrane Collaboration Risk of Bias tool and Grading of Recommendations Assessment, Development, and Evaluation (GRADE) assessment. RESULTS: Eleven studies met the inclusion criteria. Pooled data found targeted HETF education with patients, carers, and staff significantly improved knowledge immediately after education and was sustained at 3-6 months. Multimodal interventions, including the formation of specialist HETF teams, significantly reduced complications such as infection, gastrostomy blockage, tube displacement, and feed intolerance but do not significantly reduce unplanned hospital encounters (outpatient clinic visits, hospitalizations, and emergency presentations). Owing to the high risk of bias in the included studies, there is low-quality evidence to support staff training, patient education, and dedicated HETF teams. CONCLUSION: This review highlights the need for further quality research to allow higher-level evidence for determining the usefulness of interventions aimed at improving outcomes for patients receiving HETF. Future research needs to include greater assessment of quality of life, quantification of the value of interventions in economic terms, and use of translational research frameworks. However, effective staff and patient education programs, along with comprehensive multidisciplinary care, should be considered standard care until a larger research base is developed.

ESPEN practical guideline: Home enteral nutrition.

This ESPEN practical guideline will inform physicians, nurses, dieticians, pharmacists, caregivers and other home enteral nutrition (HEN) providers in a concise way about the indications and contraindications for HEN, as well as its implementation and monitoring. This guideline will also inform interested patients requiring HEN. Home parenteral nutrition is not included but will be addressed in a separate ESPEN guideline. The guideline is based on the ESPEN scientific guideline published before, which consists of 61 recommendations that have been reproduced and renumbered, along with the associated commentaries that have been shorted compared to the scientific guideline. Evidence grades and consensus levels are indicated. The guideline was commissioned and financially supported by ESPEN and the members of the guideline group were selected by ESPEN.

Preventable Readmissions Following Common Cancer Surgeries: Lessons Learned from New York State and Targets for Improvement.

BACKGROUND: Potentially preventable readmissions of surgical oncology patients offer opportunities to improve quality of care. Identifying and subsequently addressing remediable causes of readmissions may improve patient-centered care. OBJECTIVES: To identify factors associated with potentially preventable readmissions after index cancer operation. METHODS: The New York State hospital discharge database was used to identify patients undergoing common cancer operations via principal diagnosis and procedure codes between the years 2010 and 2014. The 30-day readmissions were identified and risk factors for potentially preventable readmissions were analyzed using competing risk analysis. RESULTS: A total of 53,740 cancer surgeries performed for the following tumor types were analyzed: colorectal (CRC) (42%), kidney (22%), liver (2%), lung (25%), ovary (4%), pancreas (4%), and uterine (1%). The 30-day readmission rate was 11.97%, 47% of which were identified as potentially preventable. The most common cause of potentially preventable readmissions was sepsis (48%). Pancreatic cancer had the highest overall readmission rate (22%) and CRC had the highest percentage of potentially preventable readmissions (51%, hazard ratio [HR] 1.42, 95% confidence interval [95%CI] 1.28-1.61). Risk factors associated with preventable readmissions included discharge disposition to a skilled nursing facility (HR 2.22, 95%CI 1.99-2.48) and the need for home healthcare (HR 1.61, 95%CI 1.48-1.75). CONCLUSIONS: Almost half of the 30-day readmissions were potentially preventable and attributed to high rates of sepsis, surgical site infections, dehydration, and electrolyte disorders. These results can be further validated for identifying broad targets for improvement.

A Comparison of Home Health Utilization, Outcomes, and Cost Between Medicare Advantage and Traditional Medicare.

BACKGROUND: Home health use is rising rapidly in the United States as the population ages, the prevalence of chronic disease increases, and older Americans express their desire to age at home. Enrollment in Medicare Advantage (MA) plans rather than Traditional Medicare (TM) has grown as well, from 13% of total Medicare enrollment in 2004 to 39% in 2020. Despite these shifts, little is known about outcomes and costs following home health in MA as compared with TM. OBJECTIVE: The objective of this study was to measure the association of MA enrollment with outcomes and costs for patients using home health. DESIGN: This was a retrospective cohort study. PARTICIPANTS: Patients enrolled in plans offered by 1 large, national MA organization and patients enrolled in TM, with at least 1 home health visit between January 1, 2017, and June 30, 2018. EXPOSURE: MA enrollment. MAIN MEASURES: We compared the intensity of home health services and types of care delivered. The main outcome measures were hospitalization, the proportion of days in the home, and total allowed costs during the 180-day period following the first qualifying home health visit during the study period. KEY RESULTS: Among patients who used home health, our models demonstrated enrollment in MA was associated with 14%, and 6% decreased odds of 60- and 180-day hospitalization, respectively, a 12.8% and 14.7% decrease in medical costs exclusive and inclusive of home health costs, respectively, and a 0.27% increase in the proportion of days at home during the 180-day follow-up, equivalent to an additional half-day at home. There were few differences in home health care delivered for MA and TM [mean number of visits in the first episode of care (17.1 vs. 17.3) and mean visits per week (3.2 vs. 3.3)]. The mean number of visits by visit type and percent of patients with each type was similar between MA and TM as well. CONCLUSIONS: Compared with enrollment in TM, enrollment in MA was associated with improved patient-centered outcomes and lower cost and utilization, despite few differences in the way home health was delivered. These findings might be explained by structural components of MA that encourage better care management, but further investigation is needed to clarify the mechanisms by which MA enrollment may lead to higher value home health care.

Family reports of end-of-life care among veterans in home-based primary care: The role of hospice.

BACKGROUND: The Department of Veterans Affairs (VA)'s home-based primary care (HBPC) program provides coordinated, interdisciplinary care to seriously ill and disabled veterans, but few evaluations have considered end-of-life (EOL) care in this population. The aim of this study was to describe veterans' use of community-based hospice services while enrolled in HBPC and their associations with bereaved families' perceptions of care. METHODS: This study was a retrospective analysis of electronic medical record and bereaved family survey (BFS) data for veterans who died while enrolled in VA's HBPC program between October 2013 and September 2019. Seven regional VA networks called Veteran Integrated Service Networks participated in BFS data collection. The final sample included 3967 veterans who were receiving HBPC services at the time of death and whose next-of-kin completed a BFS. The primary outcome was the BFS global rating of care received in the last 30 days of life. Adjusted proportions for all BFS outcomes were examined and compared between those who received community-based hospice services and those who did not. RESULTS: Overall, 52.6% of BFS respondents reported that the care received by HBPC-enrolled veterans in the last 30 days of life was excellent using the BFS global rating. Among families of HBPC-enrolled veterans who received community-based hospice services, the BFS global rating was roughly eight percentage points higher than those who did not (55.7 vs. 47.0%, p < 0.001). On 12 of the 14 secondary BFS outcomes, veterans who received hospice scored higher than those who did not. CONCLUSIONS: Receipt of hospice services while enrolled in HBPC was associated with higher ratings of EOL care by bereaved family members. Integration of community hospice partners for qualifying veterans who are enrolled in the HBPC program represents a potential opportunity to improve the overall experience of EOL care for veterans and their families.

Partner Care Arrangements and Well-Being in Mid- and Later Life: The Role of Gender Across Care Contexts.

OBJECTIVES: We assess gender moderation in the association between partner care arrangements and individuals' well-being, and the extent to which gender differences vary across European care contexts. METHODS: We use 2015 data from the Survey of Health, Ageing and Retirement in Europe for 3,465 couples aged 50+, where at least 1 partner receives care. We assess gender differences in individuals' life satisfaction and depressive symptoms across 5 partner care arrangements: solo-; shared formal; shared informal; outsourced formal; and outsourced informal care. We explore heterogeneity in the gendered associations across 4 care contexts: Northern, Western, Southern, and Eastern Europe. RESULTS: Sharing care with formal providers is associated with lower well-being among women than men, with a significant well-being "penalty" among Southern European women with partners in shared formal care. Outsourcing partner care to informal providers is associated with higher well-being than other care arrangements for men across care contexts, but with lower well-being for women in Southern Europe. DISCUSSION: Policies to support caregivers' well-being need to be sensitive to the coordination of formal and informal caregiving support for men and women in their respective care contexts.

Remote monitoring in telehealth care delivery across the U.S. cystic fibrosis care network.

BACKGROUND: Cystic fibrosis (CF) programs and people with CF (PwCF) employed various monitoring methods for virtual care during the COVID-19 pandemic. This paper characterizes experiences with remote monitoring across the U.S. CF community. METHODS: The CF Foundation (CFF) sponsored distribution of home spirometers (April 2020 to May 2021), surveys to PwCF and CF programs (July to September 2020), and a second program survey (April to May 2021). We used mixed methods to explore access, use, and perspectives regarding the use of remote monitoring in future care. RESULTS: By October 2020, 13,345 spirometers had been distributed, and 19,271 spirometers by May 2021. Programs (n=286) estimated proportions of PwCF with home devices increased over seven months: spirometers (30% to 70%), scales (50% to 70%), oximeters (5% to 10%) with higher estimates in adult programs for spirometers and oximeters. PwCF (n=378) had access to scales (89%), followed by oximeters (48%) and spirometers (47%), often using scales and oximeters weekly, and spirometers monthly. Over both surveys, some programs had no method to collect respiratory specimens for cultures associated with telehealth visits (47%, n=132; 41%, n=118). Most programs (81%) had a process for phlebotomy associated with a telehealth visit, primarily through off-site labs. Both PwCF and programs felt future care should advance remote monitoring and recommended improvements for access, training, and data collection systems. CONCLUSIONS: PwCF and programs experienced unprecedented access to remote monitoring and raised its importance for future care. Improvements to current systems may leverage these shared experiences to augment future care models.

Nutrición parenteral domiciliaria en España, 2019: informe del Grupo de Nutrición Artificial Domiciliaria y Ambulatoria NADYA / Home and Ambulatory Artificial Nutrition (NADYA) Group report: home parenteral nutrition in Spain, 2019

Objetivo: comunicar los datos de nutrición parenteral domiciliaria (NPD) obtenidos del registro del grupo NADYA-SENPE (www.nadya-senpe.com) del año 2019. Material y métodos: análisis descriptivo de los datos recogidos de pacientes adultos y pediátricos con NPD en el registro NADYA-SENPE desde el 1 de enero al 31 de diciembre de 2019. Resultados: se registraron 283 pacientes (51,9 %, mujeres), 31 niños y 252 adultos procedentes de 47 hospitales españoles, lo que representa una tasa de prevalencia de 6,01 pacientes/millón de habitantes/año 2019. El diagnóstico más frecuente en los adultos fue “oncológico paliativo” y “otros” (21,0 %). En los niños fue la enfermedad de Hirschsprung junto a la enterocolitis necrotizante, las alteraciones de la motilidad intestinal y la pseudoobstrucción intestinal crónica, con 4 casos cada uno (12,9 %). El primer motivo de indicación fue el síndrome del intestino corto tanto en los niños (51,6 %) como en los adultos (37,3 %). El tipo de catéter más utilizado fue el tunelizado tanto en los niños (75,9 %) como en los adultos (40,8 %). Finalizaron 68 episodios, todos en adultos: la causa más frecuente fue el fallecimiento (54,4 %). Pasaron a la vía oral el 38,2 %. Conclusiones: el número de centros y profesionales colaboradores con el registro NADYA va incrementándose. Se mantienen estables las principales indicaciones y los motivos de finalización de la NPD. (AU)

Aim: to communicate the home parenteral nutrition (HPN) data obtained from the HPN registry of the NADYA-SENPE group (www.nadya-senpe.com) for the year 2019. Material and methods: a descriptive analysis of the data collected from adult and pediatric patients with HPN in the NADYA-SENPE group registry from January 1 to December 31, 2019. Results: a total of 283 patients (51.9 % women), 31 children, and 252 adults from 47 Spanish hospitals were registered, which represents a prevalence rate of 6.01 patients per million inhabitants for year 2019. The most frequent diagnosis in adults was “palliative oncological” and “others” (21.0 %). In children, it was Hirschsprung's disease together with necrotizing enterocolitis, alterations in intestinal motility, and chronic intestinal pseudo-obstruction, with 4 cases each (12.9 %). The first reason for the indication was short-bowel syndrome in both children (51.6 %) and adults (37.3 %). The most used type of catheter was tunnelled both in children (75.9 %) and in adults (40.8 %). Sixty-eight episodes ended, all in adults, and the most frequent cause was death (54.4 %); 38.2 % were switched to oral. Conclusions: the number of collaborating centers and professionals in the NADYA registry is increasing. The main indications and reasons for HPN termination remain stable. (AU)