Burden Of Care Research Articles

A Novel Curriculum for Surgical Oncology Fellowship Training in West Africa.

Low- and middle-income countries (LMICs) lack the surgical capacity to contend with the growing burden of cancer care. West Africa is particularly affected, where limited cancer surgery is performed primarily by general surgeons without any subspecialty training. As a first step to develop surgical oncology capacity in the region, the West African College of Surgeons (WACS) in partnership with the Global Oncology Group at Queen's University, Canada, co-created a novel surgical oncology fellowship training program. Curriculum development began with a literature review of publications, global position statements, and curricular documents from surgical oncology societies and accreditation bodies. The results were reviewed by the WACS team members to reach consensus on the competencies and objectives of the program based on the perceived needs and available resources in West Africa. Iterative discussions between the Queen's Global Oncology Group and WACS leadership led to the creation of the surgical oncology curricular documents. A curriculum tailored to the West African context was developed to deliver essential knowledge, skills, and competencies for surgical oncologists in the region. The curriculum focuses on the six core domains of general surgical oncology, highlighting specific knowledge base and procedural skills within each clinical domain. Educational activities were outlined and the curriculum format, delivery, and trainee assessment were also described. A surgical oncology curriculum developed specifically for the West African context will enhance the capacity for cancer surgery in the region. This curriculum may serve as a model for future surgical oncology program development in LMICs.

Widely Integrated Services in Home (WISH) for homebound older adults: a study protocol for a randomized encouragement trial.

Home-based primary care (HBPC) is an emerging patient-centered, interprofessional healthcare service model that can address unmet medical needs and care burdens for homebound older adults. In December 2022, the Ministry of Health and Welfare in South Korea launched the Home-Based Medical Center Demonstration project to provide a new bundle payment for physician home visits. In this study, we seek to determine whether the recently introduced HBPC services in South Korea have been associated with a reduction in long-term care (LTC) facility admissions and acute hospitalizations among homebound older adults. The study is a community-based, multicenter, two-arm, randomized encouragement design trial with a 12-month follow-up period (n = 600). Eligible study participants are community-dwelling LTC recipients with multimorbidity and functional deterioration. Study participants are recruited from five HBPC centers located in urban areas (Northeast Seoul, West Seoul, Daejeon, Wonju, and Paju). The study participants are randomly assigned to either the HBPC group or the usual care group with a 1:1 allocation ratio. Those assigned to the HBPC group receive longitudinal home visits at least once a month by an interprofessional HBPC team according to the Widely Integrated Services in Home (WISH) intervention protocol. This protocol adheres to the Integrated Care for Older People principles, which call for a person-centered assessment and broader integration of health and LTC services at the micro-, meso- and macro-levels. Primary outcomes of the trial are 1) between-group community survival days and 2) between-group potentially avoidable hospitalizations. Results of the treatment are estimated by both modified intention-to-treat and complier average causal effect analytic methods. This study aims to investigate the real-world effectiveness of HBPC on the reduction of LTC facility admissions and acute care hospitalizations in the community setting. The findings may inform healthcare policy decisions to expand HBPC services in South Korea and other countries. CRIS KCT0007921.

Abstract A015: Validation of a cancer early-detection assay on liquid biopsies using DNA methylation

Abstract There is growing awareness of the benefits of early cancer detection. Early intervention can improve patient outcomes, leading to a reduction in the health care burden associated with cancer, and can also provide critical information for personalized treatments. Liquid biopsies enable quick, easy, non-invasive, and real-time testing that is suitable for screening and increases accessibility, particularly in developing countries. The use of epigenomic techniques, such as DNA methylation profiling, enhances the depth and breadth of screening beyond what standard genetic analysis can offer. Universal Diagnostics (UDx), a respected pioneer in the field of early cancer detection, has partnered with Hologic Diagenode, which brings 20 years of experience in epigenomics, to develop a customized early detection workflow for colorectal cancer (CRC). This analysis relies on DNA methylation biomarkers identified within cell-free DNA (cfDNA) from plasma. The UDx assay provides not only easy screening but also a more comprehensive analysis than that possible with conventional markers. Genome-wide methylation profiles from healthy individuals and cancer patients were used to identify biomarkers. These biomarker candidates were then validated for performance; the results of which are presented in this poster. Citation Format: Ekaterina Gracheva. Validation of a cancer early-detection assay on liquid biopsies using DNA methylation [abstract]. In: Proceedings of the AACR Special Conference: Liquid Biopsy: From Discovery to Clinical Implementation; 2024 Nov 13-16; San Diego, CA. Philadelphia (PA): AACR; Clin Cancer Res 2024;30(21_Suppl):Abstract nr A015.

Abstract 4134569: Palliative care needs assessment by integrated palliative care outcome scale in hospitalized heart failure patients: an observational study

Background and purpose: Patients with heart failure (HF) have a high burden of palliative care needs (PCN) and a worse prognosis that is not lower than cancer. The Integrated Palliative Care Outcome Scale (IPOS) is a scale that evaluates PCN in illness patients, mostly in cancer. Purpose: To evaluate the PCN in hospitalized heart failure patients by IPOS and its relation with patients’ characteristics and mortality. Methodology: A cross-sectional study was conducted on 160 HF hospitalized patients in Vietnam, who were evaluated by IPOS, including questions using a 5-point Likert scale (0 [best]–4 [worst] points) about physical symptoms (10 items), emotional symptoms (4 items), and communication and practical issues (3 items). Patients were determined to have PCN if having ≥ two items with 4 points or ≥ 3 items with ≥ 3 points. Results and discussions: Mean age: 69,57 ± 11,95 years, male: 68.75%, mean LVEF: 44.19 ±16.11%, and NT-proBNP level: 9107.3 ± 30459.1ng/L, the percentage of patients with PCN was 59.38%. The majority of patients had moderate levels (2 points) of dyspnea (38.13%), weakness (35.0%), and low levels (0 or 1 point) of other physical symptoms. Moderate levels (2 points) were the most common in the patient’s anxiety (43.13%) and family anxiety (51.25%), feeling at peace (40.0%), sharing feelings (55.0%), enough information (45.0%), and practical issue (45.0%). Having PCN was significantly correlated to the duration of heart failure, eGFR, and usage of intravenous medication but not related to heart failure severity (NYHA class, LVEF, NT-ProBNP level) and other characteristics (age, gender, residency, educational levels, occupation). Having PCN was independently associated with higher all-cause mortality after discharge with follow-up for one year (P = 0.037). Conclusions: Hospitalized patients with HF had multi-dimensional symptom burdens in moderate levels. PCN was not related to HF severity but correlated to duration of heart failure, eGFR, and usage of intravenous medication. Having PCN was independently associated with mortality after discharge.

Abstract 4114994: Nursing Management Practice Variations related to Externalized Ventricular and Lumbar Drains

Introduction/Background: Nursing management of neurologic patients may include placement of externalized ventricular drains (EVDs) or lumbar drains (LDs) to monitor/drain cerebrospinal fluid (CSF), but knowledge and practice related to EVD management varies widely, despite a high potential for life-threatening complications. Limited data exists relative to the relationship between intracranial pressure (ICP) and CSF drainage. These gaps may undermine patient safety. Research Question: What are the nursing practices and perspectives regarding management of EVDs and LDs? Methods/Approach: A 16-question multiple-choice/text entry survey was distributed electronically to nurses and advanced practice nurses who were members of the American Association of Neuroscience Nurses. Data analysis included chi-square test for multiple choice responses, and qualitative data was analyzed using a six-step thematic analysis and an inductive approach. Results/Data: Of 219 participants, 42.8% reported roles as Neuroscience ICU nurses, and 39.2% managed an EVD at least 75% of the time. Neuro ICU nurses were most likely to have a patient with an EVD ( p =.002). Approximately 63% of respondents reported consulting with colleagues about EVDs nearly every time they cared for a patient with an EVD. Nurses reported a very high care burden, including re-leveling the transducer 4 or more times per shift (n=76), and re-zeroing every 8 hours (n=72) to assure accurate calibration. Of these 82.2% reported that they re-zeroed the EVD more often to obtain an accurate reading. Approximately 25% reported accidental over-drainage, some with negative outcomes. Many (79.3%) reported caring for patients with LDs, 47.4% to diagnose normal pressure hydrocephalus. The nursing care workload was described as 30-120 minutes each shift. Conclusion: A wide heterogeneity of nursing practices was revealed in EVD and LD management. No standardized nursing care practices have been adopted by nurses for the management of CSF. The complications of these practice variations have been shown to result in untoward patient outcomes. Increased patient morbidity and mortality are linked to catheter infection and over/under drainage of CSF and may be directly related nursing practice. This reveals critical need for improved, standardized care nursing practices in the management of EVDs and LDs, and an empiric understanding of the relationship between intracranial pressure and the volume and rate of CSF drainage.

QOL-20. NATIONAL BRAIN TUMOR SOCIETY BRAIN TUMOR QUALITY OF LIFE RESEARCH AGENDA

Abstract BACKGROUND QoL is a critical aspect of health care outcomes, particularly in the context of brain tumor treatment and survivorship. There are evidence gaps in optimal strategies for improving QoL among brain tumor patients and care partners. Understanding the multifaceted dimensions of QoL and identifying key areas for brain tumor QoL research can significantly enhance patient care and support. Engaging the brain tumor community in defining QoL outcomes and determining research priorities can help orient research resources to community needs and perspectives. OBJECTIVE To summarize the process and outcomes of an NBTS-led collaborative effort to co-design a comprehensive research agenda on QoL for brain tumor patients and care partners, as outlined in the “Brain Tumor QoL Research Agenda.” METHODS The agenda was developed through a collaborative effort involving experts in neuro-oncology, patients, care partners, patient advocacy groups, and healthcare professionals over a two-year period. A review of existing literature, patient experiences, and expert opinions informed the identification of key research priorities. A multistakeholder advisory group held monthly meetings where brain tumor QoL was defined. In 2023, we conducted two “Research Roundtables” for adults and pediatric/AYA. The World Cafe method captured data and a survey consensus process to validate findings. RESULTS The QoL research agenda delineates a multifaceted framework encompassing domains crucial for understanding and improving QoL in brain tumor patients. Key focus areas include symptom management, psychosocial support, care burden, treatment decision-making, survivorship issues, and health care delivery models. An RFP was released by NBTS with input from stakeholder advisors in April 2024. CONCLUSION The Brain Tumor QoL Research Agenda created a roadmap for advancing research efforts aimed at enhancing the QoL of individuals affected by brain tumors. By addressing the identified research priorities, healthcare stakeholders can work towards implementing effective interventions and policies to optimize patient outcomes and well-being. This program was funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (EACB-23261).

RESUMO Introdução: Os transtornos mentais são definidos como sendo síndromes caracterizadas por uma perturbação clinicamente expressiva na cognição, na regulação emocional ou no comportamento de um indivíduo, que refletem uma disfunção nos processos psicológicos, biológicos ou de desenvolvimento subjacentes ao funcionamento mental. Estes estão frequentemente associados ao sofrimento ou às incapacidades. Sabe-se que uma das características marcantes de determinados transtornos

Introduction: Mental disorders are defined as syndromes characterized by a clinically significant disturbance in an individual's cognition, emotional regulation or behavior, which reflect a dysfunction in the psychological, biological or developmental processes underlying mental functioning. These are often associated with suffering or disabilities. It is known that one of the striking characteristics of certain disorders is related to their chronicity, which reduces the possibility of a cure and raises the discussion about controlling their symptoms to maintain the quality of life of individuals who suffer from them. A little associated but relevant intervention, if the state of chronic users in mental health is analyzed, is palliative care and its palliative actions that do not seek a cure, but to offer the maximum possible comfort to the user from diagnosis until their last day of life. Objective: Gather and analyze information regarding palliative psychiatry and its benefits for patients with mental disorders. Methodology: Articles published in indexed journals in the Scientific Electronic Library Online (SCIELO), National Library of Medicine/NLM (MEDLINE), and National Library of Medicine/NLM (PUBMED) databases were evaluated, in addition to official sites such as the Ministry of Health of Brazil and the World Health Organization, covering the period from 2014 to 2024. Results and Discussion: After completing the data collection phase, 33 relevant articles were identified for analysis of the proposed theme. It has been noted that palliative psychiatry encompasses a wide range of issues, including widely known mental health conditions such as anxiety or depression, severe mental illnesses refractory to treatment, neuropalliative care, and symptom burden at various levels. Furthermore, it addresses ethical and psychosocial problems, psychological suffering, personality, desire and desire to die, dignity, loneliness, social isolation, as well as psychopharmacology. And that this care would be advantageous and of fundamental importance to patients with serious mental illnesses. Conclusion: Given the new perspectives for mental health care in an increasingly humanized way, the articles highlighted the benefits of palliative psychiatry and its importance in improving the quality of life of patients with serious mental disorders. However, it was also observed that many barriers need to be overcome to guarantee quality care for the group in question.

RESUMO Introdução: Os transtornos mentais são definidos como sendo síndromes caracterizadas por uma perturbação clinicamente expressiva na cognição, na regulação emocional ou no comportamento de um indivíduo, que refletem uma disfunção nos processos psicológicos, biológicos ou de desenvolvimento subjacentes ao funcionamento mental. Estes estão frequentemente associados ao sofrimento ou às incapacidades. Sabe-se que uma das características marcantes de determinados transtornos

Introduction: Mental disorders are defined as syndromes characterized by a clinically significant disturbance in an individual's cognition, emotional regulation or behavior, which reflect a dysfunction in the psychological, biological or developmental processes underlying mental functioning. These are often associated with suffering or disabilities. It is known that one of the striking characteristics of certain disorders is related to their chronicity, which reduces the possibility of a cure and raises the discussion about controlling their symptoms to maintain the quality of life of individuals who suffer from them. A little associated but relevant intervention, if the state of chronic users in mental health is analyzed, is palliative care and its palliative actions that do not seek a cure, but to offer the maximum possible comfort to the user from diagnosis until their last day of life. Objective: Gather and analyze information regarding palliative psychiatry and its benefits for patients with mental disorders. Methodology: Articles published in indexed journals in the Scientific Electronic Library Online (SCIELO), National Library of Medicine/NLM (MEDLINE), and National Library of Medicine/NLM (PUBMED) databases were evaluated, in addition to official sites such as the Ministry of Health of Brazil and the World Health Organization, covering the period from 2014 to 2024. Results and Discussion: After completing the data collection phase, 33 relevant articles were identified for analysis of the proposed theme. It has been noted that palliative psychiatry encompasses a wide range of issues, including widely known mental health conditions such as anxiety or depression, severe mental illnesses refractory to treatment, neuropalliative care, and symptom burden at various levels. Furthermore, it addresses ethical and psychosocial problems, psychological suffering, personality, desire and desire to die, dignity, loneliness, social isolation, as well as psychopharmacology. And that this care would be advantageous and of fundamental importance to patients with serious mental illnesses. Conclusion: Given the new perspectives for mental health care in an increasingly humanized way, the articles highlighted the benefits of palliative psychiatry and its importance in improving the quality of life of patients with serious mental disorders. However, it was also observed that many barriers need to be overcome to guarantee quality care for the group in question.

INNV-16. ONCOPATH: OPTIMIZED TREATMENT GUIDELINE CONCORDANT PATHWAY PRESENTED ON A VISUAL-INTERACTIVE DASHBOARD FOR CLINICAL DECISION SUPPORT COMPUTED BY OVERLAYING PATIENT LONGITUDINAL DATA ON A KNOWLEDGE GRAPH

Abstract BACKGROUND OncoPath provides a visual analysis of a brain tumor patient’s longitudinal clinical data overlayed on disease specific pathways with the goal of reducing knowledge discordant care and insurance authorization burden. By ingesting, curating and visually presenting the patient experience on guidelines, OncoPath aims to streamline clinical decision making and related processes. Understanding the patient’s journey compared to treatment guidelines is of value in addressing health equity and guideline adoption in real world settings. METHODS Data from 44 glioma patients diagnosed and treated between 2016-2021 were uploaded to OncoPath using natural language processing and other tools to capture abstractable data elements. The data was overlayed on guidelines using recursive graph modeling. Using the knowledge graph of a patient’s history, the model also recommends treatment options in an interactive visual dashboard representing NCCN guidelines. The dashboard includes the guidelines in graphical format with associated references and notation. RESULTS 28 males and 16 females age 21-38 years at diagnosis were abstracted. Cases represented 4 oligodendrogliomas, 13 astrocytomas, and 27 glioblastomas. Data was available through second line therapy, discharge to hospice or death. Cases were matched to the NCCN 2021 guidelines which was used for treatment decisions until November 2022. The patient data matched OncoPath except in 3 cases where KPS was not available resulting in premature pathway truncation. For these cases we inferred KPS based on subsequent treatment received to optimize the historic data. CONCLUSION To our knowledge, this is a first-of-a-kind technology in neuro-oncology that may improve time to treatment, reduce health utilization resources and can serve as a benchmarking tool for care delivery. The feasibility of clinically implementing such tools for decision support was demonstrated. This type of tool could be particularly useful in low-resource areas where disease specific expertise may not be available or to illuminate care discrepancies.

"It is not the fault of the health care team - it is the way the system works": a mixed-methods quality improvement study of patients with advanced cancer and family members reveals challenges navigating a fragmented healthcare system and the administrative and financial burdens of care.

Healthcare fragmentation and lack of care coordination are longstanding problems in cancer care. This study's goal was to provide in-depth understanding of how the organization and fragmentation of healthcare impacts the experiences of patients with advanced cancer and their families, especially near the end-of-life. This mixed-methods quality improvement study took place at a large multi-specialty healthcare organization in Northern California. Electronic health record data was used to identify patients with advanced cancer and their characteristics. Data were collected 10/2019-05/2022 through periodic patient surveys and in-depth interviews with sampled family members, including open-ended questions about overall healthcare experiences. Data were analyzed using inductive thematic analysis. Overall, 281/482 (58.3%) patients with advanced cancer completed surveys. Surveyed patients' mean age was 68 (SD: 12.8) years, 53% were male, 73% White, 14.2% Asian, 1.4% Black, 3.9% Other; 8.9% Hispanic, and 19.2% were deceased within 12 months. Twenty-four family members completed in-depth interviews: 17/24 (70.8%) were spouses, 62.5% were female and 50% were interviewed after the patient's death. Respondents were generally positive about health care team interactions, but consistently brought up the negative impacts of the organization of healthcare, "It is not the fault of the health care team - it is the way the system works." Three major challenges were identified. (1) Systemic healthcare care fragmentation, including difficulties navigating care across providers and institutions, "It seems like everything is like an isolated incident… there's no overall, big picture viewpoint." (2) Administrative burdens, "In the end I gave up [scheduling care] because I was tired of calling." (3) Financial burdens, "This oncologist wanted to put him on a drug…but it was $4000 a month." Respondents described these challenges leading to worse quality of care, health, and quality of life, and loss of trust in the national healthcare system. These findings illustrate how care fragmentation and administrative and financial burdens lead to worse quality care and distrust of healthcare. Better coordination of patient-centered care, and a fundamental restructuring of a highly fragmented national healthcare system are required to meet the needs of patients with complex conditions like advanced cancer and their families.

Healthcare needs and expectations of family members caring for mental healthcare users in South Africa

Background: In South Africa, many mental healthcare users reside in rural areas and 91% of them live with their family members. Exploring and describing the needs of family members caring for mental healthcare users is important to determine their expectations of the healthcare system.Objectives: The study aimed to explore and describe the healthcare needs and expectations of family members caring for mental healthcare users in Vhembe district, Limpopo province, South AfricaMethod: A qualitative, descriptive and contextual design was used to collect data from 16 purposively selected family members caring for mental healthcare users. Data were collected through semi-structured face-to-face interviews, and analysed using thematic data analysis to develop themes and categories.Results: The results of the interviews yielded two themes, healthcare needs and expectations of family members. The needs included physical healthcare, psychological healthcare, and social, financial, educational and spiritual needs. The healthcare expectations were divided into two sub-themes: (1) expectations from the healthcare systems, and (2) expectations from healthcare professionals.Conclusion: The study showed that support from community members and healthcare providers could reduce the burden of care perceived by family members. Results confirmed the need for developing a family psychoeducational programme adapted to the South African context to meet the family members’ needs. Quantitative research on healthcare needs with a larger sample of family members is recommended.Contribution: The study may contribute to mental health nursing practice and education. Nursing support based on the needs of family members may enhance their well-being and caregiving abilities. The importance of tailor-made psychoeducational family support should be emphasised in nursing education.

Short-term outcome of personalized theory-based pharmaceutical care service on the medication administration problems of family caregivers: a pre-post intervention study.

Family caregivers face many problems during administration of medications. Pharmacists are reliable and accessible healthcare providers in addressing family caregivers' medication related inquiries in primary care. This study aimed to evaluate theshort-term outcome of apersonalized theory-based pharmaceutical care service on the medication administration problems of family caregivers. This pre-post intervention study was carried out among family caregivers at a community pharmacy in Istanbul, Türkiye from May through December 2022. The service was developed by mapping problems using theTheoretical Domains Framework and selecting related behavioural change techniques. The primary outcome was the change in the scores on the Turkish version of the Family Caregiver Medication Administration Hassles Scale (FCMAHS-TR) from baseline to the one-month follow-up assessment. Secondary outcomes were their ability to read health related materials, care burden, and satisfaction. Among family caregivers (n = 100), total score of FCMAHS-TR was significantly reduced after receiving theory based pharmaceutical care service (median [IQR]23.0 [17.0-27.0] vs 17.0 [10.3-20.0]; p < 0.001). The proportion of family caregivers with high ability to read health related materials was significantly increased (34.0% vs 48.0%; p < 0.05) with non-significant change in the proportion of family caregiver with high burden (97.0% vs 94.0%; p > 0.05). Younger family caregivers had significantly higher scores on the Turkish version of Patient-Oriented Pharmacy Services Questionnaire (PSPSQ) 2.0 when compared with the older ones (≥ 65 y) (p < 0.05). Family caregivers' medication administration problems werereduced after receiving thetheory based pharmaceutical care service. Long term impact and national implementation of this service should be assessed in the further studies.

Integrative multiomic analysis identifies distinct molecular subtypes of NAFLD in a Chinese population.

Nonalcoholic fatty liver disease (NAFLD) has become a common health care burden worldwide. The high heterogeneity of NAFLD remains elusive and impairs outcomes of clinical diagnosis and pharmacotherapy. Several NAFLD classifications have been proposed on the basis of clinical, genetic, alcoholic, or serum metabolic analyses. Yet, accurately predicting the progression of NAFLD to cirrhosis or hepatocellular carcinoma (HCC) in patients remains a challenge. Here, on the basis of a Chinese cohort of patients, we classified NAFLD into three distinct molecular subtypes (NAFLD-mSI, NAFLD-mSII, and NAFLD-mSIII) using integrative multiomics including whole-genome sequencing (WGS), proteomics, phosphoproteomics, lipidomics, and metabolomics across a broad range of liver, blood, and urine specimens. We found that NAFLD-mSI had higher expression of CYP1A2 and CYP3A4, which alleviate hepatic steatosis through mediating free fatty acid/bile acid-mTOR-FXR/PPARα signaling. NAFLD-mSII displayed an elevated risk of liver cirrhosis along with increased hepatic infiltration of M1 and M2 macrophages because of lipid-triggered hepatic CCL2 and CRP production. NAFLD-mSIII exhibited a potential risk for HCC development by increased transcription of CEBPB- and ERCC3-regulated oncogenes because of activation of the EGF-EGFR/CHKA/PI3K-PDK1-AKT cascade. Next, we validated the existence of these three NAFLD molecular subtypes in an external cohort comprising 92 patients with NAFLD across three different Chinese hospitals. These findings may aid in understanding the molecular features underlying NAFLD heterogeneity, thereby facilitating clinical diagnosis and treatment strategies with the aim of preventing the development of liver cirrhosis and HCC.

Quality of life and mental health status in caregivers of pediatric patients with nephropathic cystinosis.

There are few studies assessing psychological burden and quality of life (QoL) in caregivers of pediatric patients with nephropathic cystinosis, a severe chronic disease. This observational, single-center study aimed to explore the levels of anxiety, depression, care burden, and QoL status in caregivers of patients with nephropathic cystinosis. The Hospital Anxiety and Depression Scale (HADS), the Zarit Caregiver Burden Scale, and the Short Form-36 (SF-36) were administered to caregivers of pediatric patients with nephropathic cystinosis. Nine caregivers of pediatric patients with nephropathic cystinosis participated in the study (6 boys and 3 girls; mean age, 12.6 ± 4.2 years). All participating caregivers were the patient's mothers. Of the 9 caregivers, 6 showed anxiety/depression and 4 severe care burden. Overall, SF-36 QoL domains with a worse perception by caregivers were 'general health' and 'health change over time'. Mothers without depression/anxiety and low care burden had better QoL perception (p = 0.02). All caregivers with high care burden showed anxiety/depression. In our study cohort, caregivers of pediatric patients with nephropathic cystinosis showed high levels of anxiety/depression, high care burden, and impaired QoL, highlighting the importance of detecting psycho-social issues to implement strategies that relieve family stress and improve coping strategies.

Factors affecting negative and positive emotions among spouses caring for patients with psychotic or bipolar disorder.

Spouses experience conflicting emotions when caring for partners with severe mental illnesses. They can have negative emotions while also regarding caregiving as positive and may develop a better marital relationship through the caregiving process. This study investigated factors affecting the negative and positive emotions of husbands and wives acting as caregivers of their spouses with severe mental illnesses. An online nationwide survey of 166 spouses caring for partners diagnosed with schizophrenia, schizoaffective disorder, or bipolar disorder was conducted. Caregivers' negative and positive emotions, personal and role strains in the care burden, sense of coherence, and patients' disabilities in family communication were assessed. We conducted a series of hierarchical multiple regression analyses to evaluate the effects of these factors on the emotions of husbands and wives separately. Among the 166 spouses, 112 (67%) were husbands and 54 (33%) were wives. Husbands were caregivers to 1.4 times as many individuals diagnosed with psychotic disorder as were wives. The negative emotions of husbands were linked to personal strain, whereas those of wives were associated with patient disability in family communication. Sense of coherence was the only factor predicting positive emotions for both sexes. Support for spousal caregivers should be adjusted according to sex. A reduction in husbands' personal strain can alleviate their negative emotions, whereas wives' negative emotions can be relieved by improving communication within their families. Regardless of sex, a higher sense of coherence level has the potential to suppress negative emotions and enhance positive emotions.

When the Bough Breaks: The Financial Burden of Childbirth and Postpartum Care by Insurance Type.

Out-of-pocket (OOP) costs related to childbirth and postpartum care may cause financial hardship, depending on type of insurance and income. We estimated OOP spending on childbirth and postpartum care and financial strain 1 year after birth, comparing Medicaid-insured births with commercially insured births. The Postpartum Assessment of Health Survey followed up with respondents to the Centers for Disease Control and Prevention (CDC) Pregnancy Risk Assessment Monitoring System after a 2020 birth in six states and New York City. The survey included questions on health care costs and financial well-being. Our analytic sample consisted of 4,453 postpartum people, 1,544 with a Medicaid-insured birth and 2,909 with a commercially insured birth. We observe significant financial hardship from childbirth that persists into the postpartum year, with significant differences by insurance and income. We find Medicaid is highly financially protective relative to commercial insurance; 81.4% of Medicaid-insured births were free to the patient, compared with 15.7% of commercially insured births (p < 0.001). Six of ten commercially insured births (59%) cost over $1,000 OOP. Among respondents reporting OOP costs for childbirth, we found that Medicaid enrollees are more likely to have borrowed money from friends or family to pay for childbirth (8% vs. 1%, p < 0.001) and one in five had not made any payments 1 year postpartum (26% vs. 5% of commercially insured births, p < 0.001). Among the commercially insured, those with incomes under 200% of the federal poverty level (FPL) fared worse financially than those above 200% FPL on a number of indicators, including debt in collection (33% vs. 13%, p < 0.001) and financial worry (55% vs. 34%, p < 0.001). The cost of childbirth and postpartum health care results in significant and persistent financial hardship, particularly for families with lower income with commercial insurance. Medicaid offers greater protection for families with low income by offering reduced cost sharing for childbirth and postpartum health care, but even minimal cost sharing in Medicaid causes financial strain.

The Effect of Interventions on Quality of Life, Depression, and the Burden of Care of Stroke Patients and Their Caregivers: A Systematic Review.

BACKGROUND: The impact of stroke is a global concern for health policymakers. A large proportion of survivors require long-term support from family members who are typically unprepared for their caregiving duties. This study determined the effect of different interventions on quality of life (QoL), depression, and the burden of care of stroke patients and their caregivers. METHODS: A systematic review was conducted from 2000 up to May 2023. Study inclusion criteria were as follows: individuals serving as informal caregivers for stroke survivors 18 years and older, devoting a significant portion of their time to the care of such survivors; involvement in psychoeducational, informational, supportive, psychosocial, or combined interventions; exposure to standard or conventional care practices; evaluation of outcomes relating to the QoL for stroke caregivers, depression, caregiver burden, and levels of stroke survivors; and consideration of randomized controlled trials and quasi-experimental studies. RESULTS: Thirty-seven studies met the inclusion criteria and were synthesized in this systematic review. Details of intervention were divided into 3 groups: educational and psychoeducational programs, multidisciplinary approaches, and support and caregiver skill-building programs; 12 studies focused on different interventions affecting the QoL, 23 studies focused on the burden of stroke caregivers, and 20 studies focused on depression of stroke patients and their caregivers. CONCLUSION: The desired effectiveness of particular interventions was evident in the results, although conflicting findings have emerged. The study emphasizes the need for well-structured preliminary studies for each intervention type. More studies on interventions and outcomes might lead secondary researchers to conduct analyses to ensure the certainty of results.

Efficacy of Stand-Alone Anterior Lumbar Interbody Fusion With PEEK Cages, BMP-2, and Allografts for Treating Discogenic Low Back Pain: Assessing Clinical and Radiographic Outcomes.

Chronic low back pain secondary to degenerative disc disease is a significant public health issue worldwide, contributing to substantial health care burdens and patient disability. Anterior lumbar interbody fusion (ALIF) has emerged as a promising surgical solution, offering benefits such as disc height restoration, reduced neural compression, and improved spinal alignment. This study evaluates the efficacy of stand-alone ALIF using polyetheretherketone (PEEK) cages, structural femoral head allografts, and recombinant human bone morphogenetic protein-2 (rhBMP-2) in treating discogenic low back pain caused by degenerative disc disease. This prospective case series study included 1335 patients who underwent stand-alone ALIF by a single surgeon. The surgical construct involved PEEK cages with structural femoral allograft dowels and rhBMP-2, supplemented by anterior fixation. Patient-reported outcome measures, including the visual analog scale for back and leg pain, the Oswestry Disability Index, the Roland-Morris Disability Questionnaire, and patient satisfaction, were monitored over 12 months. The overall fusion rate was 99.6%, with pseudoarthrosis occurring in 0.2% of patients. Lower fusion rates were observed in patients older than 65 years and those using the Brantigan cage. Significant improvements were seen in visual analog scale for back and leg pain, Oswestry Disability Index, and Roland-Morris Disability Questionnaire scores from baseline, with most scores exceeding the substantial clinical benefit thresholds. More than 85% of patients reported "Excellent" or "Good" outcomes. Stand-alone ALIF, augmented with rhBMP-2 and structural femoral head allografts, can enhance mechanical stability, fusion rates, and radiographic assessment. This integrated approach achieves successful spinal fusion and positive clinical outcomes for patients with refractory discogenic low back pain. Stand-alone ALIF with PEEK cages, structural femoral head allografts, and rhBMP-2 demonstrates high fusion rates and significant clinical improvements in patients with discogenic low back pain. This approach enhances spinal stability and promotes biological healing, making it a reliable and effective surgical option.

The Morality of Care: Female Family Caregivers' Motivations for Providing Care to Older Migrants.

Finding suitable long-term care arrangements for older migrants in Europe, including Norway, has been a major concern for healthcare policymakers in the last decade. However, many older people with migrant backgrounds, and to a certain extent their descendants, often prefer that care arrangements are managed within the family. Although caring for family members may be personally satisfying, it can also be a source of distress. This study explores the motivations of care among female family caregivers of older Pakistani migrants within the Norwegian Ahmadiyya community. Our data are derived from a qualitative study including individual and group interviews with 19 female family caregivers. The study participants were aged 25-62 and resided in Norway. The interviews were conducted in Urdu and English and later transcribed verbatim in English. Our findings resulted in four main themes regarding motivations for caregiving: (1) "Who else, if not the family?": care perceived as a family obligation; (2) The divine duty of caregiving; (3) Women are better at caregiving; and (4) "What will people say?": fear of judgments. The intersection of culture, religion, gender, and migration shaped caregiving as a moral practice, and those providing care were considered individuals with high moral identity. The moral identity assigned to the role of family caregivers appears to exacerbate rather than alleviate the care burden on women of migrant origin. Understanding the motivations for caregiving can shed light on ways in which better support can be provided to ethnic minority families with aging members.

The Evolution in Dementia Caregiving Research: NIA's Catalyst Role.

This article celebrates the National Institute of Aging (NIA)'s successes over the past fifty years in advancing the science base informing the need for and response to dementia caregiving. In parallel with other public and private efforts, insightful NIA leadership supported by funding initiatives established the field of dementia caregiving research. In support of the health and well-being of family caregivers, NIA was a catalyst of innovation that led to numerous evidence-based caregiving interventions informed by basic research on care tasks and consequences. As evidence of the impending burden of dementia care on US families mounted, NIA-funded multidisciplinary collaboratives of researchers generated comprehensive models of family caregiving across diverse populations. Today, the dementia caregiving evidence base is shaping public policy and making possible dementia caregiving support services in health systems and community-based organizations. NIA continues to support the scientific study of dementia caregiving with a collaboratory of leading scientists and by making available state-of-the-art datasets and encouraging standardized research methodologies. NIA's leadership in the field of dementia caregiving research has never been more significant as the number of persons living with dementia in the US approaches 7 million, and the value of family caregiving is estimated to be $350 billion.