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Comprehensive care integrates individual patient needs and is highly valued for patients with pulmonary fibrosis (PF). The importance of a patient-centered care approach is rooted in the unpredictable progressiveness of the disease course in PF. The respiratory impairment associated with PF has a major impact on the quality of life for both patients and their caregivers. We believe that prioritizing patient preferences could improve the shared decision making process and may ultimately lead to better health outcomes. Despite the growing emphasis for this approach, it remains challenging to adopt it in clinical practice. In this review, we propose the comprehensive Triple A Care Model, consisting of the domains Access, Anticipate, and Act, which emphasizes core elements of patient-centered care for patients with PF. We will provide an overview of the unmet needs in care for patients with PF and elaborate on the current methods for delivering patient-centered care. The latest insights into symptom management and supportive measures and several approaches to improving access to care are discussed, in line with the most recent guidelines.
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Acessibilidade aos Serviços de Saúde , Assistência Centrada no Paciente , Fibrose Pulmonar , Humanos , Fibrose Pulmonar/terapia , Fibrose Pulmonar/diagnóstico , Acessibilidade aos Serviços de Saúde/tendências , Qualidade de Vida , Preferência do PacienteRESUMO
AIMS: To explore the care experiences of informal carers of people with chronic conditions in hospitals and identify areas for improvement in the context of comprehensive care delivery. DESIGN: A explanatory sequential mixed-method study. METHODS: This study was conducted, involving a survey with 182 carers and interviews with 31 carers of individuals who attended an Australian hospital. Descriptive analysis of quantitative data was performed using RStudio, while thematic analysis of qualitative data was conducted using NVivo. RESULTS: The findings revealed seven overarching components of care that influenced carers' hospital experiences and their perceptions of care quality. Areas requiring improvement were identified within these categories. CONCLUSION: This review identifies common perspectives of informal carers of people with chronic conditions in hospital settings and highlights important areas that require attention to improve carers' hospital care experiences. Carers should be welcomed, involved, informed and supported during hospital attendance to foster the most positive care experiences. IMPLICATIONS: Healthcare professionals should involve carers in assessment, shared decision-making and the care process and recognise and address carers' needs. IMPACT: The findings revealed the carer's hospital experiences in the context of comprehensive care delivery and identified areas requiring improvement. REPORTING METHOD: The CROSS and the COREQ guidelines were followed. PATIENT OR PUBLIC CONTRIBUTION: The study protocol was presented to stakeholders from two hospitals in Australia, a Patient and Carer Advisory Board (attached to the parent project: evaluating Quality of Care (eQC)) and the Australian Commission on Safety and Quality in Health Care, and discussions were held to assess the relevance and significance of this study to clinical practice and health policy.
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Background & objectives Sickle cell disease (SCD) is a common genetic disorder, predominantly found in the tribal population of India. The examples of models providing comprehensive care and management to individuals with SCD in public health facilities are sparse. The Sickle Cell Anaemia Control Mission is one such model implemented by Jan Swasthya Sahyog, a non-profit organization in collaboration with the National Health Mission in the Anuppur district of Madhya Pradesh. This article aimed to identify the key learnings from this programme that can guide the public health system strengthening with respect to SCD. Methods The Sickle Cell Anemia Control Mission Programme included door to door screening for anaemia, SCD and blood group. SCD cases were included in the programme and other individuals with Anemia were referred for further care. Care for individuals with SCD included counselling, provision of hydroxyurea, regular follow up of clinical parameters and management of complications. Care for individuals with SCD was provided through monthly patient support group (PSG) meetings and regular outpatient /in-patient care at public health facilities. Quantitative data on programme design, screening and patient management collected during programme implementation were used for analysis. Results A total of 39421 persons were screened in 18 months (August 2018-March 2020). Of these 81.9 per cent persons were anaemic, 16.9 per cent had sickle cell trait and 779 (1.98%) had SCD. Eighty-six already diagnosed individuals joined the programme for care. People from all caste categories were diagnosed with SCD. Out of 865 individuals with SCD, 157 underwent regular 9-11 months follow up and showed improvement in clinical symptoms and drug compliance. Interpretation & conclusions Central India has a significant burden of anaemia and SCD. This study found that SCD is present in non-tribals as well. PSGs are an efficient way to deliver non-emergency care for chronic diseases such as SCD.
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Anemia Falciforme , Assistência Integral à Saúde , Anemia Falciforme/epidemiologia , Anemia Falciforme/complicações , Anemia Falciforme/terapia , Humanos , Índia/epidemiologia , Feminino , Masculino , Hidroxiureia/uso terapêutico , Adulto , Programas de RastreamentoRESUMO
Background: While the comprehensive care for joint replacement (CJR) bundled payment program for total joint replacement (TJR) emphasizes value, concerns persist regarding unintended consequences, primarily hospital selection of healthier, younger patients. Purpose: We sought to assess changes in patient characteristics and outcomes after CJR implementation in New York State. Methods: This retrospective cohort study included primary total hip and total knee arthroplasties from the New York Statewide Planning and Research Cooperative System (SPARCS) database. Procedures performed before (July 2014 to March 2016; n = 58,610) and after (April 2016 to December 2017; n = 78,728) CJR implementation were compared. Primary outcomes were patient characteristics: Deyo-Comorbidity Index and age. Secondary outcomes were increased hospitalization cost, discharge to institutional post-acute care, and prolonged length of stay. A difference-in-differences analysis estimated changes after CJR implementation, comparing CJR to non-CJR hospitals. Results: We found that CJR implementation (in 49 of 144 New York State hospitals) coincided with slightly older and more comorbid TJR recipients. The CJR program coincided with significantly reduced hospitalization cost and discharge to institutional post-acute care but not length of stay. Some CJR effects appear to have affected non-Medicare patients, as well. Conclusion: This retrospective analysis suggests that in New York State, the CJR bundled payment program did not result in hospitals selecting younger and healthier TJR recipients and coincided with decreased costs and fewer discharges to institutional postacute care.
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Type 2 diabetes mellitus (T2DM) is a prevalent chronic metabolic disorder characterized by insulin resistance and progressive beta cell dysfunction, presenting substantial global health and economic challenges. This review explores recent advancements in diabetes management, emphasizing novel pharmacological therapies and their physiological mechanisms. We highlight the transformative impact of Sodium-Glucose Cotransporter 2 inhibitor (SGLT2i) and Glucagon-Like Peptide 1 Receptor Agonist (GLP-1RA), which target specific physiological pathways to enhance glucose regulation and metabolic health. A key focus of this review is tirzepatide, a dual agonist of the glucose-dependent insulinotropic polypeptide (GIP) and GLP-1 receptors. Tirzepatide illustrates how integrating innovative mechanisms with established physiological pathways can significantly improve glycemic control and support weight management. Additionally, we explore emerging treatments such as glimins and glucokinase activators (GKAs), which offer novel strategies for enhancing insulin secretion and reducing glucose production. We also address future perspectives in diabetes management, including the potential of retatrutide as a triple receptor agonist and evolving guidelines advocating for a comprehensive, multifactorial approach to care. This approach integrates pharmacological advancements with essential lifestyle modifications-such as dietary changes, physical activity, and smoking cessation-to optimize patient outcomes. By focusing on the physiological mechanisms of these new therapies, this review underscores their role in enhancing T2DM management and highlights the importance of personalized care plans to address the complexities of the disease. This holistic perspective aims to improve patient quality of life and long-term health outcomes.
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BACKGROUND: Comprehensive care is important for ensuring patients receive coordinated delivery of healthcare that aligns with their needs and preferences. While comprehensive care programs are recognised as beneficial, optimal implementation strategies in the real world remain unclear. This study utilises existing implementation theory to investigate barriers and enablers to implementing the Australian National Safety and Quality Health Service Standard 5 - Comprehensive Care Standard in acute care hospitals. The aim is to develop implementation enhancement strategies for work with comprehensive care standards in acute care. METHODS: Free text data from 256 survey participants, who were care professionals working in acute care hospitals across Australia, were coded using the Consolidated Framework for Implementation Research (CFIR) using deductive content analysis. Codes were then converted to barrier and enabler statements and themes using inductive theme analysis approach. Subsequently, CFIR barriers and enablers were mapped to the Expert Recommendations for Implementing Change (ERIC) using the CFIR-ERIC Matching Tool, facilitating the development of implementation enhancement strategies. RESULTS: Twelve (n = 12) CFIR barriers and 10 enablers were identified, with 14 barrier statements condensed into 12 themes and 11 enabler statements streamlined into 10 themes. Common themes of barriers include impact of COVID-19 pandemic; heavy workload; staff shortage, lack of skilled staff and high staff turnover; poorly integrated documentation system; staff lacking availability, capability, and motivation; lack of resources; lack of education and training; culture of nursing dependency; competing priorities; absence of tailored straties; insufficient planning and adjustment; and lack of multidisciplinary collaboration. Common themes of enablers include leadership from CCS committees and working groups; integrated documentation systems; established communication channels; access to education, training and information; available resources; culture of patient-centeredness; consumer representation on committees and working groups; engaging consumers in implementation and in care planning and delivery; implementing changes incrementally with a well-defined plan; and regularly collecting and discussing feedback. Following the mapping of CFIR enablers and barriers to the ERIC tool, 15 enhancement strategies were identified. CONCLUSION: This study identified barriers, enablers, and recommended strategies associated with implementing a national standard for comprehensive care in Australian acute care hospitals. Understanding and addressing these challenges and strategies is not only crucial for the Australian healthcare landscape but also holds significance for the broader international community that is striving to advance comprehensive care.
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COVID-19 , Assistência Integral à Saúde , Pesquisa Qualitativa , Humanos , Austrália , COVID-19/epidemiologia , Assistência Integral à Saúde/organização & administração , Assistência Integral à Saúde/normas , SARS-CoV-2RESUMO
BACKGROUND: Comprehensive care (CC) is becoming a widely acknowledged standard for modern healthcare as it has the potential to improve health service delivery impacting both patient-centred care and clinical outcomes. In 2019, the Australian Commission on Safety and Quality in Health Care mandated the implementation of the Comprehensive Care Standard (CCS). However, little is known about the implementation and impacts of the CCS in acute care hospitals. Our study aimed to explore care professionals' self-reported knowledge, experiences, and perceptions about the implementation and impacts of the CCS in Australian acute care hospitals. METHODS: An online survey using a cross-sectional design that included Australian doctors, nurses, and allied health professionals in acute care hospitals was distributed through our research team and organisation, healthcare organisations, and clinical networks using various methods, including websites, newsletters, emails, and social media platforms. The survey items covered self-reported knowledge of the CCS and confidence in performing CC, experiences in consumer involvement and CC plans, and perceptions of organisational support and impacts of CCS on patient care and health outcomes. Quantitative data were analysed using Rstudio, and qualitative data were analysed thematically using Nvivo. RESULTS: 864 responses were received and 649 were deemed valid responses. On average, care professionals self-reported a moderate level of knowledge of the CCS (median = 3/5) and a high level of confidence in performing CC (median = 4/5), but they self-reported receiving only a moderate level of organisational support (median = 3/5). Only 4% (n = 17) of respondents believed that all patients in their unit had CCS-compliant care plans, which was attributed to lack of knowledge, motivation, teamwork, and resources, documentation issues, system and process limitations, and environment-specific challenges. Most participants believed the CCS introduction improved many aspects of patient care and health outcomes, but also raised healthcare costs. CONCLUSION: Care professionals are confident in performing CC but need more organisational support. Further education and training, resources, multidisciplinary collaboration, and systems and processes that support CC are needed to improve the implementation of the CCS. Perceived increased costs may hinder the sustainability of the CCS. Future research is needed to examine the cost-effectiveness of the implementation of the CCS.
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Assistência Integral à Saúde , Humanos , Estudos Transversais , Austrália , Masculino , Feminino , Assistência Integral à Saúde/organização & administração , Inquéritos e Questionários , Adulto , Pessoa de Meia-Idade , Atitude do Pessoal de Saúde , Assistência Centrada no Paciente/normas , Assistência Centrada no Paciente/organização & administraçãoRESUMO
Hemophilia, a genetic bleeding disorder caused by a deficiency in clotting factors, impacts millions of people worldwide. The quality of life (QoL) for those affected remains particularly suboptimal in low- and middle-income countries (LMICs). This article delves into the unmet needs in hemophilia care and management in LMICs, spotlighting various challenges and potential strategies for improvement. One of the primary challenges in LMICs is the limited access to comprehensive care which includes a multidisciplinary approach involving hematologists, physiotherapists, psychologists, and social workers. In many LMICs, the healthcare infrastructure is insufficient to provide such integrated services, leading to fragmented care and poorer health outcomes for individuals with hemophilia. Another significant issue is the challenge of prophylactic treatment. Prophylaxis, which involves regular infusions of clotting factor concentrates to prevent bleeding episodes, is the standard of care in high-income countries. However, in LMICs, prophylactic treatment is often not feasible due to the high cost and limited availability of clotting factor concentrates. This results in a reliance on on-demand treatment, which only addresses bleeding episodes as they occur and does not prevent the long-term complications associated with frequent bleeds. Pain management is another critical area with significant gaps. Chronic pain is a common issue for individuals with hemophilia due to repeated joint bleeds leading to joint damage. In many LMICs, access to effective pain management strategies, including both pharmacological and non-pharmacological treatments, is limited. Mental health support is also a crucial yet often overlooked aspect of hemophilia care. The chronic nature of the condition, combined with frequent hospital visits and the physical limitations imposed by the disease, can lead to mental health issues such as anxiety and depression. However, mental health services are frequently under-resourced in LMICs, and there is a lack of awareness about the mental health needs of individuals with hemophilia. Caregiver support playing a crucial role in managing the day-to-day needs of individuals with hemophilia, is another vital component of hemophilia care that is often insufficient in LMICs. Education and awareness about hemophilia are also lacking in many LMICs. There is often a limited understanding of the condition among the general public and even within the medical community, leading to misdiagnoses and delayed treatment. Employment and financial support are critical issues as well. The physical limitations and frequent medical needs associated with hemophilia can make it difficult for individuals to maintain stable employment, leading to financial strain. In many LMICs, social support systems are inadequate to address these challenges. Lastly, the integration of telehealth and digital health technologies presents a promising strategy to overcome some of these challenges providing remote access to specialist care, education, and support, which is particularly valuable in regions where healthcare resources are scarce. By adopting a multifaceted approach that involves collaboration between governments, healthcare systems, international organizations, and patient advocacy groups, it is possible to address these challenges and significantly improve the QoL for individuals with hemophilia in LMICs.
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This review identifies which elements of home-based comprehensive sexual health care (home-based CSH) impacted which key populations, under which circumstances. A realist review of studies focused on home-based CSH with at least self-sampling or self-testing HIV and additional sexual health care (e.g., treatment, counseling). Peer-reviewed quantitative and qualitative literature from PubMed, Embase, Cochrane Register of Controlled Trials, and PsycINFO published between February 2012 and February 2023 was examined. The PRISM framework was used to systematically assess the reach of key populations, effectiveness of the intervention, and effects on the adoption, implementation, and maintenance within routine sexual health care. Of 730 uniquely identified records, 93 were selected for extraction. Of these studies, 60% reported actual interventions and 40% described the acceptability and feasibility. Studies were mainly based in Europe or North America and were mostly targeted to MSM (59%; 55/93) (R). Overall, self-sampling or self-testing was highly acceptable across key populations. The effectiveness of most studies was (expected) increased HIV testing. Adoption of the home-based CSH was acceptable for care providers if linkage to care was available, even though a minority of studies reported adoption by care providers and implementation fidelity of the intervention. Most studies suggested maintenance of home-based CSH complementary to clinic-based care. Context and mechanisms were identified which may enhance implementation and maintenance of home-based CSH. When providing the individual with a choice of testing, clear instructions, and tailored dissemination successful uptake of STI and HIV testing may increase. For implementers perceived care and treatment benefits for clients may increase their willingness to implement home-based CSH. Therefore, home-based CSH may determine more accessible sexual health care and increased uptake of STI and HIV testing among key populations.
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Infecções por HIV , Serviços de Assistência Domiciliar , Saúde Sexual , Humanos , Infecções por HIV/diagnóstico , Infecções por HIV/prevenção & controle , Autoteste , Assistência Integral à Saúde/organização & administração , Masculino , Feminino , Teste de HIV/métodos , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricosRESUMO
Women with severe mental illness and pregnancy suffer substantial travails in accessing care for mental and perinatal health. Women with psychotic illnesses such as schizophrenia face higher risks of pregnancy and postnatal complications. Similarly, lack of access to holistic psychiatric care presents particular perils for these women and their children. Tailored care for these mothers-to-be and their babies is needed to prevent and ameliorate health complications, mental and physical. This will require targeted funding of services that connect women with and provide continuity of care.
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Complicações na Gravidez , Humanos , Feminino , Gravidez , Complicações na Gravidez/terapia , Transtornos Mentais/terapia , Acessibilidade aos Serviços de Saúde , Esquizofrenia/terapia , Transtornos Psicóticos/terapia , Serviços de Saúde MentalRESUMO
BACKGROUND: Although primary care models for the care of common non-communicable diseases (NCD) have been developed in sub-Saharan Africa, few have described an integrated, decentralized approach at the community level. We report the results of a four-year, Ethiopian project to expand this model of NCD care to 15 primary hospitals and 45 health centres encompassing a wide geographical spread and serving a population of approximately 7.5 million people. METHODS: Following baseline assessment of the 60 sites, 30 master trainers were used to cascade train a total of 621 health workers in the diagnosis, management and health education of the major common NCDs identified in a scoping review (hypertension, diabetes, chronic respiratory disease and epilepsy). Pre- and post-training assessments and regular mentoring visits were carried out to assess progress and remedy supply or equipment and medicines shortages and establish reporting systems. The project was accompanied by a series of community engagement activities to raise awareness and improve health seeking behaviour. RESULTS: A total of 643,296 people were screened for hypertension and diabetes leading to a new diagnosis in 24,313 who were started on treatment. Significant numbers of new cases of respiratory disease (3,986) and epilepsy (1,925) were also started on treatment. Mortality rates were low except among patients with hypertension in the rural health centres where 311 (10.2%) died during the project. Loss to follow up (LTFU), defined as failure to attend clinic for > 6 months despite reminders, was low in the hospitals but represented a significant problem in the urban and rural health centres with up to 20 to 30% of patients with hypertension or diabetes absenting from treatment by the end of the project. Estimates of the population disease burden enrolled within the project, however, were disappointing; asthma (0.49%), hypertension (1.7%), epilepsy (3.3%) and diabetes (3.4%). CONCLUSION: This project demonstrates the feasibility of scaling up integrated NCD services in a variety of locations, with fairly modest costs and a methodology that is replicable and sustainable. However, the relatively small gain in the detection and treatment of common NCDs highlights the huge challenge in making NCD services available to all.
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Política de Saúde , Doenças não Transmissíveis , Humanos , Doenças não Transmissíveis/terapia , Doenças não Transmissíveis/epidemiologia , Etiópia/epidemiologia , Atenção Primária à Saúde , Recursos em Saúde/provisão & distribuiçãoRESUMO
Aim: The Mental Health Supporter Training Program is a national project conducted in Japan. This study aimed to determine the effects on mental health-related stigma, mental health literacy, and knowledge about mental health difficulties and support techniques among program participants. Methods: The target population was local residents of a wide range of generations in Japan. Outcomes were assessed at baseline (T1), immediately postintervention (T2), and at the 6-month follow-up (T3). A mixed model for repeated-measures conditional growth model analyses were employed to examine the effects of the intervention over time (T1, T2, T3). We also calculated effect sizes using Cohen's d. Results: The program had a significantly favorable pooled effect on the Japanese version of the Reported and Intended Behaviour Scale score after adjusting for covariates (reported behavior [t = 3.20, p = 0.001]; intended behavior [t = 8.04, p < 0.001]). However, when compared at each time point, only intended behavior from T1 to T2 showed a significant difference (t = 8.37, p < 0.001). Significant pooled effects were found for mental health literacy (knowledge: t = 19.85, p < 0.001; attitude: t = 15.02, p < 0.001), knowledge of mental health (t = 28.04, p < 0.001), and psychological distress (t = -2.41, p = 0.016). Conclusion: The results suggest that the program might be effective for improving intended, but not reported, behavior in the short term and for improving mental health literacy, knowledge of mental health, and psychological distress.
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BACKGROUND: People living with human immunodeficiency virus (HIV) are living longer with health-related disability associated with ageing, including complex conditions. However, health systems in Canada have not adapted to meet these comprehensive care needs. METHODS: We convened three citizen panels and a national stakeholder dialogue. The panels were informed by a plain-language citizen brief that outlined data and evidence about the challenge/problem, elements of an approach for addressing it and implementation considerations. The national dialogue was informed by a more detailed version of the same brief that included a thematic analysis of the findings from the panels. RESULTS: The 31 citizen panel participants emphasized the need for more prevention, testing and social supports, increased public education to address stigma and access to more timely data to inform system changes. The 21 system leaders emphasized the need to enhance person-centred care and for implementing learning and improvement across provinces, territories and Indigenous communities. Citizens and system leaders highlighted that policy actions need to acknowledge that HIV remains unique among conditions faced by Canadians. CONCLUSIONS: Action will require a national learning collaborative to support spread and scale of successful prevention, care and support initiatives. Such a collaborative should be grounded in a rapid-learning and improvement approach that is anchored on the needs, perspectives and aspirations of people living with HIV; driven by timely data and evidence; supported by appropriate decision supports and aligned governance, financial and delivery arrangements; and enabled with a culture of and competencies for rapid learning and improvement.
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Assistência Integral à Saúde , Infecções por HIV , Estigma Social , Participação dos Interessados , Humanos , Infecções por HIV/terapia , Canadá , Assistência Integral à Saúde/organização & administração , Atenção à Saúde , Apoio Social , Política de Saúde , Necessidades e Demandas de Serviços de Saúde , Feminino , Assistência Centrada no Paciente , Masculino , Participação da Comunidade , Acessibilidade aos Serviços de SaúdeRESUMO
Older adult patients account for 70% of all hospitalized patients in Japan, and intermediate care based on patient-centered care (PCC) that ensures continuity and quality of care at the interface between home services and acute care services and restores patient's independence and confidence is necessary for them to continue living independently. At present, no concept of intermediate care is established in Japan, and the implementation of PCC has been delayed. Thus, in this study, a Japanese version of the intermediate care evaluation index (patient-reported experience measure (PREM)) was created on the basis of the original PREM developed in the UK, and data in wards with intermediate care functions in Japan were collected to confirm internal consistency and validity from 2020 to 2022. The Japanese version of PREM was found to have a factor structure with two potential factors. Given the clear correlation with the shared decision-making evaluation index, which is the pinnacle of PCC, the theoretical validity of the Japanese version of PREM, which is based on PCC as a theoretical basis, was confirmed.
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OBJECTIVE: This paper aims to provide an evidence-based summary of the most effective strategies for comprehensive healthcare of chemotherapy-induced peripheral neuropathy (CIPN) in cancer patients. METHOD: Following the "6S" model, relevant evidence on CIPN management was collected from reputable evidence-based resource websites and databases nationally and internationally. The included articles were evaluated for methodological quality, and evidence was extracted using the Australian JBI Evidence-based Health Care Center's literature evaluation standard (2016 edition). RESULTS: A total of 60 articles were included in this study, comprising 2 guidelines, 5 expert consensus statements, and 53 systematic reviews. The findings of these articles were summarized across 7 dimensions, including risk factor screening, assessment, diagnosis, prevention, treatment, management, and health education, resulting in the identification of 42 relevant pieces of evidence. CONCLUSIONS: This study provides a comprehensive synthesis of evidence-based recommendations for managing CIPN in cancer patients, offering guidance for healthcare professionals engaged in clinical practice. However, when implementing these recommendations, it is crucial to consider the individual patient's clinical circumstances, preferences, and expert judgment, ensuring feasibility and applicability in real-world clinical settings.
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Antineoplásicos , Neoplasias , Doenças do Sistema Nervoso Periférico , Humanos , Austrália , Assistência Integral à Saúde , Doenças do Sistema Nervoso Periférico/induzido quimicamente , Doenças do Sistema Nervoso Periférico/terapia , Neoplasias/tratamento farmacológico , Antineoplásicos/efeitos adversosRESUMO
BACKGROUND: The Ehlers-Danlos Syndromes (EDS) are a group of connective tissue disorders that are hereditary in nature and characterized by joint hypermobility and tissue fragility. The complex nature of this unique patient population requires multidisciplinary care, but appropriate centers for such care do not exist in large portions of the country. Need for more integrated services has been identified in Chicagoland, or Chicago and its suburbs. In order to explore and begin to address barriers to seeking appropriate care facing EDS patients in this region, we developed an online survey which we circulated through EDS social media groups for Chicagoland patients. RESULTS: Three hundred and nine unique respondents participated. We found that there exists a strong medical need for and interest in the development of a center in the region, and participants reported that, if made available to them, they would make extensive and regular use of such a facility. CONCLUSIONS: We conclude that the establishment of a collaborative medical center specializing in the diagnosis and treatment of EDS, Hypermobility Spectrum Disorder, and related disorders in the Chicagoland area would greatly benefit patients by providing comprehensive care, alleviate the burden on overworked healthcare providers, and contribute to the sustainability of medical facilities.
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Doenças do Tecido Conjuntivo , Síndrome de Ehlers-Danlos , Instabilidade Articular , Humanos , Síndrome de Ehlers-Danlos/diagnóstico , Instabilidade Articular/diagnóstico , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Lung cancer diagnosis affects an individual's quality of life as well as physical and emotional functioning. Information on survivorship care tends to be introduced at the end of treatment, but early intervention may affect posttreatment adjustment. However, to the best of our knowledge, no study has explored the effect of early information intervention on the return to work, family, and societal roles of lung cancer survivors. OBJECTIVE: We report the study protocol of a comprehensive care prehabilitation intervention designed to facilitate lung cancer survivors' psychological adjustment after treatment. METHODS: A comprehensive care program was developed based on a literature review and a qualitative study of patients with lung cancer and health professionals. The Lung Cancer Comprehensive Care Program consists of educational videos and follow-up visits by a family medicine physician. To prevent contamination, the control group received routine education, whereas the intervention group received routine care and intervention. Both groups completed questionnaires before surgery (T0) and at 1-month (T1), 6-month (T2), and 1-year (T3) follow-up visits after surgery. The primary outcome was survivors' psychological adjustment to cancer 6 months after pulmonary resection. RESULTS: The historical control group (n=441) was recruited from September 8, 2021, to April 20, 2022, and the intervention group (n=350) was recruited from April 22, 2022, to October 17, 2022. All statistical analyses will be performed upon completion of the study. CONCLUSIONS: This study examined the effectiveness of an intervention that provided general and tailored informational support to lung cancer survivors, ranging from before to the end of treatment. TRIAL REGISTRATION: ClinicalTrials.gov NCT05078918; https://clinicaltrials.gov/ct2/show/NCT05078918. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/54707.
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Background: Although the postpartum period is an opportunity to address long-term health, fragmented care systems, inadequate attention to social needs, and a lack of structured transition to primary care threaten patient wellbeing, particularly for low-income individuals. Postpartum patient navigation is an emerging innovation to address these disparities. Methods: This mixed-methods analysis uses data from the first year of an ongoing randomized controlled trial to understand the needs of low-income postpartum individuals through 1 year of patient navigation. We designed standardized logs for navigators to record their services, tracking mode, content, intensity, and target of interactions. Navigators also completed semistructured interviews every 3 months regarding relationships with patients and care teams, care system gaps, and navigation process. Log data were categorized, quantified, and mapped temporally through 1 year postpartum. Qualitative data were analyzed using the constant comparative method. Results: Log data from 50 participants who received navigation revealed the most frequent needs related to health care access (45.4%), health and wellness (18.2%), patient-navigator relationship building (14.8%), parenting (13.6%), and social determinants of health (8.0%). Navigation activities included supporting physical and mental recovery, accomplishing health goals, connecting patients to primary and specialty care, preparing for health system utilization beyond navigation, and referring individuals to community resources. Participant needs fluctuated, yielding a dynamic timeline of the first postpartum year. Conclusion: Postpartum needs evolved throughout the year, requiring support from various teams. Navigation beyond the typical postpartum care window may be useful in mitigating health system barriers, and tracking patient needs may be useful in optimizing postpartum care. Clinical Trial Registration: Registered April 19, 2019, enrollment beginning January 21, 2020, NCT03922334, https://clinicaltrials.gov/ct2/show/NCT03922334.
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Acessibilidade aos Serviços de Saúde , Navegação de Pacientes , Período Pós-Parto , Pobreza , Humanos , Feminino , Adulto , Gravidez , Cuidado Pós-Natal , Pesquisa QualitativaRESUMO
PURPOSE: There is little information on the supportive care offered to breast cancer patients. We investigated the association between the marginalization index and selected services offered by health professionals. METHODS: We used data from a cross-sectional parent study performed in Mexico from 2007 to 2009. We analyzed data from 832 women between 35 and 69 years of age with a histopathological diagnosis of breast cancer. This study was performed in hospitals in 5 states. We used frequencies, measures of central tendency, and logistic regression. We used the svy package of STATA statistical software v17. RESULTS: Overall, 15.6% of the study population reported that health professionals offered them selected services. The offer of two or more selected services was greater among women living in states with a very high marginalization index (21.8%) than among those living in states with a very low marginalization index (13.8%). Among women living in states with high marginalization, the odds of receiving a selected service offer were 2.03 times higher than those living in states with low marginalization (Odds ratio (OR) = 2.03, 95% CI 1.08-3.83). For women in the highest tertile of the asset index, the odds of receiving a selected service offer were 2.7 times greater than the odds for women in the lowest tertile (OR = 2.66, 95% CI 1.03-6.88). CONCLUSION: The prevalence of comprehensive care offered to breast cancer patients is low in Mexico and varies according to the marginalization index and the asset index.