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1.
AIDS Behav ; 2024 Jul 04.
Artículo en Inglés | MEDLINE | ID: mdl-38963569

RESUMEN

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.

2.
Support Care Cancer ; 32(4): 264, 2024 Apr 02.
Artículo en Inglés | MEDLINE | ID: mdl-38564034

RESUMEN

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.


Asunto(s)
Antineoplásicos , Neoplasias , Enfermedades del Sistema Nervioso Periférico , Humanos , Australia , Atención Integral de Salud , Enfermedades del Sistema Nervioso Periférico/inducido químicamente , Enfermedades del Sistema Nervioso Periférico/terapia , Neoplasias/tratamiento farmacológico , Antineoplásicos/efectos adversos
3.
BMC Health Serv Res ; 24(1): 800, 2024 Jul 11.
Artículo en Inglés | MEDLINE | ID: mdl-38992627

RESUMEN

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.


Asunto(s)
Atención Integral de Salud , Humanos , Estudios Transversales , Australia , Masculino , Femenino , Atención Integral de Salud/organización & administración , Encuestas y Cuestionarios , Adulto , Persona de Mediana Edad , Actitud del Personal de Salud , Atención Dirigida al Paciente/normas , Atención Dirigida al Paciente/organización & administración
4.
Matern Child Health J ; 28(3): 409-425, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-38189846

RESUMEN

OBJECTIVES: To describe how the UNC Horizons program, a comprehensive women-centered program for pregnant and parenting women with substance use disorders, and its patient population have changed over time and summarize basic neonatal outcomes for infants born to women in treatment at Horizons. METHODS: Yearly Annual Reports from fiscal years of 1994 to 2017 were abstracted. Patient characteristics and infant outcomes compared to normative North Carolina data were examined. RESULTS: Highlights of findings include: The percentage of women for whom opioids were the primary substance of use increased from 0% in 1995-1996 to 62% in 2016-17, while cocaine decreased from 66 to 12%. Intravenous substance use history increased from 7% in 1994-1995 to 41% in 2016-2017. The number of women reporting a history of incarceration rose from 10-20% in the early years to 40%-50% beginning in 2007-2008. The proportion of women reporting a desire to hurt themselves rose from 20% in 2004-2005 to 40% in 2016-2017. Self-reported suicide attempt history remained consistent at 32% across years. While reporting of childhood physical abuse remained at 38% across years, reporting of sexual abuse and domestic violence trended upward. Horizons did not differ from North Carolina in the likelihood of patients giving birth prematurely [χ2(13) = 20.6,p = .082], or the likelihood of a patient giving birth to a low birthweight infant [χ2(13) = 14.7,p = .333]. CONCLUSIONS FOR PRACTICE: Breaking the cycle of addiction for women and children must focus on helping women with substance use problems develop a sense of hope that their lives can improve, and a sense of feeling safe and nurtured.


Systematic examinations of programs that provide treatment services to pregnant and parenting women with substance use disorders have typically been focused on a limited set of outcomes and have been cross-sectional in nature. The current paper presents a detailed examination of the patient populations over a 23-year period, with particular attention to the changes over time in the women served. The birth weight and prematurity of infants born to the women in this program were likewise examined over time, and in comparison to state-level data.


Asunto(s)
Violencia Doméstica , Trastornos Relacionados con Sustancias , Recién Nacido , Lactante , Niño , Embarazo , Humanos , Femenino , Responsabilidad Parental , Trastornos Relacionados con Sustancias/epidemiología , Recién Nacido de Bajo Peso , Analgésicos Opioides
5.
Health Res Policy Syst ; 22(1): 62, 2024 May 27.
Artículo en Inglés | MEDLINE | ID: mdl-38802942

RESUMEN

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.


Asunto(s)
Atención Integral de Salud , Infecciones por VIH , Estigma Social , Participación de los Interesados , Humanos , Infecciones por VIH/terapia , Canadá , Atención Integral de Salud/organización & administración , Atención a la Salud , Apoyo Social , Política de Salud , Necesidades y Demandas de Servicios de Salud , Femenino , Atención Dirigida al Paciente , Masculino , Participación de la Comunidad , Accesibilidad a los Servicios de Salud
6.
Value Health ; 26(9): 1363-1371, 2023 09.
Artículo en Inglés | MEDLINE | ID: mdl-37236394

RESUMEN

OBJECTIVES: The viability of specialty condition-based care via integrated practice units (IPUs) requires a comprehensive understanding of total costs of care. Our primary objective was to introduce a model to evaluate costs and potential costs savings using time-driven activity-based costing comparing IPU-based nonoperative management with traditional nonoperative management and IPU-based operative management with traditional operative management for hip and knee osteoarthritis (OA). Secondarily, we assess drivers of incremental cost differences between IPU-based care and traditional care. Finally, we model potential cost savings through diverting patients from traditional operative management to IPU-based nonoperative management. METHODS: We developed a model to evaluate costs using time-driven activity-based costing for hip and knee OA care pathways within a musculoskeletal IPU compared with traditional care. We identified differences in costs and drivers of cost differences and developed a model to demonstrate potential cost savings through diverting patients from operative intervention. RESULTS: Weighted average costs of IPU-based nonoperative management were lower than traditional nonoperative management and lower in IPU-based operative management than traditional operative management. Key drivers of incremental cost savings included care led by surgeons in partnership with associate providers, modified physical therapy programs with self-management, and judicious use of intra-articular injections. Substantial savings were modeled by diverting patients toward IPU-based nonoperative management. CONCLUSIONS: Costing models involving musculoskeletal IPUs demonstrate favorable costs and cost savings compared with traditional management of hip or knee OA. More effective team-based care and utilization of evidence-based nonoperative strategies can drive the financial viability of these innovative care models.


Asunto(s)
Osteoartritis de la Cadera , Osteoartritis de la Rodilla , Humanos , Osteoartritis de la Rodilla/terapia , Osteoartritis de la Cadera/terapia , Ahorro de Costo , Análisis Costo-Beneficio
7.
Pediatr Blood Cancer ; 70(1): e29961, 2023 01.
Artículo en Inglés | MEDLINE | ID: mdl-36094289

RESUMEN

Sickle cell disease (SCD) requires coordinated, specialized medical care for optimal outcomes. There are no United States (US) guidelines that define a pediatric comprehensive SCD program. We report a modified Delphi consensus-seeking process to determine essential, optimal, and suggested elements of a comprehensive pediatric SCD center. Nineteen pediatric SCD specialists participated from the US. Consensus was predefined as 2/3 agreement on each element's categorization. Twenty-six elements were considered essential (required for guideline-based SCD care), 10 were optimal (recommended but not required), and five were suggested. This work lays the foundation for a formal recognition process of pediatric comprehensive SCD centers.


Asunto(s)
Anemia de Células Falciformes , Niño , Humanos , Consenso , Anemia de Células Falciformes/terapia
8.
BMC Palliat Care ; 22(1): 61, 2023 May 23.
Artículo en Inglés | MEDLINE | ID: mdl-37217912

RESUMEN

BACKGROUND: Cancer remains an escalating and challenging public health issue. The management, especially palliative care (PC), is disintegrated and out of reach of in need patients. The overall aim of the project is to develop a feasible and scalable Comprehensive Coordinated Community based PC model for Cancer Patients (C3PaC); congruent with socio-cultural, context and unmet needs in north India. METHODS: A mixed method approach will be used for three-phased pre- and post-intervention study in one of the districts of North India, having a high incidence of cancer. During phase I, validated tools will be used for quantitative assessment of palliative needs among cancer patients and their caregivers. Barriers and challenges for provision of palliative care will be explored using in-depth interviews and focus group discussions among participants and health care workers. The findings of phase I along with inputs from national experts and literature review will provide inputs for the development of the C3PAC model in phase II. During phase III C3PAC model will be deployed over a period of 12 months and its impact assessed. Categorical and continuous variables will be depicted as frequency (percentages) and mean ± SD/median (IQR) respectively. Chi-square test/Fischer test, independent samples Student t-tests and Mann-Whitney U tests will be used for categorical, normally and non-normally distributed continuous variables, respectively. Qualitative data will be analyzed using thematic analysis using Atlas.ti 8 software. DISCUSSION: The proposed model is designed to address the unmet palliative care needs, to empower community-based healthcare providers in comprehensive home-based PC and to improve the quality of life of cancer patients and caregivers. This model will provide pragmatic scalable solutions in comparable health systems particularly in low- and lower-middle Income countries. TRIAL REGISTRATION: The study has been registered with the Clinical Trial Registry-India (CTRI/2023/04/051357).


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida , Neoplasias , Humanos , Cuidadores , Neoplasias/terapia , Cuidados Paliativos/métodos , Calidad de Vida
9.
BMC Med Educ ; 23(1): 785, 2023 Oct 20.
Artículo en Inglés | MEDLINE | ID: mdl-37864172

RESUMEN

BACKGROUND: The definition of Primary Health Care (PHC) issued by the World Health Organisation in 1978 indicated that essential health care should be made accessible to individuals and their communities close to where they live and work. In 1992 Starfield articulated the four pillars of PHC: the patient's first contact with healthcare, comprehensive care, coordinated care and continuous care. Using this literature guidance, this study sought to explore what undergraduate medical students and their clinical preceptors understood by PHC in four South African medical schools. METHODS: A qualitative study using the phenomenological design was conducted among undergraduate medical students and their clinical preceptors. The setting was four medical schools in South Africa (Sefako Makgatho Health Sciences University, Walter Sisulu University and the University of KwaZulu-Natal and the Witwatersrand University). A total of 27 in-depth interviews were conducted among the clinical preceptors and 16 focus group discussions among the students who were in their clinical years of training (MBChB 4-6). Interviews were digitally recorded and transcribed verbatim, followed by thematic data analysis using the MAXQDA 2020 (Analytics Pro) software. RESULTS: Four themes were identified in which there were similarities between the students and their preceptors regarding their understanding of PHC: (1) PHC as the patient's first contact with the healthcare system; (2) comprehensive care; (3) coordination of care and (4) continuity of care. A further two themes were identified in which these two groups were not of similar understanding: (5) PHC as a level or an approach to healthcare and (6) the role of specialist clinical preceptors in PHC. CONCLUSIONS: Medical students and their clinical preceptors displayed an understanding of PHC in line with four pillars articulated by Starfield and the WHO definition of PHC. However, there remains areas of divergence, on which the medical schools should follow the guidance provided by the WHO and Starfield for a holistic understanding of PHC.


Asunto(s)
Estudiantes de Medicina , Humanos , Sudáfrica , Investigación Cualitativa , Grupos Focales , Atención Primaria de Salud
10.
J Arthroplasty ; 38(7 Suppl 2): S54-S62, 2023 07.
Artículo en Inglés | MEDLINE | ID: mdl-36781061

RESUMEN

BACKGROUND: Our institution participated in the Comprehensive Care for Joint Replacement (CJR) model from 2016 to 2020. Here we review lessons learned from a total joint arthroplasty (TJA) care redesign at a tertiary academic center amid changing: (1) CJR rules; (2) inpatient only rules; and (3) outpatient trends. METHODS: Quality, financial, and patient demographic data from the years prior to and during participation in CJR were obtained from institutional and Medicare reconciled CJR performance data. RESULTS: Despite an increase in true outpatients and new challenges that arose from changing inpatient-only rules, there was significant improvement in quality metrics: decreased length of stay (3.48-1.52 days, P < .001), increased home discharge rate (70.2-85.5%, P < .001), decreased readmission rate (17.7%-5.1%, P < .001), decreased complication rate (6.5%-2.0%, P < .001), and the Centers for Medicare and Medicaid Services (CMS) Composite Quality Score increased from 4.4 to 17.6. Over the five year period, CMS saved an estimated $8.3 million on 1,486 CJR cases, $7.5 million on 1,351 non-CJR cases, and $600,000 from the voluntary classification of 371 short-stay inpatients as outpatient-a total savings of $16.4 million. Despite major physician time and effort leading to marked improvements in efficiency, quality, and large cost savings for CMS, CJR participation resulted in a net penalty of $304,456 to our institution, leading to zero physician gainsharing opportunities. CONCLUSION: The benefits of CJR were tempered by malalignment of incentives among payer, hospital, and physician as well as a lack of transparency. Future payment models should be refined based on the successes and challenges of CJR.


Asunto(s)
Artroplastia de Reemplazo de Cadera , Artroplastia de Reemplazo , Paquetes de Atención al Paciente , Anciano , Humanos , Estados Unidos , Medicare , Hospitales , Benchmarking , Atención Integral de Salud
11.
Hemoglobin ; 47(6): 227-236, 2023 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-38189147

RESUMEN

Sickle cell disease (SCD) affects 5% of the global population, with over 300,000 infants born yearly. In India, 73% of those with the sickle hemoglobin gene belong to indigenous tribes in remote regions lacking proper healthcare. Despite the prevalence of SCD, India lacked state-led public health programs until recently, leaving a gap in screening and comprehensive care. Hence, the Indian Council of Medical Research conducted implementation research to address this gap. This paper discusses the development and impact of the program, including screening and treatment coverage for SCD in tribal areas. With a quasi-experimental design, this study was conducted in six tribal-dominated districts in three phases - formative, intervention, and evaluation. The intervention included advocacy, partnership building, building the health system's capacity and community mobilization, and enabling the health systems to screen and manage SCD patients. The capacity building included improving healthcare workers' skills through training and infrastructure development of primary healthcare (PHC) facilities. The impact of the intervention is visible in terms of people's participation (54%, 76% and 93% of the participants participated in some intervention activities, underwent symptomatic screening and demanded the continuity of the program, respectively), and improvement in SCD-related knowledge of the community and health workers (with more than 50% of net change in many of the knowledge-related outcomes). By developing screening and treatment models, this intervention model demonstrated the feasibility of SCD care at the PHC level in remote rural areas. This accessible approach allows the tribal population in India to routinely seek SCD care at their local PHCs, offering great convenience. Nevertheless, additional research employing rigorous methodology is required to fine-tune the model. National SCD program may adopt this model, specifically for community-level screening and management of SCD in remote and rural areas.


Asunto(s)
Anemia de Células Falciformes , Lactante , Humanos , Anemia de Células Falciformes/diagnóstico , Anemia de Células Falciformes/epidemiología , Anemia de Células Falciformes/terapia , India/epidemiología
12.
J Oral Rehabil ; 50(9): 902-913, 2023 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-37247258

RESUMEN

BACKGROUND: Temporomandibular disorders (TMDs) have multiple aetiological factors. Although some evidence suggests invasive and lengthy dental procedures may contribute towards TMD development, there is a relative paucity in the literature regarding an association between elements of paediatric dental general anaesthesia (pDGA) and TMDs. This review aims to consider the impact of dental rehabilitation (and its constituent elements) performed under general anaesthesia on the development of TMDs in childhood and adolescence and identify theories and/or gaps in knowledge which may benefit from future research. METHODS: Due to the need to preliminarily examine the nature and extent of the current evidence base, a scoping review approach was chosen. The review was conducted based on the framework provided by the methodological working group of the Joanna Briggs Institute (JBI) for conducting systematic scoping reviews. Electronic databases MEDLINE, Embase, Scopus, Web of Science and Cochrane Library were searched as well as the grey literature using OpenGrey, Nexis, Ethos, Google Scholar and ProQuest, with eligible studies uploaded onto Zotero (Mac Version 5.0.96.2). RESULTS: A total of 810 records were identified. After removing duplicates and those not available in English, 260 were identified for title and abstract screening. Seventy-six records underwent full-text review of which only one met the broad inclusion criteria. The most common reasons for exclusion were no specific relation to general anaesthesia, not specifically relating to dental treatment and only being concerned with TMD management. The included study found that while development of TMDs following dental rehabilitation under GA did occur in children, whether the problems caused by treatment were exacerbated by other elements of the pDGA process remains unknown. CONCLUSION: This review has confirmed a distinct paucity of research in this field. While there is no current tangible scientific evidence that common and routine dental procedures lead to TMD, the literature shows that alterations to any one or a combination of critical factors can contribute to TMD development, which may be collectively exacerbated by iatrogenic macrotrauma during the pDGA process. We have highlighted elements of pre-, peri- and post-operative pDGA, alongside biopsychosocial factors, which may contribute to TMD development in childhood and adolescence and may benefit from future research.


Asunto(s)
Anestésicos Generales , Trastornos de la Articulación Temporomandibular , Humanos , Niño , Adolescente , Anestesia General/efectos adversos , Anestesia General/métodos , Trastornos de la Articulación Temporomandibular/etiología , Trastornos de la Articulación Temporomandibular/terapia
13.
BMC Nurs ; 22(1): 390, 2023 Oct 18.
Artículo en Inglés | MEDLINE | ID: mdl-37853394

RESUMEN

BACKGROUND: Holistic nursing care is an approach to patient care that takes into account the physical, social, spiritual, and psychological needs of the patient. Providing holistic care has been found to be an effective way to prevent diseases and death, as well as improve the quality of healthcare provided to patients. However, despite its perceived benefits, many nurses lack experience with holistic care and only focus on patients' physical needs, treating them as biological machines while ignoring their spiritual, mental, and social needs. Therefore, this study aimed to assess the practice of holistic nursing care and its associated factors among nurses. METHODS: A hospital-based cross-sectional study was conducted among 422 sampled Nurses working in public hospitals in Wolaita Zone. Systematic random sampling was applied to select the study participants. A self-administered, pretested questionnaire was used to collect the data. The collected data were entered into Epi Data version 4.6 and analyzed using SPSS version 25. Binary and multivariable logistic regression analyses were used to identify factors associated with holistic nursing care practice. Statistical significance was declared at a p-value less than 0.05. The strength of the association was indicated by the AOR and 95% CI. RESULT: The study found that the overall practice of holistic nursing care was 21%. Nurses with a diploma in nursing (AOR: 0.28; 95% CI: 0.11, 0.71), nurses working in a hospital with no continuous in-service learning (AOR: 0.39; 95% CI: 0.20, 0.76), nurses with a poor relationship with patients (AOR: 0.31; 95% CI: 0.16, 0.58), and nurses with poor knowledge of holistic nursing care practice (AOR: 0.41; 95% CI: 0.21, 0.7) were factors associated with a lower likelihood of practicing holistic nursing care. CONCLUSION: This study found that the practice of holistic nursing care among nurses working in public hospitals in the Wolaita Zone was low. Level of education, the unit of work, continuous in-service learning, the nurse-patient relationship, and the knowledge of nurses were factors associated with holistic nursing care. The provision of in-service training and the creation of trusting, positive relationships were suggested to improve the practice of holistic nursing care.

14.
Haemophilia ; 28(2): 254-263, 2022 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-35133695

RESUMEN

INTRODUCTION: Haemophilia management and patients' quality of life significantly improved. However, data on current patients', caregivers' and clinicians' satisfaction and limitations of treatments and haemophilia management are limited. AIM: Assessing the management satisfaction and unmet needs from the perspective of Italian patients with haemophilia (PWH) without inhibitors (or caregivers if children) and of specialist physicians. METHODS: Surveys (for patients≥18 years, caregivers of children and haemophilia specialists) were developed by a multidisciplinary working group and conducted from November 2019 to June 2020. RESULTS: Among 275 participants, 120 (43.6%) were PWH without inhibitors, 79 (28.7%) caregivers and 37 (13.4%) clinicians. Patients and caregivers perceived a higher control of the disease compared to clinicians. However, more than 40% of patients and caregivers reported to feel significantly conditioned by the risk of bleeding during their daily life. PWH reported a 6-month mean/median (range) of bleeds 2.3/.0 (0-24) and caregivers 1.3/.0 (0-16) in children. The treatment burden (frequency of administration) was not satisfactory for more than half adults and caregivers of children treated with prophylaxis. A good access to treatment, haemophilia centres and medical service was reported, with issues associated to the multidisciplinary approach and treatment at emergency department. CONCLUSIONS: This large national study provides an updated overview of haemophilia care in Italy from different points of views, highlighting positive aspects and unmet needs. This information can guide future interventions to improve haemophilia management and the assessment of impact of new treatment options.


Asunto(s)
Hemofilia A , Adulto , Cuidadores , Niño , Hemofilia A/tratamiento farmacológico , Humanos , Italia , Calidad de Vida , Encuestas y Cuestionarios
15.
J Formos Med Assoc ; 121(3): 582-591, 2022 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-34362614

RESUMEN

Haemophilia care in Taiwan has come a long way over the past 35 years, from the absence of specialised haemophilia treatment centres before 1984 to the establishment of treatment centers in the majority of medical centers, the listing of haemophilia as a catastrophic illness with full treatment reimbursement by the Taiwan National Health Insurance (NHI), and the implementation of full NHI coverage for prophylaxis therapy. This has led to outcome improvements such as reduced bleed-related morbidity and mortality, fewer viral infections, and enhanced overall multi-modality care. Most people with haemophilia (PWH) are now able to live normal, active lives. Early diagnosis has improved through increased awareness, physician education, and prenatal diagnosis; while comprehensive care, including state of the art rehabilitation and orthopaedic management for haemophilic arthropathy, eradication therapy for chronic hepatitis C, and better treatments for human immunodeficiency virus, allows PWH to enjoy a better quality of life and improved survival. Efforts are now being made to raise prophylaxis rates through full NHI reimbursement and the use of extended half-life recombinant factor products. Overall, Taiwan has made great strides in haemophilia care and we would like to share these experiences for the benefit of all healthcare providers involved in haemophilia care.


Asunto(s)
Hemofilia A , Hemofilia A/diagnóstico , Hemofilia A/tratamiento farmacológico , Hemorragia , Humanos , Programas Nacionales de Salud , Calidad de Vida , Taiwán
16.
Soc Work Health Care ; 61(3): 139-157, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35481456

RESUMEN

Parkinson's Disease is a neurological disease affecting over 10 million people worldwide. Interdisciplinary teams provide integrated care to people with Parkinson's Disease, including care for non-motor symptoms such as anxiety and depression, and many of these teams include social workers. This study sought to learn more about (a) clinical social work utilization across the continuum of care of PWP and their family care partners and (b) how patterns in utilization and service provision have shifted during the pandemic. This mixed method study identifies the breadth of roles performed by social workers in the comprehensive care of people with Parkinson's Disease (PWP). Findings underscore the important roles social workers play in providing comprehensive care for PWP and their families and their contributions to interdisciplinary teams providing holistic, integrated care, particularly during COVID-19 and into the future.


Asunto(s)
COVID-19 , Enfermedad de Parkinson , Ansiedad/epidemiología , COVID-19/epidemiología , Humanos , Enfermedad de Parkinson/epidemiología , Enfermedad de Parkinson/terapia , Servicio Social
17.
Medicina (Kaunas) ; 58(6)2022 May 25.
Artículo en Inglés | MEDLINE | ID: mdl-35743965

RESUMEN

Self-medication, a help-seeking behavior to control individual symptoms, can be promoted to prevent the overuse of medical care and improve self-management among older adults. However, evidence regarding the association between self-medication and quality of life (QOL) is lacking. The purpose of this study is to investigate the association between QOL and the usage of self-medication among rural older adults. This cross-sectional study included participants older than 65 years in rural Japanese communities. Data were collected using a questionnaire regarding self-medication trends, the EQ-5D-5L to assess QOL, and a demographics questionnaire. Participants were divided into exposure and control groups based on their tendencies toward self-medication usage. Differences in the demographics between groups were adjusted using propensity score matching. Results: The health status in the exposure group was statistically significantly better than that in the control group in the dimensions of movement, self-care, and usual activities. Conversely, the pain/discomfort and anxiety/depression dimensions were not statistically significantly different. The quality of self-medication behaviors for mild symptoms can be improved with practical knowledge of and access to home remedies and over-the-counter drugs. Educational interventions and system development for better self-medication for mild symptoms and medical care for critical symptoms in rural contexts can be effective in improving QOL among rural older adults.


Asunto(s)
Estado de Salud , Calidad de Vida , Anciano , Estudios Transversales , Humanos , Japón , Encuestas y Cuestionarios
18.
J Am Psychiatr Nurses Assoc ; : 10783903221079384, 2022 Feb 21.
Artículo en Inglés | MEDLINE | ID: mdl-35184607

RESUMEN

BACKGROUND: Pregnant women with substance use disorders (SUDs) are at risk for adverse delivery outcomes, and some of these women have psychiatric comorbidities that increase this risk. AIMS: Although comprehensive care models offering prenatal care services and substance abuse treatment have been found to positively affect delivery outcomes for pregnant women with SUDs, there is a dearth of research to support such models for women who have psychiatric comorbidities. METHODS: A secondary data analysis was conducted to understand the relationship between pretreatment psychiatric comorbidity and delivery outcomes for pregnant clients with SUDs receiving comprehensive treatment. We analyzed two groups of pregnant women with SUDs and hypothesized that women with psychiatric comorbidities would have worse neonatal and maternal outcomes compared with those who did not have any pretreatment psychiatric comorbidity. Regression models were used to examine changes in delivery outcome criteria (birthweight, neonatal abstinence syndrome, maternal urine toxicology screens at delivery, and hospital length of stay) in relation to psychiatric comorbidity among a sample of 74 mother-baby dyads receiving comprehensive care treatment. RESULTS: Results did not support our hypothesis as delivery outcomes were statistically similar for both groups. CONCLUSION: Findings suggest comprehensive care can reduce the risk of negative delivery outcomes among women with SUDs who have psychiatric comorbidities. Treatment and research implications are provided.

19.
BMC Genomics ; 22(1): 902, 2021 Dec 16.
Artículo en Inglés | MEDLINE | ID: mdl-34915846

RESUMEN

BACKGROUND: Sickle cell disease (SCD) is an important cause of under-five mortality. Tanzania is the 5th country in the world with the highest births prevalence of SCD individuals. Significant advances in the neonatal diagnosis of SCD using rapid point-of-care testing have been made. However genetic confirmation is still required for positive cases, in uncertain cases, in multiply transfused patients, to resolve compound heterozygosity (Hb S/ ß0 Thal or Hb S/ ß+ thal) not uncommon in the coastal regions of East Africa and increasingly also for pre-marital counselling and potentially for future curative approaches such as gene therapy. The currently available DNA tests are prohibitively expensive. Here, we describe an easy-to-use, affordable and accurate ß-globin sequencing approach that can be easily integrated within existing NBS for SCD and other haemoglobinopathies especially in Low- and Middle-income Countries. AIM: To evaluate an affordable DNA technology for the diagnosis of Sickle cell disease and other haemoglobinopathies in a resource-limited setting. METHODS: Laboratory-based validation study was conducted by Muhimbili University of Health and Allied Sciences and the University of Oxford involving sequencing of the entire ß -haemoglobin locus using the Oxford Nanopore MinION platform. A total number of 36 Dried blood spots and whole blood samples were subjected to conventional protein-based methods (isoelectric focusing, HPLC), and/or sequenced by the Sanger method as comparators. RESULTS: Sequencing results for SCD using the MinION were 100% concordant with those from the Sanger method. In addition, the long-read DNA sequencing method enabled the resolution of cases with unusual phenotypes which make up 1% of all children in Tanzania. The cost is £11/ sample for consumables, which is cheaper compared to other sequencing platforms. CONCLUSIONS: This is the first report of a comprehensive single DNA assay as a definitive diagnostic test for SCD and other haemoglobinopathies. The test is fast, precise, accurate and affordable.


Asunto(s)
Anemia de Células Falciformes , Hemoglobinopatías , Anemia de Células Falciformes/diagnóstico , Anemia de Células Falciformes/genética , ADN , Pruebas Diagnósticas de Rutina , Hemoglobinopatías/diagnóstico , Hemoglobinopatías/genética , Humanos , Tanzanía
20.
Haemophilia ; 27(6): 1051-1061, 2021 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-34492151

RESUMEN

INTRODUCTION: Physiotherapy is highly recommended for persons with haemophilia (PWH), to regain functioning after bleeding and to maintain functioning when dealing with haemophilic arthropathy. However, many PWH live too far from their Haemophilia Comprehensive Care Centre (HCCC) to receive regular treatment at their HCCC. Physiotherapists in primary care may have limited experience with a rare disease like haemophilia. AIM: To explore experiences of stakeholders with primary care physiotherapy for PWH and develop recommendations to optimize physiotherapy care coordination. METHODS: A RAND approach was used, consisting of a Delphi procedure with e-mailed questionnaires and a consensus meeting. Included stakeholders were PWH, physiotherapists from HCCC's and primary care physiotherapists. HCCC physiotherapists approached patients from their centre and primary care physiotherapists from their network to fill in the questionnaires. Purposive sampling was used to select participants from the survey sample for the consensus meeting. RESULTS: Ninety-six primary care physiotherapists, 54 PWH and eight HCCC physiotherapists completed the questionnaire. Subsequently, four PWH, three primary care physiotherapists and four HCCC physiotherapists participated in the consensus meeting. The questionnaires yielded 33 recommendations, merged into a final list of 20 recommendations based on the consensus meeting. The final rank-order consists of 13 recommendations prioritized by at least one stakeholder. CONCLUSION: Commitment to a formal network is considered not feasible for a rare disease like haemophilia. Development of a practice guideline, easy-accessible information and contact details, two-way and open communication between HCCC and primary care and criteria to refer back to the HCCC are recommended.


Asunto(s)
Hemofilia A , Fisioterapeutas , Hemofilia A/terapia , Hemorragia , Humanos , Modalidades de Fisioterapia , Encuestas y Cuestionarios
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