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Cardiovascular disease (CVD) is the leading cause of death worldwide. Despite medical advances, patients with CVD experience high morbidity and mortality rates, affecting their quality of life and death. Among CVD conditions, palliative care has been studied mostly in patients with heart failure, where palliative care interventions have been associated with improvements in patient-centered outcomes, including quality of life, end-of-life care, and health care use. Although palliative care is now incorporated into the American Heart Association/American College of Cardiology/Heart Failure Society of America guidelines for heart failure, the role of palliative care for non-heart failure CVD remains uncertain. Across all causes of CVD, palliative care can play an important role in all domains of CVD care from initial diagnosis to terminal care. In addition to general cardiovascular palliative care practices applicable to all areas, disease-specific palliative care needs may warrant individualized palliative care models. In this review, we discuss the role of cardiovascular palliative care for ischemic heart disease, valvular disease, arrhythmias, peripheral artery disease, and adult congenital heart disease. Although there are multiple barriers to cardiovascular palliative care, we recommend a framework for studying and developing cardiovascular palliative care models to improve patient-centered goal-concordant care for this underserved patient population.
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Cardiopatias Congênitas , Insuficiência Cardíaca , Doença Arterial Periférica , Humanos , Adulto , Cuidados Paliativos , Qualidade de VidaRESUMO
BACKGROUND: Transitioning home from the structured hospital setting poses challenges for people with stroke (PWS) and their caregivers (CGs), as they navigate through complex uncertainties. There are gaps in our understanding of appropriate support interventions for managing the transition home. In this qualitative study, we explored the perspectives of PWS and their CGs regarding their support experiences and preferences during this period. METHODS: Between November 2022 and March 2023, and within six months of hospital discharge, audio-recorded, semi-structured interviews were conducted with PWS and CGs. All interviews were transcribed, imported into NVivo software, and analysed using reflexive thematic analysis. RESULTS: Sixteen interviews were conducted, nine with PWS and seven with CGs. Four themes relevant to their collective experiences and preferences were identified: (i) Need for tailored information-sharing, at the right time, and in the right setting; (ii) The importance of emotional support; (iii) Left in limbo, (iv) Inequity of access. Experiences depict issues such as insufficient information-sharing, communication gaps, and fragmented and inequitable care; while a multi-faceted approach is desired to ease anxiety and uncertainty, minimise delays, and optimise recovery and participation during transition. CONCLUSIONS: Our findings highlight that regardless of the discharge route, and even with formal support systems in place, PWS and families encounter challenges during the transition period. The experiences of support at this transition and the preferences of PWS and CGs during this important period highlights the need for better care co-ordination, early and ongoing emotional support, and equitable access to tailored services and support. Experiences are likely to be improved by implementing a partnership approach with improved collaboration, including joint goal-setting, between PWS, CGs, healthcare professionals and support organisations.
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Cuidadores , Pesquisa Qualitativa , Acidente Vascular Cerebral , Humanos , Feminino , Cuidadores/psicologia , Masculino , Pessoa de Meia-Idade , Idoso , Acidente Vascular Cerebral/psicologia , Acidente Vascular Cerebral/terapia , Adulto , Alta do Paciente , Preferência do Paciente/psicologia , Idoso de 80 Anos ou mais , Apoio Social , Reabilitação do Acidente Vascular Cerebral/métodos , Reabilitação do Acidente Vascular Cerebral/psicologia , Serviços de Assistência DomiciliarRESUMO
BACKGROUND: Prior assessments of critical care outcomes in patients with cirrhosis have shown conflicting results. We aimed to provide nationwide generalizable results of critical care outcomes in patients with decompensated cirrhosis. METHODS: This is a retrospective study using the National Inpatient Sample from 2016 to 2019. Adults with cirrhosis who required respiratory intubation, central venous catheter placement or both (n = 12,945) with principal diagnoses including: esophageal variceal hemorrhage (EVH, 24%), hepatic encephalopathy (58%), hepatorenal syndrome (HRS, 14%) or spontaneous bacterial peritonitis (4%) were included. A comparison cohort of patients without cirrhosis requiring intubation or central line placement for any principal diagnosis was included. RESULTS: Those with cirrhosis were younger (mean 58 vs. 63 years, p < 0.001) and more likely to be male (62% vs. 54%, p < 0.001). In-hospital mortality was higher in the cirrhosis cohort (33.1% vs. 26.6%, p < 0.001) and ranged from 26.7% in EVH to 50.6% HRS. Mortality when renal replacement therapy was utilized (n = 1580, 12.2%) was 46.5% in the cirrhosis cohort, compared to 32.3% in other hospitalizations (p < 0.001), and was lowest in EVH (25.7%) and highest in HRS (51.5%). Mortality when cardiopulmonary resuscitation was used was increased in the cirrhosis cohort (88.0% vs. 72.1%, p < 0.001) and highest in HRS (95.7%). CONCLUSIONS: One-third of patients with cirrhosis requiring critical care did not survive to discharge in this U.S. nationwide assessment. While outcomes were worse than in patients without cirrhosis, the results do suggest better outcomes compared to previous studies.
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Cirrose Hepática , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Cirrose Hepática/terapia , Cirrose Hepática/complicações , Estudos Retrospectivos , Estudos Transversais , Estados Unidos/epidemiologia , Idoso , Resultados de Cuidados Críticos , Adulto , Pacientes Internados/estatística & dados numéricos , Mortalidade HospitalarRESUMO
OBJECTIVE: This study aimed to evaluate the impact of an intervention using the Treatment Summary and Survivorship Care Plan (TSSCP-P) on self-efficacy and quality of life (QoL) in breast cancer survivors. METHOD: A clinical study, randomized and controlled, conducted to assess self-efficacy and QOL in breast cancer survivors. The participants were randomly assigned to either an intervention group or a control group. The intervention group received individualized nursing consultations guided by the TSSCP-P, while the control group received standard care. Self-efficacy and QoL were assessed at three evaluation moments using validated scales: Functional Assessment of Cancer Therapy-Breast Plus Anm Morbidity (FACT B + 4) and Perceived General Self-Efficacy Scale. Statistical analyses, including regression analysis and hypothesis tests, were conducted to examine the effects of the intervention on self-efficacy and QoL. RESULTS: Female breast cancer survivors (N = 101) were recruited. The intervention group demonstrated a significant improvement in self-efficacy over time compared to the control group (p = 0.01). However, no significant differences were observed in the overall QoL scores between the two groups. Subscale analysis revealed a significant improvement in physical well-being for the intervention group (p = 0.04), while emotional well-being showed a non-significant improvement (p = 0.07). The study suggests that individualized care plans and support strategies, such as the TSSCP-P, can positively influence breast cancer survivors' self-efficacy and certain aspects of their QoL. CONCLUSION: These findings highlight the potential benefits of the TSSCP-P intervention in enhancing self-efficacy among breast cancer survivors. However, further research is needed to explore its impact on overall QoL and its effectiveness across different stages of breast cancer, as well as with longer follow-up periods. CLINICAL TRIAL REGISTRATION NUMBER: Brazilian Registry of Clinical Trials (ReBEC- RBR-2m7qkjy; UTN code: U1111-1257-3560), registered in April 19th, 2022.
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Neoplasias da Mama , Sobreviventes de Câncer , Qualidade de Vida , Autoeficácia , Humanos , Feminino , Neoplasias da Mama/terapia , Neoplasias da Mama/psicologia , Sobreviventes de Câncer/psicologia , Pessoa de Meia-Idade , Brasil , Adulto , Planejamento de Assistência ao Paciente , IdosoRESUMO
OBJECTIVES: To compare surgeon responses regarding their surgical plan before and after receiving a patient-specific three-dimensional (3D)-printed model of a patient's multifibroid uterus created from their magnetic resonance imaging. METHODS: 3D-printed models were derived from standard-of-care pelvic magnetic resonance images of patients scheduled for surgical intervention for multifibroid uterus. Relevant anatomical structures were printed using a combination of transparent and opaque resin types. 3D models were used for 7 surgical cases (5 myomectomies, 2 hysterectomies). A staff surgeon and 1 or 2 surgical fellow(s) were present for each case. Surgeons completed a questionnaire before and after receiving the model documenting surgical approach, perceived difficulty, and confidence in surgical plan. A postoperative questionnaire was used to assess surgeon experience using 3D models. RESULTS: Two staff surgeons and 3 clinical fellows participated in this study. A total of 15 surgeon responses were collected across the 7 cases. After viewing the models, an increase in perceived surgical difficulty and confidence in surgical plan was reported in 12/15 and 7/15 responses, respectively. Anticipated surgical time had a mean ± SD absolute change of 44.0 ± 47.9 minutes and anticipated blood loss had an absolute change of 100 ± 103.5 cc. 2 of 15 responses report a change in pre-surgical approach. Intra-operative model reference was reported to change the dissection route in 8/15 surgeon responses. On average, surgeons rated their experience using 3D models 8.6/10 for pre-surgical planning and 8.1/10 for intra-operative reference. CONCLUSIONS: Patient-specific 3D anatomical models may be a useful tool to increase a surgeon's understanding of complex gynaecologic anatomy and to improve their surgical plan. Future work is needed to evaluate the impact of 3D models on surgical outcomes in gynaecology.
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Imageamento por Ressonância Magnética , Modelos Anatômicos , Impressão Tridimensional , Útero , Humanos , Feminino , Útero/cirurgia , Útero/diagnóstico por imagem , Útero/anatomia & histologia , Neoplasias Uterinas/cirurgia , Neoplasias Uterinas/diagnóstico por imagem , Miomectomia Uterina/métodos , Histerectomia/métodos , Leiomioma/cirurgia , Leiomioma/diagnóstico por imagem , Leiomioma/patologia , Adulto , CirurgiõesRESUMO
BACKGROUND: In order to mitigate the distress associated with life limiting conditions it is essential for all health professionals not just palliative care specialists to identify people with deteriorating health and unmet palliative care needs and to plan care. The SPICT™ tool was designed to assist with this. AIM: The aim was to examine the impact of the SPICT™ on advance care planning conversations and the extent of its use in advance care planning for adults with chronic life-limiting illness. METHODS: In this scoping review records published between 2010 and 2024 reporting the use of the SPICT™, were included unless the study aim was to evaluate the tool for prognostication purposes. Databases searched were EBSCO Medline, PubMed, EBSCO CINAHL, APA Psych Info, ProQuest One Theses and Dissertations Global. RESULTS: From the search results 26 records were reviewed, including two systematic review, two theses and 22 primary research studies. Much of the research was derived from primary care settings. There was evidence that the SPICT™ assists conversations about advance care planning specifically discussion and documentation of advance care directives, resuscitation plans and preferred place of death. The SPICT™ is available in at least eight languages (many versions have been validated) and used in many countries. CONCLUSIONS: Use of the SPICT™ appears to assist advance care planning. It has yet to be widely used in acute care settings and has had limited use in countries beyond Europe. There is a need for further research to validate the tool in different languages.
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Planejamento Antecipado de Cuidados , Cuidados Paliativos , Assistência Terminal , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Planejamento Antecipado de Cuidados/normas , Assistência Terminal/métodos , Assistência Terminal/normasRESUMO
AIM(S): To demonstrate how interoperable nursing care data can be used by nurses to create a more holistic understanding of the healthcare needs of multiple traumas patients with Impaired Physical Mobility. By proposing and validating linkages for the nursing diagnosis of Impaired Physical Mobility in multiple trauma patients by mapping to the Nursing Outcomes Classification (NOC) and Nursing Interventions Classification (NIC) equivalent terms using free-text nursing documentation. DESIGN: A descriptive cross-sectional design, combining quantitative analysis of interoperable data sets and the Kappa's coefficient score with qualitative insights from cross-mapping methodology and nursing professionals' consensus. METHODS: Cross-mapping methodology was conducted in a Brazilian Level 1 Trauma Center using de-identified records of adult patients with a confirmed medical diagnosis of multiple traumas and Impaired Physical Mobility (a nursing diagnosis). The hospital nursing free-text records were mapped to NANDA-I, NIC, NOC and NNN linkages were identified. The data records were retrieved for admissions from September to October 2020 and involved medical and nursing records. Three expert nurses evaluated the cross-mapping and linkage results using a 4-point Likert-type scale and Kappa's coefficient. RESULTS: The de-identified records of 44 patients were evaluated and then were mapped to three NOCs related to nurses care planning: (0001) Endurance; (0204) Immobility Consequences: Physiological, and (0208) Mobility and 13 interventions and 32 interrelated activities: (6486) Environmental Management: Safety; (0840) Positioning; (3200) Aspiration Precautions; (1400) Pain Management; (0940) Traction/Immobilization Care; (3540) Pressure Ulcer Prevention; (3584) Skincare: Topical Treatment; (1100) Nutrition Management; (3660) Wound Care; (1804) Self-Care Assistance: Toileting; (1801) Self-Care Assistance: Bathing/Hygiene; (4130) Fluid Monitoring; and (4200) Intravenous Therapy. The final version of the constructed NNN Linkages identified 37 NOCs and 41 NICs. CONCLUSION: These valid NNN linkages for patients with multiple traumas can serve as a valuable resource that enables nurses, who face multiple time constraints, to make informed decisions efficiently. This approach of using evidence-based linkages like the one developed in this research holds high potential for improving patient's safety and outcomes. NO PATIENT OR PUBLIC CONTRIBUTION: In this study, there was no direct involvement of patients, service users, caregivers or public members in the design, conduct, analysis and interpretation of data or preparation of the manuscript. The study focused solely on analysing existing de-identified medical and nursing records to propose and validate linkages for nursing diagnoses.
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Diagnóstico de Enfermagem , Humanos , Estudos Transversais , Feminino , Masculino , Adulto , Brasil , Pessoa de Meia-Idade , Limitação da Mobilidade , Ferimentos e Lesões/enfermagem , Cuidados de Enfermagem/métodos , Cuidados de Enfermagem/normasRESUMO
BACKGROUND: Patient involvement in the interdisciplinary bedside round (IBR) increases care quality and safety but is influenced and perceived differently by different round participants. Nursing and medical students are still not structurally embedded in the healthcare system, and they participate in interdisciplinary bedside rounds for educational purposes. Thus, the students may give a valuable perspective on patient involvement from the 'outside view'. AIM: This study aimed to describe nursing and medical students' perceptions of patient involvement in IBRs. METHODS: This study has a qualitative design with individual interviews. Eighteen informants were recruited with the help of gatekeepers from two sites in Sweden: a university training health clinic and a county hospital. They participated in one-to-one semi-structured interviews, which were analysed with an inductive qualitative content analysis approach. ETHICAL ISSUES AND APPROVAL: The study has been approved by the Swedish Ethical Review Authority. Informed consent was received from all participants. RESULTS: The results yielded five categories. Two sub-themes and one theme of meaning emerged as a 'red thread' across the categories. The theme of meaning was: 'In hospital rounds, the patient is a respected guest, but with a disadvantaged "alien status" due to the hosts' difficult medical language and unclear routines'. Students perceive patients are not fully involved in IBRs, and the healthcare team controls this involvement due to patients' lack of knowledge and vulnerability, the hectic hospital environment, and complicated medical language. Doctors lead IBRs and encourage or discourage patient involvement and nurses act as patient advocates, supporting their involvement. CONCLUSIONS: According to nursing and medical students, patients are seldom involved in IBRs due to multiple interaction barriers and despite communicational facilitators. Their involvement depends on healthcare professionals. Further research should investigate other IBRs stakeholders' perspectives on patient involvement in IBRs to facilitate it.
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Background: Primary nursing (Process Responsible Nursing; PRN) is a nursing organization model, practiced in intensive care units (ICUs), but implementation is challenging. This paper focuses on the qualitative process analysis of the development and implementation of PRN in an ICU at a German university hospital. Aims: Aim was to record the perception of changes in nursing practice due to the introduction of PRN and obtain information on implementation and further optimization perceived by nurses. Method: A qualitative process analysis was done. Data collection took place at three defined times (immediately before implementation and 6 and 12 months after) and each included a focus group interview (FG) and a 5-day ICU ward process analysis (WA) in the form of participant observation. The analysis of FG and WA was carried out according to Kuckartz's content-structuring qualitative content analysis. Findings: The main categories communication, care planning and integration of patients and relatives in care and 13 subcategories with a cross-sectional category could be identified. Positive effects of PRN were found, particularly concerning relatives. The optimization potential included handover, visit appointments, the documentation system and adjustments to the visiting times. Conclusion: The qualitative analysis was able to show changes during the introduction of PRN, e.g. in communication and care planning, but also challenges like visit appointments or the documentation system in nursing practice.
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OBJECTIVE: Asthma is characterized by reversible pulmonary symptoms, frequent hospitalizations, poor quality of life, and varied treatment. Parents with low health literacy (HL) is linked to poor asthma outcomes in children. Recent practice updates recommended inhaled corticosteroids for the management of persistent asthma, but guideline-concordant care is suboptimal. Our aim was to develop and assess an Asthma Action Plan (AAP) that could serve as an individualized plan for low HL families and facilitate guideline-concordant care for clinicians. METHODS: We followed the National Institute of Health 5-step "Clear & Simple" approach to develop the Uniformed Services AAP. Our AAP included symptom pictographs (dyspnea, cough, sleep, activity) and guideline-concordant clinical automation tools. Caregivers assessed the pictograms for validity (transparency of ≥ 85%; translucency score ≥ 5; and ≥ 85% recall). Readability was assessed using 7 formulas. (<6th Grade was acceptable). Comprehensibility, design quality, and usefulness was assessed by caregivers using the Consumer Information Rating Form (CIRF) (>80% was acceptable). Understandability and actionability was assessed by medical librarians using the Patient Education Materials Assessment Tool-Printable (>80% was acceptable). Suitability was assessed by clinicians using the modified Suitability Assessment of Materials (SAM) instrument (>70% was superior). RESULTS: All 12 pictograms were validated (N = 118 respondents). Readability demonstrated a 4th grade level. Overall CIRF percentile score = 80.4%. Understandability and Actionability = 100%. Suitability score = 75%. CONCLUSIONS: Our AAP was formally endorsed by the Allergy & Asthma Network. The Uniformed Services AAP is a novel tool with embedded clinical automation that can address low HL and enhance guideline-concordant care.
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Asma , Letramento em Saúde , Humanos , Criança , Asma/tratamento farmacológico , Asma/diagnóstico , Qualidade de Vida , Pais , EscolaridadeRESUMO
AIM: To understand how nurses talk about documentation audit in relation to their professional role. BACKGROUND: Nursing documentation in health services is often audited as an indicator of nursing care and patient outcomes. There are few studies exploring the nurses' perspectives on this common process. DESIGN: Secondary qualitative thematic analysis. METHODS: Qualitative focus groups (n = 94 nurses) were conducted in nine diverse clinical areas of an Australian metropolitan health service for a service evaluation focussed on comprehensive care planning in 2020. Secondary qualitative analysis of the large data set using reflexive thematic analysis focussed specifically on the nurse experience of audit, as there was the significant emphasis by participants and was outside the scope of the primary study. RESULTS: Nurses': (1) value quality improvement but need to feel involved in the cycle of change, (2) highlight that 'failed audit' does not equal failed care, (3) describe the tension between audited documentation being just bureaucratic and building constructive nursing workflows, (4) value building rapport (with nurses, patients) but this often contrasted with requirements (organizational, legal and audit) and additionally, (5) describe that the focus on completion of documentation for audit creates unintended and undesirable consequences. CONCLUSION: Documentation audit, while well-intended and historically useful, has unintended negative consequences on patients, nurses and workflows. IMPACT: Accreditation systems rely on care being auditable, but when individual legal, organizational and professional standards are implemented via documentation forms and systems, the nursing burden is impacted at the point of care for patients, and risks both incomplete cares for patients and incomplete documentation. NO PATIENT OR PUBLIC CONTRIBUTION: Patients participated in the primary study on comprehensive care assessment by nurses but did not make any comments about documentation audit.
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Cuidados de Enfermagem , Humanos , Austrália , Documentação , Grupos FocaisRESUMO
Dementia is a major public health challenge, and its impact on oral health and oral healthcare delivery can be drastic. More people are living with dementia, and the proportion of people living longer is growing. This review summarises dementia and its impact on oral health, dental care access and dental services. People living with dementia (PLwD) face a substantial risk of developing oral diseases and experiencing orofacial pain. PLwD face many barriers to dental care. When care is accessed, there can be practical and ethical challenges in receiving person-centred treatment. PLwD with the most complex needs are increasing in number and more are likely to require specialist care. Recommendations are made regarding preventative care, dental care access, domiciliary care, workforce planning and treatment decision-making. Those commissioning and facilitating dental care for PLwD should ensure that suitably trained staff are available in accessible services to plan the necessary care and provide active treatment where appropriate. It is almost inevitable that more care will need to be commissioned to support this growing patient group. This need should be anticipated and planned for at a population and policy level to reduce the detrimental impacts of oral diseases and orofacial pain for PLwD.
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Demência , Humanos , Demência/complicações , Demência/terapia , Atenção à Saúde , Saúde Bucal , Assistência Odontológica , Reino UnidoRESUMO
Goal setting is an integral part of rehabilitation and the rehabilitation process. The aim of rehabilitation is to optimize functioning. Therefore, rehabilitation professionals and patients together have to determine mutually which aspects of functioning they should aim at. From a clinical view, a formal procedure for setting goals should help to motivate patients, ensure cooperation of rehabilitation team members, help to identify relevant blind spots and provide a system to monitor patient changes. Applying goalsetting in rehabilitation represents a purpose in its own right, as it serves to strengthen the autonomy of patients and is a valuable tool to integrate personal motives, attitudes, meanings into the rehabilitation process. There is evidence that the introduction of goal setting into rehabilitation practice could enhance health-related quality of life and emotional states, especially self-efficacy. Mixed results have been reported regarding the patient motivation as well as activities and participation outcomes.
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Objetivos , Qualidade de Vida , Humanos , Motivação , Autoeficácia , Participação do PacienteRESUMO
Cancer patients face many challenges that can have a significant impact on their quality of life (QOL). When patients experience multiple functional impairments due to disease or treatment, their QOL and the efficient use of healthcare resources can be compromised. This is particularly true for patients who are nearing the end of their lives, as the physical and emotional burden of cancer can have a profound effect on both the individual and their caregivers. One approach to improving QOL in these patients is through palliative rehabilitation. Despite being an underutilized and understudied resource, palliative rehabilitation has shown promise in helping patients with advanced cancer retain their dignity and sense of control. By maximizing functional independence and reducing symptom burdens, palliative rehabilitation can provide a vital source of support for patients and their caregivers during this challenging time. Inpatient rehabilitation is one way that palliative rehabilitation can be applied in a healthcare setting. While further research is needed to fully understand the benefits of this approach, it is clear that palliative rehabilitation has the potential to play a key role in helping patients and their caregivers navigate the challenges of cancer treatment and end-of-life care. This approach is specific to the USA context but can be applied in other settings where cancer patients require such care.
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Neoplasias , Cuidados Paliativos , Humanos , Qualidade de Vida/psicologia , Pacientes Internados , Neoplasias/terapia , Emoções , CuidadoresRESUMO
OBJECTIVE: To develop and assess an evidence-based, individualized Cyclic Vomiting Syndrome Action Plan (CVSAP) to optimize both preventative and acute care. STUDY DESIGN: This implementation science project synthesized a combination of clinical practice guidelines, published literature, and clinical experience by a team of CVS clinicians to develop the CVSAP. The tool was developed to include validated pictograms and an automatic, embedded, weight-based dosing calculator to output acute management recommendations. The final version of the CVSAP was tested by patients/caregivers, readability calculators, medical librarians, and clinicians using validated metrics. RESULTS: All pictograms met the criteria for inclusion in the CVSAP. A composite readability score of 5.32 was consistent with a fifth-grade level. Patients/caregivers (n = 70) judged the CVSAP to be of high quality with consumer information rating form rating of 84.2%. Six medical librarians rated the CVSAP to have 93% understandability and 100% actionability, and 33 clinicians completing the SAM generated a suitability rating of 87.5%. CONCLUSIONS: The CVSAP visually highlights individualized care plan components to facilitate optimized preventative and acute CVS care. Further investigation will determine if CVSAP increases caregiver confidence and compliance in home management and improves quality of life and clinical outcomes for patients with CVS.
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Letramento em Saúde , Qualidade de Vida , Compreensão , Humanos , VômitoRESUMO
OBJECTIVES: To describe the care provided by Brazilian nurses to patients with Juvenile Systemic Lupus Erythematosus (JSLE) using a self-administered questionnaire and to evaluate the possible association of demographic data and knowledge of the disease with availability of tools for diagnosis and treatment in Brazilian pediatric services. METHOD: This is a cross-sectional observational descriptive study that analyzed the care provided by Brazilian nurses to patients with JSLE based on the answers to a self-administered questionnaire. Questions included demographics of professionals, nursing consultation, usage of tools to assess disease activity, diagnostic criteria, general care, available practices, transition program, and practices needed for better care. RESULTS: A total of 111/373 (29.4%) questionnaires were completed, most professionals were female (90.1%). Hospitalization (45.9%) and poor medication adherence (27.9%) were the most reported problems, and lack of knowledge about the institutional transition process to adult care was mentioned by half of the professionals (50.5%). Comparisons of professionals on expected care of patients regarding the type of service, hospitalized patient care, and care provided to patients with JSLE did not reveal statistically significant differences (p > 0.05). Nurses who care for patients with JSLE are more likely to work in a public setting (14.5% vs. 36.8%, p = 0.048) and less likely to verify vaccination records (0.12.9% vs. 36.8%, p = 0.038). Nurses who worked in the inpatient setting with patients with JSLE were less likely to address pain concerns (11.7% vs. 61.6%, p < 0.0001) compared to nurses who didn't work with JSLE patients. However, they were more likely to discuss sunscreen use (54.9% vs. 25%, p < 0.05) and be part of a multi-disciplinary team (84.3 vs. 50%, p < 0.0001). CONCLUSIONS: This study demonstrates that the care provided by nurses to patients with JSLE does not consider all the resources available to assess the disease and occurs differently in the inpatient versus outpatient settings. Future research should address this gap in care. Lack of JSLE awareness was commonly reported among professionals, confirming the need for greater knowledge about JSLE, its treatment, and ways to improve adherence.
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Lúpus Eritematoso Sistêmico , Adulto , Brasil/epidemiologia , Criança , Estudos Transversais , Feminino , Humanos , Lúpus Eritematoso Sistêmico/diagnóstico , Lúpus Eritematoso Sistêmico/terapia , Inquéritos e QuestionáriosRESUMO
BACKGROUND: The provision of care to pregnant persons and neonates must continue through pandemics. To maintain quality of care, while minimizing physical contact during the Severe Acute Respiratory Syndrome-related Coronavirus-2 (SARS-CoV2) pandemic, hospitals and international organizations issued recommendations on maternity and neonatal care delivery and restructuring of clinical and academic services. Early in the pandemic, recommendations relied on expert opinion, and offered a one-size-fits-all set of guidelines. Our aim was to examine these recommendations and provide the rationale and context to guide clinicians, administrators, educators, and researchers, on how to adapt maternity and neonatal services during the pandemic, regardless of jurisdiction. METHOD: Our initial database search used Medical subject headings and free-text search terms related to coronavirus infections, pregnancy and neonatology, and summarized relevant recommendations from international society guidelines. Subsequent targeted searches to December 30, 2020, included relevant publications in general medical and obstetric journals, and updated society recommendations. RESULTS: We identified 846 titles and abstracts, of which 105 English-language publications fulfilled eligibility criteria and were included in our study. A multidisciplinary team representing clinicians from various disciplines, academics, administrators and training program directors critically appraised the literature to collate recommendations by multiple jurisdictions, including a quaternary care Canadian hospital, to provide context and rationale for viable options. INTERPRETATION: There are different schools of thought regarding effective practices in obstetric and neonatal services. Our critical review presents the rationale to effectively modify services, based on the phase of the pandemic, the prevalence of infection in the population, and resource availability.
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COVID-19/prevenção & controle , Controle de Doenças Transmissíveis/organização & administração , Atenção à Saúde/organização & administração , Serviços de Saúde Materno-Infantil/organização & administração , Assistência Perinatal , Guias de Prática Clínica como Assunto , Complicações Infecciosas na Gravidez/prevenção & controle , Centros Médicos Acadêmicos , COVID-19/terapia , Canadá , Feminino , Humanos , Lactente , Recém-Nascido , Pacientes Internados , Política Organizacional , Pacientes Ambulatoriais , Gravidez , Complicações Infecciosas na Gravidez/terapia , SARS-CoV-2RESUMO
OBJECTIVE: This systematic review aims to examine (1) what components are used in current person-centered goal-setting interventions for adults with health conditions in rehabilitation and (2) the extent to which the engagement of people in their rehabilitation goal setting is encouraged. DATA SOURCES: PubMed/MEDLINE, Embase, Cumulative Index of Nursing and Allied Health Literature, Scopus, and Web of Science from inception to November 2020. STUDY SELECTION: Primary inclusion criteria were peer-reviewed articles that evaluated person-centered goal-setting interventions for adults with health conditions in rehabilitation. Two independent reviewers screened 28,294 records, and 22 articles met inclusion criteria. DATA EXTRACTION: Two reviewers independently completed data extraction and quality assessment using the Physiotherapy Evidence Database (PEDRo) scale based on the original authors' descriptions, reports, and protocol publications. Any discrepancies were resolved by consensus or in consultation with another senior reviewer. DATA SYNTHESIS: Using narrative synthesis, we found that current person-centered goal setting has variability in their inclusion of intervention components. A considerable number of components are underimplemented in current practice, with formulation of coping plan and follow-up being most commonly left out. The active engagement of people does appear to be promoted within the components that are included in the interventions. Nine studies were high-quality defined as a total PEDro scale score of 6 or above. CONCLUSIONS: Although current person-centered goal setting encourages the active engagement of people, many of these interventions lack components considered important for supporting goal achievement and optimal outcomes. Future practice may be improved by incorporating a comprehensive set of goal-setting components and encouraging the active engagement of people throughout the entire goal-setting process. Together, these practices may facilitate the achievement of meaningful rehabilitation goals and improve rehabilitation outcomes for adults with health conditions.
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Objetivos , Participação do Paciente/métodos , Assistência Centrada no Paciente/métodos , Reabilitação/métodos , Adulto , Atenção à Saúde , Humanos , MotivaçãoRESUMO
BACKGROUND: Conversion from paper-based to electronic medical records (EMR) may affect the quality and timeliness of the completion of Goals-of-Care (GOC) documents during hospital admissions and this may have been further impacted by the COVID-19 pandemic. AIMS: To determine the impact of EMR and COVID-19 on the proper completion of GOC forms and the factors associated with inpatient changes in GOC. METHODS: We conducted a cross-sectional study of adult general medicine admissions (August 2018-September 2020) at Dandenong Hospital (Victoria, Australia). We used interrupted time series to model the changes in the rates of proper GOC completion (adequate documented discussion, completed ≤2 days) after the introduction of EMR and the arrival of COVID-19. RESULTS: We included a total of 5147 patients. The pre-EMR GOC proper completion rate was 27.7% (overall completion, 86.5%). There was a decrease in the proper completion rate by 2.21% per month (95% confidence interval (CI): -2.83 to -1.58) after EMR implementation despite an increase in overall completion rates (91.2%). The main reason for the negative trend was a decline in adequate documentation despite improvements in timeliness. COVID-19 arrival saw a reversal of this negative trend, with proper completion rates increasing by 2.25% per month (95% CI: 1.35 to 3.15) compared with the EMR period, but also resulted in a higher proportion of GOC changes within 2 days of admission. CONCLUSIONS: EMR improved the timeliness and overall completion rates of GOC at the cost of a lower quality of documented discussion. COVID-19 reversed the negative trend in proper GOC completion but increased the number of early revisions.
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COVID-19 , Adulto , COVID-19/epidemiologia , Estudos Transversais , Registros Eletrônicos de Saúde , Objetivos , Humanos , Pandemias , VitóriaRESUMO
BACKGROUND: To evaluate the impact of a nurse navigation program on treatment adherence and resolution of hepatitis C infection in patients with severe mental disorder. METHODS: An open, randomized, controlled trial with blinded outcome assessment. The intervention group will engage in a nurse navigation program designed by mental health nurses. The program involves active screening for patients with severe mental disorder. The patients and caregivers included in the program will receive information, training, support and guidance throughout the treatment and recovery process, which involves different healthcare professionals and units. The control group will receive the standard of care, which includes follow-up by a family physician, referral to the hepatologist, serological testing, new referral to the hepatologist, onset of treatment, and follow-up. Multidisciplinary care will be provided along a coordinated and seamless clinical pathway led by a nurse navigator. The primary endpoints are total recovery (hepatitis C cure) and treatment adherence. Occurrence of symptoms of schizophrenia and health-related quality of life will be also recorded. Follow-up of patients will be performed three and six months after the administration of antiviral treatment. The study was authorised by the Ethics Committee of Malaga in December 2021. Funding was approved in March 2021. DISCUSSION: If this intervention is proven to be effective in improving treatment access and adherence, it will represent a step forward in addressing a chronic health issue that is 16 times more prevalent in the population with severe mental disease. Finally, this intervention may lead to the detection of undertreated HCV infection in this population of patients. TRIAL REGISTRATION: This protocol has been registered in ClinicalTrials.gov with identifier code NCT04891445 on May 18, 2021.