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Objetivo: Describir el crecimiento femoral proximal en una población latinoamericana a través del desplazamiento femoral, el ángulo cervico-diafisario, la longitud del cuello femoral y el diámetro de la cabeza femoral evaluados con tomografía computarizada en pacientes pediátricos sin enfermedad de cadera. Materiales y métodos: Estudio retrospectivo que evaluó imágenes de tomografía computarizada de caderas de pacientes sanos <18 años. Se tomaron las siguientes medidas: desplazamiento femoral, longitud del cuello femoral, diámetro de la cabeza femoral y ángulo cervico-diafisario. Resultados:El desplazamiento femoral aumenta 1,96 mm hasta los 12.5 años, y desde los 12.5 hasta los 16 años, aumenta 1,2 mm. Se constató un aumento lineal del crecimiento de la longitud del cuello femoral. El ángulo cervico-diafisario disminuyó progresivamente hasta los 12 años. A partir de ese momento, la curva se aplanó. Se observó un aumento anual del diámetro de la cabeza femoral de 1,56 mm hasta los 13 años y de 0,62 mm anuales, en adelante. Conclusiones: Las medidas descritas en este estudio son esenciales para el seguimiento, el diagnóstico o el abordaje conductual en múltiples cuadros articulares de cadera durante el crecimiento. Se expone la necesidad de realizar estudios más amplios para establecer rangos de normalidad en la población local con las herramientas tecnológicas disponibles, que fundamenten una referencia para la restauración de la anatomía en la cirugía de preservación.Palabras clave: Cabeza femoral; cuello femoral; desarrollo humano. Nivel de Evidencia :IV
Introduction: This study aims to perform a descriptive analysis of proximal femoral growth in a Latin-American population through femoral offset, neck-shaft angle, femoral neck length, and femoral head diameter evaluated through computed tomography in pediatric patients without hip pathology. Materials and methods: Retrospective study evaluating CT images of the hips of healthy patients under 18 years. The following measurements were taken by a trained orthopedist: femoral offset, femoral neck length, femoral head diameter, and neck-shaft angle. Results:Femoral offset increases by 1.96 mm until age 12.5. From 12.5 to 16 years of age, it increases by 1.2 mm. A constant rise in the growth of the femoral neck length was found. The neck-shaft angle presented a progressive decrease until age 12. After that point, the curve flattened. An increase in femoral head diameter of 1.56 mm per year was observed until age 13 and then 0.62 mm per year. Conclusions: The measurements evaluated in this study are essential for the diagnosis, follow-up, and treatment approach in hip pathologies during growth. More extensive research is needed to define normal ranges that will serve as a baseline for anatomy restoration in hip joint preservation surgery. Level of Evidence: IV
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Pré-Escolar , Tomografia Computadorizada por Raios X , Crescimento e Desenvolvimento , Fêmur , Cabeça do Fêmur , Colo do Fêmur , Desenvolvimento HumanoRESUMO
INTRODUCTION: Understanding patient and caregiver experience is key to providing person-centered care. The palliative care approach includes holistic assessment and whole-person care at the end of life, that also involves the patient's family and loved ones. The aim of this study was to describe the way that family caregivers experienced patients' deaths during their loved ones' last hospital admission, comparing inpatient palliative care (PCU) and non-palliative care (Non-PCU) units. METHODS: A qualitative case study approach was implemented. Family caregivers of terminally ill patients admitted to the Infanta Elena Hospital (Madrid, Spain) between 2016 and 2018 were included using purposeful sampling. Eligible caregivers were first-degree relatives or spouses present during the patient's last hospital admission. Data were collected via in-depth interviews and researchers' field notes. Semi-structured interviews with a question guide were used. A thematic inductive analysis was performed. The group of caregivers of patients admitted to the PCU unit and the group of caregivers of patients admitted to Non-PCU were analyzed separately, through a matrix. RESULTS: In total 24 caregivers (12 from the PCU and 12 from Non-PCU units) were included. Two main themes were identified: caregivers' perception of scientific and technical appropriateness of care, and perception of person-centred care. Scientific appropriateness of care was subdivided into two categories: diagnostic tests and treatment, and symptom control. Perception of person-centred care was subdivided as: communication, emotional support, and facilitating the farewell process. Caregivers of patients admitted to a PCU unit described their experience of end-of-life care as positive, while their Non-PCU unit counterparts described largely negative experiences. CONCLUSIONS: PCU provides a person-centered approach to care at the end of life, optimizing treatment for patients with advanced disease, ensuring effective communication, establishing a satisfactory professional relationship with both patients and their loved ones, and facilitating the farewell process for family caregivers.
This article describes a qualitative case study focusing on family caregivers' perception of end-of-life care during their loved ones' dying process in their last hospital admission. Differences were observed between palliative care and non-palliative care groups regarding the perception of scientific appropriateness of care and person-centered nature of care as reported by caregivers.
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Pacientes Internados , Assistência Terminal , Humanos , Cuidadores , Morte , HospitalizaçãoRESUMO
CONTEXT: Hospital deaths carry a significant healthcare cost that has been confirmed to be lower when palliative care units (PCUs) are available. OBJECTIVES: To compare the last admission hospital health care cost of dying in a first-level hospital between the PCU and the rest of the hospital services. METHODS: A retrospective, comparative, observational study evaluating costs from the payer perspective on treatments and diagnostic-therapeutic tests performed on patients who die in first-level hospital, comparing whether they were treated by the PCU or another unit (Non-PCU). Patients with a mortality risk >2 were included according to the Severity of Illness Index (SOI) and Risk of Mortality (MOR). All cost express in , median per patient and interquartile range (IQR). RESULTS: From 1,833 patients who died, 1,389 were included, 442 (31.1%) treated by PCU and 928 (68.9%) Non-PCU. Statistical differences were found for the last admission total cost (262.8 (470.1) for PCU versus 515.3 (980.48) in Non-PCU), daily total cost (74.27 (127.4) vs 115.8 (142.4) Non-PCU). Savings were maintained when the sample was broken down by diagnosis-related group (DRG) and a multivariate analysis was performed to determine how the different patients baseline characteristics between PCU and Non-PCU patients influenced the results obtained. CONCLUSIONS: Data from this study show that cost is significantly lower when the patients are treated by a PCU during their last hospital stay when they pass away.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Redução de Custos , Morte , Humanos , Cuidados Paliativos/métodos , Estudos RetrospectivosRESUMO
Background: The WHO has proclaimed that palliative care (PC) should be integrated as a routine element of all undergraduate medical and nursing education. The EDUPALL Erasmus+project produced a PC curriculum for undergraduate medical education based on the European Association for Palliative Care (EAPC) recommendations for undergraduate training. This was tested in four Romanian Faculties of Medicine: Universities of Transilvania, Iasi, Targu Mures, and Timisoara. The aim of this study is to describe teachers' satisfaction and views on the effectiveness of the EDUPALL curriculum and supporting learning materials. Methods: We conducted nine semistructured interviews with teachers involved in EDUPALL implementation in their universities. Interviews were transcribed and collected data underwent thematic analysis. Kirkpatrick's four-level evaluation model of training was employed to synthesize the outcomes into final categories of reaction, learning, behavior, and results. Results: Data were categorized against Kirkpatrick's four levels as follows: Level 1 (Reaction) EDUPALL curriculum-a good standard with achievable goals; Level 2 (Learning) Personal appraisal and development needs of the teaching faculty; Level 3 (Behavior) Application of competencies and student feedback; and Level 4 (Results): Faculty- and country-level Impact of the EDUPALL project. Conclusion: EDUPALL curriculum is a good and adaptive model to teach PC at Faculties of Medicine, considered by teachers as a way of bridging an existing training gap for medical students in building essential competencies in symptom management, communication, spirituality, and self-awareness.
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Educação de Graduação em Medicina , Educação em Enfermagem , Estudantes de Medicina , Currículo , Educação de Graduação em Medicina/métodos , Humanos , Cuidados Paliativos , EnsinoRESUMO
[This corrects the article DOI: 10.3389/fneur.2021.634766.].
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Objective: Recognizing delirium phenomenology (DP) aids the early diagnosis of this syndrome and improves quality of life in patients with advanced cancer. The aim of this study was to identify the neurobehavioral and cognitive patterns of delirium-related symptoms in persons with advanced cancer. Methods: We conducted an observational comparative prospective study on delirium in patients with advanced cancer in different palliative care settings, assessing the presentation/evolution of DP with the Memorial delirium assessment scale (MDAS). Results: Two hundred twenty-seven patients were enrolled on hospital/hospice admission. Of these, 57 were admitted with delirium, 170 without delirium, and 31 developed delirium during hospitalization. Of the 88 patients admitted with delirium or who developed it during hospitalization, only 32 underwent two consecutive MDAS evaluations (at diagnosis and after one week). Delirium resolved in 22 patients (first average MDAS score 10.08 vs. second 3.6 [p < 0.001]). Disorientation, short-term memory, and memory span were altered in all patients with unresolved delirium. The same features were altered in 18 (80%), 17 (80%), and 16 (70%) of the patients with resolved delirium, respectively, and in 58 (35%), 114 (67%), and 38 (23%) of no-delirium patients, respectively. Conclusion: Cognitive-related symptoms appear to be the most prevalent and earliest signs of DP in patients with advanced cancer.
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Delírio , Neoplasias , Delírio/diagnóstico , Delírio/etiologia , Humanos , Neoplasias/complicações , Cuidados Paliativos , Estudos Prospectivos , Qualidade de VidaRESUMO
Objectives: Magnetization transfer (MT) imaging exploits the interaction between bulk water protons and protons contained in macromolecules to induce signal changes through a special radiofrequency pulse. MT detects muscle damage in patients with neuromuscular conditions, such as limb-girdle muscular dystrophies or Charcot-Marie-Tooth disease, which are characterized by progressive fiber loss and replacement by fatty tissue. In Pompe disease, in which there is, in addition, an accumulation of glycogen inside the muscle fibers, MT has not been tested yet. Our aim is to estimate MT ratio (MTR) in the skeletal muscle of these patients and correlate it with intramuscular fat fraction (FF) and results of muscle function tests. Methods: We obtained two-point axial Dixon and Dixon-MT sequences of the right thigh on a 1.5 Teslas MRI scanner in 60 individuals, including 29 late onset Pompe disease patients, 2 patients with McArdle disease, and 29 age and sex matched healthy controls. FF and MTR were estimated. Muscle function using several muscle function tests, including quantification of muscle strength, timed test quality of life scales, conventional spirometry obtaining forced vital capacity while sitting and in the supine position, were assessed in all patients. Results: MTR was significantly lower in Pompe patients compared with controls (45.5 ± 8.5 vs. 51.7 ± 2.3, Student T-test, p < 0.05). There was a negative correlation between the MTR and FF muscles studied (correlation coefficient: -0.65, Spearman test: p < 0.05). MTR correlated with most of the muscle function test results. We analyzed if there was any difference in MTR values between Pompe patients and healthy controls in those muscles that did not have an increase in fat, a measure that could be related to the presence of glycogen in skeletal muscles, but we did not identify significant differences except in the adductor magnus muscle (48.4 ± 3.6 in Pompe vs. 51 ± 1.3 in healthy controls, Student T-test = 0.023). Conclusions: MTR is a sensitive tool to identify muscle loss in patients with Pompe disease and shows a good correlation with muscle function tests. Therefore, the MT technique can be useful in monitoring muscle degeneration in Pompe disease in clinical trials or natural history studies.
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The World Health Organization recommends that "palliative care should be integrated as a routine element of all Undergraduate Medical Education." However, the provision of training for medical undergraduates is variable; only 18% of 51 European countries have mandatory training in palliative medicine. EDUPALL is an ERASMUS+ funded international collaborative project to develop and pilot an undergraduate program for training in palliative medicine. The objective of this study was to critically review and revise current European Association for Palliative Care (EAPC) Recommendations for the Development of Undergraduate Curricula in Palliative Medicine and translating these into an updated curriculum document. Clinicians, academics, and researchers from Romania, Ireland, Germany, Austria, Spain, and the United Kingdom reviewed the EAPC recommendations using a variant of consensus methodology, Nominal Group Technique. From the updated document, four working-groups translated each recommendation into a specific learning objective, and developed associated learning outcomes, stratified by domain: attitude, cognition, and skills. The outcomes and objectives were organized into discrete teaching units and transferred into a curriculum template, identifying notional hours, teaching, and assessment strategies. To ensure quality control, the draft template was circulated to experts from 17 European countries, together with a brief survey instrument, for peer review purposes. All 17 reviewers returned overwhelmingly positive comments. There was large agreement that: the teaching units were logically organized; learning outcomes covered core training needs; learning objectives provided guidance for teaching sessions; learning modalities were appropriately aligned; and assessment strategies were fit for purpose. An updated and standardized curriculum was developed, which provides a platform for the sequential development of the next phases of the EDUPALL project.
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Educação de Graduação em Medicina , Medicina Paliativa , Currículo , Europa (Continente) , Alemanha , Humanos , Cuidados Paliativos , Espanha , Reino UnidoRESUMO
BACKGROUND: Late-onset Pompe disease (LOPD) is a genetic disorder characterized by progressive degeneration of the skeletal muscles produced by a deficiency of the enzyme acid alpha-glucosidase. Enzymatic replacement therapy with recombinant human alpha-glucosidase seems to reduce the progression of the disease; although at the moment, it is not completely clear to what extent. Quantitative muscle magnetic resonance imaging (qMRI) is a good biomarker for the follow-up of fat replacement in neuromuscular disorders. The aim of this study was to describe the changes observed in fat replacement in skeletal muscles using qMRI in a cohort of LOPD patients followed prospectively. METHODS: A total of 36 LOPD patients were seen once every year for 4 years. qMRI, several muscle function tests, spirometry, activities of daily living scales, and quality-of-life scales were performed on each visit. Muscle MRI consisted of two-point Dixon studies of the trunk and thigh muscles. Computer analysis of the images provided the percentage of muscle degenerated and replaced by fat in every muscle (known as fat fraction). Longitudinal analysis of the measures was performed using linear mixed models applying the Greenhouse-Geisser test. RESULTS: We detected a statistically significant and continuous increase in mean thigh fat fraction both in treated (+5.8% in 3 years) and in pre-symptomatic patients (+2.6% in 3years) (Greenhouse-Geisser p < 0.05). As an average, fat fraction increased by 1.9% per year in treated patients, compared with 0.8% in pre-symptomatic patients. Fat fraction significantly increased in every muscle of the thighs. We observed a significant correlation between changes observed in fat fraction in qMRI and changes observed in the results of the muscle function tests performed. Moreover, we identified that muscle performance and mean thigh fat fraction at baseline visit were independent parameters influencing fat fraction progression over 4 years (analysis of covariance, p < 0.05). CONCLUSIONS: Our study identifies that skeletal muscle fat fraction continues to increase in patients with LOPD despite the treatment with enzymatic replacement therapy. These results suggest that the process of muscle degeneration is not stopped by the treatment and could impact muscle function over the years. Hereby, we show that fat fraction along with muscle function tests can be considered a good outcome measures for clinical trials in LOPD patients.
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Doença de Depósito de Glicogênio Tipo II/diagnóstico por imagem , Imageamento por Ressonância Magnética/métodos , Músculo Esquelético/fisiopatologia , Animais , Modelos Animais de Doenças , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Estudos ProspectivosRESUMO
INTRODUCTION: The benefits of palliative care rely on how healthcare professionals assess patients' needs in the initial encounter/s; crucial to the design of a personalised therapeutic plan. However, there is currently no evidence-based guideline to perform this needs assessment. We aim to design and evaluate a proactive and systematic method for the needs assessment using quality guidelines for developing complex interventions. This will involve patients, their relatives and healthcare professionals in all phases of the study and its communication to offer clinical practice a reliable approach to address the palliative needs of patients. METHODS AND ANALYSIS: To design and assess the feasibility of an evidence-based, proactive and systematic Multidimensional needs Assessment in Palliative care (MAP) as a semistructured clinical interview guide for initial palliative care encounter/s in patients with advanced cancer. This is a two-phase multisite project conducted over 36 months between May 2019 and May 2022. Phase I includes a systematic review, discussions with stakeholders and Delphi consensus. The evidence gathered from phase I will be the basis for the initial versions of the MAP, then submitted to Delphi consensus to develop a preliminary guide of the MAP for the training of clinicians in the feasibility phase. Phase II is a mixed-methods multicenter feasibility study that will assess the MAP's acceptability, participation, practicality, adaptation and implementation. A nested qualitative study will purposively sample a subset of participants to add preliminary clues about the benefits and barriers of the MAP. The evidence gathered from phase II will build a MAP user guide and educational programme for use in clinical practice. ETHICS AND DISSEMINATION: Ethical approval for this study has been granted by the university research ethics committee where the study will be carried out (approval reference MED-2018-10). Dissemination will be informed by the results obtained and communication will occur throughout.
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Avaliação das Necessidades , Neoplasias , Cuidados Paliativos , Técnica Delphi , Humanos , Estudos Multicêntricos como Assunto , Neoplasias/terapia , Pesquisa Qualitativa , Projetos de Pesquisa , Revisões Sistemáticas como AssuntoRESUMO
Background: Delirium in advanced cancer inpatient ranges between 13% and 85%. Reasons for this variability on the reported data could be related to the setting where they are admitted. Methods: This is an observational, comparative, prospective study on delirium diagnosis and delirium course of advanced cancer inpatients in two different palliative care settings. Hospice (C1) versus palliative care supportive team (C2). Differences between delirium precipitants, delirium treatment, and delirium survival were observed. Results: From 582 consecutive admissions, 494 from C1 and 88 from C2, finally 227 patients met inclusion criteria, were entered in the study. Total population delirium rate at admission, if we add both centers, was 57 patients (25%), 46 (26%) from C1 and 11 (22%) from C2; no statistically significant differences between delirium rate at admission between the two centers were found (χ2). When delirium course between delirious patients admitted in C1 and C2 was analyzed, a significantly higher rate of delirium reversibility was found in C2 [11/14 (78%)] versus [9/65 (14%)] in C1 (χ2p ≤ 0.001). Conclusion: The frequency of delirium at admission and during the hospitalization in advanced cancer patients does not seem to be related to the setting, what seems to be related is the delirium course.
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Delírio , Neoplasias , Delírio/epidemiologia , Hospitalização , Humanos , Neoplasias/complicações , Cuidados Paliativos , Estudos ProspectivosRESUMO
Introduction: Quality medical education, centered on a patient's needs, is crucial to develop the health professionals that our society requires. Research suggests a strong contribution of palliative care education to professionalism. The aim of this study was to design and validate a self-report inventory to measure student's professional development. Method: Sequential exploratory strategy mixed method. The inventory is built based on the themes that emerged from the analysis of four qualitative studies about nursing and medical students' perceptions related to palliative care teaching interventions (see Ballesteros et al. 2014, Centeno et al. 2014 and 2017, Rojí et al. 2017). The structure and psychometrics of the inventory obtained is tested in two different surveys with two different groups of medical students. Inventory reliability and construct validity are tested in the first survey group. To verify the inventory structure, a confirmatory factor analysis is performed in a second survey group. Results: The inventory has 33 items and seven dimensions: a holistic approach, caring for and understanding the patient, personal growth, teamwork, decision-making, patient evaluation, and being a health care professional. Cronbach's-alpha was 0.73-0.84 in all seven domains, ICC: 0.95. The confirmatory factor analysis comparative fit index (CFI) was 1 with a standardized root mean square Index 0.088 (SRMR) and obtained a 0.99 goodness-of-fit R-square coefficient. Conclusions: this new inventory is grounded on student's palliative care teaching experiences and seems to be valid to assess student's professional development.
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Atitude do Pessoal de Saúde , Educação de Graduação em Medicina/organização & administração , Cuidados Paliativos , Profissionalismo , Estudantes de Medicina , Adulto , Análise Fatorial , Feminino , Pessoal de Saúde , Humanos , Masculino , Psicometria , Pesquisa Qualitativa , Reprodutibilidade dos Testes , Inquéritos e QuestionáriosRESUMO
PURPOSE OF REVIEW: The aim of this review is to understand how palliative care teaching (PCT) as a patient-centered learning model, influences medical undergraduate students' professional development. RECENT FINDINGS: To study PCT medical undergraduate students' learning experiences, we have employed the medical teaching concept, 'hidden curriculum,' as a way of describing attitudes and behavior conveyed implicitly by palliative care educators. Fifteen studies were selected: ten of those studies used a qualitative approach; two are theoretical explanations of the topic explored, one guideline, one review and just one quantitative study, made up the review. Medical undergraduate students reported that after PCT, they felt they had acquired better attitudes for effective integration with the patient, such as empathy or holistic care; ethical principles, such as respect or humanization of their clinical practice; and commitment to an improvement in competences, such as self-awareness or self-esteem. They also reported improved behavior in effective integration with patients, such as communication, caring for patients' families, and when addressing psychosocial, cultural and spiritual aspects; their commitment to improvement in competences, such as dealing with emotions and uncertainty; they learned team work as an effective way to interact within the health system; and to become more reliable, making themselves more available and dedicating enough time to each patient. SUMMARY: PCT seems to be an effective way of fostering medical undergraduate students' patient-centered professional development.
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Atitude do Pessoal de Saúde , Educação de Graduação em Medicina/organização & administração , Cuidados Paliativos/organização & administração , Estudantes de Medicina/psicologia , Comunicação , Currículo , Empatia , Humanos , Profissionalismo , Ensino/organização & administraçãoRESUMO
BACKGROUND: In Europe in recent decades, university teaching of palliative medicine (PM) has evolved. In some countries it has been introduced as a compulsory subject in all medical schools, but in a majority of countries it remains an isolated subject at few universities. OBJECTIVE: To explore how PM has been introduced into the curricula and how it is currently being taught at different European universities. METHOD: Case study method using face-to-face semistructured interviews with experienced PM professors, comparing how they have developed PM undergraduate programs at their universities. RESULTS: An intentional sample of eight university professors from Spain, France, UK, Italy, Hungary, Sweden, Germany, and Poland was chosen. The introduction of PM in the universities depends on the existence of a favorable social and political context in relation to palliative care and the initiative of pioneers, trusted by students, to push this education forward. A PM curriculum frequently starts as an optional subject and becomes mandatory in a short period. In the reported universities, PM uses a wide variety of teaching methods, such as lectures, workshops, role-plays, and discussions. PM assessment included tests, discussions, reflections, portfolios, and research works. According to respondents' opinions, lack of recognition, funding, and accredited teachers, along with competition from other curricula, are the main barriers for palliative medicine teaching development at universities. CONCLUSION: Diverse paths and tools have been identified for PM teaching in Europe. The described cases may shed light on other medical schools to develop PM curricula.
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Educação de Graduação em Medicina/métodos , Medicina Paliativa/educação , Currículo , Europa (Continente) , Humanos , Entrevistas como Assunto , UniversidadesRESUMO
BACKGROUND: Although Memorial Delirium Assessment Scale (MDAS) is a successful tool for delirium evaluation and monitoring, it is nevertheless important to determine whether cutoff scores vary according to the studied population. The main objective of this study was to evaluate the diagnostic sensitivity of the recently validated Spanish version of the MDAS. The secondary objective was to analyze possible diagnostic differences when used in a hospice or general hospital setting. METHODOLOGY: A prospective study was conducted with advanced cancer patients in two settings (hospice and general hospital). A diagnosis of delirium was established according to clinical criteria and the Confusion Assessment Method. Sensitivity (S), specificity (Sp), positive predictive value, and negative predictive value were determined according to the receiver operating characteristics curve. The MDAS values for different centers were studied using nonparametric tests (Mann-Whitney). RESULTS: A total of 67 patients were included, 28 of whom had been diagnosed with delirium (15/40 hospice and 13/27 general hospital). The mean MDAS scores were 13.6 and 5.5 for the delirium and nondelirium groups, respectively. A cutoff score of 7 gave the optimal screening diagnosis balance (S 92.6%, Sp 71.8%, positive predictive value 70.1%, and negative predictive value 93.3%). Diagnoses of anxiety and depression were not related with delirium (P ≤ 0.44). A diagnosis of dementia was related to delirium (P ≤ 0.052) but did not influence the diagnostic sensitivity of MDAS (P ≤ 0.26). No differences were found between hospice and general hospital settings as regards the diagnostic sensitivity of MDAS. CONCLUSION: A screening cutoff of 7 appears to be optimal for MDAS Spanish version. No differences were found between advanced cancer patients cared for in a hospice or general hospital. However, more research is required to define the MDAS cutoff for patients with advanced cancer and dementia.
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Delírio/diagnóstico , Idoso , Idoso de 80 Anos ou mais , Delírio/complicações , Diagnóstico Diferencial , Feminino , Cuidados Paliativos na Terminalidade da Vida , Hospitalização , Humanos , Masculino , Neoplasias/complicações , Neoplasias/diagnóstico , Estudos Prospectivos , Sensibilidade e EspecificidadeRESUMO
OBJECTIVE: Knowledge of symptom prevalence and adequate assessment of such symptoms at the end of life is important in clinical practice. We determined the frequency and severity of symptom distress and delirium using the Edmonton Assessment Scale (ESAS) and the Memorial Delirium Assessment Scale (MDAS) and evaluated the clinical utility of the Nursing Delirium Screening Scale (Nu-DESC) as scored by a caregiver as a screening tool for delirium. METHOD: We conducted a secondary analysis of the data from a previous randomized controlled trial on parenteral hydration at the end of life of patients admitted to home hospice. Only patients that had assessments within the last week of life were included. We collected the ESAS, MDAS, Nu-DESC, and Richmond Agitation Sedation Scale (RASS) results. The sensitivity and specificity of the Nu-DESC were then calculated. RESULTS: Some 78 of 261 patients were included in our study, 62 (80%) of which had moderate-to-severe symptoms corresponding to an ESAS score >4. These symptoms include: 73 (94%) anorexia, 63 (81%) fatigue, 56 (73%) drowsiness, 58 (75%) decreased well-being, and 39 (51%) pain. Delirium was diagnosed in 34 (44%) of patients using the MDAS. The Nu-DESC was found to have a sensitivity of 35%, a specificity of 80%, a positive predictive value (PPV) of 58%, and an negative predictive value (NPV) of 61% when used by caregivers. SIGNIFICANCE OF RESULTS: Hospice patients at the end of life have a high rate of symptom distress and delirium. The Nu-DESC is not a reliable tool for screening delirium when scoring is conducted by a caregiver. Our study illustrates the need for routine use of assessment tools to improve care.
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Delírio/epidemiologia , Cuidados Paliativos na Terminalidade da Vida , Neoplasias/enfermagem , Agitação Psicomotora/epidemiologia , Estresse Psicológico/epidemiologia , Assistência Terminal , Idoso , Idoso de 80 Anos ou mais , Feminino , Assistência Domiciliar , Humanos , Masculino , Pessoa de Meia-Idade , Valor Preditivo dos Testes , Estudos Retrospectivos , Sensibilidade e Especificidade , Índice de Gravidade de Doença , Inquéritos e QuestionáriosRESUMO
CONTEXT: Studies to determine the decisional control preferences (DCPs) in Hispanic patients receiving palliative care are limited. OBJECTIVES: The aims of this study were to describe DCPs, disclosure of information, and satisfaction with decision making among Hispanics and to determine the degree of concordance between patients' DCPs and their self-reported decisions. METHODS: We surveyed 387 cancer patients referred to outpatient palliative care clinics in Argentina, Chile, Guatemala, and the U.S. DCPs were measured with the Control Preference Scale, disclosure preferences with the Disclosure of Information Preferences questionnaire, and satisfaction with care with the Satisfaction with Decision Scale. RESULTS: In this study, 182 patients (47.6%) preferred shared decisional control, 119 (31.2%) preferred active decisional control, and 81 (21.2%) preferred a passive approach. Concerning their diagnosis and prognosis, 345 (92%) patients wanted to know their diagnosis, and 355 (94%) wanted to know their prognosis. Three hundred thirty-seven (87%) patients were satisfied with the decision-making process. DCPs were concordant with the self-reported decision-making process in 264 (69%) patients (weighted kappa = 0.55). Patients' greater satisfaction with the decision-making process was correlated with older age (P ≤ 0.001) and with a preference for enhanced diagnostic disclosure (P ≤ 0.024). Satisfaction did not correlate with concordance in the decision-making process. CONCLUSION: The vast majority preferred a shared or active decision-making process and wanted information about their diagnosis and prognosis. Older patients and those who wanted to know their diagnosis seemed to be more satisfied with the way treatment decisions were made.
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Tomada de Decisões , Hispânico ou Latino/psicologia , Neoplasias/terapia , Cuidados Paliativos/psicologia , Participação do Paciente , Satisfação do Paciente/etnologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Argentina , Chile , Estudos Transversais , Feminino , Guatemala , Hispânico ou Latino/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/diagnóstico , Neoplasias/etnologia , Neoplasias/psicologia , Cuidados Paliativos/estatística & dados numéricos , Participação do Paciente/estatística & dados numéricos , Satisfação do Paciente/estatística & dados numéricos , Autorrelato , Estados Unidos , Adulto JovemRESUMO
CONTEXT: The Memorial Delirium Assessment Scale (MDAS) is a reliable and validated instrument with which to assess delirium. However, MDAS responsiveness has only been investigated in an indirect way. Also, neurobehavioral and global cognitive factors seem to be the MDAS main factor loads. OBJECTIVES: The primary objective of this study was to evaluate MDAS responsiveness and analyze individual factors on this scale. The secondary objective was to confirm concurrent validity and reliability of the Spanish version of the MDAS. METHODS: The translation-back translation method was used to obtain the Spanish version of the MDAS. Delirium diagnosis was determined by the clinical Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision criteria and with the Confusion Assessment Method. Responsiveness and factor loadings were determined with the Delirium Rating Scale-Revised-98, the Mini-Mental State Examination (MMSE), and the MDAS at baseline (0 hours) and at 72 hours. RESULTS: Variation in the scores of the Delirium Rating Scale-Revised-98 shows a correlation of r = 0.93, with variation in MDAS scores at P < 0.001. Variation in MMSE scores shows a correlation of r = -0.84, with variation in MDAS scores at P = 0.015. Factor I, neurobehavioral (reduced awareness, reduced attention, perceptual disturbance, delusions, altered psychomotor activity, and sleep-wake cycle disturbance), correlated moderately with the MMSE at -0.56. Factor II, global cognitive (disorientation, short-term memory impairment, impaired digit span, and disorganized thinking), correlated strongly with the MMSE at -0.81. Factor II was significantly more reliable than Factor I, rho = 0.7, P = 0.01. CONCLUSION: The high responsiveness confirms the value of the MDAS for ongoing delirium assessment. Two differentiated factor loadings point to a potential future need for MDAS subscales.
Assuntos
Delírio/diagnóstico , Idioma , Escalas de Graduação Psiquiátrica , Idoso , Delírio/complicações , Manual Diagnóstico e Estatístico de Transtornos Mentais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/complicações , Testes Neuropsicológicos , Cuidados Paliativos , Psicometria , Reprodutibilidade dos TestesRESUMO
BACKGROUND: Understanding family caregivers' decisional role preferences is important for communication, quality of care, and patient and family satisfaction. The family caregiver has an important role in a patient's decisional role preferences. There are limited studies on family caregivers' preferences of the patient's decision control at the end of life among Hispanics. AIMS: To identify Hispanic caregivers' preferences of the decision control of patients with advanced cancer and to compare the preferences of caregivers in Hispanic Latin American and Hispanic American caregivers. DESIGN: We surveyed patients and their family caregivers referred to outpatient palliative care clinics in the United States, Chile, Argentina, and Guatemala. Caregiver preferences of patient's decision control were evaluated using the Control Preference Scale. Caregivers' and patients' sociodemographic variables, patient performance status, and Hispanic American patient acculturation level were also collected. PARTICIPANTS: A total of 387 caregivers were surveyed: 100 (26%) in Chile, 99 (26%) in Argentina, 97 (25%) in Guatemala, and 91 (24%) in the United States. The median age was 56 years, and 59% were female. RESULTS: Caregiver preference of patient's decision control was passive, shared, and active for 10 (11%), 45 (52%), and 32 (37%) Hispanic American caregivers and 54 (19%), 178 (62%), and 55 (19%) Hispanic Latin American caregivers (p = 0.0023), respectively. Caregiver acculturation level did not affect the preferences of the Hispanic American sample (p = 0.60). CONCLUSIONS: Most Hispanic family caregivers preferred the patient to make shared decisions. Hispanic Latin American caregivers more frequently preferred patients to assume a passive decisional role. Acculturation did not influence the preferences of Hispanic American caregivers.