Epidemiological Modeling of the Impact of Public Health Policies on Hepatitis C: Protocol for a Gamification Tool Targeting Microelimination.

BACKGROUND: Hepatitis C is a disease with a strong social component, as its main transmission route is via blood, making it associated with lifestyle. Therefore, it is suitable to be worked on from the perspective of public health policy, which still has a lot of room to explore and improve, contrary to diagnoses and treatments, which are already very refined and effective. OBJECTIVE: An interactive gamified policy tool, designated as Let's End HepC (LEHC), was created to understand the impact of policies related to hepatitis C on the disease's epidemiology on a yearly basis until 2030. METHODS: To this end, an innovative epidemiological model was developed, integrating Markov chains to model the natural history of the disease and adaptive conjoint analysis to reflect the degree of application of each of the 24 public health policies included in the model. This double imputation model makes it possible to assess a set of indicators such as liver transplant, incidence, and deaths year by year until 2030 in different risk groups. Populations at a higher risk were integrated into the model to understand the specific epidemiological dynamics within the total population of each country and within segments that comprise people who have received blood products, prisoners, people who inject drugs, people infected through vertical transmission, and the remaining population. RESULTS: The model has already been applied to a group of countries, and studies in 5 of these countries have already been concluded, showing results very close to those obtained through other forms of evaluation. CONCLUSIONS: The LEHC model allows the simulation of different degrees of implementation of each policy and thus the verification of its epidemiological impact on each studied population. The gamification feature allows assessing the adequate fulfillment of the World Health Organization goals for the elimination of hepatitis C by 2030. LEHC supports health decision makers and people who practice patient advocacy in making decisions based on science, and because LEHC is democratically shared, it ends up contributing to the increase of citizenship in health. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/38521.

Hypertrophic cardiomyopathy in an adult patient with Noonan syndrome with multiple lentigines.

Noonan syndrome with multiple lentigines (NSML) is a rare RASopathy caused by pathogenic variants (PV) predominantly in PTPN11 gene. We report a 54-year-old male with apical hypertrophic cardiomyopathy, who was diagnosed with NSML due to his short stature, multiple lentigines, winged neck, pectus excavatum, and a heterozygous PV in PTPN11 c.836A > ¡G.

Review and Assessment of Policy Options for Improving Access to Combination Therapies in Oncology in Europe.

OBJECTIVES: Combinations of on-patent therapies (CTs) are increasingly common in oncology. They cause challenges for funding and affordability, and hence patient access, especially when constituent therapies are owned by different manufacturers. The aim of our study was to develop policy proposals for the assessment, pricing, and funding of CTs and identify which might be relevant in different European countries. METHODS: Following a review of available literature, seven hypothetical policy proposals were developed and subsequently assessed through 19 semi-structured interviews with health policy, pricing, technology assessment and legal experts in seven European countries to identify those most likely to gain traction. RESULTS: Experts saw a need for agreed approaches within a country to manage affordability and funding challenges for CTs. Changes to health technology assessment (HTA) and funding models were considered unlikely, but other policy proposals were seen as mostly useful, with country-specific adaptations. Bilateral discussions between manufacturers and payers were deemed important, and less challenging and protracted than arbitrated dialogue between manufacturers. Usage-specific pricing, possibly using weighted average prices, was considered a prerequisite for the financial management of CTs. CONCLUSIONS: There is a growing need to ensure that CTs are affordable to health systems. It would appear that there is no one set of policies that is appropriate for all countries in Europe, so countries wishing to ensure that patients have (or continue to have) access to CTs of value to them must explore and implement the policies that are best suited to their general approach to funding health care and to the assessment and reimbursement of medicines.

Cost-effectiveness Analysis of Ocrelizumab for the Treatment of Relapsing and Primary Progressive Multiple Sclerosis in Portugal.

OBJECTIVES: Ocrelizumab demonstrated significant clinical benefit for the treatment of relapsing (RMS) and primary progressive (PPMS) multiple sclerosis (MS), an incurable disease characterized by disability progression. This study evaluated the clinical and economic impact of ocrelizumab relative to current clinical practice, including other disease-modifying therapies (DMT), available in Portugal. METHODS: Markov models for MS were adapted to estimate the impact of ocrelizumab across three patient populations: treatment-naïve RMS, previously treated RMS, and PPMS. Health states were defined according to the Expanded Disability Status Scale. For RMS, the model further captured the occurrence of relapses and progression to secondary progressive multiple sclerosis (SPMS). A lifetime time-horizon and Portuguese societal perspective were adopted. RESULTS: For RMS patients, ocrelizumab was estimated to maximize the expected time (years) without progression to SPMS (10.50) relative to natalizumab (10.10), dimethyl fumarate (8.64), teriflunomide (8.39), fingolimod (8.38), interferon ß-1a (8.33) and glatiramer acetate (8.18). As the most effective option, with quality-adjusted life year (QALY) gains between 0.3 and 1.2, ocrelizumab was found to be cost-saving relative to natalizumab and fingolimod, and presented incremental cost-effectiveness ratios (ICER) below €16,720/QALY relative to the remaining DMT. For PPMS patients, the ICER of ocrelizumab versus best supportive care was estimated at €78,858/QALY. CONCLUSIONS: Ocrelizumab provides important health benefits for RMS and PPMS patients, comparing favourably with other widely used therapies. In RMS, ocrelizumab was revealed to be either cost-saving or have costs-per-QALY likely below commonly accepted cost-effectiveness thresholds. In PPMS, ocrelizumab fills a clear clinical gap in the current clinical practice. Overall, ocrelizumab is expected to provide good value for money in addressing the need of MS patients.

Debriefing virtual: uma análise da percepção dos estudantes de enfermagem sobre sua utilização* / Debriefing virtual: un análisis de la percepción de los estudiantes de enfermería sobre su utilización / Virtual debriefing: an analysis of nursing students' perception of its use

Objetivo: avaliar o debriefing virtual, realizado com estudantes de enfermagem que participaram como observadores em um cenário de simulação, gravado, sobre rebaixamento do nível de consciência por hipoglicemia. Método: estudo com delineamento transversal descritivo na fase quantitativa, e exploratório-descritivo na fase qualitativa entre 2020 e 2021, com 60 estudantes de graduação em enfermagem que assistiram a um cenário gravado e vivenciaram um debriefing virtual. Foram aplicados dois instrumentos de avaliação do debriefing, e na abordagem qualitativa utilizou-se análise pelo Iramuteq. Resultados: na Escala de Avaliação do Debriefing Associada à Simulação, a média geral de avaliação foi 4,25, mostrando que os participantes tiveram uma percepção positiva. Na Escala de Experiência com o Debriefing, a avaliação geral foi 4,38 sugerindo que foi uma estratégia útil. Conclusão: os estudantes apontaram o debriefing virtual como uma estratégia positiva para o aprendizado.

Objective: to evaluate the virtual debriefing, performed with nursing students who participated as observers in a simulation scenario, recorded, on lowering the level of consciousness by hypoglycemia. Method: study with descriptive cross-sectional design in the quantitative phase, and exploratory-descriptive in the qualitative phase between 2020 and 2021, with 60 nursing graduate students who attended a recorded scenario and, after, experienced a virtual debriefing. Two instruments were applied to evaluate the debriefing, and the qualitative approach used analysis by Iramuteq. Results: on the Simulation-Associated Debriefing Evaluation Scale, the overall mean of evaluation was 4.25, showing that the participants had a positive perception. And in the Debriefing Experience Scale, the overall assessment was 4.38, suggesting that debriefing was a useful strategy. Conclusion: students pointed to virtual debriefing as a positive strategy for learning.

Objetivo: evaluar el debriefing virtual, realizado con estudiantes de enfermería que participaron como observadores en un escenario de simulación, grabado, sobre descenso del nivel de conciencia por hipoglucemia. Método: estudio con delineamiento transversal descriptivo en la fase cuantitativa, y exploratorio-descriptivo en la fase cualitativa entre 2020 y 2021, con 60 estudiantes de graduación en enfermería que asistieron a un escenario grabado y, después, experimentaron un debriefing virtual. Se aplicaron dos instrumentos de evaluación del debriefing, y en el enfoque cualitativo se utilizó el análisis del Iramuteq. Resultados: en la Escala de Evaluación del Debriefing Asociada a la Simulación, la media general de evaluación fue 4,25, mostrando que los participantes tuvieron una percepción positiva. En la Escala de Experiencia con Debriefing, la evaluación general fue 4,38 sugiriendo que fue una estrategia útil. Conclusión: los estudiantes señalaron el debriefing virtual como una estrategia positiva para el aprendizaje.

Fatores estressores de estudantes de enfermagem em diferentes cenários simulados

Objetivo: Comparar a percepção de fatores estressores de estudantes de enfermagem antes e após sua experiência em cinco cenários diferentes de simulação. Material e Método: Pesquisa de intervenção, longitudinal e quantitativa, realizado com uma amostra por conveniência de 35 estudantes de enfermagem de uma universidade do sul do Brasil. O critério de inclusão foi estar matriculado no curso Saúde do Adulto e do Idoso do sexto semestre do programa de Enfermagem, que tem duração de 10 semestres. O critério de exclusão foi ter formação prévia em um programa com competências em exame clínico. O critério de descontinuidade foi a ausência de pelo menos uma experiência simulada. O questionário KEZKAK, validado em português e adaptado com 31 itens para estudos de simulação, foi utilizado para avaliar a percepção de fatores estressores durante cinco cenários simulados sobre suporte básico e avançado de vida. Resultados: Após experiência dos estudantes em cinco diferentes cenários de simulação, observou-se uma redução significativa na percepção dos seguintes estressores: falta de competência (p= 0,0329); contato com o sofrimento (p= 0,0279); relacionamento com tutores e companheiros (p= 0,4699 / p= 0,0135 respectivamente); e ser magoado no relacionamento com o paciente (p= 0,0110). Conclusões: A execução de cenários variados e com nível progressivo de complexidade, pode ajudar a reduzir os fatores de estresse percebidos pelos estudantes de enfermagem durante as atividades de simulação clínica.

Objective: To compare the perception of nursing students before and after their experience in five different simulation scenarios. Materials and Methods: Interventional, longitudinal and quantitative research, conducted with a convenience sample of 35 nursing students from a university in the south of Brazil. The inclusion criterion was to be enrolled in the course Adult and Elderly Health of the sixth semester of the graduate Nursing program, which has a duration of 10 semesters. The exclusion criterion was having previous training in a program with competencies in clinical examination. The discontinuity criterion was the absence of at least one simulated experience. To assess the perception of stressors during simulated scenarios in basic and advanced life support, the KEZKAK questionnaire, validated in Portuguese and adapted with 31 items for simulation studies, was used. Results: After experiencing five different simulation scenarios, there was a significant reduction in the perception of the following stressors: lack of competence (p= 0.0329); contact with suffering (p= 0.0279); relationship with tutors and peers (p= 0.4699 / p= 0.0135 respectively); and hurt feelings in the relationship with the patient (p= 0.0110). Conclusions: Performing varied scenarios with increasing levels of complexity may help to reduce the stressors perceived by nursing students during clinical simulation activities.

Objetivo: Comparar la percepción de factores estresantes en estudiantes de enfermería antes y después de su experiencia en cinco escenarios diferentes de simulación. Material y Método: Investigación de intervención, longitudinal y cuantitativa, realizada con una muestra por conveniencia de 35 estudiantes de enfermería de una Universidad del Sur de Brasil. El criterio de inclusión fue estar matriculado en la asignatura de Salud del Adulto y Adulto Mayor del sexto semestre de la carrera de Enfermería que tiene un total de 10 semestres de formación. El criterio de exclusión fue tener formación previa em una carrera com competencias en examen clínico. El criterio de discontinuidad fue la ausencia en al menos una experiencia simulada. Para evaluar la percepción de estresores durante los escenarios simulados en soporte vital básico y avanzado, se utilizó el cuestionario KEZKAK validado en lengua portuguesa, adaptado com 31 ítems para estudios en el ámbito de la simulación. Resultados: Después de la experiencia en cinco escenarios diferentes de simulación, hubo una reducción significativa en la percepción de los siguientes factores estresantes: falta de competencia (p= 0,0329); contacto con el sufrimiento (p= 0,0279); relación con tutores y compañeros (p= 0,4699 / p=0,0135); y sentirse herido en la relación con el paciente (p= 0,0110). Conclusiones: La ejecución de escenarios variados y con un nivel de complejidad progresivo, puede ayudar a reducir los estresores que perciben los estudiantes de enfermería durante las actividades de simulación clínica.

Headache related to personal protective equipment in healthcare workers during COVID-19 pandemic in Mexico: baseline and 6-month follow-up.

BACKGROUND AND AIM: Headaches related to the use of personal protective equipment (PPE) could affect performance at work in healthcare personnel. Our aim was to describe the prevalence and risk factors for headaches related to PPE, in the personnel of a specialized coronavirus disease 2019 (COVID-19) tertiary hospital. METHODS: In this cross-sectional survey study, we invited healthcare workers from COVID-19 referral center in Mexico (May 22-June 19, 2020) to answer a standardized structure questionnaire on characteristics of new-onset PPE-related headache or exacerbation of primary headache disorder. Participants were invited regardless of whether they had a current headache to avoid selection bias. This is the primary analysis of these data. RESULTS: Two hundred and sixty-eight subjects were analyzed, 181/268 (67.5%) women, 177/268 (66%) nurses, mean age 28 years. The prevalence of PPE-related headache was 210/268 (78.4%). Independent risk factors were occupation other than physician (OR 1.59, 95% CI 1.20-2.10), age > 30 years (OR 2.54, 95% CI 1.25-5.14), and female sex (OR 3.58, 95% CI 1.86-6.87). In the 6-month follow-up, 13.1% of subjects evolve to chronic headache, with stress as predictive risk factor. CONCLUSION: The frequency of PPE-associated headache is high, and a subgroup could evolve to chronic headache. More studies are necessary to improve the knowledge about this condition.

Hope and depression in Brazilian head and neck cancer patients during the COVID-19 pandemic.

Introduction: Head and neck cancer is characterised as traumatic, when compared to other types of cancer, due to the physical, physiological and social impact it has on the patient. Objective: To evaluate hope and severe depression in patients with head and neck cancer during the COVID-19 pandemic. Method: Quantitative, observational, and analytical; conducted in the outpatient department of the head and neck department of an oncological hospital in the city of Curitiba, Paraná, Brazil, with 60 patients with head and neck cancer being treated with chemotherapy and radiotherapy. Data collection took place between May and September 2020, with the application of three questionnaires: socio-demographic and clinical; Patient Health Questionnaire-9 (PHQ-9), to evaluate severe depression; and the Herth hope scale. Data analysis was through descriptive statistics and non-parametric Mann- Whitney, Kruskal-Wallis and Spearman correlation tests. Results: The age of participants ranged from 34 to 85 years, with 61.7% being male. The diagnosis of cancer occurred in the oral cavity (53.3%) and larynx (33.3%); 28.3% (n = 1 7) presented with a diagnosis of depression; 8.6% (n = 5) are in treatment with psychology; and 10.3% (n = 6) are in treatment with psychotropic drugs. The analysis of the association of the PHQ-9 score with sex showed a mean score of 7.7 ± 6.2, with a higher level of depression in women. The mean hope score was 41.3 ± 3.1; however, during the pandemic, 35% (n = 21) reported feelings of anguish, anxiety and fear, with the latter being predominant and in association with the PHQ-9 score showing a mean of 8.2 ± 6.2 (p = 0.123). The association of hope with the number of children was statistically significant (p = 0.034) and in the education variable with the PHQ-9 score (p = 0.019). Conclusion: The use of tools that assess both levels of hope and depression in patients undergoing chemotherapy and radiotherapy provides health professionals with support for the implementation of targeted actions to cope with the disease.

Quality of life and informal care burden associated with duchenne muscular dystrophy in Portugal: the COIDUCH study.

BACKGROUND: To describe the reduced health-related quality of life (HRQoL) of duchenne muscular dystrophy (DMD) patients and their caregiver burden and to present its relationship with disease progression. METHODS: This cross-sectional study assessed patient HRQoL with the 3-level version of the EuroQol-5D (EQ-5D-3L) and caregiver burden with the Work Productivity and Activity Impairment: General Health questionnaire. DMD patients and their caregivers were identified through Portuguese Neuromuscular Association (APN). RESULTS: A total of 46 DMD main caregivers, of eight ambulant and 38 non-ambulant patients, completed the questionnaires. Over half (58.7%) of all non-ambulant patients were on ventilation support, either full-time (15.2%) or non full-time (43.5%). Non-ambulant patients had a lower mean utility scores than ambulant patients (- 0.05 versus 0.51, p value < 0.001). Caregivers of non-ambulant patients reported a significant mean daily activity impairment as compared to caregivers of ambulant patients (68% versus 23%, p value < 0.001). Among non-ambulant patients, both utility scores and caregiver impairment appeared to deteriorate according to a higher need for ventilation support, however, these results were not statistically significant. CONCLUSIONS: These results emphasise the significant negative impact that DMD progression has on the patient HRQoL, as well as caregivers' ability to conduct their daily activities. Therapeutic options that stop or slow the disease progression could have a beneficial impact for both patients and caregivers.

The Healthcare Failure Mode and Effect Analysis as a tool to evaluate care protocols.

OBJECTIVES: to identify, classify, and analyze modes of failure in the medication process. METHODS: evaluative research that used the Healthcare Failure Mode and Effect Analysis (HFMEA) in a service of bone marrow transplant from June to September 2018, with the participation of 35 health workers. RESULTS: 207 modes of failure were identified and classified as mistakes in verification (14%), scheduling (25.6%), administration (29%), dilution (16.4%), prescription (2.4%), and identification (12.6%). The analysis of risk showed a moderate (51.7%) and high (30.9%) need of intervention, leading to the creation of an internal quality assurance group and of continued education activities. CONCLUSIONS: the Healthcare Failure Mode and Effect Analysis showed itself to be a tool to actively identify, classify, and analyze failures in the process of medication, contributing for the proposal of actions aimed at patient safety.

Cost of Illness in Patients with Duchenne Muscular Dystrophy in Portugal: The COIDUCH Study.

OBJECTIVE: The aim of this study was to estimate the cost of illness (COI) of Duchenne muscular dystrophy (DMD) and its relation to disease progression, using age as a proxy, and according to the ambulatory status of patients. METHODS: We conducted a cross-sectional study of patients diagnosed with DMD identified through the Portuguese Neuromuscular Patients Association (APN). Data regarding patient and caregiver demographics, patient health status, resource utilization and cost, and informal care were collected using a custom semistructured questionnaire. Labor productivity and absenteeism losses were captured using the Work Productivity and Activity Impairment questionnaire. Costs were valued using a societal perspective. RESULTS: A total of 46 patient-caregiver pairs were included, of which eight of the patients were ambulant and 38 were nonambulant. Age had a decreasing effect on COI, independent of the patient's disease stage. Annualized lifetime costs were at their highest in nonambulant patients around the mean age of loss of ambulation (10 years of age). The mean per patient stage-specific costs (year 2019 values) of DMD were estimated at €48,991 in the nonambulant stage and €19,993 in the ambulant stage. Direct nonmedical costs were the main cost drivers, followed by indirect costs. CONCLUSIONS: Our results indicate a close relation between overall disease costs and disease progression. DMD is associated with a substantial economic burden, which appears to be larger around the time ambulation is lost (10 years of age). The availability of new therapeutic options that delay disease progression, especially loss of ambulation, may prove to be highly beneficial for not only patients with DMD but also their families and society.

The Healthcare Failure Mode and Effect Analysis as a tool to evaluate care protocols / El Healthcare Failure Mode and Effect Analysis como herramienta de evaluación de protocolos asistenciales / O Healthcare Failure Mode and Effect Analysis como ferramenta de avaliação de protocolos assistenciais

ABSTRACT Objectives: to identify, classify, and analyze modes of failure in the medication process. Methods: evaluative research that used the Healthcare Failure Mode and Effect Analysis (HFMEA) in a service of bone marrow transplant from June to September 2018, with the participation of 35 health workers. Results: 207 modes of failure were identified and classified as mistakes in verification (14%), scheduling (25.6%), administration (29%), dilution (16.4%), prescription (2.4%), and identification (12.6%). The analysis of risk showed a moderate (51.7%) and high (30.9%) need of intervention, leading to the creation of an internal quality assurance group and of continued education activities. Conclusions: the Healthcare Failure Mode and Effect Analysis showed itself to be a tool to actively identify, classify, and analyze failures in the process of medication, contributing for the proposal of actions aimed at patient safety.

RESUMEN Objetivos: identificar, clasificar y analizar modos de fallos en el proceso de medicación. Métodos: investigación evaluativa que utilizó el Healthcare Failure Mode and Effect Analysis (HFMEA) en Servicio de Trasplante de Médula Ósea, de junio a septiembre de 2018, con la participación de 35 profesionales de salud. Resultados: han sido identificados 207 modos de fallos, clasificados en errores de chequeo (14%); aplazamiento (25,6%); administración (29%); dilución (16,4%); prescripción (2,4%) e identificación (12,6%). El análisis del riesgo evidenció la necesidad de intervención moderada (51,7%) y alta (30,9%), resultando en la creación del equipo interno de calidad y actividades de educación continua. Conclusiones: el Healthcare Failure Mode and Effect Analysis demostró ser herramienta para identificar, clasificar y analizar, activamente, fallos en el proceso de medicación, contribuyendo para la proposición de acciones con objetivo de seguridad del paciente.

RESUMO Objetivos: identificar, classificar e analisar modos de falhas no processo de medicação. Métodos: pesquisa avaliativa que utilizou o Healthcare Failure Mode and Effect Analysis (HFMEA) em Serviço de Transplante de Medula Óssea, de junho a setembro de 2018, com a participação de 35 profissionais de saúde. Resultados: foram identificados 207 modos de falhas, classificados em erros de checagem (14%); aprazamento (25,6%); administração (29%); diluição (16,4%); prescrição (2,4%) e identificação (12,6%). A análise do risco evidenciou a necessidade de intervenção moderada (51,7%) e alta (30,9%), resultando na criação do grupo interno de qualidade e atividades de educação continuada. Conclusões: o Healthcare Failure Mode and Effect Analysis demonstrou ser ferramenta para identificar, classificar e analisar, ativamente, falhas no processo de medicação, contribuindo para a proposição de ações com vistas à segurança do paciente.

Coping Religioso/Espiritual e Qualidade de Vida dos Sobreviventes de Câncer Cinco Anos após o Transplante de Células-Tronco Hematopoiéticas / Religious/Spiritual Coping and Quality of Life of 5-Years Cancer Survivors After Hematopoietic Stem Cell Transplantation Afrontamiento / Religioso/Espiritual y Calidad de Vida de Sobrevivientes de Cáncer Cinco Años después del Trasplante de Células Madre Hematopoyéticas

Introdução: O transplante de células-tronco hematopoiéticas é um tratamento complexo, com potencial de cura, no entanto, apresenta risco significativo de complicações graves e consequente comprometimento na qualidade de vida relacionada à saúde. Diante desse cenário, é necessário que a equipe de saúde reconheça as demandas a que os pacientes estão expostos, e as estratégias de enfrentamento utilizadas, a fim de promover intervenções que objetivem a melhora da qualidade de vida relacionada à saúde e a diminuição dos desconfortos decorrentes do diagnóstico e tratamento. Objetivo: Correlacionar o uso do coping religioso/espiritual com a qualidade de vida após cinco anos da realização do transplante de células-tronco hematopoiéticas. Método: Estudo analítico e longitudinal, com 55 pacientes em um hospital de referência para o procedimento na América Latina. Coleta de dados de 2013 até 2021, com os questionários Functional Assessment of Cancer Therapy ­ Bone Marrow Transplantation e Religious/Spiritual Coping Scale. Correlações entre as variáveis pelo coeficiente de correlação de Spearman. Resultados: Trinta pacientes foram a óbito antes de completar cinco anos de tratamento. A qualidade de vida apresentou melhores índices no quinto ano (116,1/148). Houve maior uso do coping religioso/espiritual positivo (3,15/5,00). Observou-se correlação significativa negativa entre os escores de qualidade de vida (-0,624/p<0,00) e coping/religioso espiritual negativo. Conclusão: Reconhecer a multidimensionalidade do constructo qualidade de vida, incluindo o domínio espiritual, poderá auxiliar o paciente no enfrentamento da doença e do tratamento

Introduction: Hematopoietic stem cell transplantation is a complex treatment, with healing potential, however, it presents a significant risk of serious complications and consequent impairment in health-related quality of life. Given this scenario, it is necessary for the health team to recognize the demands that patients are exposed to, and the coping strategies used, in order to promote interventions that aim to improve health-related quality of life, and decrease the discomforts resulting from the diagnosis and treatment. Objective: To correlate the use of religious/spiritual coping with quality of life after five years of hematopoietic stem cell transplantation. Method: Analytical and longitudinal study, with 55 patients in a referral hospital for the procedure in Latin America. Data were collected from 2013 to 2021, with the Functional Assessment of Cancer Therapy ­ Bone Marrow Transplantation and Religious/Spiritual Coping Scale questionnaires. Correlations between variables by the Spearman's correlation coefficient. Results: 30 patients died before completing five years of treatment. Quality of life showed better rates in the fifth year (116.1/148). There was greater use of positive religious/spiritual coping (3.15/5.00). A significant negative correlation between quality-of-life scores (-0.624/p<0.00) and negative religious/spiritual coping was found. Conclusion: Recognizing the multidimensionality of the quality of life construct, including the spiritual domain, can help the patient to cope with the disease and treatment

Introducción: El trasplante de progenitores hematopoyéticos es un tratamiento complejo, con potencial curativo, sin embargo, presenta un riesgo importante de complicaciones graves y consecuente deterioro de la calidad de vida relacionada con la salud. Ante este escenario, es necesario que el equipo de salud reconozca las demandas a las que se exponen los pacientes y las estrategias de enfrentamiento utilizadas, a fin de promover intervenciones que apunten a mejorar la calidad de vida relacionada con la salud y disminuir los malestares derivados del diagnóstico y tratamiento. Objetivo: Correlacionar el uso del afrontamiento religioso/espiritual con la calidad de vida después de cinco años del trasplante de células progenitoras hematopoyéticas. Método: Estudio analítico y longitudinal, con 55 pacientes en un hospital de referencia para el procedimiento en América Latina. Recopilación de datos de 2013 a 2021, con los cuestionarios Functional Assessment of Cancer Therapy ­ Bone Marrow Transplantation y Religious/Spiritual Coping Scale. Correlaciones entre variables por el coeficiente de correlación de Spearman. Resultados: Treinta pacientes fallecieron antes de completar cinco años de tratamiento. La calidad de vida mostró mejores índices en el quinto año (116,1/148). Hubo un mayor uso del afrontamiento religioso/espiritual positivo (3,15/5,00). Hubo una correlación negativa significativa entre las puntuaciones de calidad de vida (-0,624/p<0,00) y el afrontamiento religioso/espiritual negativo. Conclusión: Reconocer la multidimensionalidad del constructo calidad de vida, incluyendo el dominio espiritual, puede ayudar al paciente a enfrentar la enfermedad y el tratamiento

SARS-CoV-2 Infection Rate in Patients With Cancer and Health Care Workers in a Chemoradiotherapy Unit During the Pandemic: A Prospective Cohort in Mexico.

PURPOSE: Cancer treatment during the COVID-19 pandemic represents a challenge. Hospital visits to receive treatment and interaction with health care workers (HCW) represent potential contagious events. We aimed to determine SARS-CoV-2 infection rate among patients with cancer and HCW of a chemoradiotherapy unit localized in a center designated as a COVID-19 priority facility in Mexico City. We also determined the diagnostic performance of a clinical questionnaire (CQ) as a screening tool and anti-SARS-CoV-2 antibody seroconversion rate. METHODS: HCW and patients with solid tumors attending the chemoradiotherapy unit signed informed consent. To determine SARS-CoV-2 infection rate prospectively, a nasopharyngeal swab for SARS-CoV-2 real-time quantitative reverse transcriptase polymerase chain reaction (RT-qPCR) was performed every 2 weeks in asymptomatics. An electronic CQ interrogating COVID-19-related symptoms was sent daily. Anti-SARS-CoV-2 immunoglobulin G (IgG) antibodies were measured at baseline and at the end of the study period. RESULTS: From June to September 2020, we included 130 asymptomatic participants, 44.6% HCW and 55.4% patients with cancer. During a median follow-up of 85 days, 634 nasopharyngeal swabs were performed. Average SARS-CoV-2 monthly incidence was 4.6% (3.15%-7.47%), and cumulative infection rate was 13.8% (18 of 130). Cases were mostly asymptomatic (66%), and no hospitalizations or deaths were recorded. The CQ as a screening tool provided a sensitivity of 27.7%, a positive predictive value of 26.3%, and a positive likelihood ratio of 12. SARS-CoV-2 IgG seroconversion rate was 27.7% among those with a positive RT-PCR. CONCLUSION: Patients with cancer on treatment can have uncomplicated COVID-19 outcomes. Biweekly RT-qPCR testing detects asymptomatic infections, prevents transmission, and should be implemented in units to increase patient safety. CQ increase RT-qPCR diagnostic yield and may prioritize testing in resource-deprived settings. Post-infection IgG seroconversion is unreliable.

Assessment of quality of life three years from hematopoietic stem cell transplant.

OBJECTIVE: To assess the domains of quality of life related to hematologic cancer patient health in the first three years from autologous and allogeneic hematopoietic stem cell transplantation. METHOD: A prospective cohort from September 2013 to February 2019 at a reference service in Latin America with 55 patients. The instruments Quality of Life Questionnaire Core C30 and Functional Assessment Cancer Therapy - Bone Marrow Transplantation were used. For data analysis, Generalized Linear Mixed Model was used. RESULTS: The domains global and overall quality of life presented the lowest scores in the pancytopenia phase: 59.3 and 91.4 in autologous, 55.3 and 90.3 in allogeneic. The mixed method analysis has shown that there was a significant change in scores between the phases throughout the treatment (p< 0.05). CONCLUSION: Health-related quality of life presented significant changes in the domains between the phases throughout time. Understanding these results enables nursing interventions directed at the domains which were damaged during treatment.

Guided imagery relaxation in quality of life of patients undergoing hematopoietic stem cell transplantation: a quasi-experiment.

OBJECTIVE: The aim of this study was to evaluate the effects of the relaxation technique with guided imagery by means of virtual reality on health-related quality of life in patients undergoing hematopoietic stem cell transplantation. METHODS: A quasi-experiment conducted in a Bone Marrow Transplantation Service of a public hospital in southern Brazil. From October 2019 to October 2020, forty-two adult participants who underwent transplantation were included, 35 in the intervention group and seven in the control group. A guided imagery intervention, with audio guiding the relaxation associated with nature images in 360º, was performed during the hospitalization period. Data were collected on the first day of hospitalization, on the transplantation day, during the neutropenia stage, and at pre-hospital discharge. The Functional Assessment of Cancer Therapy-Bone Marrow Transplantation (FACT-BMT), Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-Fatigue) and Functional Assessment of Cancer Therapy-Neutropenia (FACT-N) were used to assess health-related quality of life, fatigue and neutropenia. Data were analyzed using the Generalized Linear Mixed Model for the evolution of the health-related quality of life assessments over time, considering the groups and stages. Pearson's correlation coefficient was adopted for the correlation analyses. RESULTS: Allogeneic transplantation was predominant: 28 (80%) in the intervention group and 5 (71.43%) in the control group. There were improvements in the health-related quality of life scores, although not significant. A significant difference was found among the stages (p <0.050) and a significant positive correlation (p <0.000) among the variables on general quality of life, additional concerns, fatigue and neutropenia in all stages. CONCLUSION: Patients undergoing hematopoietic stem cell transplantation suffer changes in their quality of life. Interventions based on integrative practices emerge as an option to minimize them. 
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Quality of life and changes in the social dimension of hematopoietic stem cell transplants recipients.

OBJECTIVES: to assess/correlate health-related quality of life with the social dimension of hematopoietic, autologous and allogeneic stem cell transplant patients in the three years post-transplant. METHODS: longitudinal, observational study with 55 patients, in a reference hospital in Latin America, from September 2013 to February 2019, using the Quality of Life Questionnaire-Core and Functional Assessment Cancer Therapy Bone Marrow Transplantation. RESULTS: A total of 71% underwent allogeneic transplantation. The social dimension had low averages since the baseline stage (55, 21) and low scores (56) for quality of life in pancytopenia. There was a significant positive correlation between social dimension, quality of life in pancytopenia (p<0.01) and follow-up after hospital discharge (p<0.00). There is a significant difference (p<0.00) throughout the stages, however, not in terms of the type of transplant (p>0.36/0.86). CONCLUSIONS: patients with better assessments in the social dimension have a better quality of life. Interventions focusing on the multidimensionality of the quality of life construct are necessary.

Oral Antineoplastics: Treatment Adherence and Medication Beliefs / Antineoplásicos Orais: Adesão ao Tratamento e Crenças sobre os Medicamentos / Agentes Antineoplásicos Orales: Adherencia al Tratamiento y Creencias sobre los Medicamentos

Introduction: Adherence to oral antineoplastics (OA) is an important indicator of therapeutic response related to personal, social, and structural factors. Objective: To determine rates of adherence to OA, investigating possible risk factors for nonadherence and to assess patient beliefs about medication, identifying opportunities for pharmaceutical intervention. Method: An analytical study was conducted with cancer patients using OA in 2015. Adherence to Refills and Medication Scale (ARMS) and Beliefs about Medicines Questionnaire (BMQ) were applied to assess adherence and beliefs about medication and treatment. Mann-Whitney, Chi-square, and Fisher's Exact tests were used for data analysis. Results: A total of 222 patients were interviewed, with a 92.8% adherence rate according to ARMS and 84.7% according to BMQ, in which the necessity-beliefs exceeded the concerns with the treatment and use of OA. Family income, treatment interruption, number and causes of interruptions, depression, and medication possession ratio were the risk factors identified. Comparison of BMQ domains showed that, in the adherent group, patient beliefs in the necessity of the medication exceeded their concerns about it. Conclusion: Understanding the patient's beliefs is a decisive factor in comprehending the risks related to nonadherence as well as in defining strategies to deal with it.

Introdução: A adesão aos antineoplásicos orais (AO) é um importante indicador de resposta terapêutica relacionada a fatores pessoais, sociais e estruturais. Objetivo: Determinar as taxas de adesão aos AO, investigando possíveis fatores de risco para a não adesão, e avaliar as crenças dos pacientes sobre medicamentos, identificando oportunidades de intervenção farmacêutica. Método: Estudo analítico realizado com pacientes com câncer em uso de AO em 2015. Escala de Adesão e Recarga dos Medicamentos (ARMS) e Questionário de Crenças sobre Medicamentos (BMQ) foram aplicados para avaliar a adesão e crenças sobre medicamentos e tratamento. Os testes de Mann-Whitney, qui-quadrado e exato de Fisher foram usados para análise de dados. Resultados: Foram entrevistados 222 pacientes, com taxa de adesão de 92,8%, segundo o ARMS e 84,7%, segundo o BMQ, no qual as crenças de necessidade excederam as preocupações com o tratamento e o uso de AO. Renda familiar, interrupção do tratamento, número e causas das interrupções, depressão e razão de posse de medicamentos foram os fatores de risco identificados. A comparação dos domínios do BMQ demostrou que, no grupo aderente, as crenças dos pacientes sobre a necessidade do medicamento excederam suas preocupações quanto a isso. Conclusão: Considerar as crenças do paciente é um fator decisivo para compreender os riscos relacionados à não adesão, bem como para definir estratégias para lidar com ela.

Introducción: La adherencia a antineoplásicos orales (AO) es un indicador importante de la respuesta terapéutica relacionada con factores personales, sociales y estructurales. Objetivo: Determinar tasas de adherencia a AO, investigar posibles factores de riesgo de incumplimiento y evaluar creencias de los pacientes sobre la medicación, identificando oportunidades para intervención farmacéutica. Método: Estudio analítico con pacientes con cáncer que usaban AO en 2015. Se aplicó Adherencia a la Recogida y Administración de la Medicación (ARMS) y Cuestionario de Creencias sobre Medicación (BMQ) para evaluar el cumplimiento y las creencias sobre medicación y tratamiento. Las pruebas de Mann-Whitney, Chi-cuadrado y Exacto de Fisher se utilizaron para análisis de datos. Resultados: Se entrevistó un total de 222 pacientes, con una tasa de adherencia de 92,8% según ARMS y 84,7% según BMQ, en la cual las creencias de necesidad excedieron preocupaciones con el tratamiento y uso de AO. Ingreso familiar, interrupción del tratamiento, número y causas de interrupciones, depresión y proporción de posesión de medicamentos fueron los factores de riesgo identificados. La comparación de los dominios de BMQ mostró que, en el grupo adherente, las creencias sobre necesidad de la medicación excedieron preocupaciones. Conclusión: La consideración de las creencias del paciente es un factor decisivo para comprender los riesgos relacionados con la no adherencia, así como para definir estrategias para afrontarla.

Quality of life and changes in the social dimension of hematopoietic stem cell transplants recipients / Calidad de vida y cambios en el dominio social de los receptores de trasplantes de células madre hematopoyéticas / Qualidade de vida e alterações no domínio social de transplantados de células-tronco hematopoéticas

ABSTRACT Objectives: to assess/correlate health-related quality of life with the social dimension of hematopoietic, autologous and allogeneic stem cell transplant patients in the three years post-transplant. Methods: longitudinal, observational study with 55 patients, in a reference hospital in Latin America, from September 2013 to February 2019, using the Quality of Life Questionnaire-Core and Functional Assessment Cancer Therapy Bone Marrow Transplantation. Results: A total of 71% underwent allogeneic transplantation. The social dimension had low averages since the baseline stage (55, 21) and low scores (56) for quality of life in pancytopenia. There was a significant positive correlation between social dimension, quality of life in pancytopenia (p<0.01) and follow-up after hospital discharge (p<0.00). There is a significant difference (p<0.00) throughout the stages, however, not in terms of the type of transplant (p>0.36/0.86). Conclusions: patients with better assessments in the social dimension have a better quality of life. Interventions focusing on the multidimensionality of the quality of life construct are necessary.

RESUMEN Objetivo: evaluar/correlacionar la calidad de vida relacionada a la salud con el ámbito social de pacientes trasplantados de células madre hematopoyéticas, autólogas y alogénicas, tres años post trasplante. Métodos: se trata de un estudio longitudinal, observacional, llevado a cabo en un hospital referencial de América Latina con 55 pacientes entre septiembre de 2013 y febrero de 2019, utilizando la Escala de Calidad de Vida-Núcleo y la Evaluación funcional de la terapia del cáncer: trasplante de médula ósea. Resultados: el 71% realizó un trasplante alogénico; el ámbito social presentó promedios bajos desde la etapa inicial (55, 21) y puntuaciones bajas (56) en cuanto a la calidad de vida en la pancitopenia. Se observó una correlación positiva significativa entre el ámbito social, la calidad de vida en la pancitopenia (p<0,01) y el seguimiento después del alta hospitalaria (p<0,00). Hubo una diferencia significativa (p<0,00) a lo largo de los estadios, pero no en lo que respecta a la modalidad del trasplante (p>0,36/0,86). Conclusiones: aquellos pacientes con mejor evaluación en el ámbito social presentan mejor calidad de vida. Es necesario realizar intervenciones que se centren en la multidimensionalidad de la construcción de la calidad de vida.

RESUMO Objetivo: avaliar/correlacionar a qualidade de vida relacionada à saúde com o domínio social de pacientes transplantados de células-tronco hematopoéticas, autólogo e alogênico, nos três anos pós-transplante. Métodos: estudo longitudinal, observacional, com 55 pacientes, num hospital referência da América Latina, de setembro de 2013 a fevereiro de 2019, com o Quality of Life Questionnarie-Core e Functional Assessment Cancer Therapy Bone Marrow Transplantation. Resultados: 71% realizaram transplante alogênico. O domínio social apresentou médias baixas desde a etapa basal (55, 21) e escores baixos (56) para a qualidade de vida na pancitopenia. Houve correlação positiva significativa entre domínio social, qualidade de vida na pancitopenia (p<0,01) e acompanhamento após alta hospitalar (p<0,00). Observa-se diferença significativa (p<0,00) ao longo das etapas, porém, não quanto à modalidade de transplante (p>0,36/0,86). Conclusões: pacientes com melhor avaliação no domínio social apresentam melhor qualidade de vida. Intervenções com foco na multidimensionalidade do constructo qualidade de vida são necessárias.