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Background: Myasthenia gravis (MG) is an autoimmune disease characterized by fluctuating muscle weakness due to autoantibodies targeting neuromuscular junction proteins. Mycophenolate mofetil (MMF), an immunosuppressive therapy, has shown potential for managing MG with fewer side effects compared to other treatments. This study aims to evaluate the effectiveness and safety of MMF in MG patients in a real-life multicenter setting. Methods: A retrospective cohort study was conducted on generalized MG patients, refractory to azathioprine (AZA) and treated with MMF alone or with steroids, at three Italian centers from January 2011 to February 2024. Patients were assessed using the Myasthenia Gravis Foundation of America (MGFA) classification, MG composite score (MGCS), and MG activity of daily living (MGADL) scores at baseline, 6, 12, 18, and 24 months. Statistical analyses included the Spearman correlation, the Friedman test, and ANOVA. Results: Thirty-two patients were enrolled (13 males, mean age 66.5 ± 11.5 years). Significant improvements in MGADL and MGCS scores were observed at 6 and 12 months (p < 0.001), with continued improvement over 24 months. Side effects were reported in 12% of patients. MMF showed a faster onset of symptom control compared to azathioprine, with a significant improvement noted within 6 months. Conclusions: A recent study found that MMF and AZA were equally effective in improving patients' quality of life, but because AZA had more serious adverse events than MMF, lower doses of AZA were therefore recommended to reduce the adverse events while maintaining efficacy. Conversely, results showed that MMF is effective and well-tolerated in the long-term management of MG, providing faster symptom control and a favorable safety profile. Future prospective studies with larger cohorts are needed to confirm these findings and explore sex differences in response to MMF treatment. [ABSTRACT FROM AUTHOR]

Background: Due to modern therapies, survival in metastatic renal cell carcinoma (mRCC) has been significantly prolonged. Nevertheless, patients suffering from advanced disease often present with severe symptoms. Early integration of palliative care into anti-cancer treatment has been shown to improve quality of life and may even prolong survival. Therefore, it is recommended to offer palliative care to patients with complex symptoms at the beginning of an advanced disease stage. To our knowledge, so far, no study has been conducted to examine the role of palliative care in patients with mRCC. Objectives: This study aimed to assess the symptom burden and quality of life before and after an inpatient palliative care treatment. Design: The study design is a retrospective observational study. Methods: We included patients with mRCC, who were admitted to our palliative care unit between 2011 and 2017 due to severe symptoms. The symptom burden was assessed at admission, throughout treatment, and at discharge. The evaluation consisted of the palliative care base assessment and daily documentation of relevant symptoms. Results: We evaluated 110 hospitalizations of 58 RCC patients. On average, patients were admitted to the palliative care unit 7 years after initial diagnosis (range 1–305 months). The median age was 70.5 years, 69% of the patients were male, 3% female. The main causes for admission were pain (52%) and dyspnea (26%), and the most frequent patient-reported symptoms were fatigue/exhaustion (87%), weakness (83%), and need for assistance with activities of daily living (83%). Multidisciplinary palliative care treatment led to a significant reduction in the median minimal documentation system (MIDOS) symptom score (15.6–9.9, p < 0.001), the median numeric pain rating scale (3–0, p < 0.001), and a significant reduction in mean ratings of the distress thermometer (5.5–3.1, p = 0.016). Conclusion: Our analysis shows that the integration of palliative care treatment is effective throughout the disease in mRCC and could measurably reduce the symptom burden in our patient population. Palliative care should not be equated with end-of-life care but should rather be integrated throughout advanced disease, particularly as soon as a cure is impossible. [ABSTRACT FROM AUTHOR]

Background: Cognitive impairments are a common and negative side effect in individuals receiving chemotherapy. Objective: This study aimed to determine the cognitive status and symptom control in individuals undergoing chemotherapy and investigate the relationship between them. Methods: The descriptive research sample consisted of 140 cancer patients receiving chemotherapy at the outpatient chemotherapy unit and medical oncology service of a training and research hospital. Individuals who were newly starting chemotherapy and undergoing chemotherapy were included in the sample. Data were collected using the Personal Information Form, The Edmonton Symptom Assessment System, and the Functional Assessment of Cancer Therapy--Cognitive Function (FACT-Cog). Data were collected at two time points, before chemotherapy and after receiving four cycles of chemotherapy. Results: It was found that the total symptom scores significantly increased after four cycles of chemotherapy (p<0.05). The scores of "Perceived Cognitive Impairments," "Comments From Others," and "Perceived Cognitive Abilities" were significantly decreases after four cycles of chemotherapy, while no significant changes were found in the scores of "Impact of Perceived Cognitive Function on Quality of Life" (p>0.05). A negative and significant correlation was found between the FACT-Cog and the Edmonton Symptom Assessment System scores (p<0.001). Conclusions: Cognitive status is negatively affected during the chemotherapy, and the severity of symptoms contributes to cognitive impairment. It is recommended to monitor the cognitive status of individuals receiving chemotherapy at regular intervals. [ABSTRACT FROM AUTHOR]

Background Symptom burdens tend to increase for patients with cancer and their families over the disease trajectory. There is still a lack of evidence on the associations between symptom changes and the quality of dying and death. In this context, this research investigated how symptom changes influence the quality of dying and death. Methods This international prospective cohort study (the East Asian Collaborative Cross-Cultural Study to Elucidate the Dying Process (EASED), 2017-2019) included 22, 11, and 4 palliative care units across Japan, South Korea, and Taiwan. Eligible participants were adults (Japan and Korea, ≥18 years; Taiwan, ≥20 years) with locally advanced or metastatic cancer. Physical and psychological symptoms were assessed by physicians upon admission and within 3 days before death. Death quality was assessed using the Good Death Scale (GDS), developed in Taiwan. Univariate and multivariate regression analyses were used to identify correlations between symptom severity changes and GDS scores. Results Among 998 patients (542 [54.3%] men and 456 [45.7%] women; mean [SD] age = 70.1 [± 12.5] years), persistent dyspnea was associated with lower GDS scores when compared to stable dyspnea (β  = −0.427, 95% CI = −0.783 to −0.071). Worsened (−1.381, −1.932 to −0.831) and persistent (−1.680, −2.701 to −0.659) delirium were also significantly associated with lower GDS scores. Conclusions Better quality of dying and death was associated with improved symptom control, especially for dyspnea and delirium. Integrating an outcome measurement for the quality of dying and death is important in the management of symptoms across the disease trajectory in a goal-concordant manner. [ABSTRACT FROM AUTHOR]

Abstract Background In March 2020, the outbreak caused by the SARS-CoV-2 virus was declared a pandemic, resulting in numerous fatalities worldwide. To effectively combat the virus, it would be beneficial to involve professionals who specialize in symptom control for advanced illnesses, working closely with other specialties throughout the illness process. This approach can help manage a range of symptoms, from mild to severe and potentially life-threatening. No studies have been conducted in Portugal to analyse the intervention of Palliative Medicine at the end of life of Covid-19 patients and how it differs from other specialties. This knowledge could help determine the importance of including it in the care of people with advanced Covid-19. Objectives The objective of this study is to examine potential differences in the care provided to patients with Covid-19 during their Last Hours and Days of Life (LHDOL) between those who received care from Palliative Medicine doctors and those who did not. Methods This is a retrospective cohort study spanning three months (Dec 2020 to Feb 2021), the duration of the Support Unit especially created to deal with Covid-19 patients. The database included clinical files from 181 patients admitted to the Support Unit, 27 of which died from Covid-19. Results Statistically significant differences were identified in the care provided. Specifically, fewer drugs were administered at the time of death, including drugs for dyspnoea, pain and agitation, suspension of futile devices and use of palliative sedation to control refractory symptoms. Conclusions End-of-life care and symptomatic control differ when there’s regular follow-up by Palliative Medicine, which may translate less symptomatic suffering and promote a dignified and humane end of life.

Background: In March 2020, the outbreak caused by the SARS-CoV-2 virus was declared a pandemic, resulting in numerous fatalities worldwide. To effectively combat the virus, it would be beneficial to involve professionals who specialize in symptom control for advanced illnesses, working closely with other specialties throughout the illness process. This approach can help manage a range of symptoms, from mild to severe and potentially life-threatening. No studies have been conducted in Portugal to analyse the intervention of Palliative Medicine at the end of life of Covid-19 patients and how it differs from other specialties. This knowledge could help determine the importance of including it in the care of people with advanced Covid-19. Objectives: The objective of this study is to examine potential differences in the care provided to patients with Covid-19 during their Last Hours and Days of Life (LHDOL) between those who received care from Palliative Medicine doctors and those who did not. Methods: This is a retrospective cohort study spanning three months (Dec 2020 to Feb 2021), the duration of the Support Unit especially created to deal with Covid-19 patients. The database included clinical files from 181 patients admitted to the Support Unit, 27 of which died from Covid-19. Results: Statistically significant differences were identified in the care provided. Specifically, fewer drugs were administered at the time of death, including drugs for dyspnoea, pain and agitation, suspension of futile devices and use of palliative sedation to control refractory symptoms. Conclusions: End-of-life care and symptomatic control differ when there's regular follow-up by Palliative Medicine, which may translate less symptomatic suffering and promote a dignified and humane end of life. [ABSTRACT FROM AUTHOR]

Radiotherapy (RT) is often utilized for symptom control at the end of life. Palliative RT (pRT) may not be taken to completion by patients, thus decreasing clinical benefits and adversely impacting resource allocation. We determined rates of incomplete pRT and examined predictors of non-completion using an electronic questionnaire. Methods: A questionnaire was embedded within the RT electronic prescribing system for all five cancer centers of Alberta, Canada, between 2017 and 2020. Prescribing radiation oncologists (ROs) were tasked with completing the questionnaire. Treatment variables were collected for 2040 patients prescribed pRT. Details on pRT courses delivered and completed were used to determine rates of incomplete RT. Electronic medical records of a subset of 367 patients randomly selected from the 2040 patients were then analyzed to examine for association of non-completion of RT with patient, disease, and therapy-related factors. Results: Overall, 10% of patients did not complete pRT. The rate of single fractions prescribed as a proportion of all RT fractions increased from 18% (pre-2017: pre-study era) to 29% (2017–2020: study era) (p < 0.0001). After conducting multivariate analysis on the overall group, multiple lifetime malignancies (OR:0.64) or increasing the number of pRT fractions (OR:0.08–0.17) were associated with non-completion. Being selected for stereotactic RT (OR:3.75) or survival > 30 days post-RT prescription (OR:2.20–5.02) were associated with greater rates of RT completion. The ROs’ estimates of life expectancy at the time of RT prescription were not predictive of RT completion. In the multivariate analysis of the 367-patient subset, the presence of hepatic metastases (OR 2.59), survival 30–59 days (OR 6.61) and survival 90+ days (OR 8.18) post-RT prescription were associated with pRT completion. Only increasing pRT fractionation (OR:0.05–0.2) was associated with non-completion. Conclusion: One in ten patients prescribed pRT did not complete their treatment course. Decreasing pRT fractionation and improving prognostication in patients near the end of life may decrease rates of incomplete RT courses.

Background: Myasthenia gravis (MG) is an autoimmune disease characterized by fluctuating muscle weakness due to autoantibodies targeting neuromuscular junction proteins. Mycophenolate mofetil (MMF), an immunosuppressive therapy, has shown potential for managing MG with fewer side effects compared to other treatments. This study aims to evaluate the effectiveness and safety of MMF in MG patients in a real-life multicenter setting. Methods: A retrospective cohort study was conducted on generalized MG patients, refractory to azathioprine (AZA) and treated with MMF alone or with steroids, at three Italian centers from January 2011 to February 2024. Patients were assessed using the Myasthenia Gravis Foundation of America (MGFA) classification, MG composite score (MGCS), and MG activity of daily living (MGADL) scores at baseline, 6, 12, 18, and 24 months. Statistical analyses included the Spearman correlation, the Friedman test, and ANOVA. Results: Thirty-two patients were enrolled (13 males, mean age 66.5 ± 11.5 years). Significant improvements in MGADL and MGCS scores were observed at 6 and 12 months (p < 0.001), with continued improvement over 24 months. Side effects were reported in 12% of patients. MMF showed a faster onset of symptom control compared to azathioprine, with a significant improvement noted within 6 months. Conclusions: A recent study found that MMF and AZA were equally effective in improving patients’ quality of life, but because AZA had more serious adverse events than MMF, lower doses of AZA were therefore recommended to reduce the adverse events while maintaining efficacy. Conversely, results showed that MMF is effective and well-tolerated in the long-term management of MG, providing faster symptom control and a favorable safety profile. Future prospective studies with larger cohorts are needed to confirm these findings and explore sex differences in response to MMF treatment.

Radiotherapy (RT) is often utilized for symptom control at the end of life. Palliative RT (pRT) may not be taken to completion by patients, thus decreasing clinical benefits and adversely impacting resource allocation. We determined rates of incomplete pRT and examined predictors of non-completion using an electronic questionnaire. Methods: A questionnaire was embedded within the RT electronic prescribing system for all five cancer centers of Alberta, Canada, between 2017 and 2020. Prescribing radiation oncologists (ROs) were tasked with completing the questionnaire. Treatment variables were collected for 2040 patients prescribed pRT. Details on pRT courses delivered and completed were used to determine rates of incomplete RT. Electronic medical records of a subset of 367 patients randomly selected from the 2040 patients were then analyzed to examine for association of non-completion of RT with patient, disease, and therapy-related factors. Results: Overall, 10% of patients did not complete pRT. The rate of single fractions prescribed as a proportion of all RT fractions increased from 18% (pre-2017: pre-study era) to 29% (2017–2020: study era) (p < 0.0001). After conducting multivariate analysis on the overall group, multiple lifetime malignancies (OR:0.64) or increasing the number of pRT fractions (OR:0.08–0.17) were associated with non-completion. Being selected for stereotactic RT (OR:3.75) or survival > 30 days post-RT prescription (OR:2.20–5.02) were associated with greater rates of RT completion. The ROs' estimates of life expectancy at the time of RT prescription were not predictive of RT completion. In the multivariate analysis of the 367-patient subset, the presence of hepatic metastases (OR 2.59), survival 30–59 days (OR 6.61) and survival 90+ days (OR 8.18) post-RT prescription were associated with pRT completion. Only increasing pRT fractionation (OR:0.05–0.2) was associated with non-completion. Conclusion: One in ten patients prescribed pRT did not complete their treatment course. Decreasing pRT fractionation and improving prognostication in patients near the end of life may decrease rates of incomplete RT courses. [ABSTRACT FROM AUTHOR]

(1) Background: The first-line treatment for patients with focal or segmental dystonia with a craniocervical distribution is still the intramuscular injection of botulinum neurotoxin (BoNT). However, some patients experience primary or secondary treatment failure from this potential immunogenic therapy. Deep brain stimulation (DBS) may then be used as a backup strategy in this situation. (2) Methods: Here, we reviewed the current study literature to answer a specific question regarding the efficacy and safety of the use of DBS, particularly for cervical dystonia (CD) and Meige syndrome (MS) in patients with documented treatment failure under BoNT. (3) Results: There are only two studies with the highest level of evidence in this area. Despite this clear limitation, in the context of the narrowly defined research question of this paper, it is possible to report 161 patients with CD or MS who were included in studies that were able to show a statistically significant reduction in dystonic symptoms using DBS. Safety and tolerability data appeared adequate. However, much of the information is based on retrospective observations. (4) Conclusions: The evidence base in this area is in need of further scientific investigation. Most importantly, more randomized, controlled and double-blind trials are needed, possibly including a head-to-head comparison of DBS and BoNT. [ABSTRACT FROM AUTHOR]

Abstract Background Within Germany, there is a heterogeneous range of training and continuing education in palliative care for different professional groups. The German Society for Palliative Medicine (DGP), together with the German Hospice and Palliative Care Association (DHPV), have defined quality requirements for postgraduate training in palliative care. These requirements include the evaluation of course structures and the assessment of outcomes. Aim To assess the ‘learning gains’ in palliative care nurses and physicians undertaking continuing education programmes, and evaluate the structures and processes. To identify if/how the continuing education programmes could be improved. Material and methods The development of Nurses’ and Physicians’ learning was determined using a retrospective self-assessment procedure. The evaluation was based on learning objectives developed in the DGP Education Working Group, using a six-point Likert scale for each item, and space for ‘free-text’ comments. Assessments were conducted after training. Results Five hundred twenty nine self-assessments were recorded (456 nurses / 73 physicians). An increase in learning is demonstrated in all areas (knowledge, skills, social and self-competence) for each profession. The greatest gain was in symptom control. However, there were significant differences in the extent of learning gains between nurses and physicians. Conclusion Analysis suggests current training results in improvements, but personal competences progress less than knowledge and skills. One way to improve this would be to introduce more interprofessional continuing education elements. Evaluation, as a basis for improving training concepts, is essential for continual development.

Bo Ding,1 Stephanie Chen,2 Divyansh Srivastava,3 Anna Quinton,4 William Cook,2 Alberto Papi,5 Helen K Reddel,6 on behalf of the NOVELTY Scientific Community and the NOVELTY study investigators1BioPharmaceuticals Medical, AstraZeneca, Gothenburg, Sweden; 2BioPharmaceuticals Medical, AstraZeneca, Gaithersburg, MD, USA; 3ZS Associates, Pune, India; 4BioPharmaceuticals Business Unit, AstraZeneca, Cambridge, UK; 5Department of Translational Medicine, Università di Ferrara, Ferrara, Italy; 6The Woolcock Institute of Medical Research and the University of Sydney, Sydney, NSW, AustraliaCorrespondence: Bo Ding, AstraZeneca, Pepparedsleden 1, Mölndal, SE 431 83, Gothenburg, Sweden, Tel +46 31 776 2406, Email bo.ding@astrazeneca.comBackground: Few studies have quantified symptom burden, health status, and productivity in patients with uncontrolled and controlled severe asthma. Up-to-date, real-world, global evidence is needed.Objective: To quantify symptom burden, health status, and productivity in patients with uncontrolled and controlled severe asthma using baseline data from the NOVEL observational longiTudinal studY (NOVELTY; NCT02760329).Methods: NOVELTY included patients aged ≥ 18 years (or ≥ 12 years in some countries) from primary care and specialist centres in 19 countries, with a physician-assigned diagnosis of asthma, asthma+chronic obstructive pulmonary disease (COPD), or COPD. Disease severity was physician-assessed. Uncontrolled severe asthma was defined by an Asthma Control Test (ACT) score < 20 and/or severe physician-reported exacerbations in the previous year; controlled severe asthma required an ACT score ≥ 20 and no severe exacerbations. Assessment of symptom burden included Respiratory Symptoms Questionnaire (RSQ) and ACT score. Assessment of health status included St George’s Respiratory Questionnaire (SGRQ), EuroQoL 5 Dimensions 5 Levels Health Questionnaire (EQ-5D-5L) index value, and EQ-5D-5L Visual Analog Score (EQ-VAS). Assessment of productivity loss included absenteeism, presenteeism, overall work impairment, and activity impairment.Results: Of 1652 patients with severe asthma, asthma was uncontrolled in 1078 (65.3%; mean age 52.6 years, 65.8% female) and controlled in 315 (19.1%; mean age 55.2 years, 56.5% female). With uncontrolled versus controlled severe asthma, symptom burden was higher (mean RSQ score 7.7 vs 2.5), health status more impaired (mean SGRQ total score 47.5 vs 22.4; mean EQ-5D-5L index value 0.68 vs 0.90; mean EQ-VAS score 64.1 vs 78.1), and productivity lower (presenteeism 29.3% vs 10.5%).Conclusion: Our findings highlight the symptom burden of uncontrolled severe asthma compared with controlled severe asthma and its impact on patient health status and productivity, and support the need for interventions to improve control of severe asthma.Graphical Abstract: Keywords: asthma control, health status, productivity, symptom burden, symptom control, uncontrolled severe asthma

Objective: We studied the risk factor aspect of rhinitis in adult patients with asthma using validated assessment tools and separating the patients into groups defining rhinitis severity according to visual analog scale and asthma control status according to asthma control test (ACT) scores. Material and Methods: Asthma is a disease that causes coughing, wheezing, and shortness of breath. It is characterized by variable and recurrent symptoms and reversible airflow obstruction. Allergic rhinitis (AR) is a disease characterized by symptoms like sneezing, itching, nasal congestion, and runny nose. Asthma is linked to AR. AR is diagnosed in 70-90% of the patients, and asthma symptoms are observed in 40-50% of the patients who are diagnosed with AR. Results: Of 114 patients with asthma receiving treatment, 78.9% were female, and 64% had mild rhinitis symptoms. While 12.3% had diabetes mellitus (DM), 30.7% had hypertension (HT), and 14.9% had ischemic heart disease (IHD). Age, sex, DM, HT, IHD, exacerbation, and diagnosis time groups in the last year did not seem to cause a significant difference in ACT scores. The difference between the rhinitis groups in terms of ACT scores was statistically significant (F= 8.506, p=0.004, partial η2=0.087). According to this result, 8.7% of the total variance asthma control could be explained by the severity of AR. Conclusion: Severe symptoms of rhinitis are associated with asthma control. Therefore, the management of AR should be targeted in patients whose asthma control cannot be optimized.

Background: Implantation of a permanent pacemaker and atrioventricular (AV) node ablation (pace-and-ablate) is an established approach for rate and symptom control in elderly patients with symptomatic atrial fibrillation (AF). Left bundle branch area pacing (LBBAP) is a physiological pacing strategy that might overcome right ventricular pacing-induced dyssynchrony. In this study, the feasibility and safety of performing LBBAP and AV node ablation in a single procedure in the elderly was investigated. Methods: Consecutive patients with symptomatic AF referred for pace-and-ablate underwent the treatment in a single procedure. Data on procedure-related complications and lead stability were collected at regular follow-up at one day, ten days and six weeks after the procedure and continued every six months thereafter. Results: 25 patients (mean age 79.2 ± 4.2 years) were included and underwent successful LBBAP. In 22 (88%) patients, AV node ablation and LBBAP were performed in the same procedure. AV node ablation was postponed in two patients due to lead-stability concerns and in one patient on their own request. No complications related to the single-procedure approach were observed with no lead-stability issues at follow-up. Conclusions: LBBAP combined with AV node ablation in a single procedure is feasible and safe in elderly patients with symptomatic AF. [ABSTRACT FROM AUTHOR]

COVID-19 lockdown measures appreciably affected patients' lifestyles, negatively impacting on their health. This includes patients with Type 2 Diabetes Mellitus (T2DM). Care of these patients was also negatively impacted due to a priority to treat patients with COVID-19, certainly initially, within hospitals and clinics in Bangladesh, combined with a lack of access to clinics and physicians due to lockdown and other measures. This is a concern in Bangladesh with growing rates of T2DM and subsequent complications. Consequently, we sought to critically analyze the situation among patients with T2DM in Bangladesh during the initial stages of the pandemic to address this information gap and provide future direction. Overall, 731 patients were recruited by a simple random sampling method among patients attending hospitals in Bangladesh, with data collected over 3 timescales: before lockdown, during the pandemic, and after lockdown. Data extracted from patients' notes included current prescribed medicines and key parameters, including blood sugar levels, blood pressure, and comorbidities. In addition, the extent of record keeping. The glycemic status of patients deteriorated during lockdown, and comorbidities as well as complications related to T2DM increased during this period. Overall, a significant proportion of key datasets were not recorded in patients' notes by their physician before and during lockdown. This started to change after lockdown measures eased. In conclusion, lockdown measures critically affected the management of patients with T2DM in Bangladesh, building on previous concerns. Extending internet coverage for telemedicine, introduction of structured guidelines, and appreciably increasing data recording during consultations is of the utmost priority to improve the care of T2DM patients in Bangladesh. [ABSTRACT FROM AUTHOR]

The aim of the work is to analyze and summarize the data of the scientific literature which highlight modern approaches to the management of patients with atrial fibrillation (AF). In the article, on the basis of the modern literature analysis, the basic therapeutic directions and methods of surgical correction of AF are analyzed. Emphasis is placed on the need to treat AF patients in accordance with the ABC strategy, which includes the prevention of thromboembolic complications (A), control of symptoms (B), as well as treatment of comorbidities and elimination of risk factors (C). The main risk factors for AF, its relationship with other cardiovascular events (including mortality, stroke rate and acute coronary syndrome) are analyzed, the main scales used to objectively assess the risks of AF are determined, and detailed analysis of different strategies for anticoagulant therapy is conducted. The main approaches to the control of symptoms by regulating the frequency of ventricular rhythm, restoration and maintenance of sinus rhythm with the use of cardioversion, the administration of antiarrhythmic peptide and catheter ablation are considered. In addition, attention is paid to the need to identify and treat comorbidities, cardiometabolic risk factors and lifestyle, which complement stroke prevention and reduce the severity of AF and symptoms. Conclusions. A large number of clinical studies is focused on AF, the main idea of which is the integrated management of AF to improve the prognosis and quality of patients’ life. According to current recommendations, treatment of a patient with AF should be consistent and in accordance with the ABC strategy. Taking into account etiological factors, cardiometabolic risk factors, lifestyle, comorbid conditions will allow physicians to timely individualize complex treatment of patients with AF.

Background: More than 80% of the residents in German hospices suffer from tumor disease. But the administration of supportive-oncological therapies in hospices for symptom control is controversially discussed. Objectives: This study aims to investigate the care situation of tumor patients in German hospices with regard to medical care and the use of supportive-oncological therapies. Methods: In February 2019, all hospices in Germany were offered the opportunity to participate in an anonymous online survey on medical and drug care for their tumor patients. The survey was conducted using the online platform SoSci Survey and ended in April 2019. The analysis was descriptive. Results: Of 202 hospices, 112 responded to the questionnaire. The hospices were distributed nationwide. Most have 8 to 10 places. More than 80% of hospice residents are tumor patients, and the length of stay is usually three to four weeks. Medical care is primarily provided by primary care physicians. While specialized outpatient palliative care is increasingly involved in care, hematologists/oncologists are rarely represented. Supportive-oncological therapies are rarely prescribed, whereas medication for other chronic conditions is often continued. The percentage of supportive-oncological therapies prescribed is higher in hospices with oncology co-care. Conclusions: Although most hospice residents suffer from malignant disease, co-care by a hematologist/oncologist is rare. Supportive-oncology therapies, particularly for symptom relief, may therefore be rarely used. However, since a small select group of hospice residents may benefit from these therapies, further investigation in this direction should be undertaken.

Objective: We studied the risk factor aspect of rhinitis in adult patients with asthma using validated assessment tools and separating the patients into groups defining rhinitis severity according to visual analog scale and asthma control status according to asthma control test (ACT) scores. Material and Methods: Asthma is a disease that causes coughing, wheezing, and shortness of breath. It is characterized by variable and recurrent symptoms and reversible airflow obstruction. Allergic rhinitis (AR) is a disease characterized by symptoms like sneezing, itching, nasal congestion, and runny nose. Asthma is linked to AR. AR is diagnosed in 70-90% of the patients, and asthma symptoms are observed in 40-50% of the patients who are diagnosed with AR. Results: Of 114 patients with asthma receiving treatment, 78.9% were female, and 64% had mild rhinitis symptoms. While 12.3% had diabetes mellitus (DM), 30.7% had hypertension (HT), and 14.9% had ischemic heart disease (IHD). Age, sex, DM, HT, IHD, exacerbation, and diagnosis time groups in the last year did not seem to cause a significant difference in ACT scores. The difference between the rhinitis groups in terms of ACT scores was statistically significant (F= 8.506, p=0.004, partial X2=0.087). According to this result, 8.7% of the total variance asthma control could be explained by the severity of AR. Conclusion: Severe symptoms of rhinitis are associated with asthma control. Therefore, the management of AR should be targeted in patients whose asthma control cannot be optimized. [ABSTRACT FROM AUTHOR]

Palliative care in the delivery room is an interprofessional and interdisciplinary challenge addressing the dying newborn and parents as well as the caregivers. It differs in some significant aspects from palliative care in the neonatal intensive care unit. Clinical experience suggests that many details regarding this unique specialized palliative care environment are not well known, which may result in some degree of insecurity and emotional distress for health care providers. This article presents basic background information regarding the provision of palliative care to newborns within the delivery room. It offers orientation along with a preliminary set of practical recommendations regarding the following central issues: (i) the basic elements of perinatal palliative care, (ii) the range of non-pharmacological and pharmacological interventions available for infant symptom control near the end of life, (iii) meeting the personal psychological, emotional, and spiritual needs of the parents, and (iv) care and self-care for medical personnel. [ABSTRACT FROM AUTHOR]

Abstract Background Palliative sedation is consciously reducing the patient’s consciousness to alleviate the refractory symptoms. However, studies on palliative sedation for children are scarce. We aimed to survey the symptom control and risks for children with sedative therapy in end of life. Method This study was a single center retrospective cohort study. Children who died in the Department of Palliative Medicine were divided into palliative sedation (Group A) and non-palliative sedation group (Group B). The symptoms relief, survival time, and last hospitalization time were compared between two groups. Results From January 2012 to November 2019, 41 children died in department of palliative care. 24 children were sedated (Group A), meanwhile 17 children were not (Group B). The symptoms in Group A were more complex than Group B (p = 0.013). Overall symptom relief in Group A was higher than that in Group B (24/24, 10/15 p = 0.041). Pain relief rates (7/7, 20/21 p = 0.714), maximum/pre-death opioid dose [30(20, 77.5), 18(9, 45) p = 0.175, 30(20, 60), 18(9, 45) p = 0.208] and pain intensity difference [5(4,6.5), 4(2,6) p = 0.315] did not differ significantly in either groups. After diagnosis, the survival time of the Group A was longer than the Group B (p = 0.047). However, the length of hospitalization before death was similar in two groups (p = 0.385). Conclusion Palliative sedation controls complicated, painful symptoms at the end of life and does not shorten the hospitalization time in children.

Mesothelioma has a scant prognosis and a great impact on symptoms and the quality of life. Pleurectomy/decortication and extrapleural pneumonectomy are the two cytoreductive surgical strategies, with different invasiveness, but achieving similar oncological results. Hereafter, the two surgical procedures effects on symptoms and the quality of life are compared in a high symptom-burden population. Between 2003 and 2017, 55 consecutive patients underwent pleurectomy/decortication (n = 26) or extrapleural pneumonectomy (n = 29), both followed by adjuvant chemo-radiotherapy. Cardio-pulmonary function, symptoms and the quality of life (Short-Form-36 and St.George's questionnaires) were evaluated pre- and 3-, 6-, 12- and 24-months postoperatively. Extrapleural pneumonectomy demonstrated lower pain at 12 months but a higher decrement of forced vital capacity at 24 months than pleurectomy/decortication. Both procedures revealed a 3-months improvement of many symptoms and the quality of life determinants. Improvement in physical, social and pain-related measured parameters lasted for a longer time-spawn in the extrapleural pneumonectomy group. No differences were found in chemotherapy compliance and survival between groups. Age-at-presentation (p = 0.02) and non-epitheliod histology (p = 0.10) were the only significant prognosticators. Surgery, despite poor survival results, improved symptoms and the quality of life in patients with mesothelioma with high symptom-burden at diagnosis. Therefore, extrapleural pneumonectomy demonstrated the most durable effects. [ABSTRACT FROM AUTHOR]

COVID-19 patients who may require invasive therapeutic procedures such as extracorporeal membrane oxygenation (ECMO) have high symptom burden and in-hospital mortality. In addition, awake patients on ECMO are new in the intensive care unit (ICU) setting. Inpatient specialist palliative care (sPC) provides support such as symptom control on a physical, psychosocial and spiritual level. The field of sPC in COVID-19 patients is still new and important to investigate. We aim to analyze sPC of COVID-19 patients in the ICU with regard to patient characteristics and symptoms from a palliative care perspective. We conducted a retrospective analysis (03/2020–04/2021) and identified 51 ICU patients receiving sPC. The statistical analysis included descriptive statistics and comparisons of symptoms. The first sPC contact of patients (mean age 69.5 years, 62.7% male) was around 14 days after COVID-19 confirmation, and 43% were treated with ECMO therapy. The baseline symptom burden was high with a focus on weakness (100%), tiredness (98%), dyspnea (96%) and family burden (92%). The symptom intensity significantly decreased during the time period of sPC and COVID-19 treatment (t(99) = 3.119, p = 0.003, d = 0.437). These results help intensivists and sPC clinicians to identify symptoms and the need for sPC in COVID-19 patients. However, studies with prospective and controlled designs need to follow. [ABSTRACT FROM AUTHOR]

Abstract Background In the last decade, access to national palliative care programs have improved, however a large proportion of patients continued to die in hospital, particularly within internal medicine wards. Objectives To describe treatments, symptoms and clinical management of adult patients at the end of their life and explore whether these differ according to expectation of death. Methods Single-centre cross-sectional study performed in the medical and surgical wards of a large tertiary-level university teaching hospital in the north of Italy. Data on nursing interventions and diagnostic procedure in proximity of death were collected after interviewing the nurse and the physician responsible for the patient. Relationship between nursing treatments delivered and patients’ characteristics, quality of dying and nurses’ expectation about death was summarized by means of multiple correspondence analysis (MCA). Results Few treatments were found statistically associated with expectation of death in the 187 patients included. In the last 48 h, routine (70.6%) and biomarkers (41.7%) blood tests were performed, at higher extent on patients whose death was not expected. Many symptoms classified as severe were reported when death was highly expected, except for agitation and respiratory fatigue which were reported when death was moderately expected. A high Norton score and absence of anti-bedsore mattress were associated with unexpected death and poor quality of dying, as summarized by MCA. Quality of dying was perceived as good by nurses when death was moderately and highly expected. Physicians rated more frequently than nurses the quality of dying as good or very good, respectively 78.6 and 57.8%, denoting a fair agreement between the two professionals (k = 0.24, P

Irritable bowel syndrome (IBS) is a functional gastrointestinal disorder leading to chronic debilitating issues. A healthy diet plays an integral role in maintaining the gut microbiota equilibrium, thus promoting digestive health. The structure and function of gut microbiota are affected by genetics and environmental factors, such as altered dietary habits, gastroenteritis, stress, increased use of alcohol and drugs, and medication use. Whereas there are various management approaches cited in the literature to manage symptoms of IBS, the purpose of this article is to focus on dietary options that will restore the gut microbiome and help in managing IBS symptoms. Some of the diets that are discussed in this article include a low-FODMAP (fermentable oligosaccharides, disaccharides, monosaccharides, and polyols) diet, gluten-free/wheat-free diet, high-fiber diet, dietary and herbal supplements (psyllium, peppermint oil), and probiotics/prebiotics/synbiotics. The clinical practice guidelines recommended by the American College of Gastroenterology outlines evidence-based dietary recommendations for patients with IBS to manage symptoms. Recent advancements in the dietary management of IBS highlighting the use of a patient-centered, personalized nutrition approach along with lifestyle changes, pharmacological therapies, and psychosocial and behavioral interventions are also reviewed and discussed. [ABSTRACT FROM AUTHOR]

Abstract Background Children with cancer are increasingly using cannabis therapeutically. Aim The purpose of this study was to determine the perspectives and practices of pediatric oncologists and palliative care physicians regarding the use of cannabis for medical purposes among children with cancer. Methods A self‐administered, voluntary, cross‐sectional, deidentified online survey was sent to all pediatric oncologists and palliative care physicians in Canada between June and August 2020. Survey domains included education, knowledge, and concerns about cannabis, views on its effectiveness, and the importance of cannabis‐related research. Data were analyzed using descriptive statistics. Results In total, 122/259 (47.1%) physicians completed the survey. Although 62.2% of the physicians completed some form of training about medical cannabis, nearly all (95.8%) desired to know more about the dosing, side effects, and safety of cannabis. Physicians identified a potential role of cannabis in the management of nausea and vomiting (85.7%), chronic pain (72.3%), cachexia/poor appetite (67.2%), and anxiety or depression (42.9%). Only four (0.3%) physicians recognized cannabis to be potentially useful as an anticancer agent. Nearly all physicians reported that cannabis‐related research for symptom relief is essential (91.5%) in pediatric oncology, whereas 51.7% expressed that future studies are necessary to determine the anticancer effects of cannabis. Conclusions Our findings indicate that most pediatric oncologists and palliative care physicians recognize a potential role for cannabis in symptom control in children with cancer. Well‐conducted studies are required to create evidence for cannabis use and promote shared decision making with pediatric oncology patients and their caregivers.

Background: Implantation of a permanent pacemaker and atrioventricular (AV) node ablation (pace-and-ablate) is an established approach for rate and symptom control in elderly patients with symptomatic atrial fibrillation (AF). Left bundle branch area pacing (LBBAP) is a physiological pacing strategy that might overcome right ventricular pacing-induced dyssynchrony. In this study, the feasibility and safety of performing LBBAP and AV node ablation in a single procedure in the elderly was investigated. Methods: Consecutive patients with symptomatic AF referred for pace-and-ablate underwent the treatment in a single procedure. Data on procedure-related complications and lead stability were collected at regular follow-up at one day, ten days and six weeks after the procedure and continued every six months thereafter. Results: 25 patients (mean age 79.2 ± 4.2 years) were included and underwent successful LBBAP. In 22 (88%) patients, AV node ablation and LBBAP were performed in the same procedure. AV node ablation was postponed in two patients due to lead-stability concerns and in one patient on their own request. No complications related to the single-procedure approach were observed with no lead-stability issues at follow-up. Conclusions: LBBAP combined with AV node ablation in a single procedure is feasible and safe in elderly patients with symptomatic AF.

COVID-19 lockdown measures appreciably affected patients’ lifestyles, negatively impacting on their health. This includes patients with Type 2 Diabetes Mellitus (T2DM). Care of these patients was also negatively impacted due to a priority to treat patients with COVID-19, certainly initially, within hospitals and clinics in Bangladesh, combined with a lack of access to clinics and physicians due to lockdown and other measures. This is a concern in Bangladesh with growing rates of T2DM and subsequent complications. Consequently, we sought to critically analyze the situation among patients with T2DM in Bangladesh during the initial stages of the pandemic to address this information gap and provide future direction. Overall, 731 patients were recruited by a simple random sampling method among patients attending hospitals in Bangladesh, with data collected over 3 timescales: before lockdown, during the pandemic, and after lockdown. Data extracted from patients’ notes included current prescribed medicines and key parameters, including blood sugar levels, blood pressure, and comorbidities. In addition, the extent of record keeping. The glycemic status of patients deteriorated during lockdown, and comorbidities as well as complications related to T2DM increased during this period. Overall, a significant proportion of key datasets were not recorded in patients’ notes by their physician before and during lockdown. This started to change after lockdown measures eased. In conclusion, lockdown measures critically affected the management of patients with T2DM in Bangladesh, building on previous concerns. Extending internet coverage for telemedicine, introduction of structured guidelines, and appreciably increasing data recording during consultations is of the utmost priority to improve the care of T2DM patients in Bangladesh.

Introduction: Up to 30% of pancreatic cancer patients initially present locally advanced (LAPC). Stereotactic body radiation therapy (SBRT) may be an additional palliative treatment option when curative resection is no longer achievable. Our systematic review aimed to assess the effect of SBRT on the quality of life in LAPC.Methods: We searched five databases until June 29th, 2021, for original articles that reported on SBRT for histologically proven LAPC in adults. Data were extracted on study characteristics, SBRT and additional therapy regimen, pain, biliary complications, nutrition, quality of life and other patient-reported outcomes. Statistical analyses were performed for population and survival data.Results: 11 case series studies comprising 292 patients with a median age of 66 (range 34-89) years were included in the final analysis. The weighted average BED2;10 (radiation biologically effective dose, equivalent dose in 2 Gy fractions) was 54 Gy, delivered in 3 to 6 fractions. The individual studies used different scales and endpoints, not allowing a meta-analysis. Pain generally appeared to be improved by SBRT. SBRT significantly reduced jaundice. Local control was achieved in 71.7% of patients. Weight loss and nausea also tended to improve after SBRT.Conclusion: SBRT of locally advanced irresectable pancreatic cancer is a promising approach for achieving local control and improving the quality of life. However, randomized controlled trials with larger cohorts are needed to assess the value of SBRT in pancreatic cancer therapy. [ABSTRACT FROM AUTHOR]

Simple Summary: At the Veneto Institute of Oncology-IRCCS, a simultaneous-care outpatient clinic (SCOC) has been active since 2014. Here, patients with advanced-stage disease are evaluated by a multidisciplinary team composed of an oncologist, a palliative care physician, a physician specialized in clinical nutrition, a psycho-oncologist and a nurse navigator, offering an early approach to palliative care, as suggested by clinical and scientific evidence. At the end of 2017, a procedure was implemented with the definition of indicators collected annually to evaluate the performance of the SCOC. This study aimed to describe the activity of the SCOC over the years, as well as its performance through the evaluation of these indicators. This is the first report which analyzed the effectiveness of an outpatient clinic where the patient is evaluated simultaneously by the oncologist and the palliative care team and illustrates a new organizational model to improve good clinical practice. Benefits of early palliative care referral in oncology are well-validated. At the Veneto Institute of Oncology-IRCCS, a simultaneous-care outpatient clinic (SCOC) has been active since 2014, where patients with advanced cancer are evaluated by an oncologist together with a palliative care team. We prospectively assessed SCOC patients' characteristics and SCOC outcomes through internal procedure indicators. Data were retrieved from the SCOC prospectively maintained database. There were 753 eligible patients. The median age was 68 years; primary tumor sites were gastrointestinal (75.2%), genitourinary (15.0%) and other sites (9.8%). Predominant symptoms were psychological issues (69.4%), appetite loss (67.5%) and pain (65.9%). Dyspnea was reported in 53 patients (7%) in the referral form, while it was detected in 226 patients (34.2%) during SCOC visits (p < 0.0001). Median survival of patients after the SCOC visit was 7.3 months. Survival estimates by the referring oncologist were significantly different from the actual survival. Psychological intervention was deemed necessary and undertaken in 34.6% of patients, and nutritional support was undertaken in 37.9% of patients. Activation of palliative care services was prompted for 77.7% of patients. Out of 357 patients whose place of death is known, 69.2% died at home, in hospice or residential care. With regard to indicators' assessment, the threshold was reached for 9 out of 11 parameters (81.8%) requested by the procedure. This study confirmed the importance of close collaboration between oncologists and palliative care teams in responding properly to cancer patients' needs. The introduction of a procedure with indicators allowed punctual assessment of a team's performance. [ABSTRACT FROM AUTHOR]

Background: Palliative sedation is consciously reducing the patient's consciousness to alleviate the refractory symptoms. However, studies on palliative sedation for children are scarce. We aimed to survey the symptom control and risks for children with sedative therapy in end of life. Method: This study was a single center retrospective cohort study. Children who died in the Department of Palliative Medicine were divided into palliative sedation (Group A) and non-palliative sedation group (Group B). The symptoms relief, survival time, and last hospitalization time were compared between two groups. Results: From January 2012 to November 2019, 41 children died in department of palliative care. 24 children were sedated (Group A), meanwhile 17 children were not (Group B). The symptoms in Group A were more complex than Group B (p = 0.013). Overall symptom relief in Group A was higher than that in Group B (24/24, 10/15 p = 0.041). Pain relief rates (7/7, 20/21 p = 0.714), maximum/pre-death opioid dose [30(20, 77.5), 18(9, 45) p = 0.175, 30(20, 60), 18(9, 45) p = 0.208] and pain intensity difference [5(4,6.5), 4(2,6) p = 0.315] did not differ significantly in either groups. After diagnosis, the survival time of the Group A was longer than the Group B (p = 0.047). However, the length of hospitalization before death was similar in two groups (p = 0.385). Conclusion: Palliative sedation controls complicated, painful symptoms at the end of life and does not shorten the hospitalization time in children. [ABSTRACT FROM AUTHOR]

Aim. Patients with mild asthma may experience severe exacerbations. This analysis was conducted to investigate regional peculiarities of mild asthma population in Russia. Materials and methods. The SYGMA2 is a double-blind multinational study involving adult patients with mild asthma (n=4176). We conducted an open-label descriptive analysis of the baseline characteristics of the Russian group (n=579) of SYGMA2 trial comparing to SYGMA2 population from other countries. The subanalysis was descriptive only, and no hypothesis were tested. Results. The Russian population of patients with mild asthma was comparable to the rest of countries in terms of demographic characteristics, smoking status and duration of asthma. The spirometric parameters in the Russian group was slightly worse than in the other population. At the study entry 48% of Russian patients had symptom control on maintenance therapy, but 52% were uncontrolled on short-acting bronchodilators. While in other countries this ratio was inverse (55/45%). More patients with mild asthma in the Russian group had at least one severe exacerbation in the previous year (30.1% vs 20.7% in other countries). Conclusion. We revealed a delayed prescription of controller therapy and overuse of short-acting bronchodilators in the Russian group of mild asthma patients, that may increase risk of asthma non-control and severe exacerbation.

Background: Asthma is a significant health issue among Vietnamese adults in both urban and rural areas. The disease needs serious concern to minimize impact and improve the situation. Objective: This study aimed to describe the level of health literacy, symptom control, and medication management and determine the relationships among them in patients with asthma in Da Nang, Vietnam. Methods: A cross-sectional descriptive study was conducted among 84 patients with asthma. The questionnaires were used in this study, including demographic form, the Short-Form Health Literacy questionnaire (HL-SF12), Asthma Control Test (ACT), and Medication Adherence Reporting Scale for Asthma (MARS-A). Pearson product-moment correlation was applied to determine the relationship between health literacy, symptom control, and medication management. Results: The score revealed for general-health literacy, symptom control, and medication management were 28.70 (SD = 9.66), 17.72 (SD = 4.67), and 3.63 (SD = 0.75), respectively. Health literacy level had moderate positive relationships with symptom control (r = 0.41) and medication management (r = 0.44). Conclusion: The patients had limited health literacy, partially controlled symptom, and poor adherence to the medication. Health literacy level had moderate positive relationships with symptom control and medication management. These findings are crucial for effective treatment and management of the disease in Vietnam. To improve medication management and symptom control among patients with asthma, nurses should concern patients’ health literacy level. Funding: This research was funded by the Research and Training Center for Enhancing Quality of Life of Working-Age People and the Department of Student Development and Alumni Affairs at the Faculty of Nursing, Khon Kean University, Thailand.

Mustafa Abdo,1 Benjamin Waschki,2 Anne-Marie Kirsten,3 Frederik Trinkmann,4,5 Heike Biller,1 Christian Herzmann,6 Erika von Mutius,7 Matthias Kopp,8,9 Gesine Hansen,10 Klaus F Rabe,1 Thomas Bahmer,1,11,* Henrik Watz3,* On behalf of the ALLIANCE study group1LungenClinic Grosshansdorf, Airway Research Center North (ARCN), German Center for Lung Research (DZL), Grosshansdorf, Germany; 2Department of Cardiology and Pneumology at Hospital Itzehoe, Itzehoe, Germany; 3Pulmonary Research Institute at the LungenClinic Grosshansdorf, Airway Research Center North (ARCN), German Center for Lung Research (DZL), Grosshansdorf, Germany; 4Department of Pneumology and Critical Care Medicine, Thoraxklinik, University of Heidelberg, Translational Lung Research Center Heidelberg (TLRC), German Center for Lung Research (DZL), Heidelberg, Germany; 5Department of Biomedical Informatics, Heinrich-Lanz-Center, University Medical Center Mannheim, Heidelberg University, Heidelberg, Germany; 6Research Center Borstel, Airway Research Center North (ARCN), German Center for Lung Research (DZL), Borstel, Germany; 7Dr von Hauner Children’s Hospital, Ludwig Maximilians University of Munich, Comprehensive Pneumology Center Munich (CPC-M), German Center for Lung Research (DZL), Munich, Germany; 8Department of Pediatric Respiratory Medicine, Inselspital, University Children’s Hospital of Bern, University of Bern, Bern, Switzerland; 9Division of Pediatric Pneumology & Allergology, University Hospital Schleswig-Holstein-Campus Luebeck, Airway Research Center North (ARCN), German Center for Lung Research (DZL), Luebeck, Germany; 10Department of Paediatric Pneumology, Allergology and Neonatology, Hannover Medical School, Biomedical Research in Endstage and Obstructive Lung Disease (BREATH), German Center for Lung Research (DZL), Hannover, Germany; 11University Hospital Schleswig-Holstein-Campus Kiel, Department for Internal Medicine I, Airway Research Center North (ARCN), German Center for Lung Research (DZL), Kiel, Germany*These authors contributed equally to this workCorrespondence: Mustafa AbdoLungenClinic Grosshansdorf GmbH, Airway Research Center North (ARCN), German Center for Lung Research (DZL), Wöhrendamm 80, Großhansdorf, 22927, GermanyTel +49 4102 601 2412Email m.abdo@lungenclinic.deRationale: Asthma, obesity and physical activity (PA) are interrelated. However, longitudinal data with objective PA measures and direct assessment of body composition are still lacking.Objective: To study the impact of symptom control on PA and body composition.Methods: In a longitudinal cohort study of the German Center for Lung Research, we assessed the body composition of 233 asthma patients and 84 healthy controls using bioelectrical impedance analysis. PA (ie average daily steps and time of at least moderate activity, steps/min) was measured by accelerometry for one week. Asthma control was assessed by ACT score, ACQ-5 score and history of severe exacerbations. After two years of follow-up, we studied changes in physical activity and body composition in relation to asthma control.Results: Patients with uncontrolled asthma had increased fat mass and decreased muscle mass compared to patients with controlled asthma or healthy controls. Both fat mass and muscle mass correlated better with asthma control than the body mass index (BMI). In multivariate regressions adjusted for age and sex, asthma control and physical activity were independent predictors of body composition (R2 = 0.61, p

Introduction: End-of-life patients face difficulties in reporting respiratory distress. The Respiratory Distress Observation Scale (RDOS) is a well-known tool; however, field implementation has been challenging from ground feedback. We sought to develop a simpler scale. Setting: Patients referred for palliative consult in a tertiary hospital in Singapore were recruited. Methods: A priori, we identified 18 dyspnea physical signs and documented their presence through bedside observation. Dyspnea severity was self-reported. The cohort was randomly split into training and test sets. Partial least square regression with leave-one-out cross-validation was used to develop a four-point model from the training set. Using the test set, data fit was compared using Akaike and Bayesian Information Criterion. Discrimination was assessed using receiver operating characteristics. Results: Of 122 patients, mean age was 67.9 years (range 23?93, standard deviation 12.9), 71.3% had a primary cancer diagnosis, and 58.1% were chair/bedbound with a Palliative Performance Scale of ?50. Median reported dyspnea scale was 5 (interquartile range 3?7). Our model (modRDOS-4) consisted of four predictors (grunting, respiratory rate, accessory muscle use, paradoxical breathing). A modRDOS-4 of ?6 identified moderate-to-severe dyspnea with a sensitivity of 0.78 and specificity of 0.90. Using the test set, with the modRDOS-4, the Akaike Information Criterion (AIC) is 149.8, Bayesian Information Criteria (BIC) is 154.1, and the receiver operating characteristics (ROC) is 0.74. With the original RDOS, the AIC is 145.2, BIC is 149.5, and ROC is 0.76. Conclusion: For a quick assessment of dyspnea, we developed a four-item tool with a pilot web-based nomogram. External validation is needed.

The primary moral commitment of medical care has traditionally been based on a belief in the intrinsic value and significance of human life and a desire to protect the most vulnerable from harm. In this respect, the care of newborn infants who are at the border of viability is no different. Despite the intrinsic value of the life of every newborn, all agree that there is no moral duty of doctors to provide every possible treatment where the prognosis is hopeless. Instead, every action and treatment should be orientated towards the best interests of the individual child and towards the minimisation of serious harm. Decisions about the withholding or withdrawal of life-supportive treatment should be made collaboratively between professionals and parents, with discussion starting prior to delivery wherever possible. The goals of neonatal palliative care are to prevent or minimise pain and distressing symptoms and to maximise the opportunity for private, loving interaction between the dying baby and his or her parents and the wider family. Physical contact, gentle stroking, cuddles and tender loving care are of central importance for the dying baby. At the same time, we must provide psychological support for parents and family as they go through the profound and painful life experience of accompanying their baby to death. To enable a baby to die well, pain-free and in the arms of loving parents and carers is not a failure but a triumph of neonatal care. [ABSTRACT FROM AUTHOR]

We present a short review about the main symptoms encountered in lung cancer, namely dyspnea, cough and hemoptysis. A particular aspect is represented by the rales of patients in the state of end of life. The pharmacological means of treatment are described. Following the most recent studies, classical drugs like opioids and benzodiazepines have been reevaluated as useful and indicated. There are also presented some nonpharmacological means. [ABSTRACT FROM AUTHOR]

Bleeding, pain and discharge are common symptoms of cervical cancer that can be effectively palliated with radiotherapy. To evaluate the effectiveness of an external beam radiotherapy dose of 37.4 Gy in 11 fractions for the local palliation of advanced cervical cancer. This study is a retrospective review of all patients receiving palliative radiotherapy (37.4 Gy in 11 fractions) at the Department of Oncology, Universitas Hospital, Bloemfontein South Africa, from 2009 to 2013. The data from 324 cases were analysed. Data obtained included patient age, ECOG performance status, FIGO staging, histological type and grade, HIV status and CD4 count. The presence of renal impairment and patient-reported symptoms before and after treatment, as well as the duration of therapy, was also documented. The five-year overall survival was determined from available follow-up data. The majority of patients (50.9%) were between 40 and 59 years of age, 138 (42.6%) were HIV-positive and most patients presented with FIGO stage 4 disease 228 (70.4%). Squamous cell carcinoma (SCC) was the most frequent histological type (n = 292; 90.4%). Tumour grade was well differentiated in 16 (4.9%) patients, moderately differentiated in 171 (52.8%) cases and poorly differentiated in 113 (34.9%). Most patients reported relief of symptoms one month post-treatment: 76.6% of patients reported improvement of pain, while bleeding and discharge had resolved in 99.5% and 79.3% of patients, respectively. Similar observations were noted at 3-, 6- and 12-month follow-up. Morphine analgesia was required in less than 10% of patients over the 12 month follow-up period. Of the initial cohort, 11 (3.4%) patients were still alive five years after completing palliative radiotherapy. [ABSTRACT FROM AUTHOR]

Background: In the last decade, access to national palliative care programs have improved, however a large proportion of patients continued to die in hospital, particularly within internal medicine wards. Objectives: To describe treatments, symptoms and clinical management of adult patients at the end of their life and explore whether these differ according to expectation of death. Methods: Single-centre cross-sectional study performed in the medical and surgical wards of a large tertiary-level university teaching hospital in the north of Italy. Data on nursing interventions and diagnostic procedure in proximity of death were collected after interviewing the nurse and the physician responsible for the patient. Relationship between nursing treatments delivered and patients' characteristics, quality of dying and nurses' expectation about death was summarized by means of multiple correspondence analysis (MCA). Results: Few treatments were found statistically associated with expectation of death in the 187 patients included. In the last 48 h, routine (70.6%) and biomarkers (41.7%) blood tests were performed, at higher extent on patients whose death was not expected. Many symptoms classified as severe were reported when death was highly expected, except for agitation and respiratory fatigue which were reported when death was moderately expected. A high Norton score and absence of anti-bedsore mattress were associated with unexpected death and poor quality of dying, as summarized by MCA. Quality of dying was perceived as good by nurses when death was moderately and highly expected. Physicians rated more frequently than nurses the quality of dying as good or very good, respectively 78.6 and 57.8%, denoting a fair agreement between the two professionals (k = 0.24, P < 0.001). The palliative care consultant was requested for only two patients. Conclusion: Staff in medical and surgical wards still deal inadequately with the needs of dying people. Presence of hospital-based specialist palliative care could lead to improvements in the patients' quality of life. [ABSTRACT FROM AUTHOR]

Abstract Background Despite improvements in medical care, patients with advanced cancer still experience substantial symptom distress. There is increasing interest in the use of medicinal cannabinoids but little high-quality evidence to guide clinicians. This study aims to define the role of a 1:1 delta-9-tetrahydrocannabinol/cannabidiol (THC/CBD) cannabinoid preparation in the management of symptom burden in patients with advanced cancer undergoing standard palliative care. Methods and design One hundred fifty participants will be recruited from five sites within the Queensland Palliative Care Research Group (QPCRG) and randomly assigned to an active treatment or placebo group. This study is a pragmatic multicentre, randomised, placebo-controlled, two-arm trial of escalating doses of an oral 1:1 THC/CBD cannabinoid preparation. It will compare efficacy and safety outcomes of a titrated dose (10 mg/10 mg/mL oral solution formulation, dose range 2.5 mg/2.5 mg–30 mg/30 mg/day) against placebo. There is a 2-week patient-determined titration phase, using escalating doses of 1:1 THC/CBD or placebo, to reach a dose that achieves symptom relief with tolerable side effects. This is then followed by a further 2-week assessment period on the stable dose determined in collaboration with clinicians. The primary objective is to assess the effect of escalating doses of a 1:1 THC/CBD cannabinoid preparation against placebo on change in total symptom score, with secondary objectives including establishing a patient-determined effective dose, the change in total physical and emotional sores, global impression of change, anxiety and depression, opioid use, quality of life and adverse effects. Discussion This will be the first placebo-controlled clinical trial to rigorously evaluate the efficacy, safety and acceptability of 1:1 THC/CBD for symptom relief in advanced cancer patients. This study will allow the medical community to have some evidence to present to patients wishing to access cannabis for their symptoms caused by advanced malignancy. Trial registration ACTRN, ACTRN12619000037101 . Registered on 14 January 2019. Trial Sponsor: Mater Misericordiae Limited (MML) and Mater Medical Research Institute Limited (MMRI)—Raymond Terrace, South Brisbane, Brisbane, QLD, Australia

Abstract Background Surprisingly little is known about asthma control among asthmatics who smoke. The aim of this cross-sectional study was to investigate asthma symptom control according to the GINA guidelines among asthmatics with a clinically significant smoking history. Methods One hundred ninety asthmatics from primary care in Finland were investigated. The patients were current or previous cigarette smokers with a history of 10 or more pack-years. They completed a questionnaire including questions on asthma symptoms and reliever use so that their level of asthma symptom control (well controlled, partly controlled, or uncontrolled) according to GINA could be determined. Results Sixty-six (34.7%) patients had their asthma well controlled, 81 (42.6%) had their asthma partly controlled, and 43 (22.6%) had uncontrolled asthma. Current smokers had uncontrolled asthma more often than ex-smokers, OR 2.54 (95% CI 1.25–5.14, p = 0.01). Patients with moderate to severe asthma exacerbation during the previous year had uncontrolled asthma more often than patients without an exacerbation, OR 2.17 (95% CI 1.06–4.47, p = 0.04), and patients with FEV1 80% of predicted, OR 2.04 (95% CI 1.02–4.08, p = 0.04). Conclusions Asthmatic patients with a clinically significant smoking history often do not have well controlled asthma. Poor asthma symptom control was associated with current smoking status, history of exacerbations and impaired lung function. Therefore, every attempt should be made to help asthmatics who smoke to quit smoking.

Abstract Background The 12-week, multicentre, observational INITIAL study (NCT02143739) assessed asthma severity in newly diagnosed Chinese patients. Methods Post hoc analysis of medication combinations prescribed per routine clinical practice at baseline, and the impact on control levels evaluated using 2012 vs 2018 Global Initiative for Asthma (GINA) criteria. Results In total, 4491 patients were included in the analysis. At baseline, intermittent, mild, moderate and severe asthma was reported in 3.9, 12.0, 22.6 and 61.6% of patients, respectively. Most patients (90.2%) were prescribed inhaled corticosteroid/long-acting β2 agonist (ICS/LABA). ICS/LABA plus ≥1 additional medication(s) was prescribed to 66.7% of patients, with leukotriene receptor antagonist (LTRA, 54.7%) being the most common additional medication. Distribution of ICS/LABA vs ICS/LABA+LTRA was comparable in patients with intermittent (3.2% vs 3.0%), mild (11.5% vs 9.7%), moderate (21.2% vs 19.9%) and severe asthma (64.1% vs 67.4%). Control levels among patients using ICS/LABA+LTRA vs ICS/LABA were comparable using GINA 2012 and lower using GINA 2018 criteria. The proportion of patients using ICS/LABA+LTRA vs ICS/LABA with intermittent, mild, moderate and severe asthma controlled at Week 12 (using GINA 2012) were 78.1% vs 80.0, 86.5% vs 85.8, 78.5% vs 71.3, and 59.6% vs 61.8%, respectively. Using GINA 2018 criteria proportions were 86.8% vs 95.9, 86.1% vs 93.2, 82.1% vs 85.3, and 71.9% vs 77.6%, respectively. Conclusions Asthma control was not improved by adding LTRA to ICS/LABA and may have been unnecessary for some newly diagnosed patients. These findings were irrespective of the GINA criteria (2012 vs 2018) used and baseline severity.

Abstract Background Despite improvements in medical care, patients with advanced cancer still experience substantial symptom distress. There is increasing interest in the use of medicinal cannabinoids, but there is little high quality evidence to guide clinicians. This study aims to define the role of cannabidiol (CBD) in the management of symptom burden in patients with advanced cancer undergoing standard palliative care. Methods and design This study is a multicentre, randomised, placebo controlled, two arm, parallel trial of escalating doses of oral CBD. It will compare efficacy and safety outcomes of a titrated dose of CBD (100 mg/mL formulation, dose range 50 mg to 600 mg per day) against placebo. There is a 2-week patient determined titration phase, using escalating doses of CBD or placebo to reach a dose that achieves symptom relief with tolerable side effects. This is then followed by a further 2-week assessment period on the stable dose determined in collaboration with clinicians. Discussion A major strength of this study is that it will target symptom burden as a whole, rather than just individual symptoms, in an attempt to describe the general improvement in wellbeing previously reported by some patients in open label, non controlled trials of medicinal cannabis. Randomisation with placebo is essential because of the well-documented over reporting of benefit in uncontrolled trials and high placebo response rates in cancer pain trials. This will be the first placebo controlled clinical trial to evaluate rigorously the efficacy, safety and acceptability of CBD for symptom relief in advanced cancer patients. This study will provide the medical community with evidence to present to patients wishing to access medicinal cannabis for their cancer related symptoms. Trial registration number ALCTRN12618001220257 Registered 20/07/2018.

Palliative care in the delivery room is an interprofessional and interdisciplinary challenge addressing the dying newborn and parents as well as the caregivers. It differs in some significant aspects from palliative care in the neonatal intensive care unit. Clinical experience suggests that many details regarding this unique specialized palliative care environment are not well known, which may result in some degree of insecurity and emotional distress for health care providers. This article presents basic background information regarding the provision of palliative care to newborns within the delivery room. It offers orientation along with a preliminary set of practical recommendations regarding the following central issues: (i) the basic elements of perinatal palliative care, (ii) the range of non-pharmacological and pharmacological interventions available for infant symptom control near the end of life, (iii) meeting the personal psychological, emotional, and spiritual needs of the parents, and (iv) care and self-care for medical personnel.

Terminal hemorrhage, although relatively rare, presents a significant challenge in palliative care, necessitating effective management strategies to alleviate distress in patients and their families. This report presents the case of a 77-year-old woman with advanced vulvar squamous cell carcinoma. The patient had ulcerated groin metastases that had affected the nerve and vasculature of her left leg. Upon clinical examination, she had a large nonhealing ulcer of 11 cm x 2 cm x 4 cm on her upper left thigh that contained slough and was oozing. After a goals of care discussion with the patient and her family, she was admitted to hospice for comfort care measures. This case highlights an unconventional use of a femoral compression device in the palliative care setting, offering a novel approach to managing terminal hemorrhage. Commonly, these devices are used for hemostasis following different procedures, such as vessel cannulation or femoral artery pseudoaneurysm repair., Competing Interests: The authors have declared that no competing interests exist., (Copyright © 2024, Alonso et al.)

Mesothelioma has a scant prognosis and a great impact on symptoms and the quality of life. Pleurectomy/decortication and extrapleural pneumonectomy are the two cytoreductive surgical strategies, with different invasiveness, but achieving similar oncological results. Hereafter, the two surgical procedures effects on symptoms and the quality of life are compared in a high symptom-burden population. Between 2003 and 2017, 55 consecutive patients underwent pleurectomy/decortication (n = 26) or extrapleural pneumonectomy (n = 29), both followed by adjuvant chemo-radiotherapy. Cardio-pulmonary function, symptoms and the quality of life (Short-Form-36 and St.George’s questionnaires) were evaluated pre- and 3-, 6-, 12- and 24-months postoperatively. Extrapleural pneumonectomy demonstrated lower pain at 12 months but a higher decrement of forced vital capacity at 24 months than pleurectomy/decortication. Both procedures revealed a 3-months improvement of many symptoms and the quality of life determinants. Improvement in physical, social and pain-related measured parameters lasted for a longer time-spawn in the extrapleural pneumonectomy group. No differences were found in chemotherapy compliance and survival between groups. Age-at-presentation (p = 0.02) and non-epitheliod histology (p = 0.10) were the only significant prognosticators. Surgery, despite poor survival results, improved symptoms and the quality of life in patients with mesothelioma with high symptom-burden at diagnosis. Therefore, extrapleural pneumonectomy demonstrated the most durable effects.

People with uncontrolled asthma are faced with many difficulties as the disease progresses and self-management is one approach to improve their health outcomes. This randomized controlled trial aimed to test the effects of a self-management enhancement program on symptom control and quality of life among adults with uncontrolled asthma. The study was implemented from April to September 2018 at a tertiary care hospital in northeast Thailand. One hundred people were randomly assigned to the experimental (n = 50) and control groups (n = 50). The experimental group participated in a 6-week self-management enhancement program, whereas the control group received standard care. The outcomes were assessed at 12 weeks after the completion of the program. Questionnaires used were the Asthma Control Test and the Mini Asthma Quality of Life. Data were analyzed using descriptive statistics, paired t-tests, independent t-tests, and Mann-Whitney U tests. The results indicated that participants in the experimental group showed improvements in symptom control, as well as their quality of life, compared to before the program. After the program, they had a statistically significant better improvement in symptom control and quality of life when compared with the control group at 12 weeks. These findings suggest that the program for self-management can be used to improve symptom control and the quality of life among persons with uncontrolled asthma, but we suggest further testing with groups in other regions. Such an intervention could be directly beneficial to either nurses or other health care professionals to enhance health behaviors among people with uncontrolled asthma. Nurses need to be trained to provide information and motivate people with uncontrolled asthma to sustain their self-management efforts. [ABSTRACT FROM AUTHOR]

Background: Medical marijuana (MM) use is common among cancer patients, but relatively little is known about the usage patterns and efficacy of MM used by gynecologic cancer patients. Methods: Demographic and clinical data were collected for gynecologic cancer patients prescribed MM between May 2016 and February 2019. The electronic medical record was used to query formulation prescribed, usage patterns, length of use, symptom relief, and side effect profile. Descriptive statistics were calculated. Results: Of 45 gynecologic cancer patients prescribed MM, 89% were receiving chemotherapy; 56% were undergoing primary treatment. MM was used for a median of 5.2 months (range 0.6–25.4). Over 70% of patients reported improvement in nausea/vomiting, compared to 36% of patients using MM for pain relief (p = 0.02). Of 41 patients with follow-up information, 71% found MM improved at least one symptom. Conclusions: Among a small sample of gynecologic cancer patients prescribed MM for symptom management, self-reported follow-up indicated symptom relief for the majority of patients and minimal therapy-related side effects. This data can prove useful for counseling gynecologic cancer patients on the efficacy and side effects of MM.

Abstract Background While the majority of seriously ill people wish to die at home, only half achieve this. The likelihood of someone dying at home often depends on the availability of able and willing lay carers to support them. Dying people are usually unable to take oral medication. When top-up symptom relief medication is required, a clinician travels to the home to administer injectable medication, with attendant delays. The administration of subcutaneous injections by lay carers, though not widespread practice in the UK, has proven key in achieving home deaths in other countries. Our aim is to determine if carer-administration of as-needed subcutaneous medication for four frequent breakthrough symptoms (pain, nausea, restlessness and noisy breathing) in home-based dying patients is feasible and acceptable in the UK. Methods This paper describes a randomised pilot trial across three UK sites, with an embedded qualitative study. Dyads of adult patients/carers are eligible, where patients are in the last weeks of life and wish to die at home, and lay carers who are willing to be trained to give subcutaneous medication. Dyads who do not meet strict risk assessment criteria (including known history of substance abuse or carer ability to be trained to competency) will not be approached. Carers in the intervention arm will receive a manualised training package delivered by their local nursing team. Dyads in the control arm will receive usual care. The main outcomes of interest are feasibility, acceptability, recruitment rates, attrition and selection of the most appropriate outcome measures. Interviews with carers and healthcare professionals will explore attitudes to, experiences of and preferences for giving subcutaneous medication and experience of trial processes. The study has obtained full ethical approval. Discussion This study will rehearse the procedures and logistics which will be undertaken in a future definitive randomised controlled trial and will inform the design of such a study. Findings will illuminate methodological and ethical issues pertaining to researching last days of life care. The study is funded by the National Institute for Health Research (Health Technology Assessment [HTA] project 15/10/37). Trial registration ISRCTN, ISRCTN 11211024. Registered on 27 September 2016.

Benefits of early palliative care referral in oncology are well-validated. At the Veneto Institute of Oncology-IRCCS, a simultaneous-care outpatient clinic (SCOC) has been active since 2014, where patients with advanced cancer are evaluated by an oncologist together with a palliative care team. We prospectively assessed SCOC patients’ characteristics and SCOC outcomes through internal procedure indicators. Data were retrieved from the SCOC prospectively maintained database. There were 753 eligible patients. The median age was 68 years; primary tumor sites were gastrointestinal (75.2%), genitourinary (15.0%) and other sites (9.8%). Predominant symptoms were psychological issues (69.4%), appetite loss (67.5%) and pain (65.9%). Dyspnea was reported in 53 patients (7%) in the referral form, while it was detected in 226 patients (34.2%) during SCOC visits (p < 0.0001). Median survival of patients after the SCOC visit was 7.3 months. Survival estimates by the referring oncologist were significantly different from the actual survival. Psychological intervention was deemed necessary and undertaken in 34.6% of patients, and nutritional support was undertaken in 37.9% of patients. Activation of palliative care services was prompted for 77.7% of patients. Out of 357 patients whose place of death is known, 69.2% died at home, in hospice or residential care. With regard to indicators’ assessment, the threshold was reached for 9 out of 11 parameters (81.8%) requested by the procedure. This study confirmed the importance of close collaboration between oncologists and palliative care teams in responding properly to cancer patients’ needs. The introduction of a procedure with indicators allowed punctual assessment of a team’s performance.