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Elderly patients who undergo pancreaticoduodenectomy (PPPD) or distal pancreatectomy (DP) experience not only a reduction in protein intake but also a decrease in protease secretion, leading to impaired protein digestion and absorption. This increases the risk of malnutrition and creates a dual burden of sarcopenia. This randomized, double-blind, placebo-controlled trial examined the impact of protein supplements on the nutritional status and quality of life (QoL) of elderly patients after PPPD and DP surgeries. For six weeks, the case group (CG; n = 23) consumed protein supplements containing 18 g of protein daily, while the placebo group (PG; n = 18) consumed a placebo with the same amount of carbohydrate. In elderly patients where protein digestion and intake were compromised, the CG showed significantly higher protein intake (77.3 ± 5.3 g vs. 56.7 ± 6.0 g, p = 0.049), improved QoL, better nutritional status, and faster walking speed compared to the PG. Protein intake was positively correlated with muscle mass and phase angle. Protein supplementation may not only increase protein intake but also improve clinical outcomes such as walking speed, nutritional status, and QoL in elderly post-surgical patients at high risk of sarcopenia. Further studies are needed to determine the optimal dosage and long-term effects.

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Aim: To compare the impact of submucosal dexamethasone (4 mg) administered after the onset of local anesthesia on postoperative discomfort after third molar surgery and compare the parameters with a control group that did not receive the drug. Methods: A total of 60 patients indicated for surgical removal of impacted mandibular third molars (mesioangular, Class II or III, and position B or C) were randomly divided into two groups of 30 patients each. After the onset of local anesthesia, the first group (Group A) received a submucosal injection of 4 mg dexamethasone adjacent to the surgical site, and the control group (Group B) received no drug. Pain, swelling, and trismus were recorded at follow-up visits on the 1st, 2nd, and 7th postoperative days. Assessment of postoperative discomfort was performed by evaluating responses through a modified postoperative symptom severity scale questionnaire, which was administered to the patients on the 7th postoperative day. Results: The difference in subjective pain values and the mean number of analgesics consumed was not significant between the groups. The difference in postoperative swelling was statistically significant on the 1st, 2nd (P < 0.0001), and 7th postoperative days (P = 0.0152). The difference in postoperative trismus was highly significant on 1st and 2nd postoperative days (P < 0.0001). The difference in the mean total quality of life (QOL) score, Eating, Appearance, Daily activity subscale (P < 0.0001), and Social Isolation subscale (P = 0.0002) was statistically significant between both groups. Conclusion: It was found that the administration of submucosal dexamethasone resulted in significantly lesser postoperative swelling and trismus and better QOL outcomes.

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BACKGROUND: Incorporating an occupation-based assessment along with or in place of an assessment of body functions and structures is not performed routinely in hand therapy practice. PURPOSE: (a) Explore correlations between body functions, activities and participation (A&P), and quality of life (QOL); (b) assess the extent to which personal factors and body functions contribute to variations in A&P and QOL; (c) compare the QOL of individuals with and without hand impairment (HI). STUDY DESIGN: Cross-sectional. METHODS: Seventy-seven patients (Mean age=43.70 SD=17.56; 47 males and 30 females) with chronic and acute hand impairment were recruited from two hand clinics and matched with healthy participants. Assessments were administered to participants in their first visit to the hand clinic. QOL was measured with the World Health Organization QOL questionnaire; A&P with the Disabilities of the Arm Shoulder and Hand (DASH) questionnaire; pain with the Patient-Rated Wrist/Hand Evaluation; hand function with The Functional Dexterity Test, Jamar Dynamometer and Pinch Gauge. RESULTS: Significant correlations were found between QOL and A&P, dexterity, and pain, as well as between A&P and hand strength and pain. Personal factors, hand function, and pain collectively explained 28.9% of QOL variance and 61.4% of A&P variance. Pain emerged as the sole significant contributor to QOL variance, while both hand function and pain significantly influenced A&P variance. Comparisons between the study group and controls highlighted significant differences in QOL domains, with the HI group reporting lower perceived QOL in physical, social, and environmental domains. CONCLUSION: The significance of adopting a comprehensive approach in HI intervention was highlighted. A complex interplay of factors across different levels of the International Classification of Functioning, Disability and Health (ICF) framework imply that clinicians should avoid fixating exclusively on isolated factors or specific domains.

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BACKGROUND: An intestinal stoma is a surgically created artificial opening in the abdominal wall that helps the large or small intestine end to divert the faecal matter for stoma patients with an underlying condition of inflammatory bowel disease and colorectal cancer. When a stoma is formed following surgery, one of the difficulties stoma patients confront has been identified as prolonged immobilization, which can eventually result in muscle inactivity that results due to their illness. Patients with stoma often experience an increase in pain and a decrease in quality of life. Patients can be mobilized and their muscles can be activated with the help of an early intervention called specific mobility exercises. AIM: The present study aimed to explore the specific mobility exercises that reduce pain and improve quality of life among stoma patients. METHODOLOGY: This quasi-experimental study involved 21 patients who underwent stoma surgery and were selected according to the inclusion and exclusion criteria. The experimental procedures were explained to all the patients and their written informed consent was obtained. The patients performed specific mobility exercises for 30 minutes per day. Treatment was given for four weeks every day after three to four days of stoma surgery. The patient's pain and quality of life were assessed using the Numerical Pain Rating Scale and the Stoma-Quality of Life (QoL) Questionnaire and pre-test and post-test values were recorded before and after the exercises. The data were tabulated and evaluated. RESULTS: The findings suggest that specific mobility exercises following four weeks of intervention have a significant effect (p< 0.001) in reducing pain except in young adult stoma patients as they were found to be anxious and depressed, which was reflected in the findings as not statistically significant for pain on the NPRS (t(1) = 7, p > 0.001). However, it has been demonstrated that these specific mobility exercises have a significant effect (p< 0.001) in improving the quality of life among all stoma patients. CONCLUSION: The study evidenced that four weeks of specific mobility exercises in line with general medical treatment showed a significant reduction in pain and an improvement in quality of life among stoma patients. However, it should be noted that in the study, the majority of stoma patients were male and there were only a few patients with inflammatory bowel disease, which can limit the study findings. Future studies have to focus on equally distributing gender and conditions by emphasizing the importance of randomizing patients into the experimental and control groups and involving a combination of other exercises in rehabilitation for patients following stoma surgery.

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It is well established that the COVID-19 pandemic has had a substantial impact on ethnic minority communities and has worsened existing health inequalities experienced by these populations globally. Individuals from ethnic minority backgrounds have not only been more likely to become infected with COVID-19 throughout the pandemic, but they have also higher risk of adverse symptoms and death following infection. Factors responsible for these discrepancies are wide reaching and encompass all aspects of the social determinants of health (SDoH). Although always an area of concern among healthcare professionals, barriers to health care experienced by ethnic minority populations became a more pertinent issue during the COVID-19 pandemic when all individuals required sufficient and sustained access to a healthcare system (whether this be for COVID-19 testing, vaccination or treatment). These healthcare barriers exacerbated the increased COVID-19 burden experienced by minority populations and will continue to detrimentally impact the health of these populations during future COVID-19 waves or indeed, future novel pandemics. This chapter aims to summarise the major healthcare barriers experienced by minority populations throughout the COVID-19 pandemic, including COVID-19 prevention, vaccine rollout, care during hospitalisation and post-COVID care for long COVID patients. To end, this chapter will summarise lessons learned and future directions that need to be taken to improve health disparities and healthcare access for minority populations in relation to the COVID pandemic and beyond.

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PURPOSE: Lumbar spinal fusion surgeries are increasingly being performed in spinal degenerative disease, often accompanied by perioperative opioid prescriptions. The aim of this study is to analyze prolonged postoperative opioid use following a standardized opioid prescription after single-level lumbar spinal fusion surgery in a Belgian population. METHODS: This prospective, multicentric observational study included patients undergoing single-level lumbar fusion surgery for degenerative disease. A standardized postoperative opioid protocol (Targinact 2 × 10 mg/5 mg, Paracetamol 4 × 1 g and Ibuprofen 3 × 600 mg) was applied uniformly. Prolonged opioid use was defined as continued opioid use six months after surgery. Patient data were collected using the Back-App®. RESULTS: Among 198 participants, 32.8% continued opioid use six months post-surgery, with 8% utilizing strong opioids. Prolonged opioid use correlated with lower pre-operative back pain. Patients with prolonged opioid use and strong opioid use at six months show less improvement in disability compared to patients without prolonged opioid use. Moreover, patients with prolonged strong opioid use tend to have lesser improvement of the low back pain. The odds for prolonged opioid use decrease with the increase of the improvement in ODI. CONCLUSION: 1 in 3 patients undergoing single-level lumbar spinal fusion surgery is at risk for prolonged opioid use. The study underscores the importance of tailored pain management strategies, particularly given the rising prevalence of spinal fusion surgeries. The association between pre-operative low back pain, post-operative improvement in functionality (ODI), and prolonged opioid use emphasizes the need for judicious opioid prescribing practices and highlights the role of functional outcomes in treatment goals.

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BACKGROUND:  Breast Cancer has now become the leading cause of cancer-related deaths among women. In a traditional radical mastectomy, there can be complications that may affect the physiological characteristics of the breast and subsequently cause profound psychological stress to the patients. Hence, latissimus dorsi (LD) flap reconstruction provides an aesthetic approach in patients undergoing mastectomy. The goal is to maximize the flap's soft tissue coverage while minimizing the magnitude of donor site defect and complication. METHODS: A prospective observational study was conducted in the Department of General Surgery, Safdarjung Hospital, New Delhi, India, where 30 breast cancer patients were enrolled and had undergone mastectomy with immediate LD flap reconstruction. Cosmetic assessments using BREAST-Q questionnaires were conducted postoperatively at various intervals starting from postoperative day one, week two, and week six. The subjective evaluation was done by the patient, while a blinded nurse and surgeon did the objective assessment. RESULT:  The majority (n=23, 76.7%) were aged 31-50 years. Initial postoperative BREAST-Q scores declined but significantly improved by week six, attributed to gradual wound healing over time, resulting in improved breast shape and contour. The objective scoring done by the blinded surgeon and nurse improved at six weeks compared to two weeks postoperatively. Almost similar outcomes were observed between preoperative and six-week postoperative scores with a significant overall p-value of <0.001. No significant statistical differences were noted between blinded surgeons and nurses for objective scoring. CONCLUSION:  The rising trend of breast cancer in younger demographics emphasizes the importance of balancing cosmetic satisfaction with oncological outcomes. Immediate LD flap breast reconstruction provides a reliable means for soft tissue coverage with acceptable perioperative morbidities for patients undergoing mastectomy. Complication rates were acceptable, with donor site seroma, surgical site infection (SSI), and shoulder weakness among them. They could be prevented or treated (prolonged drain in situ, quilting sutures, and seroma aspiration) or resolved with time (SSI and shoulder function).

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BACKGROUND: Atrial Fibrillation (AF) is known to be associated with a negative emotional state. Patient-reported outcomes (PROs) are important tools for evaluating the endpoints of AF management. This study aims to examine the correlation between personality types and PROs in patients with AF. METHODS: All included subjects were newly diagnosed with AF fewer than one month, and their personality types were assessed using the Eysenck Personality Questionnaire (EPQ). Quality of life (QoL) was measured using the Atrial Fibrillation Effect on Quality of Life (AFEQT) questionnaire. Anxiety and depression were assessed using the General Anxiety Scale (GAD-7) and the 9-item Patient Health Questionnaire (PHQ-9), respectively. We constructed stepwise linear regression analyses for factors related to the QoL and emotional state in patients with AF. RESULTS: A total of 531 AF patients completed the survey and were categorized into four groups based on their personality types. Of these patients (mean age: 67.12 ± 10.93 years, 50.28% male), 357 (67.23%) had paroxysmal AF, and 16.95% (n = 90) had a sanguine personality. Compared to patients with other personality types, those with a sanguine personality had the highest average AFEQT scores (P < 0.001) and the lowest scores of GAD-7 and PHQ-9 scales (P < 0.05). Furthermore, multiple linear regression analyses suggested that sanguine personality was also independently associated with better QoL and emotional states (P < 0.05). CONCLUSION: There is a significant association between the personality types and PROs in AF patients.

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BACKGROUND: Music therapy, aromatherapy and massage therapy are widely used in palliative care in patients near end-of-life with the aim to reduce symptom burden and improve quality of life (QoL). Recent research shows an increase in popularity and use of complementary and integrative medicine however a more thorough evidence base about their usefulness is required. OBJECTIVES: The aim of this study was to evaluate the available evidence on the use of music therapy, aromatherapy and massage therapy in palliative and hospice care and summarize findings. METHODS: A defined search strategy was used in reviewing literature from two major databases, MEDLINE and Embase for the period between 2010 and 2022. Studies were selected for further evaluation based on intervention type and relevancy. After evaluation using quality assessment tools, findings were summarised, and potential benefits were identified. RESULTS: Out of 1261 studies initially identified, 26 were selected for further evaluation. 16 evaluated music therapy, 4 aromatherapy and massage therapy. The most represented outcomes were pain, anxiety, well-being and QoL. Many studies demonstrated a short-term benefit in symptom improvement. Qualitative studies showed that these complementary methods are highly valued. CONCLUSION: Main results found that music and massage therapy had the most potential benefits on a range of outcome parameters, including pain and QoL. Future studies may consider using more qualitative and/or mixed methods to provide a more comprehensive evaluation of treatment.

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Home-dwelling people with dementia rely on their family members to be able to stay at home. This affects the family caregivers' quality of life (QoL). However, less is known about how male and female caregivers differ in their QoL. Our study aimed to investigate gender differences in caregivers' quality of life (QoL), whether emotional relationships influence QoL, and how their QoL changes over time. The study applied a cross-sectional and a longitudinal design to examine a total of 208 caregivers, 158 female and 50 male caregivers, and their family member with dementia. Regression analysis and t-tests were performed to identify what characteristics about caregivers and care receivers influence male and female QoL, and whether caregivers' QoL developed after one year. Both male and female caregivers' depression influenced their QoL. For females, their own social distress influenced their QoL, and for males, their experience of their care receivers' overemotional attitude influenced their QoL. From baseline to one-year follow-up their QoL decreased while their distress and experience of care receivers' emotional attitudes was stable. Significant gender-specific differences were found, indicating that gender must be considered when approving caregivers' needs and planning interventions for caregivers.

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Ozone therapy is a complementary treatment that has gained popularity due to its safety and wide range of applications. Systemic ozone therapy involves withdrawing 100 to 200 ml of blood, treating it with an oxygen-ozone mixture, and then reinfusing it. This process requires large-caliber venous access, which can be a limitation. To overcome this, alternative administration methods have been explored, including the use of ozonized solutions. The aim of this study is to evaluate the clinical effects of systemic ozone therapy on the perception of quality of life and to analyze the outcomes of different administration methods. Three groups of patients were treated: one group received classical systemic ozone therapy, another received ozone therapy via intravenous infusion of a 5% glucose solution, and the third group alternated between the two methods. The results showed an improvement in perceived quality of life in all groups, regardless of the method used. Thus, systemic ozone therapy showed efficacy in improving the perception of quality of life in our group. Moreover, intravenous infusion of a 5% glucose solution has made it possible to treat patients who could not be treated with the classical method, achieving similar results.

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Background: Despite continuous improvements in revascularization techniques, refractory angina without potential revascularization options remains a relevant clinical issue with significant impact on the patient's quality of life. Recently, a novel device, the Coronary Sinus Reducer (CSR), has been introduced into clinical practice as a therapeutic option for patients with disabling angina pectoris. In this single-center, observational study, we evaluated the mid-term (3-month) safety and efficacy of the CSR in a real-world cohort. Methods: The study population consisted of 55 patients with refractory angina without potential revascularization options, who were predominantly men (87.3%) with a high cardiovascular risk factor burden and advanced angina (baseline CCS angina class 3.15 ± 0.6). In terms of procedure safety, all patients underwent successful device deployment with only one periprocedural complication. Results: At the 3-month follow-up, we observed a statistically significant improvement in angina control measured CCS class and SAQ-7 total questionnaire along with increased abolition of physical limitation-6-MWT (233.3 ± 107.1 vs. 305.2 ± 126.8; p < 0.0001). Additionally, we observed significant improvement in terms of quality of life measurements SF-36, the EQ-5D-5L questionnaire, and the EQ-VAS. Conclusions: Our real-world data suggest that CSR implantation is a relatively safe procedure and appears to be particularly effective in relieving angina symptoms and improving quality of life in subjects with refractory angina.

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Background: Postoperative recovery in lung cancer patients is a complex process, where breathing exercises may play a crucial role in enhancing pulmonary function and quality of life (QoL). This study systematically reviews and meta-analyzes the impact of breathing exercises on post-surgical lung function and QoL in lung cancer patients. Methods: An extensive literature search was conducted across PubMed, Cochrane, Web of Science, and Embase databases using terms like "Lung Neoplasms", "breathing exercises", and "randomized controlled trial", supplemented by Medical Subject Headings (MeSH) and free words. The Cochrane risk of bias tool was used for quality assessment. A systematic review and meta-analysis on the effects of breathing exercises post-lung cancer surgery followed by data extraction and quality evaluation. Results: From 384 retrieved studies, 10 met the inclusion criteria and were selected for detailed analysis. The main outcomes assessed were postoperative pulmonary function indices and QoL measures. The majority of studies were deemed 'low risk' for random sequence generation and allocation concealment. However, due to the nature of the interventions, blinding was a 'high risk' in most cases. The meta-analysis revealed significant improvements in key pulmonary function indices: forced vital capacity (FVC%) increased by an average of 1.73%, maximal voluntary ventilation (MVV) improved by 7.58 L/min, and maximal inspiratory pressure (MIP) enhanced by 0.95 cmH2O. Additionally, there was a notable alleviation of postoperative dyspnea and an enhancement in QoL, with anxiety scores decreasing by an average of 3.42 points and complication rates reducing correspondingly. However, the interventions did not significantly affect physical activity levels or performance on the 6-minute walk test (6WMT), with effect sizes for these outcomes being non-significant. Conclusions: This study indicates that breathing exercises significantly improve postoperative pulmonary function and QoL in lung cancer patients. Future research should delve into the mechanisms behind these exercises and evaluate their long-term rehabilitation effects. Customized programs could further optimize recovery and enhance patient QoL.

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BACKGROUND: Family members play a crucial role in ICU patients' treatment and decision-making, despite the stress and uncertainty they may experience, ensuring high-quality medical care. Providing comfortable spaces with noise-reducing techniques can boost family satisfaction. Further research is needed to support families in intensive care units (ICU). This study aims to evaluate family satisfaction and decision-making in polytrauma patients in the ICU, identify improvement opportunities, and analyze demographic and socioeconomic factors influencing satisfaction. METHODS: This cross-sectional study was conducted at King George's Medical University, Lucknow, over a period of one year. A total of 66 patients, aged between 20 and 70, their family members, and those who gave written informed consent were included. Exclusion criteria included those who died within 48 hours of ICU admission or did not give consent. Patient characteristics, such as age, sex, Acute Physiology and Chronic Health Evaluation (APACHE) II score, and hospital stay length, were also collected. The family satisfaction in the intensive care unit (FS-ICU) questionnaire, consisting of 24 items with five Likert response options, was used to assess satisfaction levels in ICU care and decision-making. RESULTS:  A study of 66 patients which included 78.79% male and 21.21% female. The majority of the patients (66.67%) lived with their family members. The mean ICU stay was 13.03 days, with an APACHE score of 17.39. The results showed that families were very satisfied with a considerable portion of the ICU stay. The overall satisfaction score was 57.00. Families were less satisfied with the atmosphere in the ICU and involvement in the decision-making process. The satisfaction scores were comparable for both genders, except for the time taken to respond to questions, which was significantly higher for women. CONCLUSION: Although families were very satisfied with the ICU stay, several areas were identified as having potential for improvement. The present study shows that the quality of treatment and communication during hospitalization is a major factor in the need for follow-up care. This underlines the need for a constant focus on communication skills in the training of nurses and doctors and in their practical training in the ICU. Participation in decision-making, especially by family members of survivors, was identified as an area for improvement. We recommend more research to be conducted in India focusing on family satisfaction with involvement in the decision-making in ICU considering the unique racial, cultural, ethnic, and linguistic differences in India.

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Developmental and epileptic encephalopathies (DEEs) present significant treatment challenges due to frequent, drug-resistant seizures and comorbidities that impact quality of life. DEEs include both developmental encephalopathy from underlying pathology and epileptic encephalopathy where seizures exacerbate cognitive and behavioral impairments. Classification by syndrome and etiology is essential for therapy and prognosis, with common syndromes like infantile epileptic spasms syndrome and Dravet syndrome having specific first-line treatments. Etiologies are predominantly genetic, structural, or combined, with targeted therapies increasingly available. Surgery aims to improve seizure control but also may improve development, if the epileptic encephalopathy can be ameliorated. Timely intervention can reduce seizures and epileptiform discharges, maximizing developmental potential and allowing reduction in antiseizure medication. In cases requiring extensive resections, new deficits may be offset by developmental gains. Studies indicate that parents are generally willing to accept some deficits for significant seizure reduction.

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Objectives: There are few data on Pressurized IntraPeritoneal Aerosol Chemotherapy with cisplatin and doxorubicin (PIPAC C/D) in women with primary unresectable or recurrent platinum-resistant peritoneal metastasis (PM) from ovarian cancer (OC). We evaluated survival, histological and cytological response, Quality of Life (QoL) and toxicity after PIPAC C/D in these patients. Methods: Retrospective analysis of patients from the prospective PIPAC-OPC1 and -OPC2 studies. The histological response was evaluated by the Peritoneal Regression Grading Score (PRGS). QoL questionnaires were collected at baseline and after third PIPAC or 60 days. Adverse events were collected until 30 days after the last PIPAC. Demographic and survival data were analysed based on intention to treat. Response, QoL and toxicity were analysed per protocol (≥1 PIPAC). Results: Twenty-nine patients were included. Five patients (17 %) were non-accessible at PIPAC 1. One patient was excluded due to liver metastases at PIPAC 1. Thus, 23 patients had 76 PIPACs (median 2, range 1-12). Median overall survival was 8.2 months (95 % CI 4.4-10.3) from PIPAC 1. Biopsy data were available for 22 patients, and seven (32 %) patients had a major/complete histological response (PRGS≤2) at PIPAC 3. No cytological conversions were registered. Symptoms and function scores worsened, while emotional scores improved. Three patients had severe adverse reactions (two ileus, one pulmonary embolism); no life-threatening reactions or treatment-related mortality was observed. Conclusions: PIPAC C/D was feasible and induced histological regression in a substantial proportion of patients with platinum-resistant PM from OC. Larger studies are needed to evaluate impact on survival.

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Over the course of nearly six decades since the inception of initial trials involving 5-FU in the treatment of mCRC (metastatic colorectal cancer), our progressive comprehension of the pathophysiology, genetics, and surgical techniques related to mCRC has paved the way for the introduction of novel therapeutic modalities. These advancements not only have augmented the overall survival but have also positively impacted the quality of life (QoL) for affected individuals. Despite the remarkable progress made in the last two decades in the development of chemotherapy, immunotherapy, and target therapies, mCRC remains an incurable disease, with a 5-year survival rate of 14%. In this comprehensive review, our primary goal is to present an overview of mCRC treatment methods following the latest guidelines provided by the National Comprehensive Cancer Network (NCCN), the American Society of Clinical Oncology (ASCO), and the American Society of Colon and Rectal Surgeons (ASCRS). Emphasis has been placed on outlining treatment approaches encompassing chemotherapy, immunotherapy, targeted therapy, and surgery's role in managing mCRC. Furthermore, our review delves into prospective avenues for developing new therapies, offering a glimpse into the future of alternative pathways that hold potential for advancing the field.

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Introduction: Neuromuscular diseases (NMD) include different types of diseases depending on the deficient component of the motor unit involved. They may all be interested by a progressive and sometimes irreversible pump respiratory failure which unfortunately for some NMD may start soon after the diagnosis. Within this vast group of patients those affected by muscle diseases are a subgroup who comprises patients with an average earlier onset of symptoms compared to other NMD. Indeed it is also important to comprehend not just the patient's burden but also the surrounding families'. Defining the end of life (EoL) phase in these patients is not simple especially in the young patient population. Consequently, the late stage of disease remains poorly defined and challenging. Objectives: The aim of this review is to describe the EoL phase in NMD patients with attention to QoL and psycological status. Methods: The focus would be on one hand on the management of the psychological burden, the communication barriers, and tone of humor. Results: Those topics have been described being crucial in this group of patients as they increase tensions and burden of both patient and family, and between them and the outside world. Thus also causing their social isolation, increasing anxiety and reducing their quality of life. On the other hand the use of cough clearance devices and all the respiratory supports and their withdrawn are carefully evaluated in the view of alleviating respiratory symptoms, improving patient quality of life and above all reaching the patient's goals of care. Conclusions: Although there is no cure, the advent of supportive interventions including multidisciplinary care (MDC) has improved all the aspects of dying for patients affected by NMD; nevertheless there still a long pathway ahead.

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