Long-term Quality Of Life Research Articles

Strategies for early identification and management of sepsis in children

Pediatric sepsis continues to be a major public health concern, leading to considerable morbidity and mortality despite progress in medical treatments. This review explores methods for the prompt detection and management of sepsis in children, highlighting the importance of early recognition and intervention. Diagnosing sepsis in children is difficult because of its non-specific symptoms and the diverse ways it presents in different age groups. Key strategies include enhancing parental education, improving pre-hospital recognition by emergency medical services (EMS), and leveraging the pivotal role of nurses in emergency settings. Effective management involves prompt administration of antimicrobials, appropriate use of vasoactive agents, and comprehensive post-sepsis care to improve long-term outcomes. Advanced diagnostic tools and rapid, reliable biomarkers are crucial for early detection. Additionally, antimicrobial stewardship programs and public health campaigns play a vital role in reducing sepsis incidence. By focusing on these strategies, healthcare providers can significantly improve the early identification and management of sepsis in children, enhancing survival rates and long-term quality of life for pediatric sepsis survivors.

Long-term outcomes of congenital cytomegalovirus infection in children early identified by extended hearing-targeted screening

ObjectivesCongenital Cytomegalovirus (cCMV) has been associated with hearing, vision, and neurodevelopmental long-term sequelae. Despite the social burden associated with the disease, a universally accepted consensus on screening, diagnostic, therapeutic and follow-up approaches has not been reached. The present observational retrospective study aims at describing long-term sequelae and radiological abnormalities associated with cCMV in children early identified by extended hearing-targeted screening and evaluated by audiological follow-up in a single III Level Audiological Referral Center for at least 2 years. MethodsAudiological neonatal and follow-up data were available for all subjects. Data collection included clinical neonatal and virological assessment at birth. Ophthalmological, neurodevelopmental and neuroradiological follow-up abnormalities compatible with cCMV sequelae were collected by clinical reports. Spearman's rank correlation coefficient (rho-ρ) was used to evaluate possible correlations among the considered parameters. Results61 newborns were identified by extended hearing-targeted cCMV screening and diagnosed mostly (83.6 %) by PCR viral DNA extraction in urine collected within the 15° day of life. Seventeen babies were born preterm, with a mean gestational age of 33.5 weeks. Sixteen patients (26.2 %) were admitted to an Intensive or sub-Intensive Neonatal Care Unit. At birth, 35 newborns were symptomatic (57.3 %), and 19 of them received antiviral treatment by valganciclovir or ganciclovir. Overall, 20 children (32.7 %) were diagnosed with sensorineural hearing loss (SNHL), among them 17 (85 %) were refer at the newborn hearing screening while 3 (15 %) were Pass. 5/20 children (25 %) presented isolated SNHL, while in 15/20 (75 %) children SNHL was associated to other long-term sequelae. In 5 patients (25 %) a progression of the hearing threshold was observed, with a mean age of progression of 26 months of age. Risk factors for progression were a worse final hearing threshold (Spearman's ρ = 0.434; p = 0.0001) and a worse hearing threshold at birth (Spearman's ρ = 0.298; p = 0.020). Thirteen children were fitted with hearing aids, 8 of whom subsequently underwent cochlear implantation. Concerning long term impairments, 10/61 children (17 %) presented a variety of ophthalmological sequelae, while 16/40 cCMV patients (40 %) were diagnosed with neurodevelopmental abnormalities. Language delays were significantly associated with a worse hearing threshold (ρ = 0.582; p = 0.0001) and with other neurocognitive abnormalities (ρ = 0.677, p = 0.0001). 30 children underwent radiological brain evaluation by Magnetic Resonance Imaging, and 63.3 % of them presented abnormalities compatible with cCMV. Mean viral load at birth did not show significant associations with long-term sequelae. ConclusionsThe study highlights the diverse and significant long-term sequelae of cCMV infection detected through early screening. With a significant proportion of cCMV children developing sensorineural hearing loss, ophthalmological and neurodevelopmental issues, the results emphasize the importance of continuous, multidisciplinary follow-up. Early identification and tailored interventions are crucial for improving the long-term health and quality of life of children affected by cCMV.

Understanding Pediatric Kidney Transplant Rejection: Its Pathophysiology, Biomarkers, and Management Strategies.

End-stage kidney disease requires comprehensive management strategies to ensure patient survival and improve quality of life. Kidney transplantation remains the preferred treatment option, offering superior long-term outcomes. However, graft rejection remains a significant concern, and pediatric patients often require tailored immunosuppressive regimens due to differences in immune response compared to adults. Although the past decade has seen significant improvements in graft and patient survival among pediatric kidney transplant recipients, many questions remain unanswered. There is an ongoing search for non-invasive biomarkers capable of timely detecting graft rejection and novel treatment regimens, specifically tailored to pediatric practice. This review aims to discuss the current knowledge on kidney transplant rejection in pediatric patients, including epidemiology, pathophysiology, and risk factors. In addition, it seeks to explore the latest advancements in biomarkers for early detection of rejection and evaluate current and emerging immunosuppressive therapies. The possible outcomes of this review include identifying gaps in current research, providing recommendations for future studies, and suggesting strategies to enhance clinical practice. By synthesizing the latest evidence, this review aims to contribute to improved long-term outcomes and quality of life for pediatric kidney transplant recipients.

Exploring depression risk among breast cancer survivors: A nationwide cohort study in South Korea.

19 Background: With advances in early diagnosis and treatment, the population of breast cancer survivors globally continues to grow. Depression among these survivors poses a significant concern for their long-term survivorship and overall quality of life. This study aims to investigate the incidence of depression among breast cancer survivors and identify associated risk factors. Methods: We used the National Health Insurance Service database of Korea from 2010 to 2016 and examined 59,340 breast cancer survivors and 1:2 age-matched individuals without breast cancer to investigate the incidence of depression. Cox proportional hazards regression was used to calculate the hazard ratio (HR) and 95% confidence interval (CI). The risk of depression was assessed based on age, categorizing individuals as under or over 50 years old. We conducted 1-year, 3-year, and 5-year lag sensitivity analysis to demonstrate changes in risk over time. The study identified risk factors for developing depression through multivariable Cox regression, and Kaplan-Meier analysis was conducted to illustrate the incidence probabilities of depression in breast cancer survivors. Results: Breast cancer survivors exhibited a 39% increased risk of depression compared to individuals without breast cancer, and those under the age of 50 years facing higher risk than their older counterparts (HR 1.64, 95% CI 1.58-1.70 and HR 1.23, 95% CI 1.20-1.27, respectively). Chemotherapy (anthracycline and taxane) and endocrine therapy (tamoxifen and aromatase inhibitor) emerged as potential risk factors for depression among breast cancer survivors. Sensitivity analysis revealed a decreasing trend in depression risk over time, particularly among survivors aged older than 50 years. Conclusions: This study highlights a significant increase in depression risk among breast cancer survivors, particularly those under 50 years old. Specific treatments such as chemotherapy and endocrine therapy were identified as potential risk factors. These findings emphasize the necessity for targeted interventions and support strategies to address the heightened risk of depression in breast cancer survivors, ultimately improving their long-term well-being and quality of life.

Outcomes of Colonic and Gastric Tube Transplants after Caustic Esophageal Burn in Children: A 33-Year Review.

Introduction: Accidental caustic burns of the esophagus in children represent a significant global health challenge, often necessitating esophageal reconstruction. The aim of this study is to compare the efficacy and morbidity related to esophagus replacement with colonic and gastric tube transplants in a pediatric population followed for caustic stenosis. Methods: This retrospective study was conducted at a tertiary pediatric surgery unit for children treated from January 1989 to December 2022. We compared colonic and gastric tube esophageal replacement. Short term (within 30 days) and mid-term outcomes and complications were reviewed. Statistical evaluation was considered using a Chi-square test for categorical data analysis. Results: A total of 124 children with caustic esophageal burns were included. Among them, 23 (18.5%) had a gastric tube transplant for esophagus replacement and 101 (81.5%) a colonic transplant. During surgical intervention, we found a significantly higher risk of complications when using a colonic transplant (34%, p < 0.001). There was no significant statistical difference in postoperative short term and mid-term complications between the two techniques. Twenty-six (26%) of the children required a reoperation, with a higher risk in the gastric tube transplant group (p < 0.001). Endoscopic dilatation after surgery was also performed on a higher number of children who had received a gastric tube transplant (p = 0.005). Overall, 97.6% recovered full normal oral feeding. Conclusions: We found that colonic and gastric tube replacement are both good options for pediatric esophageal replacement after a caustic injury and show effectiveness over time. Gastric tube transplants carried a slightly higher risk of reoperations and a higher number of dilatations post-surgery. However, our groups are not really comparable, due to the much higher number of colonic transplants. Both surgical options have to be considered during surgery, and the choice depends on the anatomy of the patient. Our future research will focus on assessing long term quality of life and the potential risk of neoplastic complications.

Hang up your cleats and hope for the best? A cross-sectional study of five health domains in retired elite female rugby players

ObjectivesTo investigate retired elite female rugby players’ health outcomes (and their relationships) in five key areas (musculoskeletal, cognitive, mental, reproductive/endocrinological and cardiovascular) and how those compare with the general population.MethodsFemale...

Feasibility, efficacy, and safety of animal-assisted activities with visiting dogs in inpatient pediatric oncology.

Childhood cancer entails a heavy burden for patients and their families. Recent advances in overall survival rates have increasingly brought long-term quality of life into focus. Animal-assisted activities (AAAs) have long been hypothesized to alleviate the burden on pediatric patients and their peers in the hospital setting. However, their use in inpatient pediatric oncology has been a sensitive issue mainly due to the fear of infections, resulting in a lack of studies. This study presents data on the feasibility, safety, and efficacy of AAAs from a single German center. Between 2018 and 2022, 60 patients (median age = 10.3years) diagnosed with malignancy and undergoing treatment were visited by an intervention dog (total visits = 100). Patients were screened for infections as per hospital policy, with additional microbiological testing performed based on symptoms. The dog was screened for human pathogens and zoonoses. Microbial data and hospitalizations were analyzed from twomonths prior to the first visit until twomonths after the last visit. Acceptance of being in the hospital, both with and without planned animal-assisted interventions and pre- and post-intervention state stress, were measured using a validated visual analogue scale (0-10). Patients benefited from AAAs, showing increased acceptance of being in the hospital (median: 7.25 vs. 4.50, P < 0.001) and decreased median state stress ratings one hour after the visit compared to one hour before the visit (1.00 vs. 4.25, P < 0.001). The intervention did not result in an increased number of infections or unplanned hospitalizations, and no zoonoses were detected. All microbial screening tests of the dog were negative. AAAs with visiting dogs in inpatient pediatric oncology are feasible and safe. Although they hold promise for enhancing patients' well-being, further prospective studies are needed. Supplementary file2 (MP4 240076KB).

Long-term health-related quality of life of patients after prolonged weaning depending on weaning status

Long-term outcome in patients with prolonged weaning is known to be impaired, particularly against the background of their weaning status; however, data on their health-related quality of life (HRQL) are sparse. HRQL was measured in patients with prolonged weaning using the Severe Respiratory Insufficiency Questionnaire (SRI). Overall, 39 out of 83 patients with prolonged weaning filled in the SRI questionnaire. The median interval between discharge from hospital and HRQL assessment was 3.5 years (IQR 2.4-4.5 years). In the total group, the median SRI summary score was 56.4 (IQR 38.8-73.5). Patients with unsuccessful weaning and subsequent invasive home mechanical ventilation (N=15) had worse HRQL as estimated from the SRI summary score when compared to those with successful weaning both without (n=13) and with subsequent long-term non-invasive ventilation (NIV) (n=11); Kruskal-Wallis-Test: H (2, n=39) = 7,875446; P=0.0195. Statistically significant differences indicating worse HRQL in patients with invasive home mechanical ventilation were particularly evident in the following SRI subscales: Social relationships (P=0.0325), Anxiety (P=0.0096), and Psychological well-being (P=0.0079). HRQL is substantially impaired in patients with unsuccessful prolonged weaning and subsequent invasive home mechanical ventilation compared to those with successful prolonged weaning. Further studies incorporating higher case numbers are needed to assess other conditions potentially affecting HRQL in patients with prolonged weaning.

Epidermolysis Bullosa: Innovative Treatment with Stem Cells, a Systematic Review

Introduction: epidermolysis bullosa is a set of genetic disorders that originate from modifications in certain skin proteins that alter the union and structure of the dermis and epidermis. Clinically, it manifests itself through blisters. However, these lesions can spread to other areas. areas of the body, thus causing the appearance of chronic wounds. The conventional treatment of Epidermolysis Bullosa has not been shown to improve the long-term quality of life of those who suffer from it, which is why researchers propose new therapies that allow improvements in the quality of life of patients, being one of the most promising, the use of stem cells. Methods: randomized clinical trials were selected that evaluated the efficacy and safety of stem cell treatment in patients with Epidermolysis bullosa compared to usual therapy and its cost-effectiveness. Results: based on the selected articles, several variables were measured. Four articles demonstrated the effectiveness of stem cell treatment compared to conventional treatment; two articles measured the economic considerations and access to this new treatment; four articles compared the benefits and disadvantages of using stem cells in patients with Epidermolysis bullosa; and finally, five articles demonstrated the impact that stem cells have in improving the quality of life of patients with Epidermolysis bullosa who undergo this type of therapy. Conclusions: at a global level, the effectiveness of the use of stem cells opens a promising research perspective that seeks to benefit the most vulnerable population affected by this disease, since it plays a key role in the significant reduction of blistering lesions, this represents a positive advance. in the management of the disease, as well as the improvement in its biological, psychological and social sphere, allowing an early introduction to daily activities, generating significant savings of resources for caregivers and for the State. Because, in Latin America, to date there is little research in this area, it should be considered a very promising line of research in the field of Dermatology. Similar situation in the case of Ecuador, where since there are no statistics on patients with this disease, nor data that contribute to the treatment of this vulnerable group, these investigations will provide a solid basis for researchers to adopt this new therapy

The optimal degree of core temperature for hypothermic circulatory arrest in complex aortic arch surgery: results from 1310 patients.

The optimal core temperature for hypothermic circulatory arrest during aortic arch surgery remains contentious. This study aims to evaluate patient outcomes under various temperatures within a large single-centre cohort. Between 2010 and 2018, patients diagnosed with type A aortic dissection underwent total arch replacement at Fuwai Hospital were enrolled. They were categorized into 4 groups: deep hypothermia group, low-moderate hypothermia group, high-moderate hypothermia group and mild hypothermia group. Clinical data were analysed to ascertain differences between the groups. A total of 1310 patients were included in this cohort. Operative mortality stood at 6.9% (90/1310), with a higher incidence observed in the deep hypothermia group [29 (12.9%); 35 (6.9%); 21 (4.8%); 5 (3.4%); all adjusted P < 0.05]. Overall 10-year survival was 80.3%. Long-term outcomes did not significantly differ among the groups. Multivariable logistic analysis revealed a protective effect of higher core temperature on operative mortality (odds ratio 0.848, 95% confidence interval 0.766-0.939; P = 0.001). High-moderate hypothermia emerged as an independent protective factor for operative mortality (odds ratio 0.303, 95% confidence interval 0.126-0.727; P = 0.007). Multivariable Cox analysis did not detect an effect of hypothermic circulatory arrest on long-term survival (all P > 0.05). High-moderate hypothermia (24.1-28°C) offers the most effective protection against surgical mortality and is therefore recommended. Different hypothermic circulatory arrest temperatures do not influence long-term survival or quality of life.

Quality of Life in Patients Affected by Facial Basal Cell Carcinoma: Prospective Longitudinal Pilot Study and Validation of Skin Cancer Index in Lithuanian Language.

Facial basal cell carcinoma (BCC) poses significant challenges due to its potential for local destruction and impact on quality of life (QoL). Continuous research is necessary to identify novel factors influencing the quality of life within this demographic across diverse cultural settings. The aims of this study were to translate, culturally adapt, and validate the Lithuanian version of Skin Cancer Index, subsequently utilizing this questionnaire in the pilot phase of the study to achieve the following: (1) identify the differences in short- and long-term QoL, (2) establish empirical correlations between SCI scores and aesthetic facial regions, evaluate the potential differences between age, gender, and tumor size groups. A prospective longitudinal study was conducted with 100 consecutive patients. The SCI was translated into Lithuanian language, with a rigorous assessment of its psychometric properties to confirm validity. Alongside hypothesis testing, a detailed analysis of variables was conducted. Statistical techniques, including t-tests and ANOVA, were employed to compare scores across demographic and clinical groups, with effect size calculations for further interpretation. Our findings demonstrate that the Lithuanian SCI successfully fulfills the criteria established by the COSMIN checklist. Surgical treatment for facial BCC notably enhances QoL, particularly evident six months post-surgery. Analysis of SCI scores identified demographic and clinical factors associated with lower QoL, including female gender, treatment with skin plasty, and tumor sites in aesthetically sensitive areas like the cheek, nose, and eyelid. The Lithuanian version of the SCI is a reliable and valid tool for assessing QoL in facial BCC patients. Our findings underscore the global relevance of understanding the multifactorial influences on QoL in BCC patients. Early diagnosis, less invasive treatment approaches, and tailored post-operative care are crucial in minimizing the psychological, social, and appearance-related burdens of facial BCC.

Defining optimal left ventricular assist device short-term outcomes may provide insight into programmatic quality assessment

BackgroundPatients have substantial variability in perioperative outcomes after left ventricular assist device (LVAD) implant. A perioperative multidimensional tool integrating mortality, adverse events (AEs), and patient-reported outcomes to assist in quality improvement initiatives is needed. MethodsPatients undergoing HeartMate 3 LVAD implant (1/1/2017 and 1/31/2024) in the Society of Thoracic Surgeons’ Intermacs registry were studied. A Cox proportional hazard multivariable analysis incorporating AEs as time-varying covariates for mortality out to 180 days was used to generate the Intermacs Short-Term Composite Quality (INSITE) score, reflecting the adjusted hazard ratio (HR) for mortality contributed by each AE, applying global ranking methodology. In those alive and on support at 6 months, multivariable logistic regression (odds ratio, OR) was used to examine the impact of AEs on health-related quality of life (QOL) at 180 days, captured through the INSITE-QOL score. Failure to achieve ≥1 point increase in visual analog scale (VAS) from baseline was the event in the QOL analysis. ResultsOf 13,148 patients, 4,389 (33.4%) suffered at least one AE or death through 180 days. Stroke (survival: HR 13.1; QOL: HR 1.7), dialysis (survival: HR 31.4; QOL: HR 4.2), prolonged respiratory failure (survival: HR 5.7; QOL: HR 2.3), reoperation (Survival: HR 3.4; QOL: HR 1.6) and right heart failure (survival: 5.0; QOL: HR 1.4), contributed to both mortality and failure to improve QOL at 180 days (all p<0.05). The median INSITE and INSITE-QOL scores were 0.0 [0.0,1.6] and 0.0 [0.0,0.0], respectively. At 9.4% (n=17) of centers, a high INSITE score (≥13) was present in 15% of patients while the top 25% of centers had perfect INSITE-QOL scores in at least 75% of patients. ConclusionsAEs after LVAD confer differential impact on mortality and QOL, enabling development of global rank outcome scores. Given the high mortality hazard conferred by 180-day AEs, center-specific quality interventions aimed at reducing early complications provide the greatest opportunity to improve long-term survival and QOL.

Pulmonary artery aneurysm: computed tomography (CT) imaging findings and diagnosis.

Pulmonary artery aneurysm (PAA) is a rare pulmonary vascular disease with nonspecific symptoms and various etiologies. As the disease progresses, in addition to the dilation of the pulmonary arteries, it may be accompanied by remodeling of the cardiac structure and changes in the morphology of the aorta. Recognizing the cause of PAA is therefore a clinically challenging task. In this review article, we provide an overview of various causes of PAA with the support of corresponding imaging findings on computed tomography pulmonary angiography (CTPA) examination. Firstly, from the perspective of hemodynamics, a logical diagnosis is provided according to whether the main pulmonary artery (MPA) is dilated, and whether the PA is dilated locally or diffusely. Secondly, for the imaging examination of vascular wall lesions, due to the limitations of ultrasound examination and interventional procedures, the irreplaceability of dual-phase CTPA examination in disease assessment is especially emphasized. Finally, for highly suspected disorders, it is necessary to comprehensively check with the patient whether there is a family history or past medical history. For patients with PAA, especially those with Marfan syndrome (MFS) or arteritis, adequate preoperative imaging evaluation, regular postoperative radiographic follow-up, and concurrent treatment of the underlying disease (if necessary) are crucial, which are related to the prognosis and long-term quality of life of such patients. Despite the nonspecific features of PAA presentation, a thorough examination of the patient's clinical history and imaging characteristics will play an important role in diagnosing PAA and planning patient management strategies.

Long-term health-related quality of life and related factors in children with severe hemophilia A who received regular low-dose prophylaxiss

Objective: To investigate long-term health-related quality of life (HRQoL) and related factors in children with severe hemophilia A (HA) who received regular low-dose prophylaxis. Methods: Clinical data of severe HA children who began to receive regular low-dose coagulation factor Ⅷ (FⅧ) prophylaxis in Peking Union Medical College Hospital from January 1, 2008 to December 31, 2011 were retrospectively enrolled. The longest last follow-up period was May 31, 2023. The attendance of school or work and daily physical activity during the last follow-up were investigated. The patients were divided into full attendance group and incomplete attendence group according to attendance. The patients were divided into into exercise attainment group (reached Chinese sports recommendation) and exercise nonattainment group according to the exercise status. Barthel score was used to assess activities of daily living and Haemo-QoL was used to assess quality of life. Long-term HRQoL for children aged 8-16 years and patients aged 17 years and above were assessed using Haemo-QoL SF and Haem-A-QoL versions, respectively. Spearman correlation analysis was used to examine the correlation between treatment conditions and Haemo-QoL scores. Results: A total of 22 cases were enrolled, the prophylaxis initiation age ranged from 1.8-17.9 (10.4±3.8) years old. The average prophylactic FⅧ dose during low-dose prophylaxis was 24.2 U/kg per week and the follow-up time was 6.3-15.1 (9.6±2.8) years. At the last follow-up, the age of the patients was (20.2±5.4) years, of which 14 (63.6%) were adults over 18 years old. There were 15 patients in the full attendance group and 7 patients in the incomplete attendence group. Compared with the full attendance group, the incomplete attendence group had a smaller preventive treatment dose [M(Q1, Q3), (28.4±11.1) vs (15.3±3.7) U/kg, P=0.012], shorter preventive treatment time [148. 1 (18.6, 346.5) vs 48.0 (32.0, 156.9) weeks, P=0.017], and higher annual joint bleeding rate (AJBR) [12.5 (6.0, 22.3) vs 14.2 (13.2, 17.8) times, P=0.017]. There were 7 cases in the exercise attainment group and 15 cases in the exercise nonattainment group. Compared to the exercise attainment group, the exercise nonattainment group had shorter preventive treatment time[313. 7 (156.9, 366.0) vs 48.0 (16.5, 108.9) weeks, P=0.006], a higher AJBR [7.0 (5.1, 10.0) vs 23.3 (12.5, 29.8), P=0.003] and a higher hemophilia joint health score (HJHS) [9.0 (2.0, 15.5) vs 23.0 (12.0, 27.8), P=0.014]. Barthel score showed 81.8% (18 cases) of the patients' living ability was not influenced by the illness. In Haemo-QoL score, the total score of Haemo-QoL SF in 7 cases was (47.6±17.0) scores, the total score of Haem-A-QoL in 15 cases was (45.2±22.6) scores. The daily activity dimension of the Haem-A-QoL score was the lowest [38.2 (10.9, 45.5) scores], which was positively correlated with the starting age of prophylactic initiation (r=0.501, P=0.057), and negatively correlated with the duration of prophylaxis (r=-0.545, P=0.036). Conclusions: Regular low-dose prophylaxis could improve the long-term HRQoL of some children with severe HA, and children with higher prophylactic doses and longer prophylactic treatment time have higher quality of life.

Quality of Life in Lymphedema Patients Treated by Microsurgical Lymphatic Vessel Transplantation-A Long-Term Follow-Up.

Lymphedema is a chronic condition characterized by the accumulation of lymph fluid in the upper or lower extremities, leading to swelling, discomfort, and disability in everyday life. While various treatment modalities exist, microsurgical lymphatic vessel transplantation (LVT) has emerged as a promising option. However, there is little to no long-term follow-up data regarding patients' improvement in quality of life for this surgical technique. The present study conducts an investigation of the long-term health-related quality of life (HRQoL) over more than 20 years in patients with lymphedema treated with LVT and accomplishes this by utilizing an adapted SF-12 survey. A retrospective analysis was conducted on patients who underwent LVT between 1 January 1983 and 1 October 2010 at LMU Clinic Munich (n = 35). Quality of life scores were assessed preoperatively and today in terms of physiological conditions, psychological conditions, and burden of therapy using a SF-12 survey adapted to the symptoms and impairments that chronic lymphedemas are known to cause. Our findings demonstrate a significant improvement in HRQoL following LVT, with notable enhancements in physiological and psychological conditions such as burden of therapy. Physiological conditions showed a significant positive change of 3.2648 (p < 0.01). Psychological conditions improved significantly by a factor of 2.0882 (p < 0.01). Additionally, the burden of therapy improved significantly by 1.5883 points (p < 0.01). Previous studies have already shown a significant improvement of HRQoL within the first postoperative years for patients treated by LVT. This study also demonstrates significant long-term improvement after LVT, thus underlining the effectiveness of using LVT to improve the quality of live for patients with both primary and secondary lymphedema long-term.

Early decompressive surgery improves long-term prognosis in patients with intracerebral hemorrhage.

Multiple studies have shown that early decompressive surgery in patients with intracerebral hemorrhage can effectively limit hematoma expansion, reduce perihematomal edema, and improve prognosis. However, these studies are limited by small sample sizes and short follow-up times. To analyze the effect of early decompressive surgery on the long-term prognosis of patients with cerebral hemorrhage and identify the influencing factors for poor prognosis. A retrospective analysis of 78 patients with cerebral hemorrhage admitted between January 2020 and December 2022 was conducted. Patients were divided into early and delayed surgery groups for comparison of outcomes such as mortality rate, modified Rankin Scale score, and Short Form-36 scores. Additionally, factors influencing long-term prognosis were analyzed through logistic regression based on significant differences observed between groups. The early decompressive surgery group showed superior outcomes with lower mortality rates, modified Rankin Scale (mRS) scores, hematoma expansion rates, and perihematomal edema volumes compared to the delayed surgery group (P< 0.05). Additionally, age, preoperative Glasgow Coma Scale (GCS) score, preoperative hematoma volume, and a history of hypertension or diabetes were identified as independent prognostic factors for patients with cerebral hemorrhage, with odds ratios (ORs) greater than 1. Early decompressive surgery can improve the long-term prognosis and quality of life of patients with cerebral hemorrhage, reduce mortality rates, and decrease hematoma expansion and perihematomal edema. Older patients, those with higher preoperative hematoma volume and GCS score, and those with coexisting hypertension and diabetes should be given special attention to decrease the occurrence of adverse prognosis.

Changes in quality of life 1 year after intensive care: a multicenter prospective cohort of ICU survivors

BackgroundWith survival rates of critical illness increasing, quality of life measures are becoming an important outcome of ICU treatment. Therefore, to study the impact of critical illness on quality of life, we explored quality of life before and 1 year after ICU admission in different subgroups of ICU survivors.MethodsData from an ongoing prospective multicenter cohort study, the MONITOR-IC, were used. Patients admitted to the ICU in one of eleven participating hospitals between July 2016 and June 2021 were included. Outcome was defined as change in quality of life, measured using the EuroQol five-dimensional (EQ-5D-5L) questionnaire, and calculated by subtracting the EQ-5D-5L score 1 day before hospital admission from the EQ-5D-5L score 1 year post-ICU. Based on the minimal clinically important difference, a change in quality of life was defined as a change in EQ-5D-5L score of ≥ 0.08. Subgroups of patients were based on admission diagnosis.ResultsA total of 3913 (50.6%) included patients completed both baseline and follow-up questionnaires. 1 year post-ICU, patients admitted after a cerebrovascular accident, intracerebral hemorrhage, or (neuro)trauma, on average experienced a significant decrease in quality of life. Conversely, 11 other subgroups of ICU survivors reported improvements in quality of life. The largest average increase in quality of life was seen in patients admitted due to respiratory disease (mean 0.17, SD 0.38), whereas the largest average decrease was observed in trauma patients (mean -0.13, SD 0.28). However, in each of the studied 22 subgroups there were survivors who reported a significant increase in QoL and survivors who reported a significant decrease in QoL.Conclusions This large prospective multicenter cohort study demonstrated the diversity in long-term quality of life between, and even within, subgroups of ICU survivors. These findings emphasize the need for personalized information and post-ICU care.Trial registration: The MONITOR-IC study was registered at ClinicalTrials.gov: NCT03246334 on August 2nd 2017.

Longitudinal Quality-of-Life Outcomes of Skull Base Chondrosarcoma Patients following Surgical Resection

Abstract Objective Owing to the rarity of skull base chondrosarcomas (CS), much of its natural history and long-term impact on patient quality of life (QoL) are not well studied. This novel study demonstrates QoL among CS patients following radical treatment constituting surgery and postoperative radiotherapy over 2 decades. Study Design Retrospective review and prospective data collection to obtain patient demographic, tumor characteristics, clinical symptoms, and patient-reported QoL outcomes using the 36-Item Short Form Health Survey (SF-36). Setting/Participants Patients diagnosed with CS who underwent radical intent surgical resection by the senior author and adjuvant early postoperative proton beam therapy. Results Twenty-eight skull base CS patients were identified, with 19 patients completing full treatment course. Mean long-term follow-up was 148.9 months. Diplopia symptom resolution was high. No significant deterioration in SF-36 Physical Health Component (PHC) and Mental Health Component (MHC) scores was observed at postoperative and long-term follow-up. General health was stable initially but deteriorated in long term (Δ −18.88, minimal clinically important difference [MCID]: 9.86, p = 0.04). Compared with age-matched Canadian control patients, CS patients reported similar PHC scores at baseline and follow-up. CS patients reported lower MHC scores (45.8 vs. 50.9, p = 0.13) preoperatively, which persisted at follow-up decreasing by 1.9 (43.9 vs. 53.7, p = 0.03); this difference, however, did not reach MCID threshold of Δ 5.9. Conclusion We present the longest follow-up data on CS demonstrating stable long-term QoL with aggressive surgery. Tumor control was high and preoperative tumor size did not affect long-term QoL. Preoperative QoL was lower among CS compared with Canadian normative data. Postoperatively, only the decline in physical functioning QoL scores exceeded MCID. At long-term follow-up, the decline in physical functioning, social functioning, and general health exceeded MCID. Overall, QoL among CS patients remained lower at long-term follow-up despite absence of tumor progression and resolution of symptoms.

Two-year mortality and seizure recurrence following status epilepticus in Auckland, New Zealand: A prospective cohort study

PurposeTo document the 2-year mortality and seizure recurrence rate of a prospective cohort of patients identified with status epilepticus (SE). MethodsPatients presenting to any hospital in the Auckland region between April 6 2015, and April 5 2016, with a seizure lasting 10 min or longer were identified. Follow up was at 2 years post index SE episode via telephone calls and detailed review of clinical notes. ResultsWe identified 367 patients with SE over the course of one year. 335/367 (91.3 %) were successfully followed up at the 2-year mark. Two-year all-cause mortality was 50/335 (14.9 %), and 49/267 (18.4 %) when febrile SE was excluded. Two-year seizure recurrence was 197/335 (58.8 %). On univariate analyses, children (preschoolers 2 to < 5 years and children 5 to < 15 years), Asian ethnicity, SE duration <30 mins and acute (febrile) aetiology were associated with lower mortality, while older age >60 and progressive causes were associated with higher mortality on both univariate and multivariate analyses. Age < 2 years and acute aetiology were associated with lower seizure recurrence, while non convulsive status epilepticus (NCSE) with coma and a history of epilepsy were associated with higher seizure recurrence. On multivariate analyses, a history of epilepsy, as well as having both acute and remote causes were associated with higher seizure recurrence. ConclusionsAll-cause mortality in both the paediatric and adult populations at 2 years was lower than most previous reports. Older age, SE duration ≥30 mins and progressive aetiologies were associated with the highest 2-year mortality, while febrile SE had the lowest mortality. A history of epilepsy, NCSE with coma, and having both acute and remote causes were associated with higher seizure recurrence at 2 years. Future studies should focus on functional measures of outcome and long-term quality of life.

Value-consistent rehabilitation is associated with long-term psychological flexibility and quality of life after traumatic brain injury

ABSTRACT Meaningful steps have been taken toward using holistic approaches in outpatient rehabilitation for traumatic brain injury (TBI) (i.e., treating the whole individual); however, research and practice continue to disproportionately focus on adapting to physical and cognitive changes. Research suggests treatment focusing on individual values may be important for psychological adjustment after TBI. The current study sought to explore individual values across multiple life domains in those with TBI as well as what values outpatient rehabilitation was helpful for, and to examine discrepancies between these factors (i.e., value-consistent rehabilitation) in relation to important long-term treatment outcomes. 215 adults with a history of TBI who had participated in outpatient rehabilitation completed online surveys assessing how consistent outpatient rehabilitation was with individual values, psychological flexibility, and quality of life. The life domains with the greatest discrepancies between individual importance and rehabilitation helpfulness were spirituality, intimate relations, and family relations. Greater value-consistent rehabilitation was associated with higher levels of psychological flexibility and quality of life beyond demographics and injury characteristics. Our findings provide further support in favour of holistic, client-centred approaches that are facilitated by neurological rehabilitation programs.