Life Measures Research Articles

Patient-Reported Outcome Measures in Cancer Care

Patient-reported outcome measures (PROMs) come directly from the patient, without clinician interpretation, to provide a patient-centered perspective. To understand the association of PROM integration into cancer care with patient-related, therapy-related, and health care utilization outcomes. Searches included MEDLINE and MEDLINE Epub ahead of print, in-process, and other nonindexed citations; Embase databases (OvidSP); PsychINFO; CENTRAL; and CINAHL from January 1, 2012 to September 26, 2022. Randomized clinical trials (RCTs) that enrolled adult patients (ages 18 years and older) with active cancer receiving anticancer therapy using a PROM as an intervention. Pairs of review authors, using prepiloted forms, independently extracted trial characteristics, disease characteristics, and intervention details. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses reporting guideline was followed. Random-effects analyses were conducted. Overall mortality, health-related quality of life (HRQoL) measures, and hospital utilization outcomes. From 1996 to 2022, 45 RCTs including 13 661 participants addressed the association of PROMs with outcomes considered important to patients. The addition of a PROM likely reduced the risk of overall mortality (HR, 0.84; 95% CI, 0.72-0.98; moderate certainty), improved HRQoL (range 0-100) at 12 weeks (mean difference [MD], 2.45; 95% CI, 0.42-4.48; moderate certainty). Improvements of HRQoL at 24 weeks were not significant (MD, 1.87; 95% CI, -1.21 to 4.96; low certainty). There was no association between the addition of a PROM and HRQoL at 48 weeks. The addition of a PROM was not associated with reduced ED visits (OR, 0.74; 95% CI, 0.54-1.02; low certainty) or hospital admissions (OR, 0.86; 95% CI, 0.73-1.02; low certainty). The findings of this study suggest that the integration of PROMs into cancer care may improve overall survival and quality of life.

Association Between Achievement of Clinical Disease Control and Improvement in Patient-Reported Outcomes and Quality of Life in Patients With Psoriatic Arthritis in the Phase 3 SELECT-PsA 1 and 2 Randomized Controlled Trials.

We explored the relationship between achievement of clinical disease control and improvements in and normative values for patient-reported outcomes (PROs), including quality of life (QoL) measures, in patients with psoriatic arthritis (PsA). This was a post hoc analysis of 104-week data from the SELECT-PsA 1 and 2 trials in adults with PsA and inadequate response to one or more conventional synthetic (SELECT-PsA 1) or biologic (SELECT-PsA 2) disease-modifying antirheumatic drug. Patients were initially randomized to upadacitinib 15 mg once daily (QD) to placebo switched to upadacitinib 15 mg QD at week 24 or to adalimumab 40 mg every other week (SELECT-PsA 1 only), and data were pooled across treatments and analyzed. We evaluated several clinical disease control measures (minimal disease activity [MDA]; very low disease activity [VLDA]; and low disease activity [LDA] and/or remission by Disease Activity in Psoriatic Arthritis [DAPSA], Psoriatic Arthritis Disease Activity Score [PASDAS], and Routine Assessment of Patient Index Data 3 [RAPID3]) and examined their associations with improvements and normative values for various PROs. A total of 1,069 and 317 patients were analyzed for SELECT-PsA 1 and 2, respectively. In both studies, responders (patients who achieved MDA or VLDA, and DAPSA, PASDAS, and RAPID3 LDA or remission) at week 104 achieved more marked changes from baseline, and more responders achieved normative values in PROs compared with nonresponders (most nominal P < 0.0001). Furthermore, numerically larger proportions of responders achieved minimal clinically important differences across PROs compared with nonresponders in both studies. In addition, patients who achieved MDA or VLDA were more likely to achieve DAPSA, PASDAS, and RAPID3 LDA or remission (all nominal P < 0.0001) for upadacitinib 15 mg QD and when treatment arms were pooled. Patients with PsA who achieve clinical disease control are more likely to achieve improvements and normative values in PROs and QoL measures, which reinforces disease control as a treatment target.

Development and validation of FinTox: A new screening tool to assess cancer-related financial toxicity.

This study aimed to develop and validate FinTox, a concise tool for screening and managing financial toxicity in oncology settings. Development involved qualitative interviews with healthcare providers and patients, and feedback from a 7-member expert panel resulting in a 5-item measure that evaluates financial strain, psychological responses, and care modifications. Psychometric evaluations examined factor structure, internal consistency, test-retest reliability, and concurrent and convergent validity. Associations between FinTox scores and sociodemographic/medical factors were also analyzed using univariate and multivariable regression models. Twelve healthcare providers and 20 patients were interviewed, and 268 patients (69.8% female, 47.4% non-Hispanic White) completed surveys including FinTox, the Comprehensive Score for Financial Toxicity (COST), health-related quality of life (HRQOL) measures, and sociodemographic questions. FinTox demonstrated excellent internal consistency (Cronbach's alpha = 0.90) and test-retest reliability (ICC = 0.95). Significant correlations with the COST (r = -0.62, p < 0.001) and HRQOL measures corroborated content and convergent validity. Diagnostic accuracy was evidenced by a sensitivity of 72.3%, specificity of 85.2%, positive predictive value of 83.2%, and negative predictive value of 70.3%. Higher FinTox scores were also associated with receiving care at a safety-net hospital, Black race, household income <600% of the federal poverty level, and Stage 4 cancer. FinTox's robust psychometric properties and diagnostic accuracy position it as a reliable tool for detecting financial toxicity. Future research should evaluate its responsiveness to changes over time and integration into clinical workflows.

Exploring the role of viscosity-vaso-occlusion and haemolysis-endothelial dysfunction in pain sensitization among Jamaicans with sickle cell disease.

Viscosity-vaso-occlusion (VVO) and haemolysis-endothelial dysfunction (HED) are pathophysiological mechanisms and clinical subphenotypes of sickle cell disease (SCD). Recurrent vaso-occlusive crises (VOC) may lead to neuroplastic changes and pain sensitization. Among 257 SCD participants, we assessed the relationship of subphenotypes with pain sensitivity using quantitative sensory testing to identify heat pain thresholds (HPT) and pressure pain thresholds (PPT). VOC history and sleep, social and emotional functioning were assessed using the Adult Sickle Cell Quality of Life Measurement Information System. The 'elbow method' determined the optimal number of clusters as three. Clustering was performed using K-prototypes. Among clusters 2 and 3, VOC frequency and severity were higher. Clusters 1 and 3 had lower haemoglobin, higher reticulocytes and lactate dehydrogenase and more leg ulcers. In multivariate regression, cluster 3 was associated with approximately 13.6% lower PPT compared to cluster 1, and female sex was associated with decreases in PPT and HPT at the hands and feet (p < 0.001). Hydroxyurea use and unit increases in sleep functioning and age were associated with approximately 20.1% higher foot-PPT, 6.8% higher hand-PPT and 2.5% higher hand-HPT and foot-HPT respectively. Findings suggest that a third subphenotype with mixed VVO and HED features and worse pain sensitization may exist.

Italian translation, cultural adaptation and pilot testing of Psychosocial Assessment Tool (PAT 3.1) in pediatric cancer.

Experiences related to pediatric oncology diagnosis cause great imbalances within the family structure. Assessing the frailties and needs of families and children with cancer from a psychosocial perspective is an important step in providing appropriate pediatric psychology care. The aim of this study was to develop an Italian translation of the last version of the Psychosocial Assessment Tool questionnaire (PAT 3.1) and to pilot-test it among pediatric oncological families. The guidelines for cross-cultural adaptation of health-related quality of life measures were followed. Specifically, two independent forward translations were produced, followed by a reconciliation step by a multidisciplinary expert committee and back-translation. Revision of the original text and all translations were performed by the expert committee leading to a final version, which was pilot-tested by cognitive debriefing on five families. Subsequently, the final Italian PAT 3.1 version was approved. The Italian version of the PAT 3.1 generated in the present study is a useful instrument to examine the psychosocial risk of the families with a child with cancer. This instrument will be a valuable tool for future clinical trials and it will help clinicians to target specific pediatric psychology support intervention. The questionnaire will be further validated through a multicenter Italian study on psychosocial screening of pediatric oncology and pediatric general diseases.

Determinants of parental quality of life and resilience: a study of families with neurodevelopmentally disordered children

Objectives The current study examined the factors that influence quality of life (QoL) and resilience of parents of children with Neurodevelopmental Disabilities (NDDs) in Ghana. Methods Using a cross-sectional design, we recruited 152 parents from support groups and schools training children with NDDs in the Accra Metropolis of Ghana. Participants responded to the Kessler Psychological Distress Scale (K10), Wagnild & Young Resilience Scale, WHO Quality of Life Measure Abbreviated version (WHOQOL-BREF), and the Brief Coping Inventory used to measure psychological distress, resilience, QoL, and coping respectively. Results Using an advanced analytical approach, results revealed both direct and mediation effects of psychological variables on QoL and resilience. Moreover, a direct effect of resilience on QoL was observed. Conclusions The findings of the current study provide insight into the resilience and QoL in parents of children with NDDS and how healthcare professionals can develop tailored interventions on coping and resilient strategies to improve the QoL of parents and their children.

Safety and Effectiveness of Coronary Sinus Reducer in the Therapy of Refractory Angina Pectoris-Mid-Term Results of the Real-Life Cohort.

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.

Disability and Quality of Life Measures in older frail and prefrail people with type 2 diabetes. The MIDFRAIL-Study

AimTo explore the individual response to a multimodal intervention on quality of life (QOL) and disability. Methods843 (77.83 years, 50.65 % men) prefrail and frail individuals ≥ 70 years with type 2 diabetes mellitus. Participants were randomized to the usual care group (UCG) or the multicomponent intervention (IG). Intervention consisted in 16-week progressive resistance training program, 7 educational sessions and the achievement of HbA1c (7–8 %, 53–64 mmol/mol)) and BP (<150 mmHg) targets. QOL (EuroQol EQ-5D-5L), basic (Barthel Index, BI) and instrumental (Lawton and Brody Index) activities of daily living (ADL) were assessed. Multivariate binomial and multinomial logistic regression models were used to explore the effect of the IG, and adherence on the outcomes studied. ResultsThe IG was associated with a significant higher probability of improvement in the QOL [OR(95 %CI): 1.75 (1.20, 2.54), p-value 0.004] and a lower probability of deterioration in QoL [0.61 (0.87, 0.54), 0.006] and Barthel Index [0.59 (0.37, 0.93), 0.023]. A high adherence (≥93 %) was needed to achieve benefits in the QOL while > 84.38 % was needed for achieving the benefits in Barthel Index. ConclusionsIG has proven to be effective in increasing QOL and avoiding the worsening of QOL and basic ADL.

Curve Progression and Clinical Outcomes in Pregnant Females with Adolescent Idiopathic Scoliosis: A Systematic Review and Meta-Analysis

Prior reviews investigating the impact of pregnancy on adolescent idiopathic scoliosis (AIS) have reached different conclusions and a meta-analysis of curve progression among pregnant females with AIS and its effects on clinical outcomes has not previously been performed. A comprehensive search of major bibliographic databases (PubMed, Embase, and Scopus) was conducted for articles pertaining to spinal curve progression during pregnancy among patients with AIS. Patient demographics, scoliotic curve outcomes, and patient-reported quality of life measures were extracted. Ten studies, including 857 patients with a mean age of 28.7years, were included. Before pregnancy, 42.1% had undergone spinal fusion and 59.0% had a thoracic curve. Based on prepregnancy and postpregnancy radiographs, the curve increased from 33.9°-38.5°, and meta-analysis revealed a curve progression of 3.6° (range=-5.85 to 1.25, P= 0.003), primarily arising from loss of correction in the unfused group (Unfused=-5.0, P= 0.040; Fused=-3.0, P= 0.070). At the same time, 45.9% patients reported increased low back pain and many reported a negative body self-image and limitations in sexual function. However, 5 studies noted that pregnancy and number of pregnancies were not associated with curve progression, and multiple studies identified similar quality of life-related changes in non-pregnant patients with AIS. Among unfused pregnant females with AIS, the spinal curvature increased significantly by 5.0° from before to after pregnancy. However, these changes may be independent of pregnancy status and occur with time. Such curve progression can contribute to a negative body self-image, low back pain, and functional limitations irrespective of pregnancy state.

Clinical efficacy and safety of double-channel anastomosis and tubular gastroesophageal anastomosis in gastrectomy.

With the continuous progress of surgical technology and improvements in medical standards, the treatment of gastric cancer surgery is also evolving. Proximal gastrectomy is a common treatment, but double-channel anastomosis and tubular gastroesophageal anastomosis have attracted much attention in terms of surgical options. Each of these two surgical methods has advantages and disadvantages, so it is particularly important to compare and analyze their clinical efficacy and safety. To compare the surgical safety, clinical efficacy, and safety of double-channel anastomosis and tubular gastroesophageal anastomosis in proximal gastrectomy. The clinical and follow-up data of 99 patients with proximal gastric cancer who underwent proximal gastrectomy and were admitted to our hospital between January 2018 and September 2023 were included in this retrospective cohort study. According to the different anastomosis methods used, the patients were divided into a double-channel anastomosis group (50 patients) and a tubular gastroesophageal anastomosis group (49 patients). In the double-channel anastomosis, Roux-en-Y anastomosis of the esophagus and jejunum was performed after proximal gastric dissection, and then side-to-side anastomosis was performed between the residual stomach and jejunum to establish an antireflux barrier and reduce postoperative gastroesophageal reflux. In the tubular gastroesophageal anastomosis group, after the proximal end of the stomach was cut, tubular gastroplasty was performed on the distal stump of the stomach and a linear stapler was used to anastomose the posterior wall of the esophagus and the anterior wall of the stomach tube. The main outcome measure was quality of life 1 year after surgery in both groups, and the evaluation criteria were based on the postgastrectomy syndrome assessment scale. The greater the changes in body mass, food intake per meal, meal quality subscale score, and total measures of physical and mental health score, the better the condition; the greater the other indicators, the worse the condition. The secondary outcome measures were intraoperative and postoperative conditions, the incidence of postoperative long-term complications, and changes in nutritional status at 1, 3, 6, and 12 months after surgery. In the double-channel anastomosis cohort, there were 35 males (70%) and 15 females (30%), 33 (66.0%) were under 65 years of age, and 37 (74.0%) had a body mass index ranging from 18 to 25 kg/m2. In the group undergoing tubular gastroesophageal anastomosis, there were eight females (16.3%), 21 (42.9%) individuals were under the age of 65 years, and 34 (69.4%) had a body mass index ranging from 18 to 25 kg/m2. The baseline data did not significantly differ between the two groups (P > 0.05 for all), with the exception of age (P = 0.021). The duration of hospitalization, number of lymph nodes dissected, intraoperative blood loss, and perioperative complication rate did not differ significantly between the two groups (P > 0.05 for all). Patients in the dual-channel anastomosis group scored better on quality of life measures than did those in the tubular gastroesophageal anastomosis group. Specifically, they had lower scores for esophageal reflux [2.8 (2.3, 4.0) vs 4.8 (3.8, 5.0), Z = 3.489, P < 0.001], eating discomfort [2.7 (1.7, 3.0) vs 3.3 (2.7, 4.0), Z = 3.393, P = 0.001], total symptoms [2.3 (1.7, 2.7) vs 2.5 (2.2, 2.9), Z = 2.243, P = 0.025], and other aspects of quality of life. The postoperative symptoms [2.0 (1.0, 3.0) vs 2.0 (2.0, 3.0), Z = 2.127, P = 0.033], meals [2.0 (1.0, 2.0) vs 2.0 (2.0, 3.0), Z = 3.976, P < 0.001], work [1.0 (1.0, 2.0) vs 2.0 (1.0, 2.0), Z = 2.279, P = 0.023], and daily life [1.7 (1.3, 2.0) vs 2.0 (2.0, 2.3), Z = 3.950, P < 0.001] were all better than those of the tubular gastroesophageal anastomosis group. The group that underwent tubular gastroesophageal anastomosis had a superior anal exhaust score [3.0 (2.0, 4.0) vs 3.5 (2.0, 5.0) (Z = 2.345, P = 0.019] compared to the dual-channel anastomosis group. Hemoglobin, serum albumin, total serum protein, and the rate at which body mass decreased one year following surgery did not differ significantly between the two groups (P > 0.05 for all). The safety of double-channel anastomosis in proximal gastric cancer surgery is equivalent to that of tubular gastric surgery. Compared with tubular gastric surgery, double-channel anastomosis is a preferred surgical technique for proximal gastric cancer. It offers advantages such as less esophageal reflux and improved quality of life.

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.

Trajectories of satisfaction with work-family reconciliation among midlife employees: the role of family-related factors and quality of life.

We studied the developmental trajectories of satisfaction with work-family reconciliation (WFS) and their associations with family-related factors and quality of life measures among municipal employees. The study was based on the Helsinki Health Study of municipal employees of the City of Helsinki in 2001-02 and its follow-up surveys in 2007, 2012, and 2017. Employees aged 40-50 at baseline and working at all timepoints were analysed (n = 1681, 84% women). Growth Mixture Models were applied to identify trajectories of WFS (dissatisfied vs. satisfied). Associations of family-related and quality-of-life factors (physical functioning and emotional well-being) with the WFS trajectories were studied using log-binomial regression models, adjusting for sociodemographic and lifestyle variables. Two WFS trajectories, low (women 45%; men 53%) and high were identified. In a fully adjusted model among women, having ≥1 children aged 0-6 years was associated with increased odds of belonging to the low WFS trajectory (OR 1.52, 95% CI 1.19-1.95). Among men, having ≥1 children aged 7-18 was associated with decreased odds (0.39, 0.19-0.80). High emotional well-being was inversely associated with the low WFS trajectory among both genders (women 0.32, 0.23-0.45; men 0.20, 0.09-0.46). High physical functioning (0.59, 0.42-0.83) was inversely associated with the low WFS trajectory among women only. Less than half of the women and more than half of the men participants belonged to a low WFS trajectory, which associated with the age of children in the family and quality-of-life measures.

Happiness, positive emotions, and subjective well-being in dementia.

Research on non-cognitive features of dementia traditionally focusses on neuropsychiatric symptoms and challenging behavior and thus on negative aspects of the disease. Despite the clinical observation that many patients frequently report subjective well-being and often express positive emotions there is only little research on the definition, measurement and determinants of subjective well-being and happiness in people living with dementia. Furthermore, the few studies there are, examined happiness using retrospective questionnaires and the accounts of relatives or caregivers. However, in dementia, the experiencing self becomes more significant since past and future thinking are fading into the background. Here, we review the relative scarce literature in this field, discuss different psychological constructs and their applicability for dementia research, and suggest methods for measuring the addressed constructs in people with dementia. In particular, we propose methodology to study happiness and positive emotions in the experienced moment of the participants using ecological momentary assessments (EMA). We believe that adequate measures of momentary subjective well-being might become an important outcome parameter in clinical dementia trials beyond the currently used quality of life measures.

A Cross-Sectional Study of Health-Related Quality of Life in Patients with Predominantly Antibody Deficiency.

Health-related quality of life (HRQoL) measures individual well-being across physical, psychological, and social domains. Patients with predominantly antibody deficiency (PAD) are at risk for morbidity and mortality, however, the effect of these complications on HRQoL requires additional study. Patients with PAD were asked to voluntarily complete the Centers for Disease Control (CDC) HRQoL-14 Healthy Days Measure questionnaire. These results were compared to data from the CDC-initiated Behavioral Risk Factor Surveillance System (BRFSS), a cross-sectional questionnaire including questions from CDC-HRQOL-14. Statistical analyses included two-proportion Z-test, t-tests, and analysis of variance. 83 patients with PAD completed the survey. Patients were sub-stratified into mild (23.7%), moderate (35.5%), severe (40.8%), and secondary (8.4%) PAD. "Fair or poor" health status was reported in 52.6% of PAD patients. Mental health challenges ≥ 14 days/month occurred in 25% of patients. Physical health issues ≥ 14 days/month was reported in 44.7% of patients. Activity limitations were noted by 80.3% of patients. There were no statistically significant differences by PAD severity. Patients with autoinflammatory disease co-morbidities reported more mental health challenges compared to those without (78% vs. 54.3%, p = 0.02). Compared to the CDC-BRFSS data, significantly more patients with PAD reported "fair or poor" health status (53% vs 12.0%; p < 0.0001), mental health challenges (24.1% vs 14.7%; p = 0.02), and poor physical health (44.6% vs 8.0%; p < 0.0001). Patients with PAD had significantly reduced HRQoL compared to CDC-BRFSS respondents from a similar geographical region. Decreased HRQoL was prevalent across all PAD severity levels. Additional research is needed to improve HRQoL for patients with PAD.

Predictors of the efficacy of His bundle pacing in patients with a prolonged PR interval: A stratified analysis of the HOPE-HF randomized controlled trial.

The randomized, double-blind, placebo-controlled HOPE-HF trial assessed the benefit of atrio-ventricular (AV) delay optimization delivered using His bundle pacing. It recruited patients with left ventricular ejection fraction ≤40%, PR interval ≥200 ms, and baseline QRS ≤140 ms or right bundle branch block. Overall, there was no significant increase in peak oxygen uptake (VO2max) but there was significant improvement in heart failure specific quality of life. In this pre-specified secondary analysis, we evaluated the impact of baseline PR interval, echocardiographic E-A fusion, and the magnitude of acute high-precision haemodynamic response to pacing, on outcomes. All 167 randomized participants underwent measurement of PR interval, acute haemodynamic response at optimized AV delay, and assessment of presence of E-A fusion. We tested the impact of these baseline parameters using a Bayesian ordinal model on VO2max, quality of life and activity measures. There was strong evidence of a beneficial interaction between the baseline acute haemodynamic response and the blinded benefit of pacing for VO2 (Pr 99.9%), Minnesota Living With Heart Failure (MLWHF) (Pr 99.8%), MLWHF physical limitation score (Pr 98.9%), EQ-5D visual analogue scale (Pr 99.6%), and exercise time (Pr 99.4%). The baseline PR interval and the presence of baseline E-A fusion did not have this reliable ability to predict the clinical benefit of pacing over placebo across multiple endpoints. In the HOPE-HF trial, the acute haemodynamic response to pacing reliably identified patients who obtained clinical benefit. Patients with a long PR interval (≥200 ms) and left ventricular impairment who obtained acute haemodynamic improvement with AV-optimized His bundle pacing were likely to obtain clinical benefit, consistent across multiple endpoints. Importantly, this gradation can be reliably tested for before randomization, but does require high-precision AV-optimized haemodynamic assessment to be performed.

Experience of living with psoriasis in Brazil: a Global Psoriasis Atlas online survey.

Psoriasis significantly burdens patients' lives, but there is limited data on this in Brazil. Between May 2022 and January 2023, we conducted a cross-sectional online survey of 563 Brazilian residents aged ≥18 years who had been diagnosed with psoriasis. Spearman's correlation (r) was used to test the correlation between self-assessed disease severity (Simplified Psoriasis Index [saSPI] extent score; range 0 [clear/minor] to 40 [widespread/severe]) and health-related quality of life (QoL, score of 1 means perfect health) and capability (ICECAP-A: score of 1 means full capability) measures. Multivariable linear regression was used to identify predictors of QoL and capability. A thematic analysis examined the free-text responses and identified common themes. The mean age of participants was 42.1 ± 12.4 years, and over half had at least one other long-term condition. The mean QoL score was 0.59 ± 0.25, and the mean capability score was 0.71 ± 0.21. At the time of survey completion, over 80% of respondents reported some level of pain and/or discomfort, and 86% reported feeling anxious and/or depressed. The mean self-assessed saSPI was 7.8 ± 8.6, which negatively correlated with health-related QoL (r = -0.49, P < 0.05) and capability (r = -0.44, P < 0.05). Significant predictors of poorer QoL and reduced capability included high saSPI, number of psoriasis flares and comorbidities, female gender, Black ethnicity, and employment status (unemployed, long-term sick). Frequently reported areas that impacted patients were social stigma/prejudice, powerlessness, lack of education and public awareness, and difficulty obtaining appropriate care/treatment. We found that the clinical manifestations, severity, and associated comorbidities of psoriasis negatively impacted health-related QoL and capability, along with feelings of stigmatization and barriers to specialist treatment. This highlights the need for better access to care and awareness of the disease to improve the lives of people living with psoriasis in Brazil.

An automatic robot for ultrasonic partial discharge detection of gas-insulated switchgear

Purpose Gas-insulated switchgear (GIS) stands as a pivotal component in power systems, susceptible to partial discharge occurrences. Nevertheless, manual inspection proves labor-intensive, exhibits a low defect detection rate. Conventional inspection robots face limitations, unable to perform live line measurements or adapt effectively to diverse environmental conditions. This paper aims to introduce a novel solution: the GIS ultrasonic partial discharge detection robot (GBOT), designed to assume the role of substation personnel in inspection tasks. Design/methodology/approach GBOT is a mobile manipulator system divided into three subsystems: autonomous location and navigation, vision-guided and force-controlled manipulator and data detection and analysis. These subsystems collaborate, incorporating simultaneous localization and mapping, path planning, target recognition and signal processing, admittance control. This paper also introduces a path planning method designed to adapt to the substation environment. In addition, a flexible end effector is designed for full contact between the probe and the device. Findings The robot fulfills the requirements for substation GIS inspections. It can conduct efficient and low-cost path planning with narrow passages in the constructed substation map, realizes a sufficiently stable detection contact and perform high defect detection rate. Practical implications The robot mitigates the labor intensity of grid maintenance personnel, enhances inspection efficiency and safety and advances the intelligence and digitization of power equipment maintenance and monitoring. This research also provides valuable insights for the broader application of mobile manipulators in diverse fields. Originality/value The robot is a mobile manipulator system used in GIS detection, offering a viable alternative to grid personnel for equipment inspections. Comparing with the previous robotic systems, this system can work in live electrical detection, demonstrating robust environmental adaptability and superior efficiency.

How do illness perceptions impact device acceptance in patients with an implantable cardioverter defibrillator?

Abstract Background The implantable cardioverter defibrillator (ICD) is the first-line treatment for the prevention of sudden cardiac death in patients at high risk of a life-threatening arrhythmia. Illness perceptions encompass the cognitive and emotional representations each ICD patient has about their health condition, thus influencing coping strategies and health behaviors essential to adjusting to life with their device and underlying heart disease. We investigate how illness perceptions are prospectively linked to device acceptance in ICD patients. Purpose To examine how illness perceptions at ICD implantation are associated with patient device acceptance one-year post-implantation. Methods Secondary analysis of the ACQUIRE-ICD, national, multi-center, randomised controlled trial. Illness perceptions were measured with the Brief Illness Perceptions Questionnaire (B-IPQ) with 350 first-time ICD or cardiac resynchronization therapy defibrillator (CRT-D) recipients filling out the questionnaire at ICD implantation. B-IPQ was only assessed at baseline. Patient device acceptance, a disease-specific quality of life measure for ICD patients, was measured at both ICD implantation and at 12 months follow-up with the Florida Patient Acceptance Survey (FPAS). Of the 350 patients, 261 patients (75%) completed FPAS at 12 months follow-up. Results The participants’ mean age was 59.7 ± 11.4 years with the majority being male (83%). Total illness perceptions scores were categorised into low experienced threat (n = 182, 52%), medium experienced threat (n = 82, 23%), and high experienced threat (n = 86, 25%). In the multivariate analysis, high experienced threat at ICD implantation was associated with significantly lower device acceptance at 12 months follow-up compared to low (B = -5.80, 95% CI [- 10.61, – -1.00], p = .018) and moderate experienced illness threat (B = -7.35, 95% CI [- 12.32, – -2.38], p = .004) while adjusting for device acceptance at baseline, age, sex, NYHA-class, indication, ischemic heart disease, education, intervention group and device type. In an exploratory analysis investigating associations of all 8 B-IPQ illness perception dimensions (single item-scores) simultaneously regressed on 12-months total FPAS-scores with baseline FPAS-scores as covariate, B-IPQ item 4 measuring treatment control showed the strongest association (B = 0.94, 95% CI [0.13, – 1.76], p = .023) with higher perceived treatment control linked with higher device acceptance. Conclusion ICD patients with high experienced illness threat at ICD implantation had substantially lower device acceptance at one-year post-implantation compared to patients with low-to-moderate experienced illness threat. Perceptions of treatment control at ICD implantation appear to be a potential mediator of this relationship.

A comprehensive systematic review of health-related quality of life measures in short stature paediatric patients

This systematic review investigates Patient-reported Outcome Measures (PROMs) and Observed Reported Outcome Measures (ObsROMs) pertinent to assessing Health-Related Quality of Life (HRQoL) in short-stature paediatric patients, focusing on Achondroplasia (ACH), Growth Hormone Deficiency (GHD), Isolated Growth Hormone Deficiency (IGHD), and Small-for-Gestational-Age (SGA) diagnoses. Utilising rigorous selection criteria, 53 studies published from 1998 to 2023 were analysed, revealing a predominance of European-based research. Notably, the review elucidated the utilisation of disease-specific and generic HRQoL measures, showcasing the multifaceted nature of short-stature conditions and their impact across physical, emotional, and social domains. The Quality of Life in Short Stature Youth (QoLISSY), Paediatric Quality of Life Inventory (PedsQL), and KIDSCREEN emerged as frequently employed instruments, offering nuanced insights into HRQoL perceptions across diverse age demographics. Additionally, the review highlighted the adaptation of adult HRQoL measures for adolescent populations, signalling a need for age-appropriate assessment tools. Furthermore, integrating PROMs and ObsROMs in HRQoL assessment underscored a comprehensive approach, considering both subjective patient perspectives and observed outcomes. Future research directions encompass comprehensive search strategies, longitudinal studies with diverse populations, and the development of age-appropriate HRQoL assessment tools. In conclusion, this review emphasises the importance of comprehensive HRQoL assessment to address the diverse needs of short-stature paediatric patients effectively.

Effect of a Web-Based Integrative Support Intervention to Improve Family Caregiver Positive Caregiving Experience and Quality of Life: A Randomized Controlled Trial.

Cancer caregivers experience significant stress due to their multifaceted role. Current support methods are limited by unidimensional assessments. The aim of this study was to evaluate a Web-based support system aimed at reducing caregiver stress and anxiety, and improving resilience, vigilance, and quality of life, using both subjective and objective measures. A randomized controlled trial with a single-center, 2-arm parallel design and longitudinal assessment was conducted in Taiwan. Caregivers of patients recently diagnosed with cancer were randomly allocated to either a standard care group or an intervention group that received enhanced nurse-led support. Metrics including psychological resilience, caregiver burden, anxiety, quality of life, stress levels, and vigilance were systematically evaluated on a monthly basis over a period of 5 months, starting from the initial baseline measurement. Following the intervention, participants in the intervention group exhibited statistically significant reductions in caregiver burden and anxiety, alongside a notable improvement in resilience. Objective evaluations revealed a significant reduction in stress levels within this group. However, there were no discernible differences in vigilance and quality of life metrics between the intervention and control groups. The Web-based program effectively reduced caregiver stress and burden, as indicated by multiple metrics. This accessible and efficient Web-based support is beneficial for cancer caregivers facing diverse challenges.