Life Measures Research Articles

Level of family involvement as a predictor of outcome in eating disorder patients with and without provisional PTSD during residential treatment

ABSTRACT Objective Family involvement (FI) in the treatment of eating disorders (EDs) is critical for children/adolescents, yet its role during residential treatment (RT) in adults is uncharted. PTSD may play a role in influencing FI but is also unexplored. Method We examined the role of FI in 2786 ED patients (89% F) admitted to RT with and without provisional PTSD. At discharge, staff rated the degree of FI as follows: 1) Not at all; 2) Slightly/somewhat; 3) Very much/extremely. Changes in ED, depression, anxiety, PTSD, and quality of life measures from admission to discharge were examined via multivariate analyses of covariance using degree of FI as an independent variable and age, gender, admission BMI, age of ED onset, and baseline symptom levels as covariates. Results Patients with the highest FI were the youngest, had the lowest BMIs and the oldest ages of ED onset. Rates of provisional PTSD were greatest in individuals with no FI and least in those with the highest FI. Those with no FI did significantly worse on all measures than those with higher levels of FI. Conclusion FI is an important component in ED treatment of adults in RT and is especially needed in patients with PTSD.

Trends in the Utilization of Quality of Life Assessment Instruments in Clinical Practice

Introduction: Quality of life (QoL) evaluations are now an important part of clinical practice because they give doctors important information about how well their patients are doing. With more and more focus on patient-centered care, it is important to look at how QoL measurement tools are being used in different professional situations. The point of this study is to look into how quality of life (QoL) tools are used in regular clinical practice and how they affect decisions about healthcare.Method: all peer-reviewed studies released in the last 20 years that looked at measuring quality of life in healthcare settings were found through a thorough literature review. We looked through databases like PubMed, Scopus, and Google Scholar for applicable papers. We focused on the types of tools used, how often they were used, and the patient groups that were evaluated. It was thought about to use both qualitative and quantitative study methods.Results: the study shows that QoL rating tools are being used more and more in many medical fields, especially in cancer, heart, and psychiatry. A lot of people have used instruments like the EQ-5D, SF-36, and WHOQOL-BREF. Integration with electronic health records (EHR) systems is also becoming more widespread. This lets data be collected and analysed in real time.Conclusion: Quality of life (QoL) measurement tools are very important for improving patient care because they help doctors decide how to treat patients and make sure they get better results. As healthcare moves towards a more patient-centered approach, these tools will likely be used more.

Building security and resilience: a guide to implementing effective cybersecurity and data protection measures in smart cities

PurposeAs cities increasingly embrace smart technologies to enhance efficiency, sustainability and quality of life, integrating cybersecurity and data protection measures becomes paramount. This paper analyzes cybersecurity and data protection practices based on the existing strategies and projects in smart cities.Design/methodology/approachA research methodology involving searching for resources, content analysis and the Delphi method was developed to select the sample of smart cities, identify relevant resources, analyze and categorize their content, validate their relevance and transform them into a list of recommendations.FindingsThe findings include a validated list of 39 recommendations categorized into 6 categories for implementing robust cybersecurity and data protection measures in smart cities. We found that smart cities employ various measures to address cybersecurity and data protection, including technical solutions, organizational practices, policies and human resources initiatives. The smart economy and smart governance components are prioritized regarding data protection and cybersecurity measures, while smart living and smart environments receive less attention than others. There are regional differences in the implementation of cybersecurity measures, with Asia and Europe demonstrating higher levels of engagement.Originality/valueThe paper provides an approach to select sample smart cities and analyze their strategies and projects in different contexts to gather and validate best practices. The measures identified contribute to building sustainable and resilient cities regarding urban governance.

Quality of life and overall well-being between healthy individuals and patients with varied clinical diagnoses

BackgroundChronic diseases are known to detrimentally impact an individual’s quality of life (QOL) and well-being. Therefore, this study aims to evaluate the QOL and overall well-being among both healthy individuals and those with diverse primary diagnoses.MethodsThis is a cross-sectional study and data collection took place from May 2022 to May 2023. Information regarding healthy participants was gathered from healthcare workers without any comorbidities. Data for non-healthy participants were collected from individuals diagnosed with various conditions across four specialist clinics: nephrology, oncology, psychiatry, and cardiology. All participants completed the Significant Quality of Life Measures (SigQOLM), a comprehensive assessment tool consisting of 69 items that evaluate 18 domains of QOL and well-being.ResultsThe study included a total of 452 participants, with 284 (62.8%) classified as healthy. Among the non-healthy participants, 41 (9.1%) had end-stage renal diseases (ESRD), 48 (10.6%) were diagnosed with cancer, 40 (8.8%) had depressive disorder, and the remaining had heart disease (8.6%). Statistical analysis revealed significant differences (p < 0.001) between healthy and non-healthy participants in both overall SigQOLM scores and across all 18 domains of SigQOLM.ConclusionGenerally, healthy participants also experienced excellent QOL and well-being. However, disparities in both QOL and overall well-being were evident among patients with various diagnoses. These findings provide valuable insights for medical practitioners and policy makers by enabling them to tailor interventions to enhance the QOL and well-being of their patients.

Etiology remains king: health-related quality of life outcome at 5years following growth friendly instrumentation for EOS.

The etiology of early-onset scoliosis (EOS) has been shown to significantly influence baseline parent-reported health-related quality of life (HRQoL) measures as assessed by the Early Onset Scoliosis Questionnaire (EOSQ). However, it remains unclear how etiology influences mid-term outcomes following growth friendly instrumentation (GFI) for EOS. A retrospective review of a multi-center prospective spinal database was performed. Children undergoing primary distraction-based, GFI for EOS with complete baseline, 2-year, and 5-year post-surgical EOSQ were included. The identified children were subdivided by etiology as classified by the C-EOS system. EOSQ scores were compared over time according to etiology cohorts and between instrumentation types. Minimal clinically important difference (MCID) was defined as ≥ 20% change in domain score and compared across etiologies. Dominance analysis was used to assess for drivers of treatment satisfaction. A total of 178 children (mean 7.3 ± 2.1years, 51.1% female) were included. The most common etiology was neuromuscular (NM: 36.5%), with the majority of children treated with MCGR (N = 125). Significant differences between etiology groups were present with congenital and idiopathic cohorts demonstrating similar EOSQ domain scores that were significantly higher than neuromuscular and syndromic cohorts. In assessing clinically important changes in EOSQ scores over the 5-year follow-up period, neuromuscular and syndromic patients demonstrated the greatest capacity for improved outcomes. Instrumentation type had no influence on HRQoL scores at 5-year follow-up. Etiology was a driver of satisfaction with syndromic etiology and transfer domain score at 2years follow-up associated with dissatisfaction. Curve etiology remains a significant driver of HRQoL domains following growth-friendly instrumentation for EOS. Neuromuscular and syndromic patient have significantly lower domain scores. Despite this, or perhaps because of it, they also demonstrate the greatest capacity for clinically important improvement in HRQoL measures 5years following intervention.

Clinical outcomes and quality of life measures among 5-year survivors of fenestrated-branched endovascular aortic repair.

To report clinical outcomes and quality-of-life (QOL) changes among 5-year survivors of fenestrated-branched endovascular aortic repair (FB-EVAR) for complex abdominal (CAAA) and thoracoabdominal aortic aneurysms (TAAA). There is limited long-term data on FB-EVAR. All consecutive patients enrolled in a prospective, non-randomized study of FB-EVAR for CAAAs and TAAAs between 2013-2019 was analyzed (ClinicalTrials.gov NCT01937949 and NCT02089607). Patients who completed 5-year clinical and imaging follow-up were classified as 5-year survivors. Primary endpoint was the cumulative incidence of aortic repair failure (ARF), defined as a composite of aortic-related mortality (ARM), aortic rupture (ARR), conversion to open repair, and type I or III endoleak. Secondary endpoints included physical (PCS) and mental component (MCS) QOL scores. Among 342 patients, 159 (70% male; median age 74-years (IQR 69-79-years) 5-year survivors were analyzed. Median follow-up was 63-months (IQR 59-82). Cumulative incidence of ARF at 5 years was 5.0% (95% CI 2.4-9.2). Cumulative incidences of ARR was 1.3% (95% CI 0.0-3.1) and type IIIB endoleaks was 2.4% (95% CI 0.0-5.2) at 5-years. There were no conversions to open repair or type IA endoleaks. PCS decline post-procedure improved but remained below baseline at 5-years. There was no change in MCS. The 8-year survival rate among patients who survived the first 5-years was 58.9% (95% CI 47.4-73.3%). The 5-year risk of FB-EVAR failure is 5% among survivors, with a low risk of aortic rupture or device integrity issues. Early decline in physical QOL scores improves but does not return to baseline values.

Prevalence of and recommendation for measuring chronic postsurgical pain in children: an updated systematic review and meta-analysis.

According to the prior 2017 review (Rabbitts et al), approximately 20% of children and adolescents develop chronic postsurgical pain (CPSP; ie, pain persisting >3 months after surgery) after major surgeries, which is associated with adverse functional and psychological consequences. A major barrier was that definitions of CPSP applied were highly variable. Since that prior review was conducted (n=4 studies in meta-analysis), numerous relevant studies have been published warranting an update. The aims of this current review were to: (1) provide an updated prevalence estimate for pediatric CPSP and (2) examine definitions of pediatric CPSP applied in current research. Prospective, observational studies examining CPSP using a validated self-report pain intensity measure in children were included. 4884 unique publications were screened with 20 articles meeting inclusion criteria. Risk of bias using Quality in Prognostic Study tool ranged from low to high. The pooled prevalence of CPSP among mostly major surgeries was 28.2% (95% CI 21.4% to 36.1%). Subgroup analysis of spinal fusion surgeries identified a prevalence of 31% (95% CI 21.4% to 43.5%). Using Grading of Recommendations, Assessment, Development, and Evaluation, the certainty in prevalence estimates was moderate. Studies used a range of valid pain intensity measures to classify CPSP (eg, Numeric Rating Scale), often without pain interference or quality of life measures. The overall prevalence of pediatric CPSP is higher than estimated in the prior review, and quality of studies generally improved though with some heterogeneity. Standardizing the measurement of CPSP will facilitate future efforts to combine and compare data across studies. CRD42022306340.

Strength training for osteoporosis prevention during early menopause (STOP-EM): a pilot study protocol for a single centre randomised waitlisted control trial in Canada.

Women lose up to 10% of their bone mass around menopause and the decade following. There is a need for proactive approaches to preserve bone mass and quality around menopause. Existing work has found that high-intensity resistance and impact training (HiRIT) can improve bone and muscle measures in late postmenopausal women. However, this has not been investigated in perimenopausal and early postmenopausal women who are in the midst of the menopausal transition. This study is a 9-month randomised controlled feasibility trial evaluating a HiRIT programme in perimenopausal and early postmenopausal women. The primary objective of this study is to determine the feasibility of HiRIT in 40 perimenopausal and early postmenopausal women (45-60 years). Participants will be randomised 1:1 into a supervised HiRIT exercise intervention and waitlisted control. The primary outcomes are recruitment, retention and adherence to the exercise intervention. Secondary outcomes include bone (bone mineral density, microarchitecture and strength), muscle (mass, strength and power), physical function (balance and aerobic fitness) and quality of life measures. Feasibility will be assessed based on a priori criterion for success and secondary outcomes will be assessed via multiple linear regressions. The study will be considered feasible if>50% of interested and eligible participants are recruited, if there is>60% adherence to the two times per week, 9-month exercise intervention and if at least 65% of the sample complete the final study visit. Feasibility outcomes will be used to inform a larger, future trial aimed at identifying the efficacy of the exercise intervention for improving various health outcomes, including bone density and muscle mass. Secondary exploratory outcomes will provide insight into the effect of exercise on muscle and bone in perimenopausal and early postmenopausal women. This study has been approved by the Conjoint Health Research Ethics Board of the University of Calgary REB22-1632. The results of this study will be disseminated at national and international conferences and published in academic journals. ClinicalTrials.gov: NCT05961371. (Protocol V.1.2, 28 September 2023).

STANDARDIZED ADAPTED CARDIAC REHABILITATION AT AN INPATIENT REHABILITATION FACILITY

https://youtu.be/hXlMMThneUU INTRODUCTION Inpatient rehabilitation facilities (IRFs) serve as an interim level of care for many patients with cardiac dysfunction but are not included among the three phases of cardiac rehabilitation (CR). The education on modifiable risk factors, cardiovascular exercise, and flexibility training given to patients with cardiac diseases are delivered in the acute hospital (phase I) and the outpatient setting (phase II). Our hypothesis was that adapting phase II components to this interim setting would improve outcomes and bridge the gap between phases. In this study, the feasibility of a standardized adapted CR protocol for IRFs and effect on functional outcomes was assessed. METHODS This prospective cohort study screened 60 patients over a 6-month period. Patients with primary cardiac diagnoses were screened for inclusion. Both surgical and non-surgical candidates were included. Exclusion criteria were based on the phase II CR criteria of the American College of Sports Medicine (ACSM). Patients received continuous ECG monitoring and physician clearance prior to participation. The standardized adapted CR protocol included individual prescription for cardiopulmonary endurance exercise consistent with ACSM Phase II CR guidelines, flexibility training, and education on modifiable risk factors. Standardized outcome measures included the 6-minute walk test, Borg rating of perceived exertion scale (6-20), EQ-5D-5L quality of life measure, and Section GG (mobility) scores of the Centers for Medicare &amp; Medicaid Services Inpatient Rehabilitation Facility Patient Assessment Instrument. A one-month follow-up evaluated attendance to phase II CR, and quality of life (including maintenance of functional gains). Physical therapy staff were surveyed to identify limitations. RESULTS Forty-one patients were deemed eligible to participate. Thirty-two patients participated in at least one endurance session with an average of 3 (+ 1) 20-minute sessions completed. Borg scores (14 + 1) reached the recommended range (somewhat hard to hard) during sessions. Participants demonstrated a statistically significant improvement in their GG mobility scores. Sixty-nine percent reached the 6-minute walk minimal clinically important difference (MCID), and 59% met the quality-of-life MCID, despite their short length of stay in the IRF setting (11 + 4 days). Survey results indicated short length of stay, the need to address functional goals over exercise, inability to tolerate 20 minutes of cumulative aerobic exercise, and compliance of protocol amongst therapists were limiting factors to endurance protocol adherence. CONCLUSIONS A standardized adapted CR protocol was feasible within an IRF setting, providing targeted education, increased awareness of phase II CR options, and clear and specific guidelines for creation of individualized exercise programs. Patients demonstrated improvements in functional mobility, cardiovascular endurance, and quality of life.

Efficacy of in-person and telepractice-based extended Lee Silverman Voice Treatment LOUD® on dysarthria and dysphagia in adults with cerebral palsy.

With advancements in digital health technologies, telepractice has become crucial for providing accessible medical interventions. Cerebral palsy (CP) frequently results in comorbidities including dysarthria and dysphagia, leading to restrictions in activities. This study evaluates the efficacy of both in-person and telepractice-based intensive voice therapy in improving speech, swallowing functions, and related quality of life measures in adults with CP. The Lee Silverman Voice Treatment (LSVT) LOUD®, a speech-behavior therapy, was administered to 16 CP subjects (9 men and 7 women; mean age = 43.4 ± 10.43 years) via in-person extended version of LSVT LOUD® (LSVT-X), and telepractice program of LSVT-X (LSVT-X e-LOUD®). Outcomes, including maximum phonation time (MPT), voice intensity, diadochokinetic rate (DDK), Voice Handicap Index (VHI), swallowing quality of life (SWAL-QOL), and Videofluoroscopic Dysphagia Scale (VDS), were assessed pre- and post-treatment. Significant improvements were noted in speech functions: MPT (p = 0.006), voice intensity (p = 0.004), DDK /puh/ (p = 0.043), and DDK/puh-tuh-kuh/ (p = 0.031). Swallowing function improved significantly in the pharyngeal phase on the VDS. Quality of life measures showed improvement in physical (p = 0.003), emotional (p = 0.000), total score of VHI (p = 0.001), fear (p = 0.031), sleep (p = 0.013), fatigue (p = 0.003), and total score of SWAL-QOL (p = 0.019). These improvements were consistent in both LSVT-X and LSVT-X e-LOUD® groups. Both in-person and telepractice-based LSVT-X enhance speech, swallowing functions, and quality of life in adults with CP. LSVT-X e-LOUD® can be utilized as a digital therapeutic intervention for dysphagia and dysarthria, offering accessible and flexible treatment options aligned with digital health advancements.

Relationship Between Socioeconomic Deprivation and Healthy Days Among Commercially Insured Adults Using a Digital Health Application: An Observational Study.

Population health research has long demonstrated that where someone lives is highly correlated with health outcomes and quality of life. This study explored if this relationship remained between zip code socioeconomic deprivation index (SDI) and member-reported healthy days among commercially insured adults interacting with virtual care and navigation services between May 1, 2023 and May 31, 2024, offered by Included Health. Members received an SMS-based survey that included the 4 Centers for Disease Control and Prevention Healthy Days questions after interacting with the digital health application. The proportion of members who reported frequent (14 or more) physically unhealthy, mentally unhealthy, and total unhealthy days during the past 30 days was calculated. The adjusted odds ratio for reporting frequent total unhealthy days was estimated by members' zip code SDI quartile, accounting for member demographic characteristics. Of the 6692 survey respondents, 13.7% reported frequent physically unhealthy days, 20.8% reported frequent mentally unhealthy days, and 29.2% reported frequent total unhealthy days. After adjusting for covariates, members in the highest SDI quartile were 1.2 times more likely to report frequent unhealthy days (P = 0.047) than those in the lowest SDI quartile. The results demonstrate the importance of geographic indices, in the absence of other data, to assist employers in identifying members with potentially higher need of digital health services. It also highlights the feasibility of collecting quality of life measures to identify members who could benefit from timely intervention.

SELective defunctioning Stoma Approach in low anterior resection for rectal cancer (SELSA): Protocol for a prospective study with a nested randomized clinical trial investigating stoma-free survival without major LARS following total mesorectal excision.

Accumulated data suggest that routine use of defunctioning stoma in low anterior resection for rectal cancer may cause kidney injury, bowel dysfunction and a higher risk of permanent stomas. We aim to study whether avoidance of a diverting stoma in selected patients is safe and reduces adverse consequences. SELSA is a multicentre international prospective observational study nesting an open-label randomized clinical trial. All patients with primary rectal cancer planned for low anterior resection are eligible. Patients operated with curative intent, aged <80 years, with an American Society of Anaesthesiologists' fitness grade I or II, and a low predicted risk of anastomotic leakage are eligible to 1:1 randomization between no defunctioning stoma (experimental arm) or a defunctioning stoma (control arm). The primary outcome is the composite measure of 2-year stoma-free survival without major low anterior resection syndrome (LARS). Secondary outcomes include anastomotic leakage, postoperative mortality, reinterventions, stoma-related complications, quality of life measures, LARS score, and permanent stoma rate. To be able to state superiority of any study arm regarding the main outcome, with 90% statistical power and assuming 25% attrition, we aim to enrol 212 patients. Patient inclusion will commence in the autumn of 2024. The SELSA study is investigating a tailored approach to defunctioning stoma use in low anterior resection for rectal cancer in relation to the risk of anastomotic leakage. Our hypothesis is that long-term effects will favour the selective approach, enabling some patients to avoid a defunctioning stoma. Swedish Ethical Review Authority approval (2023-04347-01, 2024-02418-02 and 2024-03622-02), Regional Ethics Committee Denmark (H-24014463), and ClinicalTrials.gov (NCT06214988).

Effects of Probiotics and Diet Management in Patients With Irritable Bowel Syndrome: A Systematic Review and Network Meta-analysis.

The efficacy of probiotics and diet management in irritable bowel syndrome (IBS) is controversial, and their relative effectiveness remains unclear. This study aimed to evaluate the effects of probiotics, diet management, and their combination on IBS. PubMed, Embase, Cochrane, and Web of Science were searched from inception to July 10, 2023, for relevant studies, including symptom relief, IBS-symptom severity score (-SSS), and IBS-quality of life measure (-QOL). Two investigators independently performed the data extraction and quality assessment. A network meta-analysis was performed using a frequentist approach and a random-effects model to estimate the relative risk (RR) and 95% CI. Forty-four articles were eligible for this study. In relieving IBS symptoms, compared with a sham diet, a low-fermentable oligosaccharide, disaccharide, monosaccharide, and polyols (low-FODMAP) diet (RR: 3.22; 95% CI: 1.70-6.26) and low-FODMAP diet combined with probiotics (RR: 17.79; 95% CI: 3.27-112.54) significantly relieved IBS symptoms. The control group showed significantly lower effectiveness than the probiotics group (RR: 0.47; 95% CI: 0.32-0.69). According to the surface under the cumulative rank curve (SUCRA), a low-FODMAP diet combined with probiotics (80.4%) had the best effect in relieving IBS symptoms, followed by a low-FODMAP diet (70.8%), probiotics (65.1%), and a gluten-free diet (54.3%). In reducing the total IBS-SSS, the low-FODMAP diet (90.5%) was the most effective, followed by the low-FODMAP diet combined with probiotics (76.6%), probiotics alone (62.3%), and gluten-free diet (28.3%). In reducing total IBS-QOL, probiotics (72.1%) ranked first, followed by gluten-free (57.0%) and low-FODMAP (56.9%) diets. Probiotics (34.9%) were associated with the lowest risk of adverse effects. A low-FODMAP diet combined with probiotics is most effective in relieving IBS symptoms. A low-FODMAP diet is the most recommended diet for alleviating IBS severity, and probiotics were associated with improving the QOL of patients with IBS, with the fewest adverse events. PROSPERO registration no. CRD42024499113.

Factors Influencing Quality of Life in Patients After Rectal Cancer Anus-Preserving Surgery: A Cross-Sectional Study

&amp;lt;i&amp;gt;Aims and Objectives: &amp;lt;/i&amp;gt;The purpose of this study was to investigate the symptoms and quality of life level in patients after rectal cancer anus-preserving surgery, and to explore the factors affecting the quality of life level. In addition, a correlation analysis was conducted between symptoms and quality of life level. &amp;lt;i&amp;gt;Background: &amp;lt;/i&amp;gt;Patients after rectal cancer anus-preserving surgery may have related complications, and the quality of life is also affected by various factors. It is particularly important to pay attention to and improve the quality of life of patients, so it is necessary to clarify the influencing factors and better clinical nursing intervention. &amp;lt;i&amp;gt;Design: &amp;lt;/i&amp;gt;A cross-sectional study. &amp;lt;i&amp;gt;Methods: &amp;lt;/i&amp;gt;From June 2020 to May 2022, a convenience sample of 165 participants were recruited at two tertiary hospitals in Guangdong, China. Quality of life and postoperative symptoms were assessed using the Cancer Patient Quality of Life Measurement Scale (FACT-G) and the Chinese Cancer Anderson Symptom Assessment Scale (MDASI) face-to-face or by telephone. &amp;lt;i&amp;gt;Results: &amp;lt;/i&amp;gt;The overall quality of life score of patients after rectal cancer anus-preserving surgery was 54.07±14.58 points. The top three most severe symptoms were sleep, fatigue, and numbness or tingling in the limbs or face. The most severe gastrointestinal symptom was constipation. The severity of symptoms, gastrointestinal symptoms, and symptom interference were negatively moderately correlated with the total score of quality of life (P&amp;lt;0.01). The severity of symptoms, the severity of gastrointestinal symptoms, and the degree of symptom interference were independent factors affecting the quality of life of patients after RCAPS, with statistical significance (P&amp;lt;0.05)&amp;lt;i&amp;gt;. Conclusion: &amp;lt;/i&amp;gt;The quality of life of patients after rectal cancer anus-preserving surgery is at a medium level. The higher the severity of symptoms and symptom interference of patients after rectal cancer anus-preserving surgery, the lower the quality of life of patients. &amp;lt;i&amp;gt;Relevance to clinical practice: &amp;lt;/i&amp;gt;To provide a theoretical basis for clinical nursing interventions for patients after rectal cancer anus-preserving surgery, so as to improve their quality of life.

P0375 Fibromyalgia as a predictive factor of fatigue and reduced quality of life in patients with inflammatory bowel disease

Abstract Background Inflammatory bowel disease (IBD) patients often experience extraintestinal manifestations, which significantly impact their quality of life, contribute to disability, and impose substantial costs on healthcare systems. Osteoarticular manifestations are the most common type of EIMs. Fibromyalgia (FM), the second most common rheumatic disease, affects an estimated 2% to 8% of the global population, with a higher prevalence among females. FM is characterized by widespread pain, frequently accompanied by fatigue, cognitive difficulties, and sleep disturbances. Evidence indicates a strong association between FM and IBD, with numerous studies reporting a higher prevalence of FM among IBD patients compared to the general population. Methods The aim of this study was to evaluate the prevalence of FM in patients with IBD. We conducted a cross-sectional analysis at our IBD outpatient clinic from July 2023 to July 2024, including patients aged over 18 years. The diagnosis of FM was made based on the criteria established by the American College of Rheumatology in 2016. Data on demographics, IBD phenotype, clinical and endoscopic activity, quality of life (IBDQ) and fatigue (FACIT) measurements were recorded. Results A total of 250 patients were included. The overall prevalence of FM was 15.2%, predominantly in females (53.6%) (p &amp;lt; 0.001). The mean age at the time of inclusion was 34.5 years (SD 15.3) and the mean disease duration was 10.9 years (SD 8.1). Most patients in our cohort were White (55.7%) and non-smokers (65.3%). There was no significant difference in C-reactive protein levels between IBD-FM patients and IBD-only patients (5.1 vs. 8.6 mg/dL; p = 0.324). Patients with ulcerative colitis exhibited a higher frequency of FM compared to those with Crohn’s disease (22 vs 16, p = 0.041). Patients with FM were statistically older (40.7 years vs. 33.4 years; p = 0.008) and had a higher BMI (27.8 vs. 24.8; p = 0.001) compared to those without FM. Additionally, patients with FM had a significantly longer mean disease duration (14 years vs 10.3, p = 0.015) and reported notably lower mean scores of IBDQ (147.4 vs 183.1; p &amp;lt; 0,001) and lower mean FACIT scores (31.5 vs 42.1; p &amp;lt; 0,001) compared to patients without FM. Conclusion The association between FM and IBD was substantial in the studied cohort, with a prevalence exceeding that reported in the general population and in previous literature. There was a slight predominance of FM among female patients diagnosed with UC. The co-occurrence of IBD and FM was associated with a significantly reduced quality of life and elevated levels of fatigue.

Measurement properties of the Traumatic Brain Injury Quality of Life (TBI-QoL) and Spinal Cord Injury Quality of Life (SCI-QoL) measurement systems: a systematic review

PurposeTraumatic brain injury and spinal cord injury impact all areas of individuals’ quality of life. A synthesis of available evidence for the Traumatic Brain Injury Quality of Life (TBI-QoL) and Spinal Cord Injury Quality of Life (SCI-QoL) measurement systems could inform evidence-based clinical practice and research. Thus, we aimed to systematically review the literature of existing evidence on the measurement properties of SCI-QoL and TBI-QoL among rehabilitation populations.MethodsWe used the COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) framework for evaluating measures to guide this systematic review. We searched nine electronic databases and registries, and hand-searched reference lists of included articles. Two independent reviewers screened selected articles and extracted the data. We used COSMIN’s thresholds to synthesize measurement properties evidence (insufficient, sufficient), and the modified GRADE approach to synthesize evidence quality (very-low, low, moderate, high).ResultsWe included 16 studies for SCI-QoL and 14 studies for TBI-QoL. Both measurement systems have sufficient content validity, structural validity, internal consistency and construct validity across nearly all domains (GRADE: high). Most SCI-QoL domains and some TBI-QoL domains have sufficient evidence of cross-cultural validity and test–retest reliability (GRADE: moderate-high). Besides the cognition domains of TBI-QoL, which have indeterminate evidence for measurement error and sufficient evidence for responsiveness (GRADE: high), there is no additional evidence available for these measurement properties.ConclusionRehabilitation researchers and clinicians can use SCI-QoL and TBI-QoL to describe and evaluate patients. Further evidence of measurement error, responsiveness, and predictive validity would advance the use and interpretation of SCI-QoL and TBI-QoL in rehabilitation.

Mapping the Washington Group on Disability Statistics disability measure to the Health Utilities Index Mark 3: Development and validation of a predictive multivariable model in a general population sample.

Statistics Canada routinely collects information on functional health and related concepts. Recently, the Washington Group on Disability Statistics (WG) measure of disability has been introduced to the Canadian Community Health Survey (CCHS). The WG measure is used as a tool for developing internationally comparable data on disability. In alternate cycles of the CCHS, it replaces the Health Utilities Index Mark 3 (HUI3), a generic preference-based measure of health-related quality of life. The HUI3 is used to derive evaluative health measures common in population health and economic evaluations. Since the WG measure is not preference-based, it is unable to derive these measures. To address resulting data gaps, this study empirically maps the health state utility values of the HUI3 score from the WG measure. Empirical mapping used a "head-to-head" subsample of the 2017 CCHS where WG and HUI3 measures were collected from the same respondents aged 40 and over. Empirical mapping used regression models to estimate the statistical relationship between WG and HUI3 measures in addition to health and demographic variables. Out-of-sample predictive performance was assessed through descriptive statistics, mean absolute error, and other measures of predictive accuracy. The preferred estimation strategy resulted in reasonably precise estimates of the HUI3 score corresponding to trends across health and demographic characteristics and reflecting distributional properties of the HUI3 score. Inclusion of different components of the WG measure influenced predictive accuracy. Empirical mapping offers a potential method to estimate health state utility scores from the WG measure and addresses data gaps in health-related quality of life measures in the CCHS when HUI3 is not collected.

Digital and Tunable Genetically Encoded Tension Sensors Based on Engineered Coiled‐Coils

Genetically encoded tension sensors (GETSs) allow for quantifying forces experienced by intracellular proteins involved in mechanotransduction. The vast majority of GETSs are comprised of a FRET pair flanking an elastic “spring‐like” domain that gradually extends in response to force. Because of ensemble averaging, the FRET signal generated by such analog sensors conceals forces that deviate from the average, and hence it is unknown if a subset of proteins experience greater magnitudes of force. We address this problem by developing digital GETSs comprised of coiled‐coils (CCs) with tunable mechanical thresholds. We validate the mechanical response of CC digital probes using thermodynamic stability prediction, AlphaFold2 modeling, steered molecular dynamics simulations, and single molecule force microscopy. Live cell measurements using optimized CC tension sensors that are inserted into vinculin demonstrate that 13% of this mechanosensor experiences forces &gt; 9.9 pN within focal adhesions. This reveals greater magnitudes of vinculin force than had previously been reported and demonstrates that coiled‐coil tension sensors enable more facile and precise tension measurements in living systems.

Quality of life for patients on oncology treatments in the Kingdom of Saudi Arabia: a systematic review.

Cancer cases in the Kingdom of Saudi Arabia (KSA) have tripled in recent years. Quality of Life (QoL) measurements are crucial for healthcare professionals because they reveal important information about how patients respond to drugs and their general health. This study aimed to collect and summarise articles exploring the QoL of patients undergoing oncology treatments in KSA. This systematic review captured articles on the Quality of Life of patients undergoing oncology treatments living in the KSA from 2000-2023. A query was established by adapting (PICOS) guidelines for systematic research. A systematic review accelerator (SRA) was used to organise the search and enable multiple reviewers to conduct and validate the process. Twelve articles met the inclusion criteria. Riyadh and Jeddah contributed to all publications. A total of 2,430 patients with cancer were surveyed; 1,377 patients were female (56.67%) with an average age of 51.23 years. Six articles mentioned pharmacological interventions, whereas the remaining articles did not mention which pharmacology had been utilised. This systematic review highlights the recent attention given to the patient's reported outcomes of cancer patients. Further research on rare cancer types is required, particularly for generic instruments.

Digital and Tunable Genetically Encoded Tension Sensors Based on Engineered Coiled-Coils.

Genetically encoded tension sensors (GETSs) allow for quantifying forces experienced by intracellular proteins involved in mechanotransduction. The vast majority of GETSs are comprised of a FRET pair flanking an elastic "spring-like" domain that gradually extends in response to force. Because of ensemble averaging, the FRET signal generated by such analog sensors conceals forces that deviate from the average, and hence it is unknown if a subset of proteins experience greater magnitudes of force. We address this problem by developing digital GETSs comprised of coiled-coils (CCs) with tunable mechanical thresholds. We validate the mechanical response of CC digital probes using thermodynamic stability prediction, AlphaFold2 modeling, steered molecular dynamics simulations, and single molecule force microscopy. Live cell measurements using optimized CC tension sensors that are inserted into vinculin demonstrate that 13% of this mechanosensor experiences forces > 9.9 pN within focal adhesions. This reveals greater magnitudes of vinculin force than had previously been reported and demonstrates that coiled-coil tension sensors enable more facile and precise tension measurements in living systems.