Arterial disease of the lower extremities is a common form of atherosclerosis associated with an increased risk of cardiovascular disease and mortality. Arterial disease of the lower extremities tends to progress from asymptomatic forms to intermittent claudication and critical ischemia. Sulodexide therapy in patients with PH allows for increased pain-free walking distance. At the same time, the scientific literature has not fully documented how long-term sulodexide therapy affects the quality of life of patients with arterial disease of the lower extremities. The aim of the study was to evaluate the effect of sulodexide on the quality of life of patients with arterial disease of the lower extremities. The multicenter prospective observational study of ANDANTE included patients with PH stage IIa-IIb according to the classification of A.V. Pokrovsky receiving sulodexide therapy. During the 6-month follow-up, 4 visits were conducted, during which the quality of life was analyzed based on a subjective assessment of physical and mental health using the SF-36 questionnaire. Pain-free walking distance, ankle-shoulder index, self-assessment of erection retention, WELCH walking ability scale scores, and Hasegawa dementia scale scores were also evaluated for men. In this article, we have considered only the dynamics of patients' quality of life in terms of physical and mental health on the SF-36 scale as the primary endpoint of the study. In the future, data on other criteria for the treatment of patients will be presented. The study included 229 patients aged 37 to 90 years (on average, 65.0±9.9 years). Men prevailed among the patients - 159 (69.4%) patients. There were 118 (51.5%) smokers and 111 (48.5%) non-smokers. The average duration of the disease from the moment of diagnosis of arterial disease of the lower extremities to inclusion in the study was 6.0±6.3 years. In addition to OCD, 72.5% of patients were diagnosed with hypertension, 28.4% with cerebrovascular disease, 26.6% with coronary heart disease, 25.3% with diabetes mellitus, and 19.7% with erectile dysfunction. At the time of inclusion in the study, 61.6% of patients were taking antiplatelet agents, 10.9% were taking direct oral anticoagulants, and 46.3% of patients were taking lipid-lowering therapy. At the time of inclusion in the study, 147 (64.2%) patients followed the recommendations on physical activity. Revascularization before inclusion in the study was performed in 19.2%, and 80.8% were treated conservatively. The study did not record any adverse events during sulodexide therapy. Compliance with therapy was high and averaged 4.6 points on a 5-point scale. The indicators of the physical aspect of the quality of life on the SF-36 scale significantly increased (p<0.01) after 6 months of treatment with sulodexide from 35.7±8.3 points on the first visit, to 44.6±7.2 points on the fourth. At the same time, the indicator increased by 8.9 (24.9%) points. The mental aspect of the quality of life during treatment also significantly improved from 45.4±9.9 to 51.6±6.7 points, an increase of 6.2 (13.6%) points. ANDANTE's study showed an improvement in subjective physical by 24.9% and mental by 13.6% aspects of quality of life on the background of sulodexide therapy in patients with ZANK.
To examine associations between cardiometabolic conditions and health-related quality of life (HRQoL) and evaluate temporal trends in condition-associated HRQoL decrements from 2001 to 2022. We analyzed nationally representative data from U.S. adults aged ≥ 18 years in the Medical Expenditure Panel Survey (2001-2022), excluding years without BMI data collection (2017, 2019, 2021). HRQoL was measured using EQ-5D utilities mapped from SF-12 scores with a validated algorithm. For each year, survey-weighted multivariable regression models estimated associations of sociodemographic characteristics, BMI, and six cardiometabolic conditions with HRQoL. Temporal trends in condition-associated HRQoL decrements were assessed using meta-regression. To estimate recent average associations, we pooled data from 2015, 2016, 2018, and 2022. HRQoL improved over time, with lower values in 2001-2012 than 2013-2022 and an increase from its lowest value in 2012 (0.873) to highest in 2018 (0.888). Stroke contributed the greatest adjusted HRQoL decrement, followed by heart disease, diabetes, high blood pressure, obesity, and high cholesterol. Diabetes- and heart disease-associated decrements attenuated linearly over time (-0.0500 in 2001 to -0.0414 in 2022 and -0.0611 to -0.0487, respectively) , whereas high blood pressure-associated decrement was greatest around 2012 (-0.0361 in 2001, -0.0404 in 2012, and - 0.0313 in 2022) and obesity-associated decrement was smallest around 2012 (- 0.0311, - 0.0290, and - 0.0370). Changes in condition-associated HRQoL decrements over time suggest that utility values may not remain constant across calendar years. Smaller decrements for diabetes and heart disease may reflect better treatment and management, whereas the growing obesity-related decrement may indicate changes in the national severity of obesity. These patterns highlight the need for current, nationally representative utility estimates in population health research. Cardiometabolic conditions such as diabetes, heart disease, stroke, high blood pressure, obesity, and high cholesterol are common chronic diseases in the United States and can reduce health-related quality of life. However, it is unclear whether their impact on health-related quality of life has changed over time as disease management and treatment have improved. Using nationally representative survey data from U.S. adults collected between 2001 and 2022, we estimated how much each cardiometabolic condition reduced health-related quality of life and whether the condition-specific estimates have changed over time. Overall health-related quality of life improved between 2001 and 2022, with the greatest gains among older adults. Stroke had the largest negative impact on health-related quality of life, followed by heart disease, diabetes, high blood pressure, obesity, and high cholesterol. The health-related quality-of-life gap between adults with and without diabetes or heart disease has narrowed over time, a pattern consistent with improved disease management and treatment. In contrast, the quality-of-life gap associated with obesity increased in recent years, a pattern consistent with the rise in severe obesity nationally. Researchers and policymakers may use up to date quality of life estimates rather than older figures when evaluating the burden of cardiometabolic disease. Using updated disease-attributable health-related quality of life estimates would better reflect the current burden of cardiometabolic disease.
Several instruments assess different aspects of quality of life (QoL), the EQ-HWB is developed to capture broader health and wellbeing constructs. Established QoL measures such as the EQ-5D-5L, QOL-ACC, and ASCOT are widely used in older populations. Analysing dimensionality across these instruments can provide insight into the constructs they cover and their conceptual relationships. This study aimed to examine the dimensionality of the EQ-HWB both on its own and alongside pooled items from these measures, to identify its underlying structure and the extent of item overlap. Analysis was conducted using data from 453 participants aged 65 years and above who completed all four instruments. Exploratory Factor Analysis (EFA) was conducted to identify the underlying factor structure. Factors were selected based on eigenvalues greater than one and scree plots. A correlation cut-off of 0.32 was applied to determine item loading on a given factor. Both oblique and orthogonal rotations were explored. EFA was conducted separately for the EQ-HWB and each instrument, as well as for the pooled items from all instruments. EFAs conducted separately for the EQ-HWB, and each instrument resulted in a 4-factor structure. However, EFA of all pooled items showed that the 5-factor structure provided a better model fit. The five factors identified were: emotional functioning, self-care and usual activities, leisure and enjoyment, cognition and senses, and pain. This study provides evidence on the dimensions of QoL captured by a select pool of health focused and broader QoL instruments in an older adult population. The results enhance understanding of the conceptual coverage of the EQ-HWB relative to other QoL measures. This study is done as there are many instruments measuring quality of life (QoL) in older adults, but it is not always clear how similar or different they are. The EQ-HWB is a newer measure designed to capture both health and broader wellbeing. However, more evidence is required to understand what areas it measures and how it compares with established tools such as the EQ-5D-5L, QOL-ACC, and ASCOT. The key issue addressed in this manuscript is whether the EQ-HWB measures the same dimensions of QoL as other instruments, and how much overlap exists between them. Understanding this helps researchers and policymakers choose the most appropriate measure. The main aim of the study was to examine the underlying structure of the EQ-HWB on its own and when combined with items from other QoL instruments. The results showed that when analysed separately, four main factors were seen. However, when all items were analysed together, five broader factors were identified: emotional functioning, self-care and usual activities, leisure and enjoyment, cognition and senses, and pain. These findings suggest that the EQ-HWB captures key areas of QoL and shares some overlap with existing measures, while also covering broader aspects of wellbeing.
This study aimed to describe HRQoL of both children and parents in a Chinese DSD cohort, evaluate caregiver burden, and employ the latent profile analysis (LPA) to identify distinct parental HRQoL profiles and their associated determinants. This study included 147 parents of children with DSD and 519 parents of healthy controls. Group differences in HRQoL were analyzed using t-tests or one-way analysis of variance (ANOVA). Multivariate regression identified predictors of parental HRQoL, and LPA classified parental HRQoL profiles with multinomial logistic regression used to assess their associated factors. Children with DSD had similar HRQoL scores to healthy controls (p > 0.05), but their caregivers showed significant impairments across all domains (p < 0.05). In multivariate analysis, caregiver burden and child HRQoL were significantly associated with parental HRQoL (p < 0.05), with caregiver burden mediating 60.8% of the effect of child HRQoL on parental HRQoL. Latent profile analysis identified three parental HRQoL profiles: "Poor" (24.5%), "Moderate" (35.4%), and "Good" (40.1%). Higher caregiver burden increased the odds of "Poor" and "Moderate" profiles (OR = 1.52 and 1.26, both p < 0.001), while better child HRQoL protected against "Poor" profile membership (OR = 0.91, p = 0.002).  This study reveals that HRQoL of children with DSD is comparable to the healthy controls, while their parents experience significant impairments in HRQoL, primarily determined by caregiver burden and the child's HRQoL. As caregiver burden mediates the impact of child HRQoL on parental HRQoL, clinical care must adopt a family-centered approach focusing on burden alleviation. • Children with DSD face complex medical and psychosocial challenges that may affect HRQoL in both patients and their families. • Their caregivers often experience significant psychological burden, which can negatively impact their own well-being. • In a Chinese DSD cohort, children's HRQoL was comparable to healthy controls, whereas their parents exhibited significant and heterogeneous HRQoL impairments across all domains, with three distinct parental HRQoL profiles identified via latent profile analysis. • Caregiver burden mediated 60.8% of the effect of child HRQoL on parental HRQoL, highlighting burden alleviation as a priority target in family-centered clinical care for DSD.
Medical students with chronic diseases constitute a particurarly vulnerable subgroup of young adults, exposed to various health risks, related both to the academic environment and their underlying health condition. Previous findings suggest that medical students with chronic illnesses experience greater deterioration in quality of life (QoL) compared with their healthy peers. The aim of this study was to validate earlier observations from the POLLEK study regarding the relationship between quality of life, health status, and the prevalence of chronic diseases among medical students during a two-year follow-up. This study presents results from the final cohort of Polish medical students' longitudinal study (POLLEK), recruited during the academic years 2020/2021-2022/2023 at the Medical University of Silesia in Katowice. A total of 887 first-year students (T1) participated in the baseline assignment, and 705 were followed up in the second year of studies (T2). The questionnaire included measures of quality of life (WHOQOL-BREF), hazardous alcohol use (AUDIT), general health status (GHQ-28), lifestyle indicators, and sociodemographic characteristics. Students were divided into two groups: those with previously diagnosed chronic diseases (DCD) and those without declared chronic diseases (NDCD). Among first-year students (T1), 219 (24.7%) reported ever having a diagnosed chronic disease. In the second academic year (T2), this proportion increased to 28.9% (N = 204). Higher scores for overall QoL (p < 0.001), and in the somatic (p = 0.009), psychological (0.006), and environmental (p = 0.028) domains were observed among first-year students without chronic diseases. Similar patterns were observed during the second academic year, except for the psychological domain (p = 0.782). Chronic diseases are relatively common among medical students and are associated with poorer quality of life, worse self-rated health, and lower psychological wellbeing in the early years of medical education. Students with chronic diseases report consistently lower quality of life, more somatic complaints, and higher levels of anxiety and depressive symptoms, with these differences persisting over time. These findings highlight the need for systematic monitoring of students' wellbeing and early, tailored support, including health-focused interventions, coping support, and appropriate academic accommodations.
Effective participant recruitment is crucial for the success of clinical trials, yet little is known about facilitators and barriers to recruitment in pediatric populations with visual impairment. Understanding which methods yield the highest participant engagement can help optimize recruitment efforts and improve study outcomes. Thus, we assessed factors associated with recruitment in the SeeMyLife study, a European multi-center cohort study about quality of life and participation of children and young people with visual impairment. Data on the perceived effectiveness of recruitment strategies were collected from principal investigators, study coordinators, clinical and research staff using an online survey. Additional information on recruitment approaches was obtained through document analysis of study-related communications, including e-mails and meeting minutes. Descriptive statistics were used to summarize recruitment rates and perceived effectiveness scores. Open-ended responses regarding recruitment challenges were analyzed thematically to identify common barriers and facilitators. Seventeen clinical and research staff members from six countries participated in the survey and shared their insights and experience with participant recruitment. In total, study staff reported using twelve distinct recruitment sources to enhance participant enrolment. These sources were grouped into three broad categories: healthcare settings, community engagement and educational settings, and professional and system-level approaches. The recruitment of participants using the hospital information system was perceived as the most effective recruitment strategy, used by 71% of respondents. Other highly ranked sources included pediatric visual rehabilitation centers, patient associations, and affiliated university ophthalmology departments, where staff actively presented the study to their patients and referred eligible participants. Commonly reported recruitment challenges included restrictive inclusion criteria, limited parental responsiveness, concerns about the impact of study participation on children's well-being, and institutional barriers. Successful strategies for enrolling children and young people with visual impairment into clinical research include direct interactions between clinical staff and families, likely due to established trust, easier identification of eligible participants, and clearer communication about the study. In contrast, recruitment approaches outside clinical care settings were perceived as less effective. These findings highlight the importance of integrating recruitment efforts within established healthcare networks when conducting pediatric vision impairment research.
To evaluate the relationship between visual acuity (VA) improvement and vision-related quality of life in patients with keratoconus using rigid gas-permeable (RGP) and scleral contact lenses (CLs). This observational study was designed as a cross-sectional study with retrospective collection of pre-contact lens clinical data. The best-corrected visual acuity (BCVA) before and after CL use was recorded. Pre-contact lens BCVA values were obtained retrospectively from medical records, which may introduce potential documentation bias. After CL usage, vision-related quality of life and CL adaptation were assessed using a validated Turkish version of the National Eye Institute Visual Function Questionnaire (VFQ-25) and a study-specific questionnaire developed by the investigators to explore practical aspects of contact lens use such as handling, adaptation, comfort, and concerns related to long-term use. The correlations between BCVA improvement and questionnaire responses were analyzed statistically. A total of 26 patients (mean age 39.7 ± 13.6 years) were included. Mean BCVA improved significantly from 0.21 ± 0.20 to 0.83 ± 0.16 with contact lenses (p = 0.001). The VA improvement showed significant positive correlations with perceived visual improvement (p = 0.032) and vision-related quality-of-life enhancement (p = 0.007). These associations should be interpreted cautiously given the relatively small sample size and exploratory nature of the correlation analyses. The patients continued to express concerns regarding the long-term use of CL, despite the observed improvement in VA. The rigid contact lens use was associated with improvements in both visual acuity and vision-related quality of life in keratoconus. However, due to the limited sample size and cross-sectional design, the findings should be considered preliminary and interpreted as exploratory observations that may inform future prospective studies.
Post-Acute Sequelae of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection (PASC) is characterized by persistent and heterogeneous symptoms that impair health-related quality of life (HRQoL). Although several studies have identified symptom subgroups in Western populations using person-centered approaches, data on Asian populations remain limited. In this study, we aimed to classify the symptom profiles of Korean adults with PASC using latent profile analysis (LPA) and examine the differences in HRQoL and associated factors between the identified profiles. We conducted an online survey of 629 adults in Korea who experienced persistent symptoms ≥12 weeks after coronavirus disease (COVID-19) diagnosis. Symptom burden was assessed using the Long COVID Symptom Tool (26 items), and HRQoL was measured using the SF-36 v2®. LPA was performed to identify the symptom subgroups. One-way analysis of variance (ANOVA) and multiple linear regression were used to compare HRQoL across profiles and explore predictors. A four-class model provided the best fit: Class 1 (Low symptom, 23.3%), Class 2 (Moderate multisystem, 44.1%), Class 3 (Fatigue/post-exertional malaise dominant, 15.9%), and Class 4 (High multisystem burden, 16.7%). HRQoL differed significantly between classes (p < .001), with a clear gradient of decreasing scores from low to high symptom burden. The independent predictors of lower HRQoL included lower education, presence of chronic disease, poor subjective health, hospitalization during acute infection, and prolonged symptom persistence. The model explained 32.9% of the variance in HRQoL. Korean adults with PASC exhibit heterogeneous symptom patterns that substantially affect their HRQoL. The identification of distinct symptom profiles supports the need for tailored interventions, including rehabilitation, cognitive training, and psychological support. Our findings provide crucial evidence for developing Korean population-specific screening tools and management guidelines for PASC.
Hearing-related quality of life is a crucial outcome for adults with cochlear implants. The Cochlear Implant Quality of Life (CIQOL)-35 Profile is a patient-reported outcome measure originally developed in English. In a previous study, this instrument was cross-culturally adapted into German to address the need for standardized assessment tools in German-speaking regions. To ensure the adapted instrument meets psychometric criteria, validation is required. The German adaptation of the CIQOL-35 Profile was validated through an online survey including questions on demographics, the German CIQOL-35 Profile, and the German Nijmegen Cochlear Implant Questionnaire (NCIQ). The collected data were analyzed for reliability and validity. A total of 204 adults (aged 19-87 years) with bilateral hearing loss completed the online survey. Cronbach's α between 0.84 and 0.91 demonstrates good internal consistency for all subscales of the CIQOL-35 Profile and the global outcome. Moderate to strong correlations (rs = 0.55-0.85) between the CIQOL and NCIQ indicate good convergent validity. Confirmatory factor analysis established construct validity for the German CIQOL instruments. These findings confirm that the adapted German version of the CIQOL instruments is a reliable and valid measure for assessing hearing-related quality of life in adults with cochlear implants and demonstrates higher validity than the NCIQ. The availability of the CIQOL in multiple languages facilitates international comparability of research results and increases clinical application. Implementing quality of life instruments in clinical practice enables a more comprehensive evaluation of patient outcomes and may help identify patient needs that may be addressed in therapy and rehabilitation.
For youth living with neurodisabilities and rare conditions, transitioning from pediatric to adult care results in significant loss of services and supports. This article examines transition-related health systems, policies and provider roles in the context of Duchenne muscular dystrophy (DMD). DMD is a multi-systemic X-linked disorder mainly characterized by progressive muscle degeneration, with about 30% of patients presenting with neurodevelopmental comorbidities. Due to advances in respiratory and cardiac care, life expectancy has increased significantly, creating a new population of adults living with DMD. This demographic shift has exposed critical gaps in the transition from pediatric to adult health care. To date, there is no systematic review covering existing transition policies and programs. This article utilizes integrated care and continuity of care frameworks to examine transition-related health systems, policies, and provider roles. We conducted a PRISMA-compliant systematic review searching OVID Medline, Embase, PsycINFO, CINAHL, Web of Science, and SCOPUS from January 1, 2000, to August 31, 2025. Studies were included if they reported on health systems, programs, policies or health care providers' roles in DMD. For synthesizing evidence, we utilized Popay's Narrative Synthesis framework to analyze health systems, policies, and provider roles across included studies, allowing for an aggregation of a body of heterogenous data (quantitative, qualitative and mixed-methods). This methodological approach ensured that the review moved beyond a simple aggregation of findings to generate new insights into the structural gaps. 42 studies met the inclusion criteria. The programs described in these studies varied from residential life-skills training to respiratory-focused transition protocols. A significant disconnect was identified between international care guidelines and implementation; most initiatives are project-based rather than policy-driven. While neurology is central in pediatric care, respiratory and sleep medicine often become the de facto "medical home" for adults. Crucially, support for patients with neurodiverse development was only discussed in 4 of the 42 studies. This review underlines a lack of comprehensive care models for DMD transition, specifically within the high-resource settings that dominate the literature. Future policies must bridge the gap between project-based funding and sustainable health systems, specifically addressing neurodiversity and caregiver burden.
Maintaining activities of daily living is of great importance for patients who have cancer, and dependency is associated with psychological distress. However, evidence for rehabilitation remains scarce in this setting. The objective of this study was to evaluate the efficacy of a structured rehabilitation program for maintaining activities of daily living among patients with terminal cancer. This multicenter randomized controlled trial across 19 Japanese inpatient hospices/palliative care units enrolled patients who had terminal cancer with an Eastern Cooperative Oncology Group performance status of 2-3, a life expectancy ≥3 weeks, and no severe symptoms. Participants were randomly assigned (1:1, stratified by performance status and site) to either a 3-week structured rehabilitation program that incorporated key elements of rehabilitation for patients with terminal cancer or usual unstructured rehabilitation. The primary outcome was a change in the total modified Barthel Index from baseline to day 22. Secondary outcomes included the European Organization for Research and Treatment of Cancer Quality-of-Life Questionnaire Core 15-Palliative Care score and safety. Between July 8, 2019, and February 20, 2024, 130 patients were randomized (59 to the intervention group, 71 to the control group; 56 patients [43.0%] were women). The primary analysis included 77 participants who had complete data available. The mean change in total modified Barthel Index was -1.31 (95% confidence interval [CI], -10.89, 8.08) in the intervention group and -15.51 (95% CI, -24.02, -7.01) in the control group. The between-group difference was 14.21 (95% CI, 1.77-26.64; p = .026), exceeding the minimally clinically important difference (9.25). Patient-reported physical functioning on the European for Research and Treatment of Cancer Quality-of-Life Questionnaire Core 15-Palliative Care instrument was also significantly higher in the intervention group than in the control group. No serious harms occurred. Structured rehabilitation maintained activities of daily living better than unstructured rehabilitation in patients with terminal cancer, supporting its integration into routine care even in the last stage of cancer.
Serious illness conversations (SICs) aim to elicit patient preferences and are associated with improved quality of life and reduced care utilization, but they occur infrequently. Sustainable interventions that encourage SICs are needed. This pragmatic 4-arm randomized controlled trial enrolled adult patients at 5 disease-based oncology clinics at 2 sites of an academic cancer center between December 4, 2022, and July 31, 2024. All patients had pathways data indicating they were starting a treatment associated with a poor prognosis without documentation of an SIC in the Advance Care Planning module of the electronic health record (ACP-SICs) in the prior 6 months. Patients were randomized to 1 of 4 groups: (1) a nudge consisting of a mailed letter and questionnaire encouraging SICs; (2) a clinician nudge comprising an email reminder sent the day prior to the clinic visit to prompt an SIC; (3) both nudges; or (4) no nudges. The primary outcome was the proportion of patients with ACP-SICs within 60 days of randomization comparing the control (no-nudge) and combined-nudge arms; a prespecified alternate primary outcome included SICs identified in the free text of clinician notes using natural language processing (ACP + NLP-SIC). A total of 1,051 patients (median age, 65 years; 60% female; 79% White) were randomized to the control (n=261), clinician-nudge (n=240), patient-nudge (n=273), and combined-nudge arms (n=277). The ACP-SIC rates were 10.7%, 16.7%, 10.6%, and 17.3% for the control, clinician-nudge, patient-nudge, and combined-nudge arms, respectively, and the ACP + NLP-SIC rates were 22.6%, 28.8%, 22.3%, and 32.5%, respectively. Patients in the combined-nudge group had significantly higher ACP-SIC and ACP + NLP-SIC rates than the control group (P=.045 and P=.01, respectively), whereas the clinician-nudge and patient-nudge groups did not. Combined clinician- and patient-directed nudges resulted in higher SIC rates in 60 days, driven largely by the clinician nudge. NLP increased detection of SICs, demonstrating the importance of evaluating SICs in free-text notes.
This study aimed to assess aspects of validity of four FACE-Q Aesthetics scales in a sample of patients undergoing and planning facial minimally invasive cosmetic procedures (MICPs), such as botulinum toxin, lip augmentation and soft tissue augmentation treatments. In 2023, a cross-sectional survey included 210 Hungarian women who had undergone and 147 planning facial MICPs, with similar mean ages Respondents completed four FACE-Q scales (Aging Appraisal, Appearance Distress, Early Life Impact and Age VAS), EQ-5D-5L, Rosenberg Self-Esteem Scale (RSES) and the Brief Fear of Negative Evaluation Scale-Straightforward Items (BFNE-S). Comprehensibility, ceiling/floor effects, structural validity (principal component analysis, confirmatory factor analysis), internal consistency, and construct validity (convergent, divergent, known-group validity) of the four FACE-Q scales were assessed. All FACE-Q scales, except the Age VAS, showed a ceiling effect (20-28%). Appearance Distress showed strong convergent validity with RSES (r = 0.742), BFNE-S (r = - 0.702), and EQ-5D-5L anxiety/depression (r = - 0.519). Aging Appraisal and Appearance Distress scales were unidimensional, whereas Early Life Impact Scale had a three-factor structure. All four FACE-Q scales were able to differentiate between known groups of patients based on self-esteem, fear of negative evaluation and acceptance of bodily appearance. Women who had undergone procedures reported higher Aging Appraisal (72.9 vs. 63.3) and Appearance Distress (77.1 vs. 68.4) scores and felt younger (- 5.0 vs. - 2.8 years) than those planning them (p < 0.001 for all). Our findings provide initial support for the validity of the four FACE-Q scales in MICP populations, but further validation (e.g. assessment of responsiveness and test-retest reliability) is needed.
Head and neck cancer and its treatments often lead to significant functional and cosmetic changes, resulting in body image disturbance (BID), which is a prevalent and distressing psychosocial issue affecting up to 75% of patients. To address the clinical limitations of existing tools for assessing BID in Chinese patients, this study culturally adapted the English-language IMAGE-HN into Mandarin Chinese and evaluated its psychometric properties. Following the 2017 EORTC Translation Procedure Manual, a forward translation, reconciliation, backward translation, reporting, expert panel review, and cognitive debriefing were conducted to develop a culturally adapted Chinese version. The translated instrument was administered to 387 patients from two tertiary medical centers. Psychometric evaluation included classical test theory and item response theory, with confirmatory factor analysis to examine unidimensionality and local independence, and Rasch analysis to assess model fit, monotonicity, reliability, and separation indices. Confirmatory factor analysis confirmed the unidimensionality and local independence of the four hypothesized domains and the overall scale. Rasch analysis indicated acceptable model fit (infit and outfit mean squares < 2.0) and monotonicity across all rating scale categories. Person reliability ranged from 0.85 to 0.92, separation indices from 2.43 to 3.34, and item reliability from 0.71 to 0.95. All 24 items and subscales were retained without modification. The Chinese version of IMAGE-HN demonstrates satisfactory psychometric properties, supporting its reliability and validity for assessing body image disturbance in head and neck cancer patients in China. It is recommended for use in future clinical research and practice with this population.
Diverting loop ileostomy (DLI) after low anterior resection for rectal cancer reduces the clinical consequences of anastomotic leakage but is associated with significant morbidity, impaired quality of life and the need for a second operation for stoma closure. Temporary intraluminal bypass devices have been developed to protect the anastomosis while avoiding DLI. However, high-quality prospective data comparing such devices with standard DLI remain limited. This study aims to evaluate the safety and effectiveness of the Colovac device compared with DLI. SafeHeal Studies (SAFE-3), consisting of SafeHeal Standard of Care (Diverting Ileostomy) study (SH-SOC23) and SafeHeal Colovac Anastomosis Protection Device Evaluation Pivotal Study (SAFE-3CV), is an international, multicentre, prospective, non-randomised comparative study comprising two sequential cohorts: SH-SOC23 (standard-of-care diverting ileostomy control) and SAFE-3CV (Colovac anastomosis protection device). A total of 233 patients will be enrolled (SAFE-3CV n=108-120; SH-SOC23 n=132) across 25 centres in 4 countries. The primary endpoints are the rate of major complications at 9 months for safety and stoma avoidance at day 10 for effectiveness. Secondary outcomes include overall postoperative morbidity, stoma-related complications, reoperation rates, length of stay and stoma avoidance. Sample size calculation is based on non-inferiority assumptions. Data will be analysed using intention-to-treat principles, with propensity score adjustment to account for baseline differences between cohorts. Comparative analyses will include logistic regression and sensitivity analyses. The study was approved by ethics committees at the country level or at individual sites as per individual country requirements. An independent safety monitoring committee regularly reviews adverse events and safety data throughout the study. Results will be disseminated through peer-reviewed publications and presentations at international meetings. SH-SOC23: NCT06152276 and SAFE-3CV: NCT07116668.
Atopic dermatitis (AD) presents a multidimensional burden, often beginning in infancy and accumulating over time. Beyond itch and pain, AD is associated with significant losses of health-related quality of life resulting from sleep disturbance, stigmatization, other atopic diseases and nonatopic comorbidities, among others. These associated conditions affect patients' physical and mental health, development, social interaction and productivity, resulting in what has been termed cumulative life course impairment (CLCI). To alter the trajectory of AD and improve patient outcomes, it is important to identify people at risk of CLCI, measure it in clinical practice and intervene with appropriate treatment. Although a digital, structured questionnaire for adults exists, a separate instrument to assess CLCI in children and adolescents would benefit our understanding of these issues in a patient population in need. This paper discusses the need for such a questionnaire, with the goal of increasing awareness of the lifelong impact of AD among healthcare professionals, caregivers and patients, potentially improving shared decision-making and facilitating conversations about treatment.
To examine differences in perceptions between hematologists (HOs) and palliative care physicians (PCs) regarding red blood cell transfusion at the end of life. This cross-sectional questionnaire survey, conducted from August to September 2020, included responses from 1000 hematologists (HOs) and 759 palliative care physicians (PCs). The questionnaire assessed cutoff indications and opinions regarding red blood cell transfusion for anemia due to hematologic malignancy progression in patients with no indication for anticancer therapy. We defined a consensus Hb threshold as the highest level at which ≥ 70% of respondents would transfuse. Of 659 responses, 596 were valid (269 HOs and 327 PCs). For symptomatic cases, > 70% of HOs and PCs considered Hb cutoffs of 8.0 and 7.0 g/dL, respectively. For asymptomatic cases, < 70% of PCs recommended transfusion even at Hb ≤ 6.0 g/dL; therefore, an Hb cutoff for PCs could not be determined. Most HOs and PCs agreed to reduce transfusion frequency, while PCs were more likely than HOs to agree to discontinue transfusion. In contrast, HOs were more likely than PCs to agree to continue transfusion upon patient and/or family request and to consider patients with performance status 4 eligible for transfusion. Among adult patients with hematological malignancies who have no indication for anticancer therapy, hematologists tend to view transfusion more favorably and to transfuse more actively than palliative care physicians. Greater mutual understanding and consensus-building regarding transfusion indications at the end of life may facilitate appropriate palliative care referral for these patients.
Data on preventive care visits and long-term healthcare use patterns among children with prenatal opioid exposure remain limited. From a life course perspective, early impacts on health care engagement may shape patterns of health service use across childhood. To characterise early and long-term healthcare service visits among children with prenatal opioid exposure using linked population-based health administrative databases from Ontario, Canada. We conducted a population-based retrospective cohort study of live-born infants born between April 1, 2007, and March 31, 2018, who were born to mothers aged 15-50 years and who were eligible for provincial health insurance for at least 3 months before conception. Prenatal opioid use identified during routine prenatal care was extracted from clinical and perinatal health records. The primary outcome was the uptake of well-child visits until 24 months of age, an important early life preventive care period. Rates of all-cause inpatient, outpatient, and emergency department visits were examined and compared across the follow-up period and within specific time intervals up to 13 years of age. The final cohort totalled 1,343,653 live births, of whom 13,290 children (0.99%) had documented prenatal exposure to opioids. Prenatal opioid exposure was associated with reduced incidence of well-child visits (adjusted incidence rate ratio: 0.82 (95% CI: 0.81, 0.83)) from birth to 2 years. Exposed children were less likely to receive an enhanced 18-month well-child visit (adjusted risk ratio: 0.89 (95% CI: 0.88, 0.90)). Prenatal exposure was associated with increased rates of emergency department visits, specialist visits, hospitalisations and same-day surgery visits over the follow-up period. Differences in rates of health care visits were most pronounced in early childhood and attenuated for some services at older ages. Prenatal opioid exposure was associated with reduced uptake of preventive health services and greater use of ambulatory care. This finding is consistent with a life course model, in which early gaps in preventive care may influence later-life care use patterns, and highlights the need for effective strategies to promote access to and engagement with preventive care services for opioid-exposed children.
The COVID-19 pandemic and its associated lockdown measures have drastically impacted daily life, particularly among vulnerable populations. University staff faced significant challenges during the COVID-19 lockdown, particularly after restrictions were imposed, requiring them to quickly adapt to e-learning and remote work. Given the limited research on this topic and the intriguing findings of previous studies, this research seeks to address the gap by exploring the distinct challenges faced by university staff and offering strategies for improved support during future disruptions. This study investigates the quality of life (QoL) of both academic and non-academic staff at the university during the Movement Control Order (MCO), with a focus on identifying the factors that influence QoL. This cross-sectional study investigates the QoL among academic and non-academic staff at the university during the first MCO. Data were collected via an online survey conducted from May 2020 to April 2021, utilizing the WHOQOL-BREF questionnaire to evaluate physical health, psychological well-being, social relationships, and environmental domains. Among 427 participants, significant demographic insights emerged: over two-thirds were female, one-third held diplomas, and the majority faced financial constraints. QoL scores varied significantly across domains, with the widest distribution in the environmental domain. No gender-based differences in QoL scores were observed, but educational attainment, duration of employment, marital status, and family income significantly influenced QoL outcomes. Participants with higher education levels or longer employment durations generally reported better QoL. Married participants and families with higher incomes or fewer children also exhibited better scores in social and environmental domains. These findings underscore the profound interplay between socioeconomic and demographic factors in shaping QoL during lockdowns. The results highlight the urgent need for targeted interventions addressing financial stress and mental health challenges to mitigate the negative impacts of prolonged restrictions on vulnerable groups.
Fibromyalgia is a chronic pain disorder. Patients often introduce lifestyle changes, including dietary modifications and physical activity, after diagnosis to alleviate symptoms. However, real-world patterns of these post-diagnostic adaptations remain poorly understood. An exploratory cross-sectional study was conducted in 88 patients with fibromyalgia using a study-specific questionnaire. Spearman correlation and network analysis were applied to assess relationships between lifestyle changes. K-means clustering was used to identify adaptation patterns. Differences in symptom severity were evaluated using the Kruskal-Wallis test and regression analysis. Participants most frequently increased vegetable and water intake and reduced consumption of meat, alcohol, and sugar-sweetened beverages. Network analysis revealed structured co-occurrence patterns among dietary changes. Three clusters were identified: minimal (n = 47), selective (n = 27), and comprehensive (n = 14). No significant association was found between adaptation patterns and symptom severity (p = 0.53). Patients with fibromyalgia may adopt structured, non-random lifestyle changes following diagnosis. These findings provide a data-driven perspective on real-world behavioral adaptation patterns and highlight the need for longitudinal research to better understand their potential role in disease management.