Life Measures Research Articles

Pain in recessive dystrophic epidermolysis bullosa (RDEB): findings of the Prospective Epidermolysis Bullosa Longitudinal Evaluation Study (PEBLES)

BackgroundPain is common in the genetic skin fragility disorder epidermolysis bullosa (EB), from skin and mucosal injury and inflammation as well as extra-mucocutaneous sites. Individuals living with EB have identified pain as a priority for better treatments.ObjectivesThe Prospective EB Longitudinal Evaluation Study (PEBLES) is a prospective register study exploring the natural history of RDEB across all ages from birth to death. Here, we investigated the characteristics and treatment of pain in different RDEB subtypes.MethodsInformation was collected from individuals with different RDEB subtypes over an 8-year period. Data included visual analogue scale (VAS) ratings of background and procedural pain, its location, intensity and impact on sleep, as well as pain medication. Disease severity scores and quality of life measures were correlated to pain scores.ResultsSixty-one participants (13 children, 48 adults) completed a total of 361 reviews. Pain was common, experienced by 93% of participants at index review, with 80% suffering both background and procedural pain. Across all RDEB patients, the median VAS for background pain was 40 (out of 100) [interquartile range 20,60] and for those having regular dressing changes, median procedural pain was 52 [40,80]. Severe (RDEB-S) and pruriginosa (RDEB-Pru) groups had the greatest increase in procedural compared to background pain of 20 and 22 VAS points, respectively. Correlations between disease severity and quality of life impairment were observed across most groups, particularly RDEB-S. Over half of those studied experienced pain frequently or constantly, and in one third pain disturbed sleep at least 4 nights per week. Skin was the commonest source of pain in all subtypes except inversa RDEB where the mouth was the main site. Despite frequent and severe pain, one third of participants used no medication for pain and, in those that did, pain levels remained high suggesting ineffectiveness of current pain management approaches and a significant unmet need in RDEB.ConclusionThe frequency, severity, and impact of pain in all RDEB patients is significant, particularly in RDEB-S and RDEB-Pru. Our findings highlight that current RDEB pain management is poorly effective and that further research is needed to address this symptom.

Transcatheter Aortic Valve Implantation by Valve Type in Women With Small Annuli

Historically, women with aortic stenosis have experienced worse outcomes and inadequate recognition compared to men, being both underdiagnosed and undertreated, while also facing underrepresentation in clinical trials. To determine whether women with small aortic annuli undergoing transcatheter aortic valve replacement have better clinical and hemodynamic outcomes with a self-expanding valve (SEV) or balloon-expandable valve (BEV). The Small Annuli Randomized to Evolut or SAPIEN Trial (SMART) was a large-scale randomized clinical trial focusing on patients with small aortic annuli undergoing transcatheter aortic valve replacement, randomized to receive SEVs or BEVs and included 716 patients treated at 83 centers in Canada, Europe, Israel, and the US from April 2021 to October 2022. This prespecified secondary analysis reports clinical and hemodynamic findings for all 621 women enrolled in SMART. Data for this report were analyzed from February to April 2024. Transcatheter aortic valve replacement with an SEV or a BEV. The composite coprimary clinical end point comprised death, disabling stroke, or heart failure-related rehospitalization. The coprimary valve function end point was the incidence of bioprosthetic valve dysfunction, both assessed through 12 months. Secondary end points included the incidence of moderate or severe prosthesis-patient mismatch. A total of 621 women (mean [SD] age, 80.2 [6.2] years; 312 randomized to the SEV group and 309 to the BEV group) were included in the present analysis. At 12 months, there were no significant differences in the coprimary clinical end point between the SEV and BEV groups (9.4% vs 11.8%, absolute risk difference -2.3%; 95% CI -7.2 to 2.5, P = .35). However, SEV implantation was associated with less bioprosthetic valve dysfunction (8.4% vs 41.8%; absolute risk difference, -33.4%; 95% CI, -40.4 to -26.4; P < .001). SEV implantation resulted in lower aortic valve gradients and larger effective orifice areas at 30 days and 12 months and less mild or greater aortic regurgitation at 12 months compared to BEV implantation. Prosthesis-patient mismatch was significantly lower with SEVs, regardless of the definition used and adjustment for body mass index. Use of SEVs was associated with better quality of life outcomes as assessed by the Valve Academic Research Consortium-3 ordinal quality of life measure. Among women with severe symptomatic aortic stenosis and small aortic annuli undergoing transcatheter aortic valve replacement, the use of SEVs, compared to BEVs, resulted in similar clinical outcomes and a markedly reduced incidence of bioprosthetic valve dysfunction through 12 months, including a lower risk of prosthesis-patient mismatch and better 12-month quality of life. ClinicalTrials.gov Identifier: NCT04722250.

Embracing mortality: psychological preparation on death in the guidance of stoic philosophy

Humanity's greatest fear is the inevitability of death, the ultimate fate that all strive to evade. This collective dread of mortality stems from its perceived malevolence. Across the ages, from religious rituals promising salvation to scientific efforts to delay death, human attempts to confront mortality vary widely. Yet death remains inescapable, a natural consequence of life. While religious doctrines offer comfort through ideas of an afterlife, and science views death as a biological challenge to be postponed. Conversely, philosophy advocates for an intellectual acceptance of death's inevitability. The Stoic Philosophy, in particular, advocate for the joyful acceptance of death as an integral part of life. This philosophical stance fosters a positive perspective on death, encouraging individuals to live life to its fullest potential. Embracing death with joy entails psychological reassurance and preparatory measures for life's inevitable end. This qualitative study explores psychological preparation for death using primary and secondary data sources. Primary sources include the philosophical texts by Seneca and Marcus Aurelius, specifically "Letters to Lucilius," "On the Shortness of Life," and "Meditations." Secondary data is collected from peer-reviewed journals, books, and reports that contextualize these works within modern psychological frameworks. The primary audience includes individuals preparing for death due to age or illness and those grieving loved ones, offering a pathway to peace and understanding through Stoic wisdom. Moreover, this will be a guidance to those who work with the terminally ill people to get psychological resilience. By embracing death, Stoicism encourages both the dying and the bereaved to find psychological reassurance and encourage all to live a meaningful life in the given time frame.

Health-related quality of life assessment in health economic analyses involving type 2 diabetes.

Incorporating health-related quality of life (HRQoL) measures into health economic analyses can help to provide evidence to inform decisions about how to improve patient outcomes in the most cost-effective manner. The aim of this narrative review was to assess which HRQoL instruments have been used in economic evaluations of type 2 diabetes management including in Indigenous communities. MEDLINE (Ovid), Embase (Ovid) and Cochrane were searched from inception to June 2022. Studies included patients with type 2 diabetes; economic evaluations, derived scores from direct questioning of individuals; and were in English. Records were assessed for bias using the JBI critical appraisal tools. A total of 3737 records were identified, with 22 publications meeting the criteria for inclusion. Across those 22 articles, nine HRQoL instruments had been utilised. Generic tools were most frequently used to measure HRQoL, including EQ-5D (-3 L and -5 L) (n = 10, 38%); SF-12 (n = 5, 19%); and SF-36 (n = 4, 15%). Two tools addressing the specific stressors faced by people with type 2 diabetes were utilised: Problem Areas In Diabetes tool (n = 1, 4%) and Diabetes Distress Scale (n = 1, 4%). Two publications reported whether the study population included Indigenous peoples. A wide range of HRQoL instruments are used in economic evaluations of type 2 diabetes management, with the most frequent being varying forms of the EQ-5D. Few economic evaluations noted whether Indigenous peoples were featured in the study population. More research into HRQoL in people living with type 2 diabetes is urgently needed to improve evidence on effectiveness and cost-effectiveness of interventions.

Impact of Cachexia and First-Line Systemic Therapy for Previously Untreated Advanced Non-Small Cell Lung Cancer: NEJ050A.

Cancer cachexia complicates advanced non-small cell lung cancer (NSCLC); however, it remains unclear how often cachexia occurs and how it affects the course of chemotherapy in patients receiving first-line systemic therapy. We conducted a multicentre, prospective observational study and enrolled previously untreated NSCLC patients with Eastern Cooperative Oncology Group Performance Status (ECOG PS) of 0-2 and cachexia between September 2020 and September 2021. The primary outcome measure was the trends in the Functional Assessment of Anorexia/Cachexia Treatment and Anorexia/Cachexia Subscale [FAACT (A/CS)] scores by cohort. Secondary outcome measures included the incidence of cachexia before the initiation of first-line systemic therapy, quality of life (QOL) measures, body weight (BW) changes, and efficacy and safety of first-line systemic therapy. A total of 887 consecutive patients with previously untreated advanced NSCLC and ECOG PS of 0-2 who were initiated on first-line systemic therapy were evaluated. A total of 281 patients (31.7%) experienced BW loss consistent with the criteria of cachexia, and 186 were evaluated for QOL, BW and outcome measurements. Overall, 180/186 patients received first-line systemic therapy. Cohort 1 (targeted therapy), cohort 2 [cytotoxic chemotherapy (CTx) ± immune checkpoint inhibitors (ICIs)] and cohort 3 (ICIs) included 42, 98 and 40 patients, respectively. There were significant variations in QOL trends by cohort, with chemotherapy-associated emesis affecting early appetite-related QOL. The change in the FAACT (A/CS) score at 1 week from baseline was worse in cohort 2 (the least square mean change ± standard error: -3.0 ± 0.9) than in cohorts 1 (1.6 ± 1.2, p = 0.003) and 3 (1.8 ± 1.0, p = 0.002); meanwhile, the change at 6 weeks was worse in cohort 1 (-1.5 ± 1.2) than in cohorts 2 (3.6 ± 0.9, p = 0.001) and 3 (3.5 ± 1.1, p = 0.004). BW reduction was observed in all cohorts within 6 weeks of therapy initiation. The targeted therapy cohort demonstrated superior progression-free survival (PFS) and overall survival (OS) to CTx ± ICIs cohort or ICIs cohort (median PFS was 9.7 months, 6.3 months, 3.1 months, in cohort 1, 2, 3, respectively (cohort 1 vs. cohort 2: HR, 0.58, p = 0.018; cohort 1 vs. cohort 3: HR, 0.41, p = 0.001); median OS was not reached, 15.8 months, 9.9 months, respectively (cohort 1 vs. cohort 2: HR, 0.52, p = 0.033; cohort 1 vs. cohort 3: HR, 0.37, p = 0.003). Approximately 1/3 patients with previously untreated advanced NSCLC have cachexia. Appetite-related QOL trends vary based on the type of first-line systemic therapy in cachectic NSCLC patients, and the PFS and OS of these patients seemed to be shorter.

Organizational Implementation of Exercise Is Medicine® On Campus Programs

ABSTRACT Introduction The Exercise is Medicine® On Campus (EIM-OC) program, a physical activity initiative for universities, has a high potential for scalability and sustainability. Through EIM-OC’s recognition program, campuses achieve Gold-level status through the implementation of exercise referral. The current implementation and effectiveness of EIM-OC referral programs to increase student physical activity or health is largely unknown. The purpose of this study was to determine the implementation of the EIM-OC referral process and current assessments of effectiveness. Methods A cross-sectional survey of EIM-OC representatives currently at Gold-level campuses was conducted between April 1 and August 1, 2023, using the Practical, Robust Implementation and Sustainability Model (PRISM) framework. Results Thirty-three of 85 contacted campuses submitted complete responses. Of the eight campuses reporting all physical activity screening information, a total of 5682 individuals were screened. Of those who were screened, 356 (6.3%) individuals were referred to an exercise professional, with 135 (38.0%) following through with the referral. Half of campuses collected additional physical activity information (e.g., self-report surveys or accelerometers), 30% collected physical health (e.g., anthropometrics or blood) and/or mental health (e.g., depression symptoms or quality of life) measures, and 15% collected educational outcomes (e.g., grades). Approximately 20% of campuses reported a willingness to share data in a repository, depending on the measure, with others sharing concerns of confidentiality and institutional review board limitations. Only 36% of responding campuses tracked physical activity or health outcomes following the initial visit to assess effectiveness. Exercise programs included personal training only (n = 10), exercise prescription/health coaching (n = 12), or both (n = 8). Conclusion Although Gold-level campuses are generally successful in the assessment of physical activity, strategies are needed to improve the reach of EIM-OC programs, specifically implementation strategies to increase the number of individuals screened and successful follow-ups. Additional standardized measures and tracking are needed to determine the effectiveness of EIM-OC programs on improving student physical activity and health.

Adding Metastasis-Directed Therapy to Standard-of-Care Systemic Therapy for Oligometastatic Breast Cancer (EXTEND): A Multicenter, Randomized Phase 2 Trial

PurposePrior evidence suggests a progression-free survival (PFS) benefit from adding metastasis-directed therapy (MDT) to standard-of-care (SOC) systemic therapy for patients with some oligometastatic solid tumors. Randomized trials testing this hypothesis in breast cancer have yet to be published. We sought to determine whether adding MDT to SOC systemic therapy improves PFS in oligometastatic breast cancer. MethodsEXTEND is a multicenter phase II randomized basket trial testing the addition of MDT to SOC systemic therapy in patients with ≤5 metastases (NCT03599765). Patients were randomized 1:1 to MDT (definitive local treatment to all sites of disease, plus SOC systemic therapy) or to SOC systemic therapy only. Primary endpoint was PFS, and secondary endpoints included overall survival (OS), time to subsequent line of systemic therapy, and time to the appearance of new metastases. Exploratory analyses included quality of life (QOL) and systemic immune response measures. ResultsFrom September 2018 through July 2022, 22 and 21 patients were randomized to the MDT and no-MDT arms, respectively. At a median follow-up of 24.8 months, PFS was not improved with the addition of MDT to SOC systemic therapy (median PFS 15.6 months MDT vs 24.9 months no-MDT [hazard ratio {HR} 0.91; 95% CI 0.34–2.48, p=0.86]). Similarly, MDT did not improve OS, time to subsequent line of systemic therapy, or time to the appearance of new metastases (all p>0.05). No significant differences were found in QOL measures, systemic T-cell activation, or T-cell stimulatory cytokine concentration. ConclusionAmong patients with oligometastatic breast cancer, the addition of MDT to SOC systemic therapy did not improve PFS. These findings suggest that MDT may have no systemic benefit in otherwise unselected oligometastatic breast cancer patients, although this trial was limited by a heterogenous and small sample size and overperformance of both treatment arms.

Measuring what matters to older persons for active living: part I content development for the OPAL measure across four countries.

Many older persons do not think of themselves as "patients" but as persons wishing to live as actively as possible for as long as possible. However, most health-related quality of life (HRQL) measures were developed for use with clinical populations. The aim of this project was to fill that gap and to develop, for international use, a measure of what matters to older persons as they age and seek to remain as active as possible, Older Persons for Active Living (OPAL). For content development, interviews about active living were conducted with older persons from Canada, USA, UK, and the Netherlands in English, French, Spanish and Dutch, respectively with subsequent thematic analysis and harmonization. Analyses of transcripts from 148 older persons revealed that active living was a "way of being" and not merely doing activities. Saturation was reached and a total of 59 content areas were identified. After grouping similar "ways" together and after conducting a consensus rating of importance, 19 unique and important "ways" remained. In some languages, formulating was challenging for three of the 19, resulting in changes to two English words and dropping two other words, yielding a final list of 17 "ways of being" with harmonized wording in 4 languages. This study underscores the significance of listening to older adults and highlights the importance of considering linguistic and cultural nuances in measure development.

Breathing techniques to reduce symptoms in people with serious respiratory illness: a systematic review.

In adults with serious respiratory illness, breathlessness is prevalent and associated with reduced health-related quality of life. The aim of this review was to assess the impact of breathing techniques on breathlessness in adults with serious respiratory illness. Electronic databases were searched to identify randomised controlled trials testing breathing techniques (techniques that aim to alter the respiratory pattern, excluding respiratory muscle training) in people with serious respiratory illness. The primary outcome was breathlessness and secondary outcomes were health-related quality of life and adverse events. Two authors independently screened for inclusion, evaluated risk of bias and extracted data. 73 randomised controlled trials were included with 5479 participants, most with COPD or asthma. Breathing exercises (pursed lip and/or diaphragmatic breathing) reduced breathlessness measured by the modified Medical Research Council scale compared to usual care (mean difference (MD) -0.40 points, 95% CI -0.70- -0.11, eight studies, n=323), although the effect did not exceed the minimal important difference. Yoga breathing also improved modified Medical Research Council score compared to usual care (MD -1.05 points, 95% CI -2.45-0.35, three studies, n=175). Breathing techniques consistently improved health-related quality of life in people with COPD and asthma on multiple health-related quality of life measures in comparison to usual care, with effects that generally exceeded the minimal important difference. No adverse events related to breathing techniques were reported. Breathing techniques may improve breathlessness, and consistently improve health-related quality of life, in people with serious respiratory illness. These findings support the use of breathing exercises in the care of people with serious respiratory illness.

Assessment of disease impact through health‐related quality of life measurement in primary progressive aphasia

AbstractINTRODUCTIONMeasurements of health‐related quality of life (HRQoL) are important for capturing disease impact beyond physical health and relative to other diseases but have rarely been assessed in primary progressive aphasia (PPA).METHODSHRQoL was characterized overall, by sex and subtype in PPA (n = 118) using the Health Utilities Index‐2/3 (HUI2/3). Multiple linear regression assessed associations between HRQoL and language severity.RESULTSMulti‐attribute HUI2/3 summary scores indicated moderate to severe impairment. Scores did not differ by sex and were more severe for semantic than non‐semantic PPA. Language severity scores showed significant associations with HUI multi‐attribute scores and select single‐attribute measures (hearing, sensation, cognition, and speech) with less language impairment associated with better functional capacity related to HRQoL.DISCUSSIONThis study identified poor HRQoL in a relatively large PPA cohort. HRQoL measures aid in determining patient perspective, policy decision making, and resource allocation. Results may be used to advocate for PPA support.Highlights Primary progressive aphasia (PPA) negatively impacts health‐related quality of life. Health utilities index scores are associated with Western Aphasia Battery performance in PPA. Severity of language impairment in PPA is associated with poorer quality of life.

Impact of self-reported race on Villalta Scale postthrombotic syndrome scores and correlation with venous disease-specific quality of life: an exploratory analysis of the Acute Venous Thrombosis: Thrombus Removal with Adjunctive Catheter-Directed Thrombolysis Trial

BackgroundThe Villalta Scale (VS) to diagnose postthrombotic syndrome (PTS) consists of 5 patient-reported leg symptoms and 6 clinician-rated leg signs. It is unknown how the scale performs across racial groups. ObjectivesOur study explored if there were differences in VS scores, particularly clinician-rated signs components, according to self-reported race. MethodsExploratory analysis of the ATTRACT trial, a randomized controlled trial conducted at 56 US sites that investigated pharmacomechanical catheter-directed thrombolysis to prevent PTS after proximal deep vein thrombosis (DVT). At the 6-month visit after randomization, we compared self-reported Black (n = 123) and White (n = 541) participants for mean total VS score, VS symptoms score, VS signs score, individual signs scores, and correlation coefficients between VS signs and VS symptoms scores and between VS signs and Venous Insufficiency Epidemiological and Economic Study Quality of Life (VEINES-QOL) scores (a self-reported venous disease-specific quality of life measure). ResultsMean total VS score (4.67 vs. 4.12, P = .54),VS signs score (1.66 vs. 2.00, P = .07), and VS symptoms score (2.83 vs. 2.04, P = .10) were similar between Black and White participants. The mean score for one individual VS sign, venous ectasia, was lower in Black vs. White participants (0.24 vs. 0.63, P< .01). There was similar, modest correlation in Black and White participants between VS signs and VS symptoms scores (rblack = 0.19; rwhite = 0.23) and between VS signs and VEINES-QOL scores (rblack = −0.32; rwhite = −0.30). Results were adjusted for ATTRACT trial treatment group, age, sex, body mass index, DVT extent, hypertension, diabetes, dyslipidemia, and congestive heart failure. ConclusionThe findings suggest that some differences in VS scores exist according to self-reported race. It is unclear whether these reflect clinicians’ underrating of some VS signs and/or differences in PTS severity. Further work is needed to understand how the VS performs across racial groups.

Validation of the Chinese Version of Quality of Life Instrument (QUALIDEM-C) for People With Dementia in Long-Term Care Home.

To validate and examine the psychometric properties of the Chinese version of QUALIDEM (QUALIDEM-C). The psychometric properties of the Chinese QUALIDEM were tested in a sample of 150 residents in long-term care homes. Concurrent validity, internal consistency, inter-rater reliability, test-retest reliability and factor structure were determined. QUALIDEM-C demonstrated good semantic equivalence with original version and good content validity. QUALIDEM-C showed satisfactory internal consistency (Cronbachs' alpha=0.895), inter-rater reliability (ICC=0.970) and test-retest reliability (ICC=0.942). Acceptable concurrent validity was showed by consistently moderate correlations of QUALIDEM-C with generic and disease specific quality of life measures. QUALIDEM-C is reliable and valid scales to measure quality of life of residents in long-term care home. Its applicability across residents with different levels of cognitive function favors its use over other measures in this context. It is potentially an effective tool, rather by multiple measures, to evaluate quality of life in future long-term care home research.

Determining the Severity of Benign Urologic Health States in Men Using Utilities Measures

ObjectivesTo assess a population level perceived health status of common reconstructive urologic conditions using health utilities. MethodsHealth utilities are generic quality of life measures that can help describe overall health status and can quantitatively compare different disease states and the perceived benefits of various interventions. An a priori determined, representative sample of adult men were recruited by Qualtrics™ to review standardized scenarios describing typical patients with reconstructive urologic conditions, surgeries to treat conditions, and control conditions (e.g. blindness, osteoarthritis). Condition-specific health status was measured using four tools: visual analog scale, standard gamble, time-trade off and willingness-to-pay and reported in Quality-adjusted Life Years (QALY; range 0.0 (death) to 1.0 (perfect health)). ResultsWe analyzed 562 completed surveys from condition-naive participants. Condition-specific health status ranged from a mean of 0.52 QALY to 0.66 QALY, with all reconstructive conditions perceived to be worse than osteoarthritis and monocular blindness (QALY 0.68). Health status was lowest for adult acquired buried penis (0.52 QALY) and pelvic radiation disease (0.53 QALY), comparable to binocular blindness (QALY 0.52). Treatment of erectile dysfunction with inflatable penile prosthesis (∆QALY +0.02; p<0.001) and stress urinary incontinence with artificial urinary sphincter (∆QALY +0.04; p<0.001) offered only nominal perceived gain in health status. ConclusionsHealth utilities may improve the ability to discriminate between heterogeneous reconstructive urologic disease states. For non-oncologic disease states in which mortality is not measured, health utilities could improve the ability to measure societal impact and justification for clinical and research investment.

Prospective crossover trial of positional and CPAP therapy for the treatment of mild-to-moderate positional obstructive sleep apnea.

To evaluate efficacy of vibrotactile positional therapy (PT) compared to standard CPAP therapy in mild-to-moderate positional obstructive sleep apnea (pOSA). Prospective crossover randomized controlled trial of adult patients with treatment-naïve, symptomatic, mild-to-moderate pOSA - defined as ≥5 total apnea-hypopnea index (AHI) <30 with supine-to-non-supine (s:ns)AHI ratio ≥2. Participants were randomized to in-laboratory treatment initiation polysomnography with either PT or CPAP on sequential nights before an eight-week trial of each therapy. The primary endpoint was symptomatic improvement (Epworth Sleepiness Scale; ΔESS). Secondary endpoints included patient preference, usage, sleep architecture and quality of life (QoL) measures. 52 participants were enrolled and completed both arms of the study. Participants were symptomatic with median ESS 12 (IQR 10-14). Treatment resulted in a significant (p<0.001) symptomatic improvement with both PT and CPAP (ΔESS 4; IQR 6-11) without a significant difference between treatment arms (p=0.782). PT was effective at restricting supine sleep and demonstrated improved sleep efficiency compared with CPAP, although no better than baseline. Both therapies were effective at reducing AHI, although CPAP demonstrated superior AHI reduction. There were otherwise no clinically significant differences in sleep architecture, usage, or secondary outcomes including overall patient preference. In this cohort, treatment with PT or CPAP resulted in clinically significant symptomatic improvement (ΔESS) that was not significantly different between treatment arms. No real difference was seen in other secondary outcome measures. This study provides further evidence to support the use of PT as an alternative first-line therapy with CPAP in appropriately selected patients with pOSA. Registry: Australian New Zealand Clinic Trials Registry; Name: Prospective crossover trial of Positional and Continuous positive airway pressure Therapy for the treatment of mild-to-moderate positional obstructive sleep apnoea; Identifier: ACTRN12619000475145; URL: https://anzctr.org.au/Trial/Registration/TrialReview.aspx?id=377221&isReview=true.

Apathy and Impulsivity Co-Occur in Huntington's Disease.

Apathy is a debilitating behavioral change in Huntington's disease (HD), but impulsivity in HD has not been well documented, and the co-occurrence of these behaviors in HD has not been investigated. Our objective was to determine whether apathy and impulsivity co-occur in people with HD and their associations with quality of life. Carriers of Huntington's gene expansion (premanifest to mild motor manifest disease; n=42) along with healthy controls (n=20) completed measures of apathy (Apathy Evaluation Scale and Apathy Motivation Index) and impulsivity (Barratt Impulsiveness Scale-11 and UPPS-P impulsivity scale), along with mood, cognition, clinical, and quality of life measures. Apathy and impulsivity measures were each reduced to a single metric per patient using principal component analysis. Correlations and multiple linear regression models determined associations between apathy and impulsivity and the potential influence of other covariates. Apathy and impulsivity were significantly correlated (r=0.6, p<0.001, 95% CI [0.36, 0.76]) in HD, with this association remaining after controlling for depressive symptoms, motor disease severity, and cognitive function. Furthermore, apathy and depressive symptoms were associated with poorer quality of life. Apathy and impulsivity co-occur in individuals with premanifest to mild manifest HD and have a significant impact on wellbeing. We add to a growing evidence body that apathy and impulsivity may be intrinsically linked.

Validity And Reliability Of The Central Kurdish Version Of The Tinnitus Handicap Questionnaire (THQ-CK)

Background — The goal of this study was to evaluate the reliability and validity of the Central Kurdish version of the Tinnitus Handicap Questionnaire (THQ-CK). Initially, the THQ was translated into the central Kurdish language, resulting in the THQ-CK. Subsequently, a supplementary assessment was conducted to ascertain the reliability and validity of the THQ-CK. Methods — The original version of the THQ was translated into the Kurdish language and then offered to 275 tinnitus patients. The procedures were performed using published guidelines for cross-cultural adaptation of health-related quality of life measures. The Tinnitus Handicap Questionnaire (THQ), the Tinnitus Primary Function Questionnaire (TPFQ), and the Visual Analogue Scale (VAS) for tinnitus loudness and annoyance were offered to participants suffering from tinnitus. In addition, a pure-tone audiogram was obtained. Results — Our study encompassed a total of 275 patients (132 female, 143 male). Their mean age was 47.43±14.32 years. Of them, 43.6% previously worked in a noisy environment. The internal consistency of the THQ total score and its factors (Cronbach’s alpha of total scores: 0.833; factors: 0.949, 0.959, 0.960) suggested excellent reliability. The test-retest correlation coefficient demonstrated excellent reliability (0.9) for the total scores, and factors 1 and 2, but moderate reliability (0.66) for factor 3. The THQ-CK demonstrated good construct validity, as indicated by the strong correlation (r=0.757) between the THQ-CK and TPFQ scores. Conclusion — The evaluation of the validity and reliability of the THQ-CK suggests that it is a reliable instrument for assessing the impact of tinnitus on individuals in the central Kurdish-speaking population. The study contributes valuable information to the field of tinnitus research and opens up avenues for future cross-cultural studies.

The Lived Experience of Frailty: Are Frailty Intervention Teams Adding to Patient Quality of Life?

Abstract Background Numerous clinical tools are used to identify and quantify frailty, but the lived experience of frailty is not consistently measured or considered in clinical practice. The project aim was to understand the health perceptions of older adults treated by the Frailty Intervention Team (FIT) and establish if the team has an impact on care burden. Methods Participants were recruited from a hospital based, out-patient Frailty Intervention Clinic over a 4-month period. Older adults were classified as frail by the Clinical Frailty Scale (CFS). The lived experience of frailty was assessed via the EQ 5D 5L a self-rated quality of life measure with a visual analogue scale (EQ VAS). The impact of frailty on carers was examined by the Carer Strain Index (CSI). These subjective measures were recorded on initial assessment and 2 months post intervention. Results 31 individuals were assessed (male n=13, female n=18). The average CFS was 4.98 (4.91 male, 5.05 female), indicative of ‘Living with Mild Frailty’. 74.19% of participants (male n=9, female n=14) responded to the follow up questionnaires. Pre-intervention, EQ VAS average responses were 42.5/100 for males and 49.33/100 for females. Two months post intervention improvements were observed in both males and females with scores of 72.77/100 and 62.5/100 respectively. CFS ratings remained unchanged post intervention. 29% of carers reported a CSI of greater than 7/12 pre intervention – indicating high level of carer burden. Post intervention this figure reduced to 9.6% of carers. Conclusion This FIT model adds positively to the lives of older adults in a holistic manner. The average participant rated their health positively post intervention despite being classified as ‘Living with Mild Frailty’. This underscores that the patient is the expert of their own experience and challenges the negative perceptions of frailty. Highlighting the need for a holistic understanding of frailty beyond classification scales.

Enhanced supercapacitive performance in Cu doped Sn3O4 synthesized by a simple extract route

The synthesis of nanomaterials using plant extracts is of great importance for a sustainable, chemical-free future. In this study, multivalent Sn3O4 doped with Ni and Cu were synthesized by a simple, low-cost method using Moringa oleifera leaf extract at low temperature and investigated for supercapacitor applications. Various characterizations indicate that the synthesized samples crystallize in a triclinic space group and have a larger surface area of 109.2 m2/g, which is advantageous for electron and ion transport. Electrochemical studies were carried out by cyclic voltammetry, galvanostatic charge/discharge, impedance spectroscopy and cycle life measurements in 6 M KOH electrolyte. Cu-doped Sn3O4 showed the highest capacitance of 608 C/g at a current density of 1 A/g. An asymmetric device built with it delivered an energy density of 31.5 Wh/Kg at a power density of 1400 W/Kg and retained 85 % capacity even after 6000 continuous cycles. The results show that extract-based synthesis of multivalent oxides is beneficial not only for a sustainable environment but also for achieving superior capacity.

Enhancing quality of life measurement: adapting the ASCOT easy read for older adults accessing social care.

This study aimed to adapt and assess the content validity of the ASCOT Easy Read (ASCOT-ER) for older people accessing social care. A co-production working group of 8 older social care users and their supporters was established to evaluate the comprehensibilityand relevanceof the ASCOT-ER images, wording and layout. Changes made by the working group were iteratively tested using cognitive interviewing techniques (think aloud) with 25 older social care users not able to self-complete the original ASCOT. Co-research with people with dementia and their supporters was critical to the development of an effective and accessible tool. Issues identified with comprehension, recall, judgement and response were addressed through iterative adjustments to design, layout and wording. An unexpected finding was that illustrations were disliked or disregarded by the majority of people, and, in particular, those living with dementia. This result contrasts with the typical assumption of easy read approaches, where illustrations are expected to enhance comprehension. The ASCOT-ER measure for older people is suitable for older people using social care services with mild to moderate dementia, mild cognitive impairment and other age-related needs. The revisions applied were designed to improve comprehension, judgement and response for this group and even those who were most cognitively impaired experienced fewer issues by the final round of testing. Nonetheless, some prompting was still required, particularly for those with higher levels of cognitive impairment and it is likely that some respondents will require the questionnaire to be administered in an interview format.

Advancing patient-centered cancer care: a systematic review of electronic patient-reported outcome measures.

Electronic Patient-Reported Outcome Measures (ePROMs) have emerged as valuable tools in cancer care, facilitating the comprehensive assessment of patients' physical, psychological, and social well-being. This study synthesizes literature on the utilization of ePROMs in oncology, highlighting the diverse array of measurement instruments and questionnaires employed in cancer patient assessments. By comprehensively analyzing existing research, this study provides insights into the landscape of ePROMs, informs future research directions, and aims to optimize patient-centred oncology care through the strategic integration of ePROMs into clinical practice. A systematic review was conducted by searching peer-reviewed articles published in academic journals without time limitations up to 2024. The search was performed across multiple electronic databases, including PubMed, Scopus, and Web of Science, using predefined search terms related to cancer, measurement instruments, and patient assessment. The selected articles underwent a rigorous quality assessment using the Mixed Methods Appraisal Tool (MMAT). The review of 85 studies revealed a diverse range of measurement instruments and questionnaires utilized in cancer patient assessments. Prominent instruments such as the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) and the Patient Reported Outcome-Common Terminology Criteria for Adverse Events (PRO-CTCAE) were frequently referenced across multiple studies. Additionally, other instruments identified included generic health-related quality of life measures and disease-specific assessments tailored to particular cancer types. The findings indicated the importance of utilizing a variety of measurement tools to comprehensively assess the multifaceted needs and experiences of cancer patients. Our systematic review provides a comprehensive examination of the varied tools and ePROMs employed in cancer care, accentuating the perpetual requirement for development and validation. Prominent instruments like the EORTC QLQ-C30 and PRO-CTCAE are underscored, emphasizing the necessity for a thorough assessment to meet the multifaceted needs of patients. Looking ahead, scholarly endeavours should prioritize the enhancement of existing tools and the creation of novel measures to adeptly address the evolving demands of cancer patients across heterogeneous settings and populations.