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A health-related (HR) profile is a set of multiple health-related items recording the status of the patient at different follow-up times post-stroke. In order to support clinicians in designing rehabilitation treatment programs, we propose a novel multi-task learning (MTL) strategy for predicting post-stroke patient HR profiles. The HR profile in this study is measured by the Barthel index (BI) assessment or by the EQ-5D-3L questionnaire. Three datasets are used in this work and for each dataset six neural network architectures are developed and tested. Results indicate that an MTL architecture combining a pre-trained network for all tasks with a concatenation strategy conditioned by a task grouping method is a promising approach for predicting the HR profile of a patient with stroke at different phases of the patient journey. These models obtained a mean F1-score of 0.434 (standard deviation 0.022, confidence interval at 95% [0.428, 0.44]) calculated across all the items when predicting BI at 3 months after stroke (MaS), 0.388 (standard deviation 0.029, confidence interval at 95% [0.38, 0.397]) when predicting EQ-5D-3L at 6MaS, and 0.462 (standard deviation 0.029, confidence interval at 95% [0.454, 0.47]) when predicting the EQ-5D-3L at 18MaS. Furthermore, our MTL architecture outperforms the reference single-task learning models and the classic MTL of all tasks in 8 out of 10 tasks when predicting BI at 3MaS and has better prediction performance than the reference models on all tasks when predicting EQ-5D-3L at 6 and 18MaS. The models we present in this paper are the first models to predict the components of the BI or the EQ-5D-3L, and our results demonstrate the potential benefits of using MTL in a health context to predict patient profiles. [ABSTRACT FROM AUTHOR]

Fatigue is a pervasive symptom experienced by many individuals after COVID-19. Despite its widespread occurrence, fatigue remains a poorly understood and complex phenomenon. Our aim is to evaluate the subjective experience of mental fatigue after COVID-19 and to assess its significance for daily life functioning. In this online questionnaire study (N = 220), the Fatigue Severity Scale (FSS), World Health Organization Quality-of-Life assessment (WHOQoL) and a subjective severity rating of the COVID-19 disease progression were used. For our statistical analyses we utilized independent samples t-tests, one-way ANOVA with post-hoc analyses, and a multiple regression. As expected our findings revealed the COVID group reported significantly higher levels of subjective fatigue compared to the control group. Moreover, there was a significant difference between experienced fatigue across the four severity groups. Participants who had a milder course of disease also experienced severe subjective fatigue. Subjective fatigue explained 40% variance in quality-of-life. In conclusion, severe subjective fatigue appears to be associated with increased self-reported COVID-19 symptom severity and lower quality-of-life but is already observable in milder cases. This underscores, firstly, the importance of considering also less severe cases and, secondly, the need to develop rehabilitation and psychological interventions for fatigue. [ABSTRACT FROM AUTHOR]

Objective: The quality of the relationship between persons with dementia and family carers influences health and quality-of-life outcomes. Little is known regarding those at higher risk of experiencing a decline in relationship quality, who could potentially benefit the most from interventions. We aimed to identify these risk profiles and explore the underlying factors. Methods: We applied a latent profile analysis to relationship quality data from a 1-year follow-up of 350 dyads of persons with dementia and their informal carers from the Actifcare cohort in eight European countries. Assessments included sociodemographic, clinical, functional, psychosocial and quality-of-life measures. Relationship quality was assessed with the Positive Affect Index. A discriminant analysis explored factors influencing the risk profiles. Results: There were two relationship quality profiles among persons with dementia (gradually decreasing, 74.0%; low but improving, 26%) and two among carers (steadily poor, 57.7%; consistently positive, 42.3%). The 'gradually decreasing' profile (persons with dementia) was related to their levels of dependence and unmet needs, along with carers' social distress and negative feelings, lower baseline RQ and sense of coherence. The 'steadily poor' profile (carers) was influenced by their social distress and negative feelings, lower sense of coherence and perceived social support. These two predominant profiles showed significant decreases in quality-of-life over one year. Conclusions: Specific profiles of persons with dementia and their carers are at risk of worse relationship quality trajectories. By considering modifiable related factors (e.g., carers' stress), our findings can help develop tailored, effective interventions. [ABSTRACT FROM AUTHOR]

Young adults aged 18–28 represent a pivotal demographic whose experiences of inequality significantly shape their life trajectories in cities. Despite their potential for innovation and social advancement, public agendas often marginalize their needs and aspirations. This paper explores urban inequality among young adults by examining how they define and value different aspects of their daily lives when urban inequality is at play. Drawing on focus group discussions in two socioeconomically segregated urban districts in Bogotá, this paper employs the capability approach to construct a comprehensive list of 15 capability domains that young adults use to define and value their daily experiences. The paper adds to the existing literature a detail a step-by-step process involving the identification, selection, and ranking of relevant capabilities, with young adults actively engaged in value judgements through a deliberative process of public reasoning. Findings reveal that quality-of-life domains for young adults extend beyond traditional youth policy sectors, encompassing political participation, public space and mobility, social norms, and independence. The results not only expand the scope of existing youth agendas but also align with demands expressed during recent social unrest in Colombia and the region, where young adults have played a central and vocal role. [ABSTRACT FROM AUTHOR]

Selenoprotein P (SELENOP) transports selenium to extrahepatic tissues and is a biomarker of selenium status. Low soil selenium leads to low dietary selenium intake. A consequence is an increased risk of cardiovascular disease. To investigate clinical aspects associated with SELENOP deficiency, including biomarkers of inflammation, quality of life, and mortality within 12 years, and the effect of dietary selenium and coenzyme Q 10 supplementation on SELENOP. SELENOP was determined at inclusion and after four years of supplementation in 403 elderly community-living participants low in selenium receiving selenium yeast (200 μg/day) and coenzyme Q 10 (200 mg/day), or placebo. Pre-intervention, the average serum selenium level was 67 μg/L. T-tests, repeated measures of variance, Cox proportional regressions analyses, Kaplan-Meier graphs and ANCOVA analyses were applied. Associations with biomarkers of inflammation, telomere length, quality of life and mortality were investigated. Benchmark modelling was used to determine the serum selenium concentration at which the saturation levels of SELENOP and GPx3 was achieved. Comparison with GPx3 and serum selenium to identify increased mortality risk was performed, and the effect of supplementation on SELENOP levels were evaluated. Inverse associations were observed between the level of SELENOP at inclusion and biomarkers for inflammation. At follow-up, shorter telomere lengths were seen in those with low levels of SELENOP at inclusion, whereas high levels of SELENOP were associated with better quality of life and decreased mortality. SELENOP had increased prognostic power compared to GPx3 and selenium. Saturation of SELENOP was achieved at a serum selenium level of 146 μg/L, and for GPx3 at 99 μg/L. Supplementation induced higher levels of SELENOP. Significant associations between SELENOP and inflammation, length of telomeres, quality of life, and mortality were observed. Thus, selenium supplementation improved SELENOP expression, thereby facilitating systemic selenium bioavailability and resulting in the observed positive health effects. [Display omitted] • Low and decreasing selenoprotein P (SELENOP) status in elderly subjects associated with all-cause and cardiovascular mortality. • Low SELENOP was associated with increased telomere attrition and impaired quality of life. • Randomized controlled intervention with selenium and coenzymeQ10 raised serum SELENOP. • Increased SELENOP associated with reduced telomere attrition, mortality, and improved quality of life. • SELENOP may translate the applied supplements into improved selenium transport, status and health benefits. [ABSTRACT FROM AUTHOR]

This study aimed to compare the impact of a cardiac telerehabilitation (CTR) protocol aimed at patients with cardiovascular diseases (CVDs) during the period of coronavirus disease 2019 (COVID-19) associated with social isolation. This retrospective cohort study included 58 participants diagnosed with stable cardiovascular diseases (CVDs), which were divided into three groups: conventional cardiac rehabilitation (CCR) group (n = 20), composed of patients undergoing conventional cardiac rehabilitation; cardiac telerehabilitation (CTR) group (n = 18), composed of patients undergoing cardiac telerehabilitation and control group (n = 20), composed of patients admitted for cardiac rehabilitation who had not started training programs. The results showed that body mass index was reduced (p = 0.019) and quality of life was improved (e.g., limitations due to physical aspects [p = 0.021), vitality [p = 0.045] and limitations due to emotional aspects [p = 0.024]) by CCR compared to baseline. These outcomes were not improved by CTR (p > 0.05). However, this strategy prevented clinical deterioration in the investigated patients. Although CCR achieved a superior effect on clinical improvement and quality of life, CTR was relevant to stabilize the blood pressure and quality of life of patients with cardiovascular diseases during the period of COVID-19-associated social isolation. [ABSTRACT FROM AUTHOR]

AIM: To psychometrically validate the Chinese version of the dry eye-related quality-of-life score questionnaire (DEQS-CHN) among Chinese patients with dry eye. METHODS: This study involved 231 participants, including 191 with dry eye disease (DED) comprising the dry eye disease group, and 40 healthy participants forming the control group. Participants were required to complete the DEQS-CHN, and Chinese dry eye questionnaire and undergo clinical tests including the fluorescein breakup time (FBUT), corneal fluorescein staining (CFS), and Schirmer I test. To assess the internal consistency and retest reliability, Cronbach's α and the intraclass correlation coefficient (ICC) were employed. Content validity was assessed by item-level content validity index (ICV) and an average scale-level content validity index (S-CVI/Ave). Construct validity was assessed by confirmatory factor analysis. The concurrent validity was assessed by calculating correlations between DEQS-CHN and Chinese dry eye questionnaire. Discriminative validity was evaluated through non-parametric tests, with receiver operating characteristic (ROC) curve serving as conclusive indicators of the questionnaire's distinguishing capability. RESULTS: The Cronbach's α coefficients for frequency and degree of ocular symptoms, impact on daily life, and summary score were 0.736, 0.704, 0.811, 0.818, 0.861, and 0.860, respectively, and the ICC were 0.611, 0.677, 0.715, 0.769, 0.711, and 0.779, respectively. All I-CVI scores ranged from 0.833 to 1.000, with an S-CVI/Ave of 0.956. Confirmatory factor analysis results exhibited a well-fitting model consistent with the original questionnaire CONCLUSION: The DEQS-CHN has been demonstrated as a valid and reliable instrument for assessing the impact of dry eye disease on the quality of life among Chinese individuals with DED.

This study aimed to compare the impact of a cardiac telerehabilitation (CTR) protocol aimed at patients with cardiovascular diseases (CVDs) during the period of coronavirus disease 2019 (COVID-19) associated with social isolation. This retrospective cohort study included 58 participants diagnosed with stable cardiovascular diseases (CVDs), which were divided into three groups: conventional cardiac rehabilitation (CCR) group (n ​= ​20), composed of patients undergoing conventional cardiac rehabilitation; cardiac telerehabilitation (CTR) group (n ​= ​18), composed of patients undergoing cardiac telerehabilitation and control group (n ​= ​20), composed of patients admitted for cardiac rehabilitation who had not started training programs. The results showed that body mass index was reduced (p ​= ​0.019) and quality of life was improved (e.g., limitations due to physical aspects [p ​= ​0.021), vitality [p ​= ​0.045] and limitations due to emotional aspects [p ​= ​0.024]) by CCR compared to baseline. These outcomes were not improved by CTR (p ​> ​0.05). However, this strategy prevented clinical deterioration in the investigated patients. Although CCR achieved a superior effect on clinical improvement and quality of life, CTR was relevant to stabilize the blood pressure and quality of life of patients with cardiovascular diseases during the period of COVID-19-associated social isolation.

Abstract Patients with post-treatment Lyme disease (PTLD) report negative perceptions of care and significant invalidation from medical professionals. However, the relationship of invalidation to illness severity has not been examined, nor have risk factors for invalidation been identified. This cross-sectional study enrolled 80 patients who met stringent criteria for PTLD. We examined correlations between the Illness Invalidation Inventory and measures of symptom severity, quality of life, and trust in physicians. To study the relationship between invalidation and potential demographic and clinical factors, we generated simple unadjusted and multivariate adjusted linear regression models. We found that higher ‘lack of understanding’ and ‘discounting’ subscale scores of the Illness Invalidation Inventory were significantly positively correlated with higher symptom severity, lower quality of life, and lower trust in physicians. In adjusted linear regression models, older age (lack of understanding: β = − 0.17, p = 0.008, discounting: β = − 0.19, p = 0.001, every 10 years) and male gender (lack of understanding: β = − 0.49, p = 0.016, discounting: β = − 0.51, p = 0.006) were associated with less invalidation. We also identified receiving an alternative diagnosis for PTLD as a mediator in the relationship between gender and invalidation. Based on our findings, we hypothesize that reducing invalidation within the clinical encounter could positively affect illness burden and quality of life for patients with PTLD.

Abstract Background Cachexia is prevalent in gastrointestinal cancers and worsens patient outcomes and chemotherapy compliance. We examined to what extent registered gastrointestinal cancer chemotherapy clinical trials record measures and related symptoms of cachexia as outcomes, and whether these were associated with trial characteristics. Methods Four public trial registries (2012–2022) were accessed for Phase II and/or III randomized controlled pancreatic, gastric, and colorectal cancer chemotherapy trial protocols. Trial outcome measures of overall survival and toxicity/side effects, and those related to cachexia [physical activity, weight/body mass index (BMI), dietary limitations, caloric intake, lean muscle mass] and symptoms (appetite loss, diarrhoea, pain, fatigue/insomnia, constipation, nausea, vomiting, and oral mucositis) were extracted, along with the number and types of performance status and patient‐reported outcomes (PROs) tools. Data were summarized descriptively. Chi‐square tests examined associations between outcomes and trial characteristics (cancer type, trial location, funding source, PROs tools, and commencement year). Statistical significance was set at P

Patients with post-treatment Lyme disease (PTLD) report negative perceptions of care and significant invalidation from medical professionals. However, the relationship of invalidation to illness severity has not been examined, nor have risk factors for invalidation been identified. This cross-sectional study enrolled 80 patients who met stringent criteria for PTLD. We examined correlations between the Illness Invalidation Inventory and measures of symptom severity, quality of life, and trust in physicians. To study the relationship between invalidation and potential demographic and clinical factors, we generated simple unadjusted and multivariate adjusted linear regression models. We found that higher 'lack of understanding' and 'discounting' subscale scores of the Illness Invalidation Inventory were significantly positively correlated with higher symptom severity, lower quality of life, and lower trust in physicians. In adjusted linear regression models, older age (lack of understanding: β = − 0.17, p = 0.008, discounting: β = − 0.19, p = 0.001, every 10 years) and male gender (lack of understanding: β = − 0.49, p = 0.016, discounting: β = − 0.51, p = 0.006) were associated with less invalidation. We also identified receiving an alternative diagnosis for PTLD as a mediator in the relationship between gender and invalidation. Based on our findings, we hypothesize that reducing invalidation within the clinical encounter could positively affect illness burden and quality of life for patients with PTLD. [ABSTRACT FROM AUTHOR]

The purpose of this review is to assess the worldwide clinical utilisation of Glasgow Benefit Inventory (GBI) and New Five-factor Glasgow Benefit Inventory (GBI-5F) for various clinical and scientific objectives, as well as to validate its application in Latvia. Numerous articles indexed in the MedLine Library (Pubmed.gov) were examined, spanning from the initial GBI publication to the present. Various applications of these questionnaires have been investigated across multiple medical specialties, including otolaryngology, ophthalmology, urology, paediatric practice, neuro-surgery, gastroenterology, oncology, and maxillofacial surgery in different countries. The use of the questionnaire in Latvia, following examples from other countries, can aid in assessing factors such as General Health, Support, Quality of Life, Self-Confidence and Social Involvement post-intervention in chronic conditions. This could help compare treatment outcome data both in clinical practice within our country and within the scientific community on an international level. [ABSTRACT FROM AUTHOR]

Low back pain (LBP) is a debilitating phenomenon that significantly impacts quality-of-life (QoL). The PainDETECT questionnaire (PD-Q) is a screening tool aimed at distinguishing nociceptive pain (NoP) and neuropathic pain (NeP) classifications. Associations between these classifications and patient-reported outcome measures (PROMs) and sociodemographic parameters are yet to be established. The study aimed to determine the relationship between NeP as assessed by the PD-Q and pain, disability, QoL, and sociodemographic factors. A retrospective analysis of an ongoing prospectively collected database was conducted involving 512 patients aged >18 years who presented to a tertiary spine clinic for LBP having completed the PainDETECT questionnaire, Oswestry Disability Index (ODI), EuroQol Five-Dimensional (EQ-5D) questionnaire, or answered questions regarding sociodemographic status. The NeP group had a higher mean numerical rating scale (NRS) score (7.96 ± 1.54 vs. 5.76 ± 2.27, p <.001) and lower age (55 ± 15.6 vs. 59 ± 17.8, p <.05) compared to the NoP group. When confounded for NRS, analysis of covariance demonstrated an 89.5% higher total ODI score (p <.001) and 50.5% lower EQ-5D utility score (p <.001) in the NeP compared to NoP group. Smokers and individuals with a no partner marital status were 2.373 (OR = 2.373, 95% CI = 1.319–4.266, p <.01) and 2.384 times (OR = 2.384, 95% CI = 1.390–4.092, p <.01) more likely to have NeP compared to NoP, respectively. Patients with NeP were also of lower income class compared to patients with NoP (Z = −2.45, p <.05). NeP was associated with higher levels of disability and lower QoL. Smokers, individuals with a no partner marital status, and individuals with a lower income class were more likely to suffer NeP rather than NoP. These findings have illuminated a crucial notion: in patients with elevated NRS, the detrimental impact of NeP on patient wellbeing underscores the fundamental need to represent pain on a nociceptive-neuropathic continuum, permitting more accurate differentiation of pain components. [ABSTRACT FROM AUTHOR]

• Transfusion-related challenges for thalassemia patients in India. • High burden of alloimmunization. • The potential risk of Transfusion-transmitted infections. • Need of a collaborative approach to improve thalassemia care. The introduction of regular red blood cell transfusions transformed thalassemia major from a fatal childhood disease into a chronic disorder. Thalassemia is highly prevalent in South Asia, including the Indian subcontinent, and blood transfusion remains the cornerstone of management for these patients. But safe blood transfusions still remain a major problem in India. Difficulties in maintaining adequate blood inventory, a lack of a national blood act, and fragmented blood transfusion services are some of the major contributing factors for the delay in blood supply. In most of the blood centers, alloantibody detection facilities and extended red cell antigen typing are unavailable. Awareness is the key to reducing alloimmunization, which limits the effectiveness of transfusions and the potential availability of blood. Patients with thalassemia are also at high risk of transfusion-transmitted infections unless appropriate blood screening is in place. Hence, many patients remain under-transfused, resulting in decreased health and quality-of-life outcomes. Facilities such as leucoreduction and immunohematological monitoring following a blood transfusion are often lacking in India, especially at the sub-district level. Continuous efforts to raise community awareness, regular training of health-care workers, and proper utilization of available resources are essential to ensuring safe blood transfusions for patients with thalassemia. Access to the new treatments at an affordable cost may reduce the blood transfusion burden for thalassemia patients in India. [ABSTRACT FROM AUTHOR]

Background: Satisfying close relationships are associated with higher levels of life satisfaction throughout the life course. Despite the fundamental role of attachment style in close relationships, few studies have longitudinally examined the association between attachment style in young adults with later life satisfaction. Method: Data from 2,088 participants in a longitudinal birth cohort study were examined. At 21-years, participants completed the Attachment Style Questionnaire which comprises five domains reflective of internal working models of interpersonal relationships and attachment style: confidence (security), discomfort with closeness and relationships as secondary (avoidance), need for approval and preoccupation with relationships (anxiety). At 30-years, participants self-reported their overall life satisfaction. Linear regression was used to longitudinally examine the association between attachment domains at 21-years and life satisfaction at age 30. Results: After adjustments, confidence was positively associated with life satisfaction (β = 0.41, 95% CI 0.25–0.56, p < 0.001), while need for approval was negatively associated with life satisfaction (β = -0.17, 95% CI -0.30 – -0.04, p < 0.001). Low income at 21, caring for a child by age 21, and leaving the parental home at 16-years or under were negatively associated with life satisfaction at 30-years. Conclusion: Young adult attachment style is associated with later life satisfaction, particularly through confidence in self and others. Promoting positive internal working models of interpersonal relationships and fostering greater confidence in self and others in adolescence may be an effective strategy for improving life satisfaction later in life. [ABSTRACT FROM AUTHOR]

Objective: To determine differences in post‐treatment QoL across treatment settings in patients receiving adjuvant radiation therapy for head and neck squamous cell carcinoma (HNSCC). Methods: This was a prospective observational cohort study of patients with HNSCC initially evaluated in a head and neck surgical oncologic and reconstructive clinic at an academic medical center (AMC). Participants were enrolled prior to treatment in a prospective registry collecting demographic, social, and clinical data. Physical and social–emotional QoL (phys‐QoL and soc‐QoL, respectively) was measured using the University of Washington‐QoL questionnaire at pre‐treatment and post‐treatment visits. Results: A cohort of 177 patients, primarily male and White with an average age of 61.2 ± 11.2 years, met inclusion criteria. Most patients presented with oral cavity tumors (n = 132, 74.6%), had non‐HPV‐mediated disease (n = 97, 61.8%), and were classified as Stage IVa (n = 72, 42.8%). After controlling for covariates, patients treated at community medical centers (CMCs) reported a 7.15‐point lower phys‐QoL compared with those treated at AMCs (95% CI: −13.96 to −0.35, p = 0.040) up to 12 months post‐treatment. Additionally, patients who were treated at CMCs had a 5.77‐point (−11.86–0.31, p = 0.063) lower soc‐QoL score compared with those treated at an AMC, which was not statistically significant. Conclusion: This study revealed that HNSCC patients treated with radiation at AMCs reported significantly greater phys‐QoL in their first‐year post‐treatment compared to those treated at CMCs, but soc‐QoL did not differ significantly. Further observational studies are needed to explore potential factors, including treatment planning and cancer resource engagement, behind disparities between AMCs and CMCs. Level of Evidence: 3 Laryngoscope, 134:3645–3655, 2024 [ABSTRACT FROM AUTHOR]

Background: Quality-of-life (QOL) is important for cancer patients with poor prognosis. However, conducting a QOL survey with patients is difficult. Therefore, we conducted a QOL survey with physicians. Specifically, this study aimed to clarify how physicians assess QOL in patients with pancreatic cancer by conducting a survey and comparing the results between physicians and the general public. Methods: A survey was conducted by interviewing physicians administering chemotherapy to patients for recurrent/metastatic pancreatic cancer. This method is similar to that of the QOL survey conducted among the general public. Responses were evaluated using the composite time trade-off (cTTO) and the visual analog scale (VAS) for 11 pancreatic cancer status scenarios (survey scenarios). These scenarios consisted of patients’ health states as well as the types and grades of adverse events (AEs). Health status was classified into two categories: Stable disease (SD) and Progressive disease (PD). In addition, we conducted a survey using the EuroQol 5 Dimensions 5-Level (EQ-5D-5l) as reference values. Results: Twenty physicians responded to the survey. SD had the highest mean QOL value for both assessment methods (Physicians: 0.78, General public: 0.63), whereas PD had the lowest mean QOL value (Physicians: 0.15, General public: −0.12). The physicians assigned higher QOL values on both the VAS and cTTO than the general public did in all survey scenarios. Conclusions: The QOL values obtained from physicians were consistent with the degree of status in any assessment scenarios. Based on the differences in the QOL survey results between physicians and the general public, physicians tended to assign higher QOL values than the general public in cTTO and VAS assessments. [ABSTRACT FROM AUTHOR]

Objectives We aimed to identify determinants of health-related quality of life (HRQoL) and global functioning and health (GH) in axial SpA (axSpA), peripheral SpA (pSpA) and (PsA). Methods The ASAS-perSpA study data were analysed. Models for the three patient groups were run separately to explore factors associated with HRQoL and GH, assessed by EQ-5D and ASAS-HI, respectively. Results The analyses included 4185 patients: 2719 with axSpA, 433 with pSpA, and 1033 with PsA. In axSpA, disease activity (β = –0.061), physical function (β = –0.041), female sex (β = –0.019) and fibromyalgia (FM) (β = –0.068) were associated with worse HRQoL; age (β = 0.001) and university education (β = 0.014) were associated with better HRQoL. In pSpA, disease activity (β = –0.04) and physical function (β = –0.054) were associated with worse HRQoL. In PsA, disease activity (β = –0.045), physical function (β = –0.053), axial disease (β = –0.041) and female sex (β = –0.028) were associated with worse HRQoL. In axSpA, disease activity (β = 0.889), physical function (β = 0.887), peripheral disease (β = 0.564), female sex (β = 0.812) and FM (β = 1.639) were associated with worse GH; age (β = –0.013) and university education (β = –0.274) were associated with better GH. In pSpA, physical function (β = 1.142) and female sex (β = 1.060) were associated with worse GH; university education (β = –0.611) was associated with better GH. In PsA, disease activity (β = 0.703), physical function (β = 1.025), axial involvement (β = 0.659), female sex (β = 0.924) and FM (β = 1.387) were associated with worse GH; age (β = –0.024) and university education (β = –0.856) were associated with better GH. Conclusion Disease activity and physical function are major HRQoL and GH determinants across SpA types, and clinical characteristics and sociodemographic factors play an important role, highlighting the importance of a holistic approach for individual patients. [ABSTRACT FROM AUTHOR]

This article discusses the use of inhaled corticosteroids (ICS) as a treatment for stable chronic obstructive pulmonary disease (COPD). The article states that ICS alone can reduce the rate of COPD exacerbations and slow the decline in lung function. However, the potential benefits of ICS must be weighed against the risk of adverse events and the lack of effect on mortality. The article also mentions that ICS should be used in combination with long-acting bronchodilators, rather than as monotherapy. The authors suggest that further research is needed to identify factors that predict individual response to ICS and to reduce the risk of adverse events. [Extracted from the article]

Background: This is the largest study in North America investigating olfactory outcomes after pituitary surgery to date. Objective: Characterize factors associated with subjective olfactory dysfunction (OD) and worsened sinonasal quality-of-life (QOL) after endoscopic TSA. Methods: Patients undergoing primary TSA for secreting and non-secreting pituitary adenomas between 2017 and 2021 with pre- and post-operative SNOT-22 scores were included. Subjective OD was determined by the smell/taste dysfunction question on the SNOT-22 (smell-SNOT). Results: 159 patients with pre- and post-operative SNOT-22 scores were included. Average total SNOT-22 scores worsened from pre-operative (16.91 ± 16.91) to POM1 (25.15 ± 20.83, P <.001), with no difference from pre-operative (16.40 ± 15.88) to POM6 (16.27 ± 17.92, P =.936) or pre-operative (13.63 ± 13.54) to POM12 (12.60 ± 16.45, P =.651). Average smell-SNOT scores worsened from pre-operative (0.40 ± 1.27) to POM1 (2.09 ± 2.01, P <.001), and pre-operative (0.46 ± 1.29) to POM6 (1.13 ± 2.45, P =.002), with no difference from pre-operative (0.40 ± 1.07) to POM12 (0.71 ± 1.32, P =.100). Female gender had a 0.9-point (95% CI 0.1 to 1.6) P =.021, increase in smell-SNOT at POM1, resolving by POM6 (0.1 [−0.9 to 1.1], P =.800) and POM12 (0.0 [−1.0 to 0.9], P =.942). Septoplasty with tunnel approach had a 1.1 [0.2 to 2.0] out of 5-point (P =.023) increase in smell-SNOT at POM1, resolving by POM6 (0.2 [−1.1 to 1.6], P =.764) and POM12 (0.4 [−0.9 to 1.6], P =.567). Female gender had a 9.5 (4.0 to 15.1)-point (P =.001) increase in SNOT-22 scores at POM1, resolving by POM6 (3.4 [−3.0 to 9.8], P =.292) and POM12 (6.4 [−5.4 to 18.2], P =.276). Intra-operative CSF leak had an 8.6 [2.1 to 15.1]-point (P =.009) increase in SNOT-22 scores at POM1, resolving by POM6 (5.4 [−1.7 to 12.5], P =.135), and POM12 (1.1 [−12.9 to 15.1], P =.873). Conclusion: Changes in subjective olfaction and sinonasal QOL after TSA may be associated with gender, operative approach, and intra-operative CSF leak, resolving 6-12 months post-operatively. [ABSTRACT FROM AUTHOR]

Background: No widely accepted, validated instrument currently exists to measure clinical outcomes in patients who undergo dacryocystorhinostomy (DCR) for treatment of epiphora. Objective: To develop a patient-reported outcome measure applicable to this population. Methods: Psychometric evaluations, consultation with experts, and review of the literature informed item generation of a 12-question questionnaire to incorporate the most relevant symptoms experienced by patients with nasolacrimal duct obstruction. This questionnaire, known as the Tearing Assessment and Rating Scale-12 (TEARS-12), was administered to 32 patients before and after intervention, in the form of endoscopic DCR. Statistical analysis was performed to measure internal consistency, responsiveness, and test-retest reliability. Results: Pre-operative and post-operative TEARS-12 scores (28.2 [standard error (SE) 3.19] vs 11.8 [SE 3.25], respectively, P = 0.001) demonstrated improved patient outcome within 6 weeks following endoscopic DCR. Cronbach's alpha for the questionnaire was 0.90, indicating high overall reliability. Additionally, each question demonstrated internal reliability, with a corrected item-total correlation greater than 0.30. The intraclass correlation between the two pre-operative scores was 0.858 (P < 0.001), indicating high test-retest reliability. Conclusion: TEARS-12 is a statistically valid, easy-to-administer instrument to measure clinical outcomes in patients who undergo endoscopic DCR. [ABSTRACT FROM AUTHOR]

Acute myeloid leukemia (AML) is the most common form of acute leukemia in adults. Rapidly proliferating leukemic cells cause symptoms and increase the risk of infection. While individuals may initially benefit from supportive measures, disease-directed therapy may ultimately be required for symptom management, even at the end of life, although this may also inadvertently increase symptom burden. This unpredictable illness trajectory complicates prognostic uncertainty and the timing of hospice referral, which may prohibit access to palliative therapies and lead to recurrent hospitalizations. However, emerging evidence demonstrates that early palliative care (PC) integration with standard leukemia care results in improved quality of life, psychological outcomes, and greater participation in advance care planning. To orient PC clinicians asked to care for patients with AML, this article highlights 10 salient considerations. [ABSTRACT FROM AUTHOR]

This paper critically engages with how life not worth living (LNWL) and cognate concepts are used in the field of beginning-of-life bioethics as the basis of arguments for morally requiring the application of preimplantation genetic diagnosis (PGD) and/or germline genome editing (GGE). It is argued that an objective conceptualization of LNWL is largely too unreliable in beginning-of-life cases for deriving decisive normative reasons that would constitute a moral duty on the part of intending parents. Subjective frameworks are found to be more suitable to determine LNWL, but they are not accessible in beginning-of-life cases because there is no subject yet. Conceptual and sociopolitical problems are additionally pointed out regarding the common usage of clear case exemplars. The paper concludes that a moral requirement for the usage of PGD and GGE cannot be derived from the conceptual base of LNWL, as strong reasons that can be reliably determined are required to limit reproductive freedom on moral grounds. Educated predictions on prospective well-being might still be useful regarding the determination of moral permissibility of PGD and/or GGE. It is suggested that due to the high significance of subjective experience in the normativity of beginning-of-life bioethics, the discipline is called to more actively realize the inclusion of people with disabilities. This regards for instance research design, citation practices, and language choices to increase the accessibility of societal debates on the reproductive ethics of genetic technologies. [ABSTRACT FROM AUTHOR]

Asthma is an obstructive lung disease with high prevalence. Symptom control in asthma remains poor despite significant advancements in treatment guidelines and inhalational devices. This is often attributed to inadequate patient adherence to the inhaler technique and insufficient education on its long-term use. Through this study, we aimed to assess the impact of reinforcement of proper inhaler technique on asthma symptom control and quality of life. A prospective cohort of 400 asthma patients using dry powder inhalers and metered dose inhalers was recruited in the outpatient clinic of our hospital. At the time of recruitment, the correctness of inhaler technique usage was assessed, and the pre-test Inhaler Technique Score (ITS) was recorded for each patient. Then, a ten-step inhalation technique was taught through demonstration, and the post-test ITS score was recorded again. This was done for each patient at monthly intervals for 3 months. Along with it, two tailored questionnaires, the Asthma Control Test (ACT) and Asthma Quality of Life Questionnaire (AQLQ), were administered at each visit to assess disease control and quality of life. Significant enhancements in inhalation technique were noted from the first to the third visit using the ten-step inhalation usage scores, which improved from 6.91 to 9.87 (out of 10) (p

The article discusses recent initiatives aimed at harmonizing outcomes in food allergy clinical trials and observational research. The initiatives, COFAITH and COMFA, identified common outcomes such as desensitization, sustained unresponsiveness/remission, quality of life, and allergic symptoms. COFAITH focused on immunotherapy trials, while COMFA sought consensus on core outcomes for all food allergy interventions. The article emphasizes the importance of considering patient preferences and cultural influences on food consumption when determining outcomes for clinical trials. It also highlights the need for collaboration between clinicians, researchers, industry, and patient representatives to improve the lives of those managing food allergies. [Extracted from the article]

Background: Exercise is a rehabilitation strategy for patients with breast cancer; however, the optimal type of exercise remains uncertain. This study aimed to compare the effects of five exercise types on the quality of life of patients with breast cancer and provide a basis for their exercise rehabilitation. Methods: As of May 2024, we searched four databases: Embase, PubMed, Web of Science, and Cochrane Library, and included randomized controlled trials that analyzed the effect of exercise on the quality of life of patients with breast cancer. A network meta-analysis was performed using a frequency-based framework. Results: Forty-five papers involving 4092 participants were included. The five types of exercises included were all significant in the direct comparison with the control group, except yoga and mind–body exercises. Aerobic, resistance, and combination exercises were associated with quality of life. However, in indirect comparisons, only mind–body exercise versus resistance exercise had a significant effect. The effect of exercise on the quality of life(total health status) of patients with breast cancer was ranked based on surface under the cumulative ranking curve (SUCRA) values combined with effect sizes as follows: aerobic exercise (SUCRA = 84.1) > combined exercise (SUCRA = 78.8) > resistance exercise (SUCRA = 66.4) > yoga (SUCRA = 39.3) > mind-body exercise (SUCRA = 27.2) > usual care (SUCRA = 4.1). Conclusions: Exercise can rehabilitate the quality of life of patients with breast cancer, and aerobic exercise may be the best type of exercise to improve their quality of life(total health status).

Purpose: Artificial eye users (AEUs) can experience a negative impact on psychological and emotional wellbeing, including reduced social functioning, which may be a consequence of living with one eye removed, and/or of having a prosthetic eye. This may have wider consequences for their families. We aimed to explore what it means to live with a prosthetic eye, for both AEUs and their families—and how any quality of life (QoL) issues impact on their day-to-day functioning. Methods: A subset of AEUs and their family members taking part in a feasibility randomised controlled trial comparing hand-painted to digitally printed artificial eyes were invited for semi-structured interviews. Transcripts were analysed using reflexive thematic analysis. Qualitative results related to trial participation are covered elsewhere. Here, we focus on QoL and day-to-day functioning. Results: Twelve AEUs (eight males) and five spouses (one male) who had worn artificial eyes for 2–65 years took part, and four themes were identified. (1) Impact on day-to-day life: AEUs and their spouses have to adapt to (partial) sight loss, reduced levels of confidence, and social withdrawal. (2) Impact on psychological and emotional wellbeing: distress among AEUs and their spouses can be severe and prolonged, highlight unmet support needs. (3) Challenges with treatment experiences: AEUs experienced negative impact of fragmentation of care and long waiting times. (4) Worries about the future: AEUs mentioned fragility of remaining sight, and concerns around potential need for further treatment. Conclusion: Patients and their family members experience negative impact of being an AEU on their everyday lives and quality of life. There is a potential role for psychosocial support services in supporting AEUs and their families even long after eye loss. [ABSTRACT FROM AUTHOR]

The goal of palliative care (PC) is to improve the quality of life (QoL) of patients with life-limiting illnesses as well as their families. Ideally, PC is integrated early in the course of life-limiting illnesses. Less attention has been paid to the need for early PC for family caregivers (FCs) in lower-income settings. This observational cross-sectional study was conducted to explore the burden experienced by FCs of newly diagnosed incurable cancer patients in Egypt and characterize its relation to depression and QoL. Ninety-five adult FCs of adult patients with newly diagnosed incurable cancer completed the 22-item Zarit Burden Interview (ZBI-22), Patient Health Questionnaire (PHQ-9), and Short Form 12 (SF-12) to assess caregiving burden, depression, and QoL among FCs, respectively. The median (IQR) ZBI-22 score was 17(11–24) and 34% of FCs had significant burden (ZBI-22 score > 20). Assistance with late loss activities of daily living and availability for longer caregiving duration were associated significantly with higher caregiving burdens (P = 0.004 and 0.047, respectively). FCs with significant burden had significantly higher PHQ-9 scores (P = 0.0003). There was a significant negative correlation between ZBI-22 scores and the bodily pain, general health, mental health, physical function, role emotional, and social function subscales/items of SF-12. A substantial proportion of Egyptian FCs of incurable cancer patients experience significant burden early in the course of the disease. This burden is associated with depressive symptoms and worse QoL dimensions, physical, psychological, and social. In a lower-income setting, early PC interventions for FCs of incurable cancer patients are needed. [ABSTRACT FROM AUTHOR]

Despite the challenges of providing burn care throughout the 2.5MKm2 jurisdiction of Western Australia, early intervention after injury remains a key premise of the multidisciplinary model of care applied by the State Adult Burn Unit (SABU) team. In particular, contemporary guidelines support the facilitation of early ambulation after lower limb burn and skin grafting. Thus, this study aimed to evaluate the association between the timing of ambulation after burn and surgery on quality of life (QoL) outcomes. Data from 1707 lower limb burn patients aged ≥ 18, admitted to the SABU between February 2011- December 2019, were included. Self-reported QoL longitudinal outcomes were assessed using the Short Form 36 and Burn Specific Health Scale Brief. Three recovery trajectories were defined according to their QoL outcome responses, mapped out to one year. Early ambulation was defined as occurring within 48 h of acute burn or surgery, as per SABU routine practice. Early ambulation was shown to have a positive association to the higher QoL trajectory group (>75% of cohort), though not statistically significant for the Physical Component (PCS) and Mental health Component (MCS) summary scores of the SF36; however, ambulation pathway was associated with adjusted long-term BSHS-B QoL outcomes. The least favorable trajectory of long-term recovery of the physical aspects of QoL was seen in those with higher TBSA and complications and increasing age and comorbidities. In contrast, the mental health components of QoL were robust to all those factors, apart from pre-existing comorbidities. Early ambulation after lower limb burn, and surgery, was positively associated with early and long-term QoL outcomes. Recovery trajectory is strongly indicated by where the patient journey begins after early acute care. The optimal physical QoL recovery trajectory was shared by those who were younger with reduced TBSA; complications; and, comorbidities whereas the mental health QoL trajectories were only impacted by comorbidities. • Early ambulation was independently and positively associated with QoL recovery. • > 81% of adults with lower limb burn and, or surgery achieved ambulation within 48h. • 75% of early ambulation pathway patients, followed the optimal QoL trajectory. • Trajectory analysis summarises clinical profiles and longitudinal recovery pathways. [ABSTRACT FROM AUTHOR]

As innovations in the field of vascular composite allotransplantation (VCA) progress, whole-eye transplantation (WET) is poised to transition from non-human mammalian models to living human recipients. Present treatment options for vision loss are generally considered suboptimal, and attendant concerns ranging from aesthetics and prosthesis maintenance to social stigma may be mitigated by WET. Potential benefits to WET recipients may also include partial vision restoration, psychosocial benefits related to identity and social integration, improvements in physical comfort and function, and reduced surgical risk associated with a biologic eye compared to a prosthesis. Perioperative and postoperative risks of WET are expected to be comparable to those of facial transplantation (FT), and may be similarly mitigated by immunosuppressive protocols, adequate psychosocial support, and a thorough selection process for both the recipient and donor. To minimize the risks associated with immunosuppressive medications, the first attempts in human recipients will likely be performed in conjunction with a FT. If first-in-human attempts at combined FT-WET prove successful and the biologic eye survives, this opens the door for further advancement in the field of vision restoration by means of a viable surgical option. This analysis integrates recent innovations in WET research with the existing discourse on the ethics of surgical innovation and offers preliminary guidance to VCA programs considering undertaking WET in human recipients. [ABSTRACT FROM AUTHOR]

Aims Spontaneous coronary artery dissection (SCAD) is an under-recognized cause of myocardial infarction. We aimed to investigate SCAD survivors' perceptions of their quality-of-care and its relationship to quality-of-life. Methods and results An anonymous survey was distributed online to SCAD survivors involved in Australian SCAD support groups, with 172 (95.3% female, mean age 52.6 ± 9.2 years) participants in the study. The survey involved assessment of quality-of-life using a standardized questionnaire (EQ-5DTM-3L). Respondents rated the quality-of-care received during their hospital admission for SCAD with a median of 8/10 [interquartile range (IQR) 7–10]. Respondents ≤ 50 years vs. >50 years were more likely to perceive that their symptoms were not treated seriously as a myocardial infarction (χ2 = 4.127, df = 1, P < 0.05). Participants rated clinician's knowledge of SCAD with a median of 4/10 (IQR 2–8) and 7/10 (IQR 3–9) for Emergency and Cardiology clinicians, respectively (P < 0.05). The internet was the most selected source (45.4%) of useful SCAD information. The mean EQ-5DTM summary index was 0.79 (population norm 0.87). A total of 47.2% of respondents reported a mental health condition diagnosis, with 36% of these diagnosed after their admission with SCAD. Quality-of-life was significantly associated with perceived quality-of-care: EQ-5DTM index/(1-EQ-5DTM index) increased by 13% for each unit increase in quality-of-care after adjusting for age and comorbidities (P < 0.001). Conclusion While SCAD survivors rated their overall hospital care highly, healthcare providers' knowledge of SCAD was perceived to be poor, and the most common source of SCAD information was the internet. Mental health conditions were common, and a significant association was observed between perceived quality-of-care and SCAD survivors' quality-of-life. [ABSTRACT FROM AUTHOR]

Background Pre-diabetes (PD) contributes importantly to the disease burden worldwide and is a precursor to stroke, cardiovascular diseases, as well as type-2 diabetes mellitus. Objective In this project, the efficacy of individualized homeopathic medicines (IHMs) was explored against placebos in the treatment of PD. Methods A 6-month, double-blind, randomized, placebo-controlled trial was conducted at the outpatient departments of a homeopathic medical college and hospital in India. Sixty participants with PD were randomized to receive either IHMs (n = 30) or identical-looking placebos (n = 30). Concomitant care measures were advised to both groups of participants in terms of dietary advice, yoga, meditation and exercise. The primary outcome measures were fasting blood sugar (FBS) and the oral glucose tolerance test (OGTT); the secondary outcome was the Diabetes Symptom Checklist-Revised (DSC-R) score. All the outcomes were measured at baseline and after 3 and 6 months of treatment. Inter-group differences and effect sizes (Cohen's d) were calculated using two-way repeated measures analysis of variance models after adjusting baseline differences using analysis of co-variance on the intention-to-treat data. Results Between-group differences for FBS were statistically significant, favoring IHMs against placebos (F1,58 = 7.798, p = 0.007), but not for OGTT (F1,58 = 1.691, p = 0.199). The secondary outcome, DSC-R total score, favoring IHMs significantly compared with placebos (F1,58 = 15.752, p < 0.001). Calcarea Carbonicum , Thuja occidentalis and Sulphur were the most frequently prescribed medicines. No harm or serious adverse events were recorded from either of the participant groups. Conclusion IHMs produced significantly better results than placebos in FBS and in DSC-R scores but not in OGTT. Independent replications with larger sample sizes are warranted to substantiate the findings. Trial registration CTRI/2019/10/021711 [ABSTRACT FROM AUTHOR]

To systematically review the literature and summarize the health-related quality-of-life (HRQoL) of patients undergoing treatment for mucopolysaccharidoses (MPS), a rare, hereditary lysosomal storage disorder. A systematic review was performed in accordance with PRISMA guidelines to identify research studies that describe the humanistic burden of MPS. A comprehensive literature search was conducted in EMBASE, MEDLINE, and eligible conferences were screened to include applicable abstracts. Of 870 identified articles, 15 studies reported the HRQoL burden of patients with MPS undergoing or with a history of ERT and/or HSCT. These studies include patients of MPS I (n = 2), MPS II (n = 4), MPS IV (n = 6), MPS VI (n = 1), and subtype not mentioned (n = 2). Although the quality-of-life of MPS patients is influenced by time of diagnosis, pain, cognitive involvement, severity of disease, mobility, dependence, and time of treatment initiation, the HRQoL scores of MPS patients across all the scales were below the median reference population scores across all dimensions. This is seen in comparison to healthy participants but also in comparison to patients with other chronic illnesses. The multi-organ involvement, neurological impairment, pain, and morbidity associated with the condition not only affects activity of daily living but also affects social functioning, emotional status, employment status among adults, and school functioning among children. This systematic literature review revealed the substantial humanistic burden of individuals affected by MPS as well as caregivers. Significant variation in HRQoL scores was observed, however studies indicate that the quality-of-life of MPS patients is influenced primarily by severity of disease (MPS type and phenotype), and then by time of diagnosis, pain, cognitive involvement, mobility, dependence, and time of treatment initiation. Further studies are needed to assess the global humanistic burden of MPS, particularly in MPS III, VI, VII, and IX subtypes, in adults, and for a longer follow-up period. Considering the vast array of HRQoL assessment tools available and used in this study, researchers should also consider using scales with condition-specific measures to ensure appropriate estimates of effectiveness. [ABSTRACT FROM AUTHOR]

Introduction: In the United Kingdom, fractures of the cervical dens process in older and/or frail patients are usually managed nonsurgically in a hard collar. However, hard collars can lead to complications and this management approach is now being questioned, with growing interest in maximising patients' short‐term quality‐of‐life. It is vital that patients' perspectives are considered; yet, there is a dearth of literature examining the aspect. To help inform wider decision‐making about use of collar/no collar management of dens fractures in older/frail people, we explored older/frail people's experience of the two management approaches and how they affected their perceived quality‐of‐life. Methods: We interviewed older and/or frail adults with a recent dens fracture (aged ≥65 years or with a clinical frailty score of ≥5) or their caregiver. Participants were recruited from both arms of a clinical trial comparing management using a hard collar for 12 weeks (SM) with early removal of the collar (ERC) and were interviewed following randomisation and again, 12–16 weeks later. Data were analysed using a framework approach. Results: Both participant groups (SM/ERC) reported substantial, negative quality‐of‐life (QoL) experiences, with the fall itself and lack of access to care services and information being frequent major contributory factors. Many negative experiences cut across both participant groups, including pain, fatigue, diminished autonomy and reduced involvement in personally meaningful activities. However, we identified some subtle, yet discernible, ways in which using SM/ERC reinforced or alleviated (negative) QoL impacts, with the perceived benefits/burdens to using SM/ERC varying between different individuals. Conclusion: Study findings can be used to support informed decision‐making about SM/ERC management of dens fractures in older/frail patients. Patient or Public Contribution: Public and patient involvement contributors were involved in the study design, development of interview topic guides and interpretation of study findings. [ABSTRACT FROM AUTHOR]

Study Design. Multicenter, prospective cohort study. Objective. The current study aimed to identify the incidence of residual paresthesias after surgery for degenerative cervical myelopathy (DCM), and to demonstrate the impact of these symptoms on clinical outcomes and patient satisfaction. Summary of background data. Surgery for DCM aims to improve and/or prevent further deterioration of physical function and quality-of-life (QOL) in the setting of DCM. However, patients are often not satisfied with their treatment for myelopathy when they have severe residual paresthesias, even when physical function and QOL are improved after surgery. Materials and Methods. The authors included 187 patients who underwent laminoplasty for DCM. All patients were divided into two groups based on their visual analog scale score for paresthesia of the upper extremities at one year postoperatively (> 40 vs. ≤ 40 mm). Preoperative factors, changes in clinical scores and radiographic factors, and satisfaction scales at one year postoperatively were compared between groups. The authors used mixed-effect linear and logistic regression modeling to adjust for confounders. Results. Overall, 86 of 187 patients had severe residual paresthesia at one year postoperatively. Preoperative patient-oriented pain scale scores were significantly associated with postoperative residual paresthesia (P=0.032). A mixed-effect model demonstrated that patients with severe postoperative residual paresthesia showed significantly smaller improvements in QOL (P=0.046) and myelopathy (P=0.037) than patients with no/mild residual paresthesia. Logistic regression analysis identified that residual paresthesia was significantly associated with lower treatment satisfaction, independent of improvements in myelopathy and QOL (adjusted odds ratio: 2.5, P=0.010). Conclusion. In total, 45% of patients with DCM demonstrated severe residual paresthesia at one year postoperatively. These patients showed significantly worse treatment satisfaction, even after accounting for improvements in myelopathy and QOL. As such, in patients who experience higher preoperative pain, multidisciplinary approaches for residual paresthesia, including medications for neuropathic pain, might lead to greater clinical satisfaction. [ABSTRACT FROM AUTHOR]

Background: Psoriatic disease (PsD), including plaque psoriasis (PsO) and psoriatic arthritis (PsA), comprises a wide spectrum of manifestations and significantly impacts quality-of-life (QoL). Here, we assessed patients' understanding of PsO and PsA as a systemic disease, its impact on their physical and emotional well-being, and patients' experiences with healthcare professionals for shared treatment decision-making. Materials and Methods: The Global Psoriatic Disease and Beyond Survey was a cross-sectional, qualitative, online survey conducted on patients with moderate-to-severe PsO with/without concomitant PsA. This analysis reports findings from Indian patients. Results: Of the 261 surveyed patients, 27% with PsO reported concomitant PsA, of whom 89% reported PsA severity as moderately or highly active. Overall, 92% had heard the term "PsD," and 90% knew their condition was a systemic disease. Few were aware of PsD manifestations (palmoplantar psoriasis, 49%; nail psoriasis, 43%; axial symptoms, 40%; PsA, 34%) and comorbidities (cardiovascular disease, 33%; obesity, 30%; diabetes, 28%). Eighty-nine percent of patients indicated their skin problems had a "very-large" to "extreme-large" impact on QoL. Ninety-seven percent of patients experienced discrimination and stigmatization from others. Eighty-one percent of patients were not involved in deciding treatment goals. Few (PsO, 6%; PsA, 9%) patients were dissatisfied with current treatment; ≥50% patients reported incomplete relief of skin symptoms (PsO) and joint symptoms (PsA) as the reason for dissatisfaction. Conclusion: Lack of awareness of the manifestations and comorbidities associated with PsD and poor QoL highlights the need for patient education, shared treatment decision-making, and a multidimensional approach to PsD management in India. [ABSTRACT FROM AUTHOR]

Background: Hereditary angioedema (HAE) is a potentially fatal disease characterized by unpredictable, recurrent, often disabling swelling attacks. In a randomized phase 2 study, donidalorsen reduced HAE attack frequency and improved patient quality‐of‐life (ISIS721744‐CS2, NCT04030598). We report the 2‐year interim analysis of the phase 2 open‐label extension (OLE) study (ISIS 721744‐CS3, NCT04307381). Methods: In the OLE, the on‐treatment study period consisted of fixed (weeks 1–13, donidalorsen 80 mg subcutaneously every 4 weeks [Q4W]) and flexible (weeks 17–105, donidalorsen 80 mg Q4W, 80 mg every 8 weeks [Q8W], or 100 mg Q4W) dosing periods. The primary outcome was incidence and severity of treatment‐emergent adverse events (TEAEs). The secondary outcomes included efficacy, pharmacodynamic, and quality‐of‐life assessments. Results: Seventeen patients continued in the OLE study. No serious TEAEs or TEAEs leading to treatment discontinuation were reported. Mean monthly HAE attack rate was 96% lower than the study run‐in baseline rate (mean, 0.06/month; 95% confidence interval [CI], 0.02–0.10; median, 0.04 on‐treatment vs. mean, 2.70/month; 95% CI, 1.94–3.46; median, 2.29 at baseline). Mean monthly attack rate for Q8W dosing (n = 8) was 0.29 (range, 0.0–1.7; 95% CI, −0.21 to 0.79; median, 0.00). Mean plasma prekallikrein and D‐dimer concentrations decreased, and Angioedema Quality of Life Questionnaire total score improved from baseline to week 105 with donidalorsen. Conclusion: The 2‐year interim results of this phase 2 OLE study of donidalorsen in patients with HAE demonstrated no new safety signals; donidalorsen was well tolerated. There was durable efficacy with a 96% reduction in HAE attacks. [ABSTRACT FROM AUTHOR]

The authors introduce meta-analysis as a compelling tool for macromarketing research in an increasingly complex and data-driven world, and share an example of its application. They synthesize and generalize empirical findings on the relationships between marketing systems (MS) and quality-of-life (QOL), two concepts integral to macromarketing. Results indicate dimensions of MS are positively associated with QOL, suggesting that marketing systems enhance consumer well-being across contexts and metrics. The promotion dimension of MS has the highest correlation with QOL; the strongest positive MS-QOL relationship was estimated for personal health. Measurement, cultural, and socioeconomic factors that affect the strength of MS-QOL relationships also were assessed. Results suggest the association between MS and QOL is stronger in studies based on primary/subjective measures of QOL constructs, in samples drawn from developed economies, and in more indulgent, uncertainty-tolerant, and long-term-oriented cultures. Implications for theory, policy, practice, and opportunities for further research are discussed. [ABSTRACT FROM AUTHOR]

Summary: Background: DNA methylation integrates environmental signals with transcriptional programs. COVID-19 infection induces changes in the host methylome. While post-acute sequelae of COVID-19 (PASC) is a long-term complication of acute illness, its association with DNA methylation is unknown. No universal blood marker of PASC, superseding single organ dysfunctions, has yet been identified. Methods: In this single centre prospective cohort study, PASC, post-COVID without PASC, and healthy participants were enrolled to investigate their symptoms association with peripheral blood DNA methylation data generated with state-of-the-art whole genome sequencing. PASC-induced quality-of-life deterioration was scored with a validated instrument, SF-36. Analyses were conducted to identify potential functional roles of differentially methylated loci, and machine learning algorithms were used to resolve PASC severity. Findings: 103 patients with PASC (22.3% male, 77.7% female), 15 patients with previous COVID-19 infection but no PASC (40.0% male, 60.0% female), and 27 healthy volunteers (48.1% male, 51.9% female) were enrolled. Whole genome methylation sequencing revealed 39 differentially methylated regions (DMRs) specific to PASC, each harbouring an average of 15 consecutive positions, that differentiate patients with PASC from the two control groups. Motif analyses of PASC-regulated DMRs identify binding domains for transcription factors regulating circadian rhythm and others. Some DMRs annotated to protein coding genes were associated with changes of RNA expression. Machine learning support vector algorithm and random forest hierarchical clustering reveal 28 unique differentially methylated positions (DMPs) in the genome discriminating patients with better and worse quality of life. Interpretation: Blood DNA methylation levels identify PASC, stratify PASC severity, and suggest that DNA motifs are targeted by circadian rhythm-regulating pathways in PASC. Funding: This project has been funded by the following agencies: NIH-AI173035 (A. Jaitovich and R. Alisch); and NIH-AG066179 (R. Alisch).

Background. Vasoactive drugs are considered an important therapeutic tool in managing phlebolymphologic disease. The current study was performed to evaluate the results of a high-dose diosmin-based combination (Venoplant 2g) in symptomatic patients with chronic venous disease (CVD), treated with endovascular venous surgery, regarding the efficacy of this treatment and the clinical signs and patients’ compliance. Methods: We identified, between April 2022 and March 2023, 50 patients with symptomatic CVD who underwent endovenous ablation and additionally were administered high-dose micronized diosmin. Parameters analyzed in the pre- and post-operative period were the venous clinical severity score (VCSS), the calf circumference, and a VEINES-QOL/Sym questionnaire. Treatment efficacy was assessed in post-operative follow-ups at 1 month and 2 months. Results: Quality-of-life analysis showed a significant improvement between t1 and t2 in both tests administered (VEINES-QOL/Sym: 55.2 ± 2.9, 39.2 ± 12.3, p: 0.001) (VCSS: 6.6 ± 1, 5.1 ± 0.7, p: 0.001). At the secondary endpoint, the results maintained the same improvement trend. Calf circumference was significantly reduced between t1 and t3 (41.7 ± 5.1, 38.3 ± 3.4, p: 0.001). Conclusion: High-dose diosmin, combined with sweet clover 320 mg, Centella asiatica 40 mg, and Vitamin C 200 mg, in patients treated with endovenous ablation, can be significantly effective in terms of clinical results in treating superficial venous disease. A patient’s calf circumference was also found to have decreased considerably during follow-up. No adverse effects have been recorded to date.

Background: Psoriatic disease (PsD), including plaque psoriasis (PsO) and psoriatic arthritis (PsA), comprises a wide spectrum of manifestations and significantly impacts quality-of-life (QoL). Here, we assessed patients' understanding of PsO and PsA as a systemic disease, its impact on their physical and emotional well-being, and patients' experiences with healthcare professionals for shared treatment decision-making. Materials and Methods: The Global Psoriatic Disease and Beyond Survey was a cross-sectional, qualitative, online survey conducted on patients with moderate-to-severe PsO with/without concomitant PsA. This analysis reports findings from Indian patients. Results: Of the 261 surveyed patients, 27% with PsO reported concomitant PsA, of whom 89% reported PsA severity as moderately or highly active. Overall, 92% had heard the term “PsD,” and 90% knew their condition was a systemic disease. Few were aware of PsD manifestations (palmoplantar psoriasis, 49%; nail psoriasis, 43%; axial symptoms, 40%; PsA, 34%) and comorbidities (cardiovascular disease, 33%; obesity, 30%; diabetes, 28%). Eighty-nine percent of patients indicated their skin problems had a “very-large” to “extreme-large” impact on QoL. Ninety-seven percent of patients experienced discrimination and stigmatization from others. Eighty-one percent of patients were not involved in deciding treatment goals. Few (PsO, 6%; PsA, 9%) patients were dissatisfied with current treatment; ≥50% patients reported incomplete relief of skin symptoms (PsO) and joint symptoms (PsA) as the reason for dissatisfaction. Conclusion: Lack of awareness of the manifestations and comorbidities associated with PsD and poor QoL highlights the need for patient education, shared treatment decision-making, and a multidimensional approach to PsD management in India.

Living with an inflammatory bowel disease (IBD), while also navigating the demands of adolescence, may present a challenge for the quality of life (QoL) of adolescents. The current study examined the direct and indirect associations of the stressor (illness severity), cognitive appraisal (illness perception), personal (self-efficacy, positive affect, social support) and family coping resources (economic situation, family functioning) with adolescents' QoL. This cross-sectional study was conducted in Israel. Participants were 74 adolescents (44 boys, 30 girls; aged 11–18 years old) living with IBD, who completed a self-report questionnaire during a clinic follow-up visit. Illness severity was not directly associated with QoL, and no mediating effects through illness perception or coping resources were found; however, social support moderated the association between illness severity and QoL. Additionally, illness perception had the highest direct contribution to QoL: adolescents who perceived their illness as a threat showed poorer QoL. This association was also moderated by social support. Social workers in multidisciplinary healthcare teams may contribute to the improvement of QoL among adolescents with IBD by conducting regular QoL screenings, encouraging adolescents to re-frame their perceptions of their illness, and fostering the receipt of social support using individual or child-parent education sessions and CBT interventions. [ABSTRACT FROM AUTHOR]

Introduction: Pediatric heart transplant patients are routinely followed in dermatology clinics due to elevated risk of cutaneous malignancy. However, transplant patients may experience other, non‐cancer‐related dermatologic conditions including skin infections, inflammatory diseases, and drug eruptions that can cause significant medical and psychosocial comorbidity. Methods: A retrospective chart review of all pediatric heart transplant patients at Mayo Clinic Children's Center in Rochester, MN, was performed to determine the prevalence and spectrum of non‐cancer dermatologic conditions. Statistical analysis was conducted to look for associations between episodes of rejection and skin condition development. Results: Of the 65 patients who received heart transplants under the age of 18 and were followed at Mayo Clinic, 69% (N = 45) were diagnosed with at least one skin condition between transplant and the time of most recent follow‐up. Sixty‐two percent (N = 40) of patients were diagnosed with an inflammatory skin condition (most commonly acne and atopic dermatitis), 45% (N = 29) with an infectious skin condition (most commonly warts and dermatophyte infection), and 32% (N = 21) with a drug eruption (most commonly unspecified rash and urticaria). No association was found between presence of skin disease and number of rejection episodes. Conclusions: Non‐cancer dermatologic conditions are prevalent within pediatric heart transplant recipients and may directly impact their medical needs and quality of life. Dermatologist involvement in the care of post‐transplant pediatric patients is important, not only for cancer screening but also for diagnosis and treatment of common infectious and inflammatory skin conditions. [ABSTRACT FROM AUTHOR]

Aim: End‐stage kidney disease (ESKD) is increasingly becoming a healthcare concern in New Zealand and haemodialysis remains the most common modality of treatment. Frailty and health‐related quality of life (HRQOL) are established predictors of prognosis and have already been shown to be poor in the dialyzing population. Existing data show correlation between these measures in the ESKD population, however there is little evidence for those on haemodialysis specifically. Our study aimed to assess for a correlation between frailty and HRQOL in the haemodialysis population at Palmerston North Hospital, and to assess for any differences in frailty and HRQOL scores between indigenous Māori and non‐Māori subgroups. Methods: A cross‐sectional study was conducted involving 93 in‐centre haemodialysis patients from Palmerston North Hospital, New Zealand. Baseline demographic data was measured alongside frailty and HRQOL scores, which were measured using the Kidney Disease Quality of Life tool (KDQOL‐36) and the Edmonton Frail Scale. Results: A statistically significant negative correlation was observed between frailty and all aspects of HRQOL (p <.05), with the strongest correlation observed between frailty and the physical component (r = −.64, p = <.001). Independent samples t‐test showed no statistically significant difference between scores for Māori and non‐Māori in frailty (M = 7.4, SD = 3.3 vs. M = 6.8, SD = 3.2; t (91) = −0.92, p =.80), or HRQOL (p values >.05 in all components). Conclusion: A negative correlation was observed between frailty and HRQOL. This information can be beneficial in guiding discussions around treatment modality and for future patients and useful in enabling better predictions of prognosis. No statistically significant differences in frailty and HRQOL scores were observed between Māori and non‐Māori groups, however the generalizability of this finding is limited due to the insufficient size of the study population. Summary at a glance: This prospective study aims to assess for a correlation between frailty status and health‐related quality of life in patients on Haemodialysis in New Zealand, as well as identify any differences in these measures between indigenous Māori and non‐Māori subgroups. [ABSTRACT FROM AUTHOR]

STUDY QUESTION What are the outcomes regarding health-related quality-of-life, mood, and marital relationship of recipients and donors 5 years after uterus transplantation (UTx) and uterus donation? SUMMARY ANSWER Both recipients and donors generally demonstrated long-term stability regarding psychosocial outcomes but with negative deviations associated with unsuccessful outcomes. WHAT IS KNOWN ALREADY UTx is the first infertility treatment for women with absolute uterine factor infertility. The procedure can be performed with either a uterus donation from a live donor (LD), typically a close relative, or from a deceased, multi-organ donor. There are many potential stressful events over several years after UTx both for recipients and for LDs and these events may have impacts on quality-of-life and mental well-being. STUDY DESIGN, SIZE, DURATION This, prospective observational cohort study includes the nine recipients and LDs of the first human UTx trial. They were assessed in 2017–2018 by questionnaires 5 years after UTx. PARTICIPANTS/MATERIALS, SETTING, METHODS The nine recipients (ages 32–43 years) and their respective LDs (ages 44–67 years) were either related (n = 8) or friends (n = 1). Eight recipients had congenital uterine absence and one was hysterectomized due to cervical cancer. For two recipients, UTx resulted in early graft failures, while six of the other seven recipients gave birth to a total of eight babies over the following 5 years. Physical and mental component summaries of health-related quality-of-life were measured with the SF-36 questionnaire. Mood was assessed by the Hospital Anxiety and Depression Scale. Relationship with partner was measured with the Dyadic Adjustment Scale. Comparisons were made between the values after 5 years and the values before uterus donation/transplantation. MAIN RESULTS AND THE ROLE OF CHANCE Five years after primary UTx, the majority of recipients scored above the predicted value of the general population on quality-of-life, except for two women, one of whom had a viable graft but no live birth and one recipient who was strained by quality-of-life changes, possibly related to parenthood transitions. Regarding mood, only one value (anxiety) was above the threshold for further clinical assessment. Recipients showed declining satisfaction with their marital relationships, but all reported scores above the 'at risk for divorce' threshold at the time of the final assessment in our study. The LDs were all found to be stable and above the predicted value of the general population regarding mental components of quality-of-life. Three LDs showed declined physical components, possibly related to older age. Only one LD reported a value in mood (anxiety) that would need further assessment. The marital satisfaction of LDs remained stable and unchanged compared to baseline values. Notably, the two recipients with early graft failures, and their related LDs, regained their mental well-being during the first years after graft failure and remained stable after 5 years. LIMITATIONS, REASONS FOR CAUTION The restricted sample size and the single-centre study-design are limitations of this study. Additionally the study was limited to LD UTx, as opposed to deceased donor UTx. WIDER IMPLICATIONS OF THE FINDINGS Our study shows that both LDs and recipients had acceptable or favourable quality-of-life outcomes, including mood assessment, at the 5-year follow-up mark, and that failure to achieve a live birth negatively affected these modalities both for LDs and recipients. Moreover, an important finding was that LDs and recipients are not reacting with depression after hysterectomy, which is common after hysterectomy in the general population. STUDY FUNDING/COMPETING INTEREST(S) Funding was provided by the Jane and Dan Olsson Foundation for Science, Knut and Alice Wallenberg Foundation, Handlanden Hjalmar Svensson Foundation, Swedish Governmental ALF Grant, and Swedish Research Council. There are no conflicts of interest to disclose. TRIAL REGISTRATION NUMBER NCT01844362. [ABSTRACT FROM AUTHOR]