Health related quality of life and associated factors among patients treated for ischaemic heart disease in two public sector hospitals of Karachi, Pakistan.

Objectives: To determine the level of health-related quality of life among patients treated for ischaemic heart disease in two public-sector tertiary care settings. METHODS: The analytical cross-sectional study was conducted from July to September 2021 at two tertiary care hospitals in Karachi after approval from the ethics review boards of the National Institute of Cardiovascular Diseases and the Dow University of Health Sciences, and comprised patients of either gender treated for ischaemic heart disease after being diagnosed within the preceding year who were coming for follow-up in the outpatient department. Data was collected using the short version of the World Health Organisation quality of life tool. Association of socio-demographic and clinical variables with health-related quality of life was explored. Data was analysed using SPSS 21. RESULTS: Of the 300 patients aged 25-85 years, 212(70.7%) were males and 88(29.3%) were females. The mean total quality of life score was 6.1+/-1.4, while mean general health was 52.6+/-10.5. The lowest score among quality of life subscales was for environmental 44.7+/-15.1, while the highest score was for psychological 60.1+/-10.7 domains. Quality of life was significantly associated with patients' age, education, comorbidities, marital status, monthly income, body mass index, activities of daily living and smoking status (p<0.05). CONCLUSIONS: ischaemic heart disease patients had average health-related quality of life in all domains, but showed low quality of life in the environmental domain.

Association between burnout and nurses' quality of life in neonatal intensive care units: During the COVID-19 pandemic.

Background: Neonatal intensive care unit (NICUs) nurses could suffer from job stress and burnout, which could cause increased turnover rates and decreased Quality of Life (QoL) among nurses. Purpose: To determine the association between burnout and nurses' QoL in NICUs. Study design: This correlational study was performed in 2020 on 140 nurses working in NICUs. The Maslach burnout and WHO Quality of Life-BREF was used to collect data. Results: There is a positive association between personal accomplishment and all dimensions of QoL (r = 0.40 to 0.56) and a negative association between emotional exhaustion, depersonalization of burnout and all dimensions of QoL (r = -0.47 to -0.79). Conclusion: It is suggested that several interventions must be taken to prevent burnout and increased QoL in NICU nurses. The findings could provide scientific evidence for managers and encourage evidence-based decision-making to reduce burnout and improve the QoL of nurses especially during the Covid-19 pandemic.

Phosphodiesterase inhibitor for heart failure with preserved ejection fraction: A systematic review and meta-analysis.

Background: Although heart failure with preserved ejection fraction (HFpEF) is a serious disease, only limited options are available for its treatment. Recent studies have analyzed the effects of phosphodiesterase (PDE) inhibitors, especially PDE5 and PDE3 inhibitors, in patients with HFpEF, with mixed outcomes. Methods: We searched PUBMED and EMBASE databases up to August 2021. Randomized controlled trials (RCTs) and clinical trials that tested the effects of PDE inhibitors on patients with HFpEF were included as eligible studies. Indicators of left ventricular (LV) function, pulmonary arterial pressure (PAP), right ventricular (RV) function, exercise capacity, and quality of life (QOL) were used to evaluate the efficacy of PDE inhibitors in HFpEF. Results: Six RCTs that reported in 7 studies were included to evaluate the efficiency of PDE inhibitors on HFpEF patients. In the pooled analysis, PDE inhibitors showed insignificant changes in the ratio of early diastolic mitral inflow to annular velocities, left atrial volume index, pulmonary artery systolic pressure (PASP), pulmonary vascular resistance (PVR), peak oxygen uptake, 6-minute walking test distance, as well as Kansas City Cardiomyopathy Questionnaire score. However, substantial improvement was observed in the tricuspid annular plane systolic excursion (TAPSE). Additionally, the regression analysis showed that PDE inhibitor administration time is a critical factor for the decrease in PASP. Conclusions: PDE inhibitors did not effectively improve LV function, PAP, exercise capacity, and QOL in patients with HFpEF. However, they improved RV function with significant difference, suggesting that PDE inhibitors might be a promising option for HFpEF patients with RV dysfunction.

Medication adherence status among patients with neurological conditions and its association with quality of life.

BACKGROUND/AIM: Medication non-adherence may cause significant morbidity and mortality in patients with chronic diseases and may increase the economic burden on the healthcare system. The prevalence of neurological disorders is increasing in Malaysia; however, comprehensive data on medication adherence among Malaysian patients with these disorders is limited. This study was conducted to determine the association of medication non-adherence with quality of life in patients with neurological problems. METHODS: A cross-sectional survey was performed in 370 patients diagnosed with epilepsy, Parkinson's disease, stroke and Alzheimer's disease at Neurology clinic. Patients aged 18 years or older, without documented physical or psychiatric illness such as schizophrenia and major depression, were included. Patient-administered questionnaires, such as the Malaysian Medication Adherence Scale and Medication Possession Ratio were used to determine medication adherence. An established EQ-5D-3L questionnaire was used to determine quality of life. Data were analysed using descriptive and inferential analysis. RESULTS: The overall prevalence of medication non-adherence among patients with neurological disorders was 59.2%. Among these neuromedical diseases, 69.2% (n = 9/13) of Alzheimer's disease, 66.7% (n = 98/147) of epilepsy, 62.1% (n = 36/58) of Parkinson's disease and 48.7% (n = 74/152) of stroke patients were found non-adherent. There was a significant difference in EQ-5D index scores (p = 0.041) between adherent and non-adherent patients. CONCLUSION: A high prevalence of medication non-adherence was found among patients with neurological disorders. The rate of non-adherence varied among different neurological conditions. There was a significant difference in quality of life between adherent and non-adherent patients.

The effect of radiation therapy on post-prostatectomy urinary function.

AIM: We sought to evaluate the effect of radiation therapy on post-prostatectomy urinary quality of life in prostate cancer patients. BACKGROUND: In some men with non-metastatic prostate cancer, radiation therapy is indicated following prostatectomy. The radiation toxicity and quality of life considerations are unique in the post-prostatectomy setting. MATERIALS AND METHODS: A total of 106 patients receiving post-prostatectomy radiation therapy completed the Expanded Prostate Cancer Index Composite questionnaire before radiation and at 2-year follow-up. The primary outcomes of this study were the urinary domain summary score and subscale scores. Planned analysis was performed based on time interval from prostatectomy to radiation therapy. RESULTS: Among the 106 patients analyzed, the mean urinary domain summary score worsened at 2-year follow-up after radiation therapy, lowering from 77.23-72.51 (p = 0.0085). Similar worsening was observed in the subscales of function (p = 0.003), bother (p = 0.0397), and incontinence (p = 0.0003). Urinary incontinence showed the greatest observable change among subscales. While the summary score worsened (p = 0.0031) among patients receiving radiation therapy more than 1 year after prostatectomy, it did not show statistically significant change in those treated 1 year or less after prostatectomy. CONCLUSION: Our results demonstrate that post-prostatectomy radiation therapy is associated with modest declines in reportable urinary quality of life. Patients receiving radiation therapy more than 1 year after prostatectomy showed greater worsening of urinary quality of life, which indicates that there may be no functional advantage to delaying radiation therapy beyond the initial postoperative period.

Health utilities and quality of life in individuals with tuberous sclerosis complex (TSC) who experience epileptic seizures: A web-based survey.

OBJECTIVES: Individuals with tuberous sclerosis complex (TSC) experience a wide range of health impacts, including epileptic seizures, negatively impacting their health-related quality of life (HRQoL). Health state utility values (HSUVs) are index values representing HRQoL and are used as key inputs for health economic analyses. Such data are currently very limited in the TSC population. The objective of this study was to generate HSUVs for TSC health states, defined by the number and type of seizures experienced in the previous week, and to compare with UK normative values. METHODS: This cross-sectional study involved 186 participants (individuals with TSC = 61, caregivers reporting for individuals with TSC = 125) from Europe and North America who completed a web-based survey. Participants completed the [EuroQol - 5 dimensions - 3 levels] (self-report version for individuals with TSC or proxy version 1 for caregivers). RESULTS: The mean age of individuals with TSC was 27.3 years (self-reported: 41.3 years, caregiver-reported: 20.5 years); 56% were males. Most individuals with TSC (71%) reported experiencing between one and ten seizures in the week prior to participating in the study. The most frequently reported type of seizure was focal: simple partial (50%). Across all participants (combined self-report and caregiver-report), the mean HSUV was 0.474 (95% confidence interval [CI]: 0.424-0.524), significantly lower than the UK norm (0.856, 95%CI: 0.848-0.864) [1]. Mean HSUV and HRQoL scores were consistently lower when reported by caregivers than when self-reported by individuals with TSC (HSUV = 0.351 vs. 0.727). This is in part because caregivers reported for individuals with TSC who experienced more frequent and severe seizures than those who were able to self-report. HSUVs incrementally decreased with the experience of more frequent (1-5 per week: HSUV = 0.666 vs. >20: HSUV = 0.290) and more severe seizures (focal: simple partial: HSUV = 0.450 vs. generalized: convulsive: HSUV = 0.194). CONCLUSIONS: The HRQoL and HSUV index scores indicate substantial impairment among individuals with TSC; HSUVs were shown to decrease considerably with increases in seizure frequency or seizure severity, indicating that more burdensome seizure health states are associated with poorer HRQoL.

Patients' view of the differences in topical creams for radiation dermatitis prevention. A pilot study of cosmetic properties.

AIM: To investigate the feasibility of including patients' reports on the cosmetic properties of topical formulations for acute radiation dermatitis (ARD). BACKGROUND: No topical agent tested for acute radiation dermatitis (ARD) has proven to be better than any other, all achieving similar objective outcomes. No clear guidelines have therefore been established in clinics. Because the vehicle for such creams has shown to be an important factor in patient adherence to treatments in other dermatological diseases, patients' opinions are evaluated. MATERIAL AND METHODS: Seventy breast cancer patients referred for postoperative radiotherapy after conservative surgery were enrolled. Patients were assigned to use one of the 7 topical agents that are most-commonly used in the prevention of ARD. Patients' reports were assessed using continuous visual analogue scales (VAS), objective signs and symptoms produced by ARD, and were rated using the RTOG and RISRAS scales. RESULTS: The creams tested differed in their cosmetic properties significantly (p = 0.044). The performance of the agent, their absorption and any residue left over were also significantly different (p = 0.022, 0.014 and 0.02, respectively). CONCLUSIONS: Topical agents for preventive ARD are reported by patients to show different cosmetic properties. Cosmetic properties are important when choosing topical agents for ARD prevention. Recommending those with better cosmetic profiles would improve patient adherence to treatments.

Colorectal cancers survivors' adherence to lifestyle recommendations and cross-sectional associations with health-related quality of life.

The lifestyle recommendations of the World Cancer Research Fund (WCRF)/American Institute for Cancer Research (AICR) are primarily intended for cancer prevention. In the absence of specific recommendations for cancer survivors, we investigated adherence of colorectal cancer (CRC) survivors to the WCRF/AICR lifestyle recommendations and associations with health-related quality of life (HRQoL). The cross-sectional part of the Energy for life after ColoRectal cancer (EnCoRe) study was conducted in 155 CRC survivors (stage I-III), 2-10 years post diagnosis. Dietary intake, physical activity and general body fatness were measured by 7-d food diaries, by questionnaires and accelerometers and BMI, respectively. Adherence to each of the ten WCRF/AICR recommendations was scored as 0 (no/low adherence), 0·5 (moderate adherence) or 1 point (complete adherence), and summed into an overall adherence score (range: 0-10). HRQoL, disability and distress were assessed by validated questionnaires. Associations of the overall WCRF/AICR adherence score with HRQoL outcomes were analysed by confounder-adjusted linear regression. The mean adherence score was 5·1 (sd 1·4, range: 1·5-8·5). In confounder-adjusted models, a higher adherence score was significantly associated with the HRQoL dimension better physical functioning (ß per 1 point difference in score: 2·6; 95 % CI 0·2, 5·1) and with less fatigue (ß: -3·3; 95 % CI -6·4, -0·1). In conclusion, higher adherence of CRC survivors to WCRF/AICR lifestyle recommendations for cancer prevention was associated with better physical functioning and with less fatigue. This study adds to the limited knowledge on adherence to lifestyle behaviours in CRC survivors and relationships with quality of life. Prospective studies are needed to investigate longitudinal associations.

Effect of long-term nutraceutical and dietary supplement use on cognition in the elderly: a 10-year systematic review of randomised controlled trials.

Nutraceuticals have generated interest as a way to mitigate the cognitive decline in older adults. The aim of this systematic review was to determine the evidence for these claims from the scientific literature in randomised, double-blinded, controlled trials (duration: ≥1 year; participants: n≥100; age(mean): ≥65 years). Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, we searched four electronic databases (PubMed, Scopus, CINAHL and Web of Science) and identified twenty-five studies published between the 15·June·2006 and 14·June·2016. Interventions included B-vitamins, n-3 fatty acids, antioxidant vitamins and herbs. Of the B-vitamin studies, four found benefits to cognition with supplementation. The first of these B-vitamin studies, in individuals with mild cognitive impairment (n 266; duration=2 years), included benefit to executive function (P=0·015) and improvements in the Mini-Mental State Examination (MMSE) among participants with baseline homocysteine above 11·3 µmol/l (P<0·001). In the same sample, the second study found cognitive benefits of B-vitamins dependent on the higher baseline plasma n-3 fatty acid status. The third B-vitamin study (n 900; duration=2 years) reported improved performance in immediate (P=0·046) and delayed recall (P=0·013), whereas the fourth study (n 856; duration=2 years) reported slower rate of cognitive decline in the MMSE (P=0·05). One study investigating DHA treatment (n 402; duration=1·5 years) revealed the slower rate of cognitive change in apoE e4 non-carriers (P=0·03). As only five included studies revealed notable benefits, presently based on the specific compounds explored here, there is not compelling evidence to support the use nutraceuticals to improve cognition in the elderly. Future long-term trials of nutraceuticals should investigate interactions with lifestyle, blood biomarkers and genetic risk factors.

Mono-injection intra-articulaire d'acide hyaluronique dans la gonarthrose : Étude multicentrique prospective ouverte (ART-ONE 75) avec comparaison post hoc versus placebo.

INTRODUCTION: La viscosupplémentation du liquide synovial par injection intra-articulaire d'acide hyaluronique est un traitement symptomatique de l'arthrose, largement utilisé dans la gonarthrose (arthrose du genou). À côté des produits conçus pour être administrés par injections multiples (typiquement 3 à 5 injections à intervalles de 1 semaine), un intérêt particulier se porte sur produits en injection unique (mono-injection) qui offrent des avantages spécifiques tels que la réduction du nombre de visites au médecin et du nombre d'interventions invasives avec leurs risques associés. Il subsiste toutefois une question concernant l'efficacité de ces mono-injections, par rapport aux protocoles à injections multiples. MÉTHODES: Une étude post-commercialisation, prospective, multicentrique, ouverte (ART-ONE 75), a été réalisée avec le produit pour injection unique Arthrum 2,5 % (3 mL, 75 mg d'acide hyaluronique) (LCA Pharmaceutical, Chartres, France), sur 214 patients atteints de gonarthrose. Les patients ont été suivis à 30, 60, 120 et 180 jours. Le profil moyen des patients à l'inclusion était un âge de 62,9 ans, 56 % de femmes, un stade radiologique Kellgren-Lawrence de I à III (46 % KL III), un indice de masse corporelle de 27,2 kg/m2 et une antériorité de 4 ans pour la gonarthrose. Une comparaison post hoc a été réalisée par rapport à une injection intra-articulaire unique de placebo (326 patients regroupés à partir de 3 essais randomisés contrôlés), et présentant un profil similaire de patients. RÉSULTATS: Le critère principal était la variation par rapport à la baseline, de l'indice Western Ontario and McMaster Universities, sous-échelle de la douleur (WOMAC A) dont le score (base 0-100), était réduit à 60 jours, de 28,9 (17,4) pour la population en intention de traiter (199 patients), de 28,0 (17,8) pour la population per protocole à l'inclusion (175 patients), et de 27,7 (16.8) pour la population per protocole ayant terminé l'étude (143 patients). Les critères secondaires et accessoires comprenaient le score WOMAC A aux autres dates, le score WOMAC B (raideur), le score WOMAC C (fonction), la qualité de vie et le handicap à chaque date de suivi. Tous les indices étaient significativement améliorés et continuaient à s'améliorer à la fin de l'étude. L'évaluation thérapeutique à 180 jours a montré que plus de 75 % des patients étaient satisfaits de la réduction de la douleur, de l'amélioration de la mobilité et de la réduction de la consommation d'analgésiques et d'anti-inflammatoires non stéroïdiens. Le pourcentage de patients définis comme répondeurs selon les critères de l'OMERACT-OARSI Initiative était > 86 %, à partir de 60 jours. La tolérance globale était bonne, sans aucun évènement indésirable grave. Les résultats de la comparaison post hoc pour le score WOMAC A ont montré une taille d'effet variant de 0,33 (IC 95 % 0,15-0,51), à 60 jours à 0,65 (IC 95 % 0,45-0,85) à 180 jours (p < 0.001), versus placebo injecté (solution saline), qui est cliniquement significative en faveur d'Arthrum 2,5 %. CONCLUSION: La présente étude suggère l'efficacité clinique d'une mono-injection IA de 3 mL de solution viscoélastique contenant 75 mg d'AH natif de haut poids moléculaire (> 2 MDa).

Effects of progressive resistance training combined with a protein-enriched lean red meat diet on health-related quality of life in elderly women: secondary analysis of a 4-month cluster randomised controlled trial.

Resistance training (RT) and increased dietary protein are recommended to attenuate age-related muscle loss in the elderly. This study examined the effect of a lean red meat protein-enriched diet combined with progressive resistance training (RT+Meat) on health-related quality of life (HR-QoL) in elderly women. In this 4-month cluster randomised controlled trial, 100 women aged 60-90 years (mean 73 years) from self-care retirement villages participated in RT twice a week and were allocated either 160 g/d (cooked) lean red meat consumed across 2 meals/d, 6 d/week or ≥1 serving/d (25-30 g) carbohydrates (control group, CRT). HR-QoL (SF-36 Health Survey questionnaire), lower limb maximum muscle strength and lean tissue mass (LTM) (dual-energy X-ray absorptiometry) were assessed at baseline and 4 months. In all, ninety-one women (91 %) completed the study (RT+Meat (n 48); CRT (n 43)). Mean protein intake was greater in RT+Meat than CRT throughout the study (1·3 (sd 0·3) v. 1·1 (sd 0·3) g/kg per d, P<0·05). Exercise compliance (74 %) was not different between groups. After 4 months there was a significant net benefit in the RT+Meat compared with CRT group for overall HR-QoL and the physical component summary (PCS) score (P<0·01), but there were no changes in either group in the mental component summary (MCS) score. Changes in lower limb muscle strength, but not LTM, were positively associated with changes in overall HR-QoL (muscle strength, ß: 2·2 (95 % CI 0·1, 4·3), P<0·05). In conclusion, a combination of RT and increased dietary protein led to greater net benefits in overall HR-QoL in elderly women compared with RT alone, which was because of greater improvements in PCS rather than MCS.

The progression of coeliac disease: its neurological and psychiatric implications.

The aim of the paper is to show the various neurological and psychiatric symptoms in coeliac disease (CD). CD is a T cell-mediated, tissue-specific autoimmune disease which affects genetically susceptible individuals after dietary exposure to proline- and glutamine-rich proteins contained in certain cereal grains. Genetics, environmental factors and different immune systems, together with the presence of auto-antigens, are taken into account when identifying the pathogenesis of CD. CD pathogenesis is related to immune dysregulation, which involves the gastrointestinal system, and the extra-intestinal systems such as the nervous system, whose neurological symptoms are evidenced in CD patients. A gluten-free diet (GFD) could avoid cerebellar ataxia, epilepsy, neuropathies, migraine and mild cognitive impairment. Furthermore, untreated CD patients have more symptoms and psychiatric co-morbidities than those treated with a GFD. Common psychiatric symptoms in untreated CD adult patients include depression, apathy, anxiety, and irritability and schizophrenia is also common in untreated CD. Several studies show improvement in psychiatric symptoms after the start of a GFD. The present review discusses the state of the art regarding neurological and psychiatric complications in CD and highlights the evidence supporting a role for GFD in reducing neurological and psychiatric complications.

Quality of life and fear of cancer recurrence after endoscopic treatment for early Barrett's neoplasia: a prospective study.

Endoscopic therapy is the treatment of choice for high grade intraepithelial neoplasia (HGIN) or early cancer (≤T1sm1) in Barrett's esophagus (BE). We prospectively evaluated the effect of endoscopic treatment on quality of life (QOL) and fear of cancer (recurrence) and compared this with the effect of Barrett's surveillance or surgery. Patients treated endoscopically for early Barrett's neoplasia (n = 42, HGIN - T1sm1N0M0) were compared with three groups: patients with non-dysplastic BE undergoing surveillance (n = 44); patients treated surgically for early BE neoplasia (HGIN - T2N0M0, n = 21); patients treated surgically for advanced BE cancer (T1N1M0 - T3N1M0, n = 19). QOL (SF-36; EORTC-QLQ-C30; EORTC-QLQ-OES18) and fear of cancer recurrence (Worry of Cancer Scale [WOCS] and the Hospital Anxiety and Depression Scale [HADS]) were measured at baseline, 2 and 6 months after treatment. The endoscopic treatment group reported significantly better QOL in both physical and mental scales of SF-36 and EORTC-QLQ-C30 and less esophageal cancer related symptoms compared to both surgical groups. The endoscopic treatment group reported significant more worry for cancer recurrence (WOCS) compared to the early surgical group. Their scores on the WOCS were comparable with the scores of the advanced surgical group. Endoscopic treatment of early esophageal cancer has less negative impact on QOL and esophageal cancer symptoms than surgery. However, endoscopically treated patients worry as much about cancer recurrence as patients treated surgically for advanced cancer.

Assessing Long-Term Quality of Life Concerns Through Survivorship Clinic in Head and Neck Cancer Patients.

OBJECTIVE: To characterize the concerns of head and neck cancer (HNC) patients and discern changes in quality-of-life (QoL) during long-term follow-up. STUDY DESIGN: Retrospective review. SETTING: Survivorship clinic at a tertiary academic center. METHODS: A retrospective review was conducted on HNC patients seen in our survivorship clinic between 1/2020 and 1/2024 using the University of Washington Quality of Life (UW-QOL) Questionnaire. RESULTS: Three hundred and forty-two patients were seen for 914 encounters. Patients were divided into 4 groups: pretreatment (n = 326), 0 to 12 months posttreatment (n = 247), 1 to 3 years posttreatment (n = 248), and more than 3 years posttreatment (n = 64). The average follow-up after treatment was 459 days (range: 0-5.2 years). Multivariable analysis revealed significant improvements in overall QoL, health-related QoL, social-emotional composite scores, activity, anxiety, appearance, chewing, mood, pain, speech, and recreation at more than 1-year posttreatment compared to less than 1-year posttreatment. However, declines were noted in saliva and taste scores. No differences in scores were observed between patients 1 to 3 years posttreatment and those >3 years posttreatment. At all timepoints before and after treatment, top concerns were pain, activity, and swallowing. Patients with oral cancer followed for more than 1-year posttreatment had worse scores in appearance, chewing, pain, and speech compared to those with oropharyngeal cancer. CONCLUSIONS: Understanding the evolving concerns of HNC patients is imperative for enhancing care. Most QoL domains improve at 1-year posttreatment except for saliva, taste, swallowing, and shoulder function. QoL scores stabilize after 1-year post-treatment. Pain, activity, and swallowing remain the top concerns at all time points.

Breaking the silence: A qualitative exploration of parental perspectives of children with Goldenhar Syndrome.

Background: Goldenhar Syndrome is a rare congenital condition, typically characterized by craniofacial abnormalities and vertebral malformations. Due to its rare and complex nature, the etiology is unconfirmed, resulting in parental uncertainty and subsequent emotional sequelae. Clinical manifestations have been researched but few studies have explored parental wellbeing and Quality of Life (QoL). In this qualitative study, we explore parental views of the challenges and lived experience of raising a child with Goldenhar Syndrome. Methods: Ten biological parents (five mothers and five fathers), recruited at the Goldenhar UK Conference, took part in audio-recorded, semi-structured interviews. Interviews explored emotional wellbeing, views surrounding causation, support accessed, challenges faced, experience of stigma and future outlooks. Reflexive thematic analysis was employed, and transcripts were subject to deductive and inductive coding. Results: Seven themes were identified: support networks (Goldenhar UK), rollercoaster of emotion; gendered coping; uncertainty; societal reactions; coping with challenge and acceptance. Conclusions: This is the first-time the life perspectives of parents, raising a child with Goldenhar Syndrome, have been explored via interviews. We have unearthed prominent issues that impact parental QoL including isolation and distress at the point of diagnosis, and throughout the multidisciplinary health journey. We have also established significant indicators of the ongoing QoL challenges faced by young people with Goldenhar Syndrome. Future work is underway exploring these issues further with teenagers, young people and adults with Goldenhar to develop a conceptual framework of their QoL. This will be used to develop a bespoke patient reported outcome (PRO) to give voice to the challenges children and young adults face during their medical journey.

Effects of beta-blockers on quality of life and well-being in patients with myocardial infarction and preserved left ventricular function-a prespecified substudy from REDUCE-AMI.

AIMS: In the Randomized Evaluation of Decreased Usage of Beta-Blockers after Acute Myocardial Infarction (REDUCE-AMI) study, long-term beta-blocker use in patients after acute myocardial infarction (AMI) with preserved left ventricular ejection fraction demonstrated no effect on death or cardiovascular outcomes. The aim of this prespecified substudy was to investigate effects of beta-blockers on self-reported quality of life and well-being. METHODS AND RESULTS: From this parallel-group, open-label, registry-based randomized clinical trial, EQ-5D, and World Health Organization well-being index-5 (WHO-5) questionnaires were obtained at 6-10 weeks and 11-13 months after AMI in 4080 and 806 patients, respectively. We report results from intention-to-treat and on-treatment analyses for the overall population and relevant subgroups using Wilcoxon rank sum test and adjusted ordinal regression analyses. Of the 4080 individuals reporting EQ-5D (median age 64 years, 22% female), 2023 were randomized to beta-blockers. The main outcome, median EQ-5D index score, was 0.94 [interquartile range (IQR) 0.88, 0.97] in the beta-blocker group, and 0.94 (IQR 0.88, 0.97) in the no-beta-blocker group 6-10 weeks after AMI, OR 1.00 [95% CI 0.89-1.13; P > 0.9]. After 11-13 months, results remained unchanged. Findings were robust in on-treatment analyses and across relevant subgroups. Secondary outcomes, EQ-VAS and WHO-5 index score, confirmed these results. CONCLUSION: Among patients after AMI with preserved left ventricular ejection fraction, self-reported quality of life and well-being was not significantly different in individuals randomized to routine long-term beta-blocker therapy as compared to individuals with no beta-blocker use. These results appear consistent regardless of adherence to randomized treatment and across subgroups which emphasizes the need for a careful individual risk-benefit evaluation prior to initiation of beta-blocker treatment.

Longitudinal Assessment of the Quality of Life in Oral Squamous Cell Carcinoma Patients.

Background Studies evaluating the quality of life (QoL) among oral cancer patients in the Indian population are scarce. Regular follow-ups and QoL assessment in oral squamous cell carcinoma (OSCC) patients can aid in comprehensive support strategies to improve their QoL outcomes. Aim and objectives This study aimed to assess the QoL of oral cancer patients and correlate the QoL with demographic and treatment parameters.  Materials and methods The study included oral cancer patients who had previously reported to the Department of Oral and Maxillofacial Surgery. QoL assessment was done using the EORTC QLQ-C30 and QLQ-HN43 questionnaires before and after treatment. The clinico-demographic details, treatment data, follow-up data, and recorded mean QoL were procured from the patient records in Dental Information Archival Software. Assessment of QoL was done before treatment and at intervals of one month, three months, six months, 12 months, 24 months, and 36 months postoperatively after treatment. Statistical analysis was performed using IBM SPSS Statistics for Windows, Version 23 (released 2015; IBM Corp., Armonk, New York, United States). A repeated measures analysis of variance (ANOVA) was utilized for comparing the average QoL scores and frequency of follow-ups across various intervals. Chi-square tests assessed differences in mean QoL among genders, across different sites, and between primary closure and graft placement. The significance was set at a p-value of less than 0.05. Results A total of 90 OSCC patients had reported to the department. A preoperative assessment of QoL was done for 90 (100%) patients. Out of these patients, surgery has been performed on 41 (45%). Twenty-five out of 41 (60%) patients had responded to regular follow-up, and QoL was assessed for these patients. After the immediate postoperative phase, only 12 (48%) had reported after three months. Only six (24%) had a 12-month follow-up, five (20%) had a two-year follow-up, and one (4%) had a three-year follow-up. There was a constant decrease in the number of follow-ups after the treatment of OSCC (p=0.00). Prior to treatment, the mean QoL index was 4.64. Females had a slightly higher preoperative QoL of 4.76 compared to males, with a score of 4.67 (p=0.157). Immediately after the treatment of OSCC, a decline in QoL scores was noted, with a mean score of 4.25 (p=0.32). Patients who underwent primary closure after excision had a mean post-op QoL score of 4.9, while patients who underwent graft placement had a mean score of 4.6 (p=0.157). Conclusion This study highlights the enduring impact of oral cancer on a patient's quality of life and emphasizes the need for ongoing research to explore specific interventions that can contribute to sustained improvement in QoL. It emphasizes personalized, holistic care approaches for such patients.

Heath-related quality of life and functional outcomes in patients with congenital or juvenile idiopathic scoliosis after an average follow-up of 25 years: a cohort study.

BACKGROUND CONTEXT: Congenital and juvenile scoliosis are both early-onset deformities that develop before the age of 10. Children are treated to prevent curve progression and problems in adulthood such as back pain and a decreased quality of life but literature on long-term outcomes remains scarce. PURPOSE: To evaluate the health-related quality of life (HRQoL) and potential disability of children with congenital scoliosis (CS) or juvenile idiopathic scoliosis (JIS) after a minimum of 20 years follow-up. STUDY DESIGN: Comparative cohort study. PATIENT SAMPLE: A consecutive cohort of CS and JIS patients were retrospectively identified from a single-center scoliosis database. Patients born between 1968 and 1981 and treated during skeletal growth were eligible for participation. OUTCOME MEASURES: HRQoL (SF-36, SRS-22r, ODI). METHODS: The primary aim was to evaluate the HRQoL of CS and JIS patients using the general SF-36 questionnaire. Both patient cohorts were compared with age-matched national norms. The secondary aim was to analyze the differences between conservatively and surgically treated patients using the scoliosis-specific Scoliosis Research Society-22r questionnaire (SRS-22r) and the Oswestry Disability Index (ODI). T-tests were used for statistical comparison. RESULTS: In total, 114 patients (67% of the eligible patients) completed the questionnaire, with a mean follow-up of 25.5±5.5 years after their final clinical follow-up. Twenty-nine patients with CS were included with a mean age of 44.4±3.8 years (79.3% female), and 85 patients with JIS with a mean age of 43.7±4.2 years (89.4% female). Of the SF-36 domains, only the vitality score (60.6±18.0 for CS and 58.1±17.6 for JIS cohort) and mental health score (70.0±18.4 for CS and 72.1±18.1 for JIS cohort) were significantly lower compared with the general population (68.6±19.3 for vitality, and 76.8±17.4 for mental health). These decreased scores were larger than the determined minimum clinically important difference threshold of 4.37. Surgically treated JIS patients had a significantly lower score on the SRS-22r pain domain than their nonsurgically treated peers (3.6±0.9 vs 4.1±0.7l p=.019). Surgically treated CS patients had a significantly higher score on the SRS-22r mental health domain than their nonsurgically treated peers (4.3±0.5 vs 3.5±1.0; p=.023). No significant differences were found in the other domains. CONCLUSIONS: Except for vitality and mental health domains, congenital and juvenile idiopathic scoliosis patients treated during skeletal growth had similar HRQoL on most SF-36 domains in adulthood compared with national norms. Surgical treated JIS patients experienced more pain compared with brace treated patients, while braced CS patients had a significantly lower mental scores compared with surgical treated patients. These long-term outcomes are essential to inform patients and can guide shared decision-making between clinicians and patients.

Sense of smell in chronic rhinosinusitis: A multicentric study on 811 patients.

Introduction: The impairment of the sense of smell is often related to chronic rhinosinusitis (CRS) with or without nasal polyps (CRSwNP, CRSsNP). CRSwNP is a frequent condition that drastically worsens the quality of life of those affected; it has a higher prevalence than CRSsNP. CRSwNP patients experience severe loss of smell with earlier presentation and are more likely to experience recurrence of their symptoms, often requiring revision surgery. Methods: The present study performed a multicentric data collection, enrolling 811 patients with CRS divided according to the inflammatory endotype (Type 2 and non-Type 2). All patients were referred for nasal endoscopy for the assessment of nasal polyposis using nasal polyp score (NPS); Sniffin' Sticks olfactory test were performed to measure olfactory function, and SNOT-22 (22-item sinonasal outcome test) questionnaire was used to assess patients' quality of life; allergic status was evaluated with skin prick test and nasal cytology completed the evaluation when available. Results: Data showed that Type 2 inflammation is more common than non-type 2 (656 patients versus 155) and patients suffer from worse quality of life and nasal polyp score. Moreover, 86.1% of patients with Type 2 CRSwNP were affected by a dysfunction of the sense of smell while it involved a lesser percentage of non-Type 2 patients. Indeed, these data give us new information about type-2 inflammation patients' characteristics. Discussion: The present study confirms that olfactory function weights on patients' QoL and it represents an important therapeutic goal that can also improve patients' compliance when achieved. In a future - and present - perspective of rhinological precision medicine, an impairment of the sense of smell could help the clinician to characterize patients better and to choose the best treatment available.