EQ-5D Domains Research Articles

What is the effect of bariatric surgery on health-related quality of life in people with obesity? observational cohort analysis of the United Kingdom national bariatric surgery registry.

Previous small studies investigating health-related quality of life (HRQoL) following bariatric surgery have demonstrated heterogenous effects. This study aimed to use National Bariatric Surgery Registry (NBSR) records to investigate the relationship between weight and HRQoL in people undergoing bariatric surgery in the UK. In this observational study using United Kingdom National Bariatric Surgery Registry (NBSR) records between 1st June 2017 and 23rd November 2022, patients undergoing primary bariatric surgery with one baseline and at least one follow-up visit within one year from surgery were eligible for inclusion. Models estimated the relationship between EuroQol Five Dimension 5-level (EQ-5D) and BMI at baseline and longitudinally. Further analyses stratified by type 2 diabetes, type of operation (adjustable gastric band, sleeve, or bypass) and domain of EQ-5D. 5,587 observations of 2,160 patients were analysed. At baseline, mean BMI was 45.7±7.8kg/m2 and mean EQ-5D was 0.78±0.22. A 1kg/m2 higher BMI was associated with 0.005 (95%CI[-0.006,-0.004]) lower EQ-5D. In the month following surgery, EQ-5D increased to 0.91±0.2 while BMI decreased to 39.8±7.1kg/m2 (P<0.001 for both); subsequently EQ-5D plateaued (0.90±0.17 at 12 months) while BMI continued to decrease (31.5±6.2kg/m2 at 12 months, P<0.001). Each 1kg/m2 decrease in BMI was associated with a 0.006 (95%CI [-0.007,-0.005]) increase in EQ-5D. Remission of T2D was independently associated with increase in EQ-5D (0.037, 95%CI [0.015,0.059]); type of operation was not. Decreases in BMI were associated with improvements in all five domains of EQ-5D. In this large dataset, greater weight loss and T2D remission were independently associated with greater improvements in HRQoL following bariatric surgery. The HRQoL-BMI relationship for people undergoing bariatric surgery differs to that which has previously been estimated following behavioural interventions. Use of the estimates generated here will be important for clinical and political decision making.

#254 PaCE CKD: examining health status and financial burden in patients with chronic kidney disease: assessing the non-clinical burden of disease

Abstract Background and Aims There is a detrimental effect of chronic kidney disease (CKD) on health states, with many patients worldwide experiencing considerable symptom burden and development of comorbidities, leading to frequent medical appointments and hospitalisations. Patients experience disease-associated financial strain as their ability to work is impaired. The aim of this multinational study was to characterise the non-clinical burden of CKD by quantifying the effect of CKD on health states and productivity in patients versus general population in several regions. Method Patients with early (stages 1-3) to advanced (stages 4-5) of CKD, including those receiving dialysis treatment, in Germany, Mexico, Taiwan, the UK, and the US were enrolled to a cross-sectional non-interventional survey measuring: Scores were compared with a general population cohort, matched 1:1 in sample size against patient cohorts and for demographic characteristics (e.g. age and area of residence). Results Across five countries, an average of 201 (range: 190–212) patients were enrolled, of whom 42% were receiving dialysis in Germany, 57% in Mexico, and 55% in the UK with smaller proportions of patients on dialysis cohorts in the US (32%) and Taiwan (15%). Haemodialysis was the most prevalent mode of dialysis in all countries, with most patients receiving dialysis in a clinic or hospital. Enrolled patients who had received a kidney transplant accounted for 11.5% on average across all countries. Compared with general population, people with CKD experienced a 24% reduction in mean [SD] EQ-5D utility scores, with patients in the US experiencing the greatest disparity in health states (0.64 [0.27] versus 0.95 [0.08]). Patients with CKD reported significantly more problems across all EQ-5D domains in Germany, Mexico, the US, and UK than general population cohorts. The highest percentage of patients reporting problems was in Mexico, with 81.4% reporting problems in usual activities compared with 4.4% in the general population. Patients receiving dialysis reported a mean EQ-VAS value of 70.3 compared with 91.8 in non-dialysis dependent patients, indicating that treatment burden negatively contributes towards patients perception of their health. In addition to impaired health states, patients reported elevated impairment across work and non-work activities in all countries. Patients reported increased rates of absenteeism, presenteeism, work impairment and non-work activity impairment, with the greatest impairment observed in the UK of 46.4% in non-work activity impairment compared with the general population. Conclusion These results indicate that people with CKD experience substantial burden of disease that extends beyond its clinical aspects. Decision makers should consider broader disease effects when addressing the burden of CKD.

P619 Sleep disruption is associated with reduced quality of life in inflammatory bowel disease through its interaction with pain

Abstract Background Quality of life is reduced in people with inflammatory bowel disease. Poor sleep is prevalent in people with inflammatory bowel disease. This study aimed to investigate the influence of sleep on quality of life in people with inflammatory bowel disease. Methods An online questionnaire was administered through three tertiary IBD centres, social media and through Crohn’s Colitis Australia. The questionnaire included the EQ-5D-5L measures of health-related quality of including EQ-5D utility score, EQVAS – visual analogue scale from 0-100 of quality of life and domains mobility, selfcare, activities, pain and depression and anxiety. Measures of sleep included the insomnia severity index (ISI), and the Pittsburgh sleep quality index (PSQI). IBD activity was assessed using validated patient reported scores. Demographic data and mental health scores were also obtained. Results Quality of life was lower in people IBD than the general South Australian population (utility score mean (SD) 0.79 (0.15) v 0.91(0.14)). Poor sleep and clinically significant insomnia were associated with lower quality of life (utility score 0.77 (0.15) and 0.71 (0.16) respectively, cohort 0.79 (0.15), p&amp;lt;0.0001). Sleep quality scores moderately correlated with EQ-5D domains pain (Ro=0.35), usual activities (Ro=0.32), and depression-anxiety (Ro=0.37) but not domains self-care or mobility. After adjusting for demographic variables, IBD anxiety, depression, and anxiety the pain domain continued to be influenced by sleep quality, sleep disturbance and sleep duration, and the usual activities domain continued to be influenced by daytime dysfunction (see table 1). Clinically significant insomnia was associated with a reduction of 13.6 (10.42-16.91) (univariate regression) in quality of life measured by EQVAS. Following introduction of demographic and IBD activity the reduction in EQVAS for clinically significant insomnia remained significant (10.11 (6.96-13.27)). Health related quality of life scores (EQVAS) were significantly worse in those with clinically significant insomnia and active IBD than with active IBD alone (see Figure 1). Conclusion Health related quality of life in IBD is influenced by aspects of sleep quality irrespective of IBD activity and mental health conditions. The presence of insomnia is associated with a significant decline health related quality of life. Consideration should be given to sleep targeting interventional studies in an IBD population.

The psychosocial impact of haemophilia from patients' and caregivers' point of view: The results of an Italian survey.

A huge amount of data about psychosocial issues of people with haemophilia (PwH) are available; however, these materials are fragmentary and largely outdated, failing to reflect the impact of current treatment strategies. Describing the influence of illness on psychosocial aspects of adult PwH (≥18 years) and caregivers of children with haemophilia (CPwH) without inhibitors, in Italy. Surveys (for adult PwH, CPwH and haemophilia specialists) were developed by a multidisciplinary working group and conducted from November 2019 to June 2020. A total of 120 PwH without inhibitors and 79 CPwH completed the survey. Adult patients reported a significant impairment in many psychosocial aspects, including working activities, relations with family members and social relations. Caregivers generally reported better scores in all aspects of the survey. Mobility, Pain and Mental health domains of EQ-5D were the most frequently impaired in both patients and caregivers, reducing the perceived quality of life. Genetic counselling was an important issue, 53% of CPwH declaring unawareness of their carrier status, as well as the psychological support offered by the reference center, 67.0% of respondents reporting that no psychological support was provided at the time of diagnosis communication. This study provides information about PwH's and CPwH's point of view in the current scenario of continuous innovations in haemophilia treatment and management furthermore, updated insights on psychosocial problems faced by patients and caregivers are reported.

Assessing health-related quality of life among cancer survivors during systemic and radiation therapy in Bangladesh: a cancer-specific exploration

BackgroundEvaluating the effects of cancer diagnosis and treatment on a patient’s overall well-being is crucial and health-related quality of life (HRQoL) is a reliable metric for assessing this impact. Little is known about HRQoL among cancer survivors across various stages and treatments. The study examined individual and clinical factors influencing HRQoL among cancer survivors.MethodsA cross-sectional study was conducted in two specialised cancer care hospitals in Dhaka, Bangladesh. Cancer-diagnosed adults receiving treatment at selected hospitals from January to May 2022 were enrolled. The 5-level EuroQol-5 Dimensions version (EQ-5D-5L) instrument was used to collect HRQoL data. HRQoL scores were derived using UK value sets. The investigation used a multivariable Tobit regression model to determine the association between independent variables and HRQoL scores.ResultsA total of 607 adult patients were enrolled, with 55% being females and 66% aged 36 to 64 years. Reported health problems in five EQ-5D domains include mobility (11%), self-care (11%), usual daily activities (19%), pain/discomfort (21%), and anxiety/depression (46%). Patients with throat, brain, lung, blood, and liver cancer had lower utility scores. Advanced-stage cancer survivors had lower utility scores (β = -49 units, 95% codfidence interval [CI]: -0.75 to -0.22) compared to early-stage survivors. Physically inactive survivors had lower utility scores by 0.41 units (95% CI: -0.51 to -0.30) compared to their counterparts. Private hospital patients had higher utility scores, whereas patients belonged to poor socioeconomic groups scored worse than wealthier ones.ConclusionsThis study highlights the impact of clinical and individual characteristics on HRQoL among cancer survivors. These findings advocate for an enhanced Bangladeshi cancer patient care model through timely interventions or programs, early detection or diagnosis, tailored treatments, and the promotion of physical activity to bolster HRQoL outcomes.

Facial Filler in Facial Paralysis: A Prospective Case Study and Multidimensional Assessment.

Background: Facial filler is emerging as a nonsurgical alternative for addressing static asymmetry in facial paralysis (FP). Objectives: To elucidate the patient experience for facial filler and to facilitate preprocedure counseling and education. Materials and Methods: Patients receiving hyaluronic acid filler for FP at a tertiary academic medical center were prospectively recruited. Primary outcomes included patient-reported pain, facial symmetry (on a visual analog scale), and the results of quality-of-life surveys (FACE-Q satisfaction with facial appearance [SFA], FACE-Q psychosocial distress [PSD], Patient Health Questionnaire-9 [PHQ-9], and Euro Quality of Life 5-Dimension [EQ5D]) preprocedure and at 1 and 14 days postprocedure. Results: Twenty patients (90% women, average age 55 ± 11) completed the study. Sites of filler included the cheek, lower lip, nasolabial fold, chin, and temple regions. Patients reported minimal pain at postprocedure days (PPDs) 1 and 14. Patient-perceived symmetry scores improved significantly (p < 0.0001), as did FACE-Q SFA and FACE-Q PSD scores (p < 0.0001, <0.0001) when comparing preprocedure with PPD 14. Depression, assessed by PHQ-9, and the anxiety/depression domain of EQ5D, decreased after treatment (p = 0.016, 0.014) but no change was observed in the other domains of EQ5D. Conclusion: Facial filler for FP can be performed with minimal morbidity (pain, impact on daily routine, and complications) and leads to improvements across multiple psychosocial domains.

#3990 PACE-CKD: HEALTH-RELATED QUALITY OF LIFE OF PATIENTS WITH CKD AND CAREGIVERS: RESULTS FROM A US SURVEY

Abstract Background and Aims The substantial mortality and morbidity burden of chronic kidney disease (CKD) is well described, with the highest burden associated with progression to end-stage kidney disease (ESKD), where kidney replacement therapy (dialysis or kidney transplantation) is indicated. CKD is known to have a detrimental effect on patient health-related quality of life (HRQoL). However, there is a lack of data comparing the impact of CKD on patient and caregiver HRQoL versus the general population. This study aimed to administer validated HRQoL instruments using a quantitative online survey to estimate the HRQoL of patients with CKD and their caregivers compared to the general population. Method A non-interventional survey enrolled adult patients with CKD and caregivers. Patients with a diagnosis of CKD for at least 3 months were included. ESKD was defined as patients with CKD stage 5 or receiving dialysis or a kidney transplant. Caregivers were required not to receive formal payment and must have cared for a CKD patient for a minimum of 1 hour a week in the previous 4 weeks. A general population cohort was also enrolled, matching key patient and caregiver demographic characteristics (e.g. age, sex, and area of residence). Patient and caregiver HRQoL were assessed using the EQ-5D-5L instrument. Caregiver HRQoL was also measured by the CarerQoL-7D carer-specific instrument. Results This analysis is based on 199 patients with CKD and 113 caregivers in the United States who were enrolled between June and July 2022. Patient and caregiver median age was 58 years and 38 years, respectively. There were 32.2% patients who were on dialysis, while 81.4% caregivers were caring for a patient on dialysis. Most dialysis patients (79.7%) were receiving treatment in a clinic or hospital, with 20.4% of patients receiving it at home. Caregivers typically cared for their parent (45.1%) or partner (25.7%) and their duties would most commonly include driving to/from medical appointments (89.4%). When comparing mean [SD] EQ-5D-5L index scores for patients with CKD with the general population, patients had 33.7% lower utility (0.63 [0.27] vs 0.95 [0.08]) and caregivers had 13.8% lower utility (0.81 [0.22]) vs 0.94 [0.11]) versus the general population. EQ-5D-5L index scores were lower in dialysis-dependent patients (0.59 [0.27]) versus non dialysis-dependent patients (0.65 [0.27]). Patients and caregivers reported problems across all EQ-5D domains (anxiety and depression, mobility, pain/discomfort, selfcare and usual activities) when compared to the general population, with anxiety and depression domains scoring highest. According to the CarerQoL-7D index, caregivers for patients with CKD had worse HRQoL than caregivers for other major illnesses, including hip fractures, breast cancer and dementia, according to published estimates [1–3]. Results for patients and caregivers in other countries (United Kingdom, Germany and Mexico) will also be presented at the congress. Conclusion This survey provides new evidence on the HRQoL burden of CKD, both for patients and their caregivers, compared to the general population. Patients with CKD and caregivers incurred substantial detriment to their HRQoL, which was driven by all EQ-5D-5L domains, particularly anxiety and depression. Evidence based policy interventions should aim to slow CKD progression to reduce the large societal burden to patients and their caregivers. Funding: This study was supported by AstraZeneca.

Self-reported quality of life before, during, and after pregnancy in women with CHD.

Adults with CHD are a growing patient group and childbirth is a relatively new phenomenon. EQ-5D is commonly used to measure health-related quality of life. We sought to investigate EQ-5D status before, during, and after pregnancy in women with CHD. We identified 128 pregnancies in 86 CHD women giving birth in Skåne County during 2009-2021. Repeated measures ANOVA was performed to test for differences between the five EQ-5D domains, EQ-VAS, and EQ-index over time points before, the second trimester, the third trimester, and after pregnancy. Mean age at estimated childbirth was 30.3 (± 4.7) years; 56.25% of births were vaginal deliveries and 43.75% were Caesarean sections. The cohort consisted of patients with double outlet right ventricle (4.7%), transposition (Mustard/Senning 2.3%, arterial switch 4.7%), aortic anomalies (19.5%), Fallot's anomaly (16.4%), single ventricle (3.9%), shunt lesions (11.7%), cardiomyopathies (4.7%), coronary anomalies (1.6%), arrythmias (0.8%), and valve lesions: aortic (19.5%), mitral (5.5%), and pulmonary (4.7%). The women reported significantly worse mobility (p = 0.007) and higher pain/discomfort (p = 0.049) at trimester 3 compared to before pregnancy. The women had lower EQ-5D index during trimester 3 compared to after pregnancy (p = 0.004). We saw worse mobility during Tri 2 comparing multiparity with primiparity (p = 0.046). Looking at delivery mode, we noted significantly higher anxiety/depression before pregnancy (p =0.023) in women that had a Caesarean section. In this study, women with CHD reported worse mobility and a higher pain level during Tri 3, although the overall health-related quality of life is acceptably high.

Long-term health-related quality of life after trauma with and without traumatic brain injury: a prospective cohort study

To purpose was to assess and compare the health-related quality of life (HRQoL) and risk of depression two years after trauma, between patients with and without traumatic brain injury (TBI) in a mixed Swedish trauma cohort. In this prospective cohort study, TBI and non-TBI trauma patients included in the Swedish Trauma registry 2019 at a level II trauma center in Stockholm, Sweden, were contacted two years after admission. HRQoL was assessed with RAND-36 and EQ-5D-3L, and depression with Montgomery Åsberg depression Rating Scale self-report (MADRS-S). Abbreviated Injury Score (AIS) head was used to grade TBI severity, and American Society of Anesthesiologists (ASA) score was used to assess comorbidities. Data were compared using Chi-squared test, Mann Whitney U test and ordered logistic regression, and Bonferroni correction was applied. A total of 170 of 737 eligible patients were included. TBI was associated with higher scores in 5/8 domains of RAND-36 and 3/5 domains of EQ-5D (p < 0.05). No significant difference in MADRS-S. An AIS (head) of three or higher was associated with lower scores in five domains of RAND-36 and two domains of EQ-5D but not for MADRS-S. An ASA-score of three was associated with lower scores in all domains of both RAND-36 (p < 0.05, except mental health) and EQ-5D (p < 0.001, except anxiety/depression), but not for MADRS-S. In conclusion, patients without TBI reported a lower HRQoL than TBI patients two years after trauma. TBI severity assessed according to AIS (head) was associated with HRQoL, and ASA-score was found to be a predictor of HRQoL, emphasizing the importance of considering pre-injury health status when assessing outcomes in TBI patients.

Toward the Definition of Patient-Reported Outcome Measurements in Hereditary Spastic Paraplegia.

Hereditary spastic paraplegias (HSPs) are a heterogeneous group of rare neurodegenerative diseases, characterized by a progressive spastic paraparesis. Currently, there is a HSP-specific clinician-reported outcome measure (CROM) called Spastic Paraplegia Rating Scale (SPRS). There are, however, no specific patient-reported outcome measures (PROMs) for HSP. In the present cohort study, we prospectively follow up a well-examined Austrian HSP cohort using validated rating scales and compared PROM with disease-specific and non-disease-specific CROM. Patients were recruited and followed up at the Center for Rare Movement Disorders, Innsbruck, Austria. CROM included the SPRS, Scale for the Assessment and Rating of Ataxia (SARA), Barthel Index (BI), and Mini-Mental State Examination (MMSE). PROM included the EQ-5D questionnaire and the Patient Health Questionnaire 9 (PHQ-9). Standardized response means (SRMs) were calculated for all scales at follow-up (FU) after 1 year. A total of 55 patients (36 males) with HSP were included in the study. FU was performed for 30 patients (21 males). Apart from females reporting more problems in the EQ-5D domain of anxiety and depression (p = 0.008), other clinician-reported outcomes (CROs) or patient-reported outcomes (PROs) did not differ significantly across sex. SPRS showed significant correlations with SARA (p < 0.001), mainly driven by the gait item, as well as the BI. Although SPRS did not correlate with EQ-5D visual analogue scale and PHQ-9 scores, several EQ-5D domains correlated significantly with SPRS. At FU, SPRS showed the highest responsiveness (SRM 1.11), followed by SARA (SRM 0.47). Neither MMSE nor PRO significantly increased at FU. In this study, we present an Austrian cohort of patients with HSP and a prospective study evaluating correlations of CRO and PRO as well as their progression. Demographics from our cohort are comparable with several other European cohort studies. Our data highlight the capabilities of the SPRS to show clinical progression and warrant consideration of ataxia rating scales such as SARA in HSP cohorts. We also show that the generic PROMs are not suitable to detect change in HSP, and thus, we propose to create a disease-specific PROM fully depicting the effect of HSP on the patients' lives.

Long-term Impact of Telehealth (Diabetes Tele Management System®) Intervention on Treatment Satisfaction, Quality of Life, and Clinical Outcomes in People with Type 2 Diabetes: A 15-year Retrospective Cohort Study

Abstract Background: Telehealth interventions have gained prominence as a promising strategy for improving medication adherence and patient outcomes among individuals with chronic illnesses. This study investigates the Diabetes Tele Management System (DTMS®), a comprehensive telemedicine-based program operating in Kerala, India, since 1997, to assess its impact on treatment satisfaction, quality of life (QoL), and clinical outcomes in individuals with type 2 diabetes (T2D). Methodology: A retrospective cohort design was employed, analyzing data from electronic medical records over a 15-year period. Participants were categorized into a treatment group (TG) enrolled in DTMS® and a control group (CG) receiving conventional care. Propensity score matching minimized confounding factors. Clinical parameters, diabetes-related complications, and treatment satisfaction were assessed. QoL was evaluated using the EuroQol five dimensions (EQ-5D) questionnaire. Results: Among 451 participants, the TG (n = 267) experienced significantly lower rates of micro-macrovascular complications compared to the CG (n = 184) (P &lt; 0.0001). TG participants showed improvements in glycated hemoglobin, fasting blood glucose, low-density lipoprotein cholesterol, high-density lipoprotein cholesterol, diastolic blood pressure, total cholesterol, and weight (P &lt; 0.05). QoL was notably better in the TG across all EQ-5D domains (P &lt; 0.001). Treatment satisfaction was also higher in the TG (P &lt; 0.001). Conclusion: The DTMS® telemedicine program demonstrated substantial benefits in terms of reduced complications, improved clinical parameters, enhanced QoL, and increased treatment satisfaction among people with T2D. This study underscores the potential of telehealth interventions, like DTMS®, in diabetes management, particularly in improving long-term outcomes and patient well-being.

Improved health-related quality of life after cardioneuroablation in patients with vasovagal syncope.

As the most common cause of syncope, vasovagal syncope (VVS) is mediated by parasympathetic overactivity and/or sympathetic withdrawal. Although catheter ablation of ganglionated plexi or cardioneuroablation has been used to treat VVS, its role in quality of life (QoL) has not been formally evaluated. The aim of this study was to demonstrate if this novel treatment results in improvement QoL of patients with VVS. Twenty-seven consecutive patients (age: 34 ± 14years, 51.8% male) with dominant cardioinhibitory type VVS were prospectively enrolled in the study. After confirmation of > 3s asystole on head-up tilt testing (HUT), all patients underwent cardioneuroablation. ECGs were obtained prior to procedure and at 12-month follow-up visit. HUTs were repeated 1month after cardioneuroablation procedures. QoL was assessed with the use of SF-36, EQ-5D, and EQ VAS questionnaires. ECG, HUT, and QoL data were available in all patients. At 12-month follow-up, heart rate on rest ECG significantly increased (from 74 ± 15 to 84 ± 14bpm, p = 0.003). Repeated HUTs were negative in 23 (85.1%) patients. All of 27 patients remained free of syncope. QoL assessed by SF-36 score significantly improved in postprocedural follow-up (92 ± 9 and 96 ± 11, p = 0.016). Similarly, significant improvements in mobility, self-care, and usual activity domains of EQ-5D were observed (mean scores of 3.0 ± 1.5 and 2.1 ± 1.3, p < 0.001; 1.3 ± 0.9 and 1.2 ± 0.6, p = 0.041; 1.7 ± 1.0 and 1.4 ± 0.8 respectively). EQ-VAS score also improved significantly (39 ± 24 to 77 ± 18, p < 0.001). Our findings suggest that cardioneuroablation may be associated with intermediate term improvement in QoL in patients with VVS.

P10-10 Technology-supported exercise may increase self-reported health status in people with residual movement impairments after neurological event

BackgroundAfter a neurological event (e.g. stroke) people are often restricted to a sedentary lifestyle due to chronic impairment. Their need for assistance to perform any form of physical activity (PA) is one factor that limits their PA and results in a negative impact on health. Rehabilitation technology, designed for gait rehabilitation during sub-acute rehabilitation, may be used to achieve the recommended levels of PA in people with gait impairments. However, it is unknown if there are effects on the quality of life resulting from such exercise regimen. Therefore, the aim of this study was to determine the effect of technology-supported exercise (TSE) on self-reported health status.MethodsTwelve people with severe residual gait impairment after a neurological event participated in the study. They performed TSE (with Lokomat, Andago or C-Mill) for three months (M3) with a minimum of 10 trainings per month. At baseline and M3, the following questionnaires were answered: EQ-5D-3L, WHODAS 2.0, patient global impression of scale (PGIC, only at M3). Wilcoxon-signed-rank-test was used to test for statistically significant differences between start and M3 (p > 0.05).ResultsThe median EQ-5D Visual Analog Scale (VAS) score at baseline was 60, which is lower than the population mean. The VAS of the EQ-5D showed significant improvements (median: 7.5 points). The median of the PGIC was ‘minimally improved’ while all other outcomes (EQ-5D domains and WHODAS) remained constant.ConclusionPrior to TSE, the self-rated health status was low. There is evidence, that people with residual gait impairment may benefit from continuous TSE by improving health status, as has been represented by the improvement of the EQ-5D VAS score. Most chosen questionnaires may not be sensitive enough to detect subtle changes, indicating that for this population more sensitive instruments may be needed. However, future research investigating the sensitivity of the questionnaires is advisable. In addition, the training period of three months might be too short to be effective. This study is still ongoing with the training period extended to six months and additional participants included which will provide more data about the effect of TSE on self-reported health status.

The impact of Hunner lesion-type interstitial cystitis/bladder pain syndrome on health-related quality of life and the effects of transurethral ablation.

Interstitial cystitis/bladder pain syndrome (IC/BPS) has a negative impact on quality of life. We compared health-related quality of life (HRQoL) of patients with IC/BPS with patients having other diseases using the EuroQol five-dimension (EQ-5D) and evaluated whether the HRQoL is improved after surgery. We compared EQ-5D of patients with Hunner lesion type IC/BPS with patients who had other diseases that cause chronic and severe pain including arthritis and cancer from a cross-sectional analysis of responses to the 2012-2016 Korea National Health and Nutrition Examination Survey. Changes in EQ-5D after transurethral coagulation (TUC) or resection (TUR) were measured in the IC/BPS participants. Compared to the EQ-5D index of normal population, patients with arthritis, cancer and IC/BPS had -0.07 (95% CI -0.07, -0.06), -0.01 (95% CI -0.02, -0.01), and -0.21 (95% CI -0.23, -0.20) lower scores, respectively. Patients with IC/BPS were 35.9, 9.24, and 9.05 times more likely to have "extreme problem" in pain/discomfort, anxiety/depression, and usual activities EQ-5D domains, respectively, than patients without arthritis/cancer. After TUC or TUR, EQ-5D index was 0.90 in the TUC group and 0.92 in the TUR group. IC/BPS patients have worse HRQoL than healthy individuals. However, after surgical treatment, HRQoL is restored to a level close to normal.

Quality of life and health status in older adults (≥65 years) up to five years following colorectal cancer treatment: Findings from the ColoREctal Wellbeing (CREW) cohort study.

Colorectal cancer (CRC) is common in older adults, with more than 70% of diagnoses in people aged ≥65 years. Despite this, there is a knowledge gap regarding longer-term outcomes in this population. Here, we identify those older people most at risk of poor quality of life (QoL) and health status in the five years following CRC treatment. CREW is a UK longitudinal cohort study investigating factors associated with health and wellbeing recovery following curative-intent CRC surgery. Participants completed self-report questionnaires pre-surgery, then at least annually up to five years. Longitudinal analyses explored the prevalence and pre-surgery risk factors of poor QoL (QLACS-GSS) and health status (EQ-5D: presence/absence of problems in five domains) in older (≥65 years) participants over five years. 501 participants aged ≥65years completed questionnaires pre-surgery; 45% completed questionnaires five years later. Oldest-old participants (≥80 years) reported poorer QoL (18% higher QLACS-GSS) and 2-4 times higher odds of having problems with mobility or usual activities, compared with the youngest-old (65-69 years) over follow-up. Baseline higher self-efficacy was significantly associated with better QoL (10-30% lower QLACS-GSS scores compared to those with low self-efficacy) and lower odds of problems in all EQ-5D domains. Adequate social support was significantly associated with better QoL (8% lower QLACS-GSS) and lower odds of problems with usual activities (OR = 0.62) and anxiety/depression (OR = 0.56). There are important differences in QoL and health status outcomes for the oldest-old during CRC recovery. CREW reveals pre-surgery risk factors that are amenable to intervention including self-efficacy and social support.

Quality of life among patients with 4 to 10 brain metastases after treatment with whole-brain radiotherapy vs. stereotactic radiotherapy: a phase III, randomized, Dutch multicenter trial.

Stereotactic radiotherapy (SRT) is an attractive treatment option for patients with brain metastases (BM), sparing healthy brain tissue and likely controlling local tumors. Most previous studies have focused on radiological response or survival. Our randomized trial (NCT02353000) investigated whether quality of life (QoL) is better preserved using SRT than whole-brain radiotherapy (WBRT) for patients with multiple BM. Recently, we published our trial's primary endpoints. The current report discusses the study's secondary endpoints. Patients with 4 to 10 BM were randomly assigned to a standard-arm WBRT (20 Gy in 5 fractions) or SRT group (1 fraction of 15-24 Gy or 3 fractions of 8 Gy). QoL endpoints-such as EQ5D domains post-treatment, the Barthel index, the European Organisation for Research and Treatment of Cancer (EORTC) questionnaires, and the neurocognitive Hopkins Verbal Learning Test-were evaluated. Due to poor accrual resulting from patients' and referrers' preference for SRT, this study closed prematurely. The other endpoints' results were published recently. Twenty patients were available for analysis (n=10 vs. n=10 for the two groups, respectively). Significant differences were observed 3 months post-treatment for the mobility (P=0.041), self-care (P=0.028), and alopecia (P=0.014) EQ5D domains, favoring SRT. This self-care score also persisted compared to the baseline (P=0.025). Multiple EORTC categories reflected significant differences, favoring SRT-particularly physical functioning and social functioning. For patients with multiple BM, SRT alone led to persistently higher QoL than treatment with WBRT. ClinicalTrials.gov, NCT02353000.

Health-related quality of life in T1DM patients after high-dose cholecalciferol supplementation: data from a pilot clinical trial

BackgroundType 1 Diabetes Mellitus (T1DM) impacts health-related quality of life (HRQoL). Cross-sectional studies suggest that low levels of vitamin D (VD) may impair HRQoL, however, the effect of VD supplementation on quality of life in T1DM patients has not yet been clarified. Our study evaluated the effects of high-dose VD supplementation on HRQoL in T1DM.MethodsWe performed a prospective study with 64 patients receiving cholecalciferol (4000 IU/day for patients with 25-OH-vitamin D [25(OH)D] between 30 and 60 ng/mL, and 10,000 IU/day for those with 25(OH)D below 30 ng/mL) for 12 weeks, as part of a research protocol. HRQoL was assessed with EuroQol instruments (EQ-5D and EQ-VAS).ResultsThere was an improvement in global EQ-5D index, and analysing specifically the EQ-5D domains, we observed an improvement in mobility (1.3 ± 0.6 versus 1.1 ± 0.3, p < 0.01). Evaluating possible outcome influencing variables, we detected a reduction in albuminuria at the end of the trial, without changes in BMI, lipids, blood pressure, glycemic control and insulin doses. We found correlations between final albuminuria and the dimensions: mobility (r = 0.6; p < 0.01), personal care (r = 0.7; p < 0.01), pain and discomfort (r = 0.6; p < 0.01) and habitual activities (r = 0.6; p < 0.01), suggesting an association between albuminuria reduction and the impact of VD supplementation on HRQoL.ConclusionOur data showed that high doses of cholecalciferol supplementation can improve HRQoL in patients with T1DM, and the reduction of albuminuria seems to be an important factor in this context.Trial registration: (ISRCTN32601947), 03/06/2017 retrospectively registered.

Use of perioperative treatment (tx) among patients (pts) undergoing radical resection (RR) for muscle-invasive urothelial cancer (MIUC) in France, Germany, Italy, Spain, the United Kingdom, the United States, Canada, China, and Japan.

467 Background: Cisplatin-based neoadjuvant chemotherapy (NAC) followed by RR is the standard of care in cisplatin-eligible pts with MIUC. Adjuvant chemotherapy (AC) with cisplatin-based tx may be offered to those not given NAC. The unmet need this survey tried to evaluate is the post-RR burden of disease, quality of life (QoL) and perioperative tx patterns among MIUC pts. Methods: Real-world descriptive data were drawn from Adelphi’s MIUC Disease-Specific Programme: A point-in-time survey conducted with clinical/medical oncologists/urologists and their pts in 9 countries between January and June 2021. Physicians completed a survey on their pts’ clinical characteristics and tx patterns, while pts voluntarily completed a series of patient-reported outcome measures. Results: Of 2178 pts (data provided by 320 physicians), 30% received NAC only, 26% received AC only, 38% received no NAC or AC tx, and 6% received both. 1744 pts had initial tumour in the bladder; 35% received NAC only, 24% AC only, 35% no NAC or AC tx, and 6% received both. Of 387 pts with upper-tract urothelial carcinoma (UTUC), 51% received no NAC/AC tx, 35% received AC only, and 12% NAC only. More pts with T3 disease received no NAC/AC tx (36%) or NAC (35%) than AC (24%). Of 734 pts with nodal disease, 36% received NAC only. Of all pts, 60% experienced symptoms at data abstraction: 50% in pts who received NAC only, 71% in pts who received AC only and 82% in pts of those who received both. Pts reported similar EQ-5D-5L utility index scores (mean = 0.86; range: 0.84 [AC only] to 0.89 [NAC only]). Overall, feeling pain (40%) and stress (39%) were the EQ-5D domains with the worst scores. Pts who received AC only reported nominally lower EQ-5D visual analogue scale scores (71.11) compared with pts who received no NAC/AC (73.17) or pts who received NAC only (75.05). EORTC QLQ-C30 Global Health Status scores were 60.0 in pts who received AC only, 64.1 in pts who received NAC only or no NAC/AC, and 66.7 for pts who received both NAC and AC. Conclusions: Nearly 40% of pts remain untreated in either NAC or AC setting in 9 countries. A higher proportion of pts with UTUC go untreated. AC was more frequently used in UTUC vs BC pts; and in pts with Tis. NAC was implemented more frequently in pts T3 disease and in those with N+ disease. Pts who received AC appear to have nominally worse QOL and more symptoms, further demonstrating the need for efficacious adjuvant tx that does not decrease post-RR QoL.[Table: see text]

Health-related quality of life after thrombectomy in young-onset versus older stroke patients: a multicenter analysis

BackgroundInformation is lacking on self-reported health-related quality of life (HRQoL) as a complementary outcome measure in addition to the modified Rankin scale (mRS) in young patients with ischemic stroke after...

Health-related QoL and fatality in CHD patients: findings from a national cohort study, Turkey

Abstract Background Although strong association between self-reported health and coronary heart disease (CHD) exists, health related quality of life (HRQOL) has not been conceptualized as a predictor for fatality in CHD patients. We investigated whether HRQOL may predict the risk of death in six years in CHD patients. Methods There were overall, 614 of CHD cases in the national representative Chronic Diseases and Risk Factors Survey in Turkey, 2011. Baseline self-reported health data on EuroQol- 5 Dimension (EQ-5D) and a Visual Analog Scale (VAS) were used from the same survey. The cases were followed-up for all-cause and CHD specific fatality (ICD-10 diagnostic codes: I20- I25) through electronic health records by 2017. Kaplan Meier and Cox regression models were used for data analysis. Age and sex adjusted HRs [aHR 95% CIs] were estimated for having some or extreme problems in EQ5D domains and VAS. Results Median follow-up years (IQR) was 6.46 (6.39-6.47). The number of deaths from all causes and CHD were 103 and 26, respectively. Age and sex adjusted HRs for all causes fatality were statistically significant for some or extreme problems in usual activities [2.48 (95%CI 1.60-3.83)], in pain/comfort [2.28 (95% CI 1.44-3.62)], in self-care [2.25 (95% CI 1.46-3.46)] and in mobility [1.85 (95% CI 1.16-2.96)]. Age and sex adjusted HRs for CHD specific fatality were statistically significant for some or extreme problems in self-care [3.45 (95% CI 1.48-8.07)] and pain/comfort [3.07(95% CI 1.19-7.93)]. VAS was negatively associated with overall fatality. Conclusions In CHD cases, poor self reported health might be a good indicator for overall and CHD specific fatality in 6 years. Especially having some or extreme problems in selfcare and pain/comfort are closely related with overall fatality as well as CHD specific fatality. Key messages There are strong relationships between HRQOL and all causes fatality as well as CHD specific fatality. Poor self- reported health might be a predictor for overall and CHD specific fatality in CHD cases.