BACKGROUND: Health-related quality of life (HRQL) has become an important outcome parameter in cardiology. The MOS 36-ltem Short-Form Health Survey (SF-36) and the PROMIS-29 are two widely used generic measures providing composite HRQL scores. The domains of the SF-36, a well-established instrument utilized for several decades, can be aggregated to physical (PCS) and mental (MCS) component summary scores. Alternative scoring algorithms for correlated component scores (PCSc and MCSc) have also been suggested. The PROMIS-29 is a newer but increasingly used HRQL measure. Analogous to the SF-36, physical and mental health summary scores can be derived from PROMIS-29 domain scores, based on a correlated factor solution. So far, scores from the PROMIS-29 are not directly comparable to SF-36 results, complicating the aggregation of research findings. Thus, our aim was to provide algorithms to convert PROMIS-29 data to well-established SF-36 component summary scores.
METHODS: Data from n = 662 participants of the Berlin Long-term Observation of Vascular Events (BeLOVE) study were used to estimate linear regression models with either PROMIS-29 domain scores or aggregated PROMIS-29 physical/mental health summary scores as predictors and SF-36 physical/mental component summary scores as outcomes. Data from a subsequent assessment point (n = 259) were used to evaluate the agreement between empirical and predicted SF-36 scores.
RESULTS: PROMIS-29 domain scores as well as PROMIS-29 health summary scores showed high predictive value for PCS, PCSc, and MCSc (R2 ≥ 70%), and moderate predictive value for MCS (R2 = 57% and R2 = 40%, respectively). After applying the regression coefficients to new data, empirical and predicted SF-36 component summary scores were highly correlated (r > 0.8) for most models. Mean differences between empirical and predicted scores were negligible (|SMD|<0.1).
CONCLUSIONS: This study provides easy-to-apply algorithms to convert PROMIS-29 data to well-established SF-36 physical and mental component summary scores in a cardiovascular population. Applied to new data, the agreement between empirical and predicted SF-36 scores was high. However, for SF-36 mental component summary scores, considerably better predictions were found under the correlated (MCSc) than under the original factor model (MCS). Additionally, as a pertinent byproduct, our study confirmed construct validity of the relatively new PROMIS-29 health summary scores in cardiology patients.

UNASSIGNED: The Surprise Question (SQ) is a common method aimed at identifying frail patients who need serious illness conversations to integrate a palliative approach. However, little is known about whether the SQ identifies patients on hemodialysis who perceive that they are declining or have low health-related quality of life (HRQoL)-important aspects when considering the need for serious illness conversations.
UNASSIGNED: To explore how nurses and physicians\' responses to the SQ are associated with patients\' self-reported HRQoL.
UNASSIGNED: Cross-sectional study.
UNASSIGNED: In total, 282 patients on hemodialysis were included.
UNASSIGNED: One nurse and one physician responded to the SQ for each patient. The patient-reported HRQoL was measured with the RAND 36-Item Health Survey 1.0 (RAND-36) and the EuroQual vertical visual analogue scale (EQ-VAS) from the EuroQual-5 Dimension Questionnaire (EQ-5D).
UNASSIGNED: Nurses\' responses \"no, not surprised\" to the SQ were associated with patient-reported worsened health compared to one year ago (RAND-36), and lower perceived overall health (EQ-VAS). Physicians\' responses \"no, not surprised\" were associated with lower overall health and lower physical functioning. Patient-reported pain, general health, fatigue, and emotional and social aspects were not associated with responses to the SQ.
UNASSIGNED: The findings indicate that the SQ identifies patients on hemodialysis who report low overall health and low physical functioning. However, the SQ did not identify patients who reported pain, emotional problems, or fatigue, which are also important aspects to consider in identifying needs for serious illness conversations, symptom management, and to be able to integrate a palliative approach.

OBJECTIVE: To investigate Health Related Quality of Life (HRQoL) features of long survivors after radical cystectomy (RC) compared to healthy population (HP) control.
METHODS: Patients with cT2-4/N0/M0 or Bacillus Calmette-Guérine (BCG) failure high-grade non-muscle-invasive bladder cancer (NMIBC) undergoing RC and ileal Orthotopic Neobladder (iON) from 2010 to 2015 were enrolled in \"BCa cohort\". Patients aged ≥ 18 yrs old, with no previous diagnosis of BCa or any genitourinary cancer disease were included from General Practitioner outpatients and enrolled in \"HP cohort\". A 1:1 propensity score matched (PSM) analysis was performed, and HRQoL outcomes were collected according to European Organization for Research and Treatment of Cancer (EORTC), and generic (QLQ-C30) questionnaires.
RESULTS: A total of 401 patients were enrolled in the study, 99 and 302 in BCa and HP cohorts, respectively. After applying 1:1 PSM analysis 67 patients were included for each group. Analysis of self-reported HRQoL outcomes described a better HRQoL in BCa cohort. Particularly, in the long run patients receiving RC and iON significantly experienced higher global health-status/QoL (p < 0.001), emotional (p = 0.003) and cognitive functioning (p < 0.001) than HP cohort, providing a significantly lower impairment in terms of fatigue (p = 0.004), pain (p = 0.004), dyspnea (p = 0.02) and insomnia (p = 0.005).
CONCLUSIONS: Long survivors after RC and iON seems to have a major awareness of self-reported HRQoL compared to HP control group.

BACKGROUND: People with secondary progressive multiple sclerosis (pwSPMS) experience increasing disability, which impacts negatively on their health-related quality of life (HRQoL). Our aims were to assess the impact of secondary progressive multiple sclerosis (SPMS) on functional status and HRQoL and describe the clinical profile in this population.
METHODS: DISCOVER is an observational, cross-sectional, multicenter study with retrospective data collection in real-world clinical practice in Spain. Sociodemographic and clinical variables, functional and cognitive scales, patient-reported outcomes (PROs), and direct healthcare, and non-healthcare and indirect costs were collected.
RESULTS: A total of 297 evaluable pwSPMS with a EDSS score between 3-6.5 participated: 62.3 % were female and 18.9 % had active SPMS. At the study visit, 77 % of them presented an Expanded Disability Scale Score (EDSS) of 6-6.5. Nearly 40 % did not receive any disease-modifying treatment. Regarding the working situation, 61.6 % were inactive due to disability. PROs: 99.3 % showed mobility impairment in EuroQoL-5 Dimensions-5 Levels, and about 60 % reported physical impact on the Multiple Sclerosis Impact Scale-29. Fatigue was present in 76.1 %, and almost 40 % reported anxiety or depression. The Symbol Digit Modalities Test was used to assess cognitive impairment; 80 % of the patients were below the mean score. Participants who presented relapses two years before and had high EDSS scores had a more negative impact on HRQoL. PwSPMS with a negative impact on HRQoL presented a higher cost burden, primarily due to indirect costs.
CONCLUSIONS: PwSPMS experience a negative impact on their HRQoL, with a high physical impact, fatigue, cognitive impairment, and a high burden of indirect costs.

A global rise in the prevalence of patients with chronic kidney disease (CKD) with end-stage kidney disease (ESKD) has led to a considerable and increasing burden to health systems, patients, and society. Sodium-glucose cotransporter 2 (SGLT2) inhibitors are proven to reduce incidence of cardio-renal outcomes, including onset of ESKD. Recent post hoc analyses of SGLT2 inhibitor trials extrapolate substantial delays in the average time to ESKD over a patient\'s lifetime. In this article, we explore the possible real-world effects of such a delay by considering the available evidence reporting outcomes following onset of ESKD. From the patient perspective, a delay in reaching ESKD could substantially improve health-related quality of life and result in additional life years without the need for kidney replacement therapies, a target relevant to all CKD subpopulations. Furthermore, should a patient initiate dialysis at an older age as a result of CKD progression, the time spent in receipt of dialysis, and therefore associated healthcare costs, may also be reduced. A delay in progression may also lead to changes in the management of ESKD, such as increased election of conservative care in preference to dialysis, particularly in elderly populations. For younger patients with CKD, those who reach ESKD while employed face considerable work impairment and productivity loss, as may families and care partners of working age. Therefore, a delay to the onset of ESKD will reduce the proportion of their working lives affected by productivity losses or unemployment due to medical reasons. In conclusion, optimised treatment of CKD may lead to a shift in treatment options, but proper and timely implementation is essential for the realisation of improved outcomes.

OBJECTIVE: Juvenile idiopathic arthritis (JIA) is the most common type of arthritis among children. It can cause joint pain and permanent physical damage, which affects mobility and daily activities. The EQ-5D-Y-3L self-report version has been validated in JIA, but the validity of EQ-5D-Y-5L remains unknown. We examined the psychometric properties of the EQ-5D-Y-5L parent-proxy version among children with JIA.
METHODS: We used data from the Understanding Childhood Arthritis Network Canadian-Dutch collaboration study cohort, including patients with new-onset JIA, and those starting or stopping biologics. Clinical data and the parent-proxy version of the childhood health assessment questionnaire (CHAQ) and EQ-5D-Y-5L were collected. We evaluated the ceiling and floor effect; convergent and divergent validity using Spearman\'s rank correlation; known-group validity using one-way ANOVA (Analysis of Variance) and effect size; and informativity using Shannon\'s evenness index.
RESULTS: 467 patient visits representing 407 patients were analyzed. The EQ-5D-Y-5L had no ceiling/floor effect. The EQ-5D-Y-5L showed good convergent (e.g., EQ-5D-Y-5L pain/discomfort dimension vs. CHAQ pain index (Spearman\'s r = 0.74, 95% confidence interval (C.I.): 0.69-0.79)), divergent (e.g., EQ-5D-Y-5L pain/discomfort dimension vs. CHAQ eating dimension (Spearman\'s r = 0.19, 95% C.I.: 0.09-0.29)) and known-group validity (e.g., mean EQ-5D-Y-5L level summary score for patients with inactive versus active disease status, 6.34 vs. 10.52 (p < 0.001, effect size = 1.20 (95% C.I.: 0.95-1.45)). Shannon\'s evenness index ranged from 0.52 to 0.88, suggesting most dimensions had relatively even distributions.
CONCLUSIONS: In this patient sample, EQ-5D-Y-5L parent-proxy version exhibited construct validity and informativity, suggesting the EQ-5D-Y-5L can be used to measure the quality of life of children with JIA.
Juvenile idiopathic arthritis is the most common type of arthritis affecting children. It can cause pain and permanent physical damage to joints and affects mobility and daily activities. While there is no cure yet, new therapies like biologics are effective. However, biologics are expensive and can have side effects. To decide when is the best time to use these biologics, we need to understand their cost and impact on patients. EQ-5D-Y-5L is a common tool to measure how the disease affects a patient’s life. It is unclear whether EQ-5D-Y-5L works well for patients with juvenile idiopathic arthritis. In this study, we compared the EQ-5D-Y-5L to another tool that measures how the illness impacts functional ability. We looked to see if the EQ-5D-Y-5L could tell the difference between children who were more or less sick. We also assessed whether the EQ-5D-Y-5L has the ability to describe patients with different severity in health status. This study indicates that the EQ-5D-Y-5L is a good tool to measure the health of patients with juvenile idiopathic arthritis. Findings from this study support the use of the EQ-5D-Y-5L among this patient population in future clinical trials and research studies.

Objectives: This study aims to investigate the mediating effects of positive psychological capital (both as compound PsyCap and separate resources) in the relationship between social support and the two components of HRQoL: physical and mental health. Method: We conducted the current cross-sectional study on a sample of 319 participants (114 male; 205 female) aged 65 to 90. Results: The results indicated significant positive associations between social support, PsyCap, physical health and mental health. Compound PsyCap fully mediated the relationship between perceived social support and physical/mental health. Hope and optimism positively predicted physical health, while the same PsyCap resources, along with self-efficacy positively predicted mental health. Discussion: The retirees that perceived increased social support presented higher levels of PsyCap, which in turn increased their physical and mental health. Our results highlighted some new explanatory mechanisms regarding the relationships between variables that affect health-related quality of life among older adults.

The newfound knowledge in type 2 diabetes (T2D) during the past decade for the sodium-glucose cotransporter-2 inhibitors (SGLT-2i) and glucagon-like peptide-1 receptor agonists (GLP-1RA) is wealthy in favorable results for key patient-important outcomes including morbidity, mortality and health-related quality of life (HRQoL). The SGLT-2i and GLP-1RA offer cardiovascular and renal protection beyond their glucose lowering effect, reduce body weight and hypoglycemia and improve diabetes-related distress, physical function and HRQoL. Along with the fixed-ratio combinations of basal insulin/GLP-1RA, they make feasible a regimen simplification and de-escalation from high dose and multiple injections of insulin reducing treatment burden. Besides cardiorenal risk reduction, the SGLT-2i and GLP-1RA reduce the incidence of depression, cognitive decline, respiratory disease, gout, arrhythmias and other co-occurring conditions of T2D, namely multimorbidity, which frequently complicates T2D and adversely affects HRQoL. The alleviation of multimorbidity by the pleiotropic effects of the SGLT-2i and GLP-1RA, could improve patients\' HRQoL. The use of the SGLT-2i and GLP-1RA should be increased within a shared decision-making in which they are reframed as cardiorenal risk-reducing medications with the potential to lower blood glucose. By improving outcomes that patients may highly perceive and value, the SGLT-2i and GLP-1RA may facilitate the contemporary person-centered management of T2D.

UNASSIGNED: The aim of this study is to investigate the clinical outcomes of transforaminal lumbar endoscopic discectomy (TLED) in patients with L5-S1 lumbar disc herniation (LDH).
UNASSIGNED: Seventy-five consecutive individuals with diagnosed foraminal/extraforaminal L5-S1 LDH were included in this study. All patients underwent TLED, being subsequently evaluated in a 2-year follow-up period. Assessment was performed preoperatively and at 6 weeks and 3, 6, 12 and 24 months postoperatively. Visual Analogue Scale (distinctly applied for lower limb - VAS-LP and low back - VAS-BP pain) and Short-Form 36 (SF-36) Medical Health Survey Questionnaire were implemented to assess pain and health-related quality of life (HRQoL) of enrolled individuals, respectively.
UNASSIGNED: No major perioperative complications were observed. Recorded values of all studied indices were demonstrated to feature a clinically and statistically significant amelioration at 6 weeks, presenting lesser improvement at 3 months with subsequent stabilisation. VAS-LP and VAS-BP values were displayed to reach a plateau in 6 months postoperatively, whereas all parameters of SF-36 continued to present a statistically significant improvement until the end of follow-up at 2 years.
UNASSIGNED: TLED represent a safe and efficient technique in terms of diminishing perceived pain and improving HRQoL in patients with L5-S1 LDHs. However, specific patient- and technique-related circumstances on the ground of low surgical experience may limit its effectiveness in these patients.

BACKGROUND: The DV-QoL is a 17-item questionnaire measuring health-related quality of life in patients affected by symptomatic diverticular disease, covering four domains: physical symptoms, concerns, feelings, and behavioral changes. Given the lack of a diverticulitis-specific questionnaire to be used for German-speaking patients, we prospectively validated the German version of the DV-QoL.
METHODS: German-speaking patients with CT-confirmed history of recurrent diverticular disease admitted to a Swiss surgical department completed the German version of the DV-QoL, along with short form-36 (SF-36) and the Gastrointestinal Quality of Life Index (GIQLI). Reliability was examined using exploratory and confirmatory factor analysis, a Martin-Loef test, and Cronbach\'s alpha. For convergent validity testing, correlations were calculated with the GIQLI and SF-36. Discriminant validity tests included age and gender.
RESULTS: We included 121 patients, of whom 77 were admissions for elective surgery and 44 presented with acute diverticulitis treated conservatively. The DV-QoL\'s total score showed good correlations with the GIQLI (r = - 0.77) and its subscales (r = - 0.76 to - 0.45), as well as with the SF-36\'s subscales (r = - 0.30 to - 0.57). No relationships were found with age or gender (p < 0.05). The Cronbach\'s alpha coefficient was 0.89 over all items and 0.69, 0.90, 0.78, and 0.77 for the four separated domains (physical symptoms, cognitions/concerns, feelings, and behavioral changes, respectively). A nonsignificant Martin-Loef test indicated unidimensionality (p = 1), further supported by the exploratory factor analysis, which showed an item information sharing of 65%.
CONCLUSIONS: The German DV-QoL questionnaire can be used as a valid and reliable disease-specific measure for quality of life in patients with recurrent diverticular disease.