Generic Health-related Quality Of Life Research Articles

Barrett Esophagus: Quality of life and factors associated with illness perception

BackgroundHealth‐related Quality of life (HRQoL) in patients with Barrett's esophagus (BE), a premalignant condition, may be influenced by gastroesophageal reflux disease (GERD) symptoms and the risk of developing esophageal adenocarcinoma.MethodsWe aim to investigate HRQoL in non‐dysplastic Barrett Esophagus (NDBE) patients, identify factors associated with a negative illness perception of the diagnosis BE and compare outcomes between patients treated in a specialized BE center with non‐expert centers. In this multi‐center cross‐sectional study, HRQoL of NDBE patients were assessed using the Short Form 36, Hospital Anxiety and Depression Scale, Cancer worry Scale, and Reflux Disease Questionnaire. A multivariable, linear regression analysis was conducted to assess factors associated with illness perception (Illness perception scale) of the BE diagnosis. Outcome parameters of patients from expert centers were compared to non‐expert centers.ResultsA total of 859 NDBE patients (mean age 63.6% and 74.5% male), of which 640 from BE expert centers were included. BE patients scored similar or higher means (i.e. better) on generic HRQoL in comparison with a Dutch norm population. The multivariable regression model showed that cancer worry, GERD symptoms, signs of anxiety and depression, and female gender were associated with a negative illness perception of BE. GERD symptoms were reported in the minority (22.4%) of BE patients. Levels of anxiety symptoms were comparable to a Dutch norm population (mean 3.7 vs. 3.9 p 0.183) and lower for depression symptoms (mean 6.8 vs. 7.6 p < 0.001). Overall, there were no differences found on outcomes between expert centers and non‐expert centers.ConclusionNDBE patients scored similar or better on generic HRQoL, anxiety and depression than an age and gender matched norm population. The presence of cancer worry, gastrointestinal symptoms, anxiety and depression, and female gender are factors associated with a negative illness perception of the diagnosis BE.

Estimating the association between physical activity and health-related quality of life in individuals with multiple sclerosis

BackgroundHigher levels of total physical activity (PA) are associated with better health-related quality of life (HRQOL) in individuals with multiple sclerosis (MS). The benefits of PA across the activity continuum have not been well-studied. The goal of this study was to compare the associations between total PA, strenuous PA, moderate PA, and mild PA and HRQOL in a large cohort of individuals with MS using both generic and neurologic disease-specific questionnaires. Longitudinal changes in PA and HRQOL over two years were also examined MethodsSubjects enrolled in SysteMS completed the Godin Leisure Time Exercise Questionnaire (GLTEQ) to measure PA. Subjects also completed generic (SF-36) and neurologic disease-specific (NeuroQoL) HRQOL measures. GLTEQ and HRQOL measures were administered at baseline and 24 months. The associations between the GLTEQ total leisure activity (TLA), strenuous PA, moderate PA and mild PA and scores on NeuroQoL and SF-36 were estimated using Spearman's correlation coefficient and partial Spearman's correlation coefficient adjusting for age, sex and Expanded Disability Status Scale (EDSS) measured by a provider. To further investigate the associations between mild PA and HRQOL measures, the associations between mild PA and HRQOL were estimated in participants who reported no moderate or strenuous PA in the last week. The changes in GLTEQ TLA scores and each component score were compared to the changes in NeuroQoL and SF-36 over 24 months using Spearman's correlation coefficient and partial Spearman's correlation coefficient adjusting for age, sex and EDSS. ResultsStatistically significant weak correlations were observed between GLTEQ TLA and NeuroQoL and SF-36 domains, with higher levels of TLA being associated with better HRQOL outcomes. After adjusting for age, sex and EDSS, all correlations were attenuated. Strenuous and moderate levels of PA were similarly associated with many HRQOL outcomes, but mild PA was only weakly correlated with NeuroQoL Lower Extremity Function. There was limited change in PA over 24 months. In a subgroup of participants who reported mild PA, but no moderate or strenuous PA, there were no significant associations with NeuroQoL or SF-36 domains at baseline, but increases in mild PA over two years were moderately associated with improvement on NeuroQoL Upper Extremity Function and SF-36 Mental Health and Mental Component Summary. ConclusionThere were weak associations between TLA and HRQOL across a wide range of HRQOL variables. In addition, both strenuous PA and moderate PA were weakly associated with many HRQOL outcomes, but mild PA was only associated with lower extremity function. Increases in mild PA in a subgroup of individuals who reported no strenuous or moderate PA at baseline were associated with improvements in HRQOL at 24 months. These findings suggest that programs aimed at increasing PA across the activity continuum may lead to improvements in multiple areas of HRQOL in individuals with MS.

Mental and physical health-related quality of life in patients with recurrent patellar dislocations—a generic and disease-specific quality of life questionnaire assessment

PurposeThere is a paucity of quality of life (QoL) assessments in studies evaluating patients treated for recurrent lateral patellar dislocation (LPD). The primary aim of this study was to investigate whether mental well-being is impaired in patients with chronic (recurrent) LPD and, if so, to assess whether the mental health-related QoL dimension improves equivalently to the physical-related QoL dimension after successful surgical treatment.MethodsThirty-eight patients with recurrent LPD over a mean course of the disease of 4.7 ± 3.9 years (1—18 years) prior to surgery were included. Generic health-related QoL (HRQoL) (Short Form 36; SF-36) and disease-specific QoL (Banff Patella Instability Instrument 2.0; BPII 2.0) were assessed preoperatively and after a mean follow-up of 3.5 ± 0.8 years (2 – 5 years) postoperatively.ResultsUntreated LPD significantly impacted the physical dimension of patients’ generic HRQoL and their disease-specific QoL. When compared to age-equivalent normative data sets, the mental HRQoL dimension was not reduced prior to operative treatment but increased during the follow-up period. Surgical treatment normalized the physical dimension of patients’ generic HRQoL and significantly improved their disease-specific QoL. However, BPII 2.0 values remained reduced, albeit patellae were successfully stabilized.ConclusionThe results of this study indicate that patients with recurrent LPD are generally in good mental health, although physical impairment is striking. Notwithstanding that surgery prevented further dislocations and normalized the generic HRQoL, the disease-specific QoL remained reduced as far as this can be interpreted without population-based data.Level of evidenceLevel IV; Retrospective case series.

Patient-Reported Outcome Measures for Health-Related Quality of Life in Patients With Acne Vulgaris

Multiple patient-reported outcome measures (PROMs) for health-related quality of life (HRQoL) exist for patients with acne. However, little is known about the content validity and other measurement properties of these PROMs. To systematically review PROMs for HRQoL in adults or adolescents with acne. Eligible studies were extracted from PubMed and Embase (OVID). Full-text articles published in English or Spanish on development, pilot, or validation studies for acne-specific, dermatology-specific, or generic HRQoL PROMs were included. Development studies included original development studies, even if not studied in acne patients per Consensus-Based Standards for the Selection of Health Measurement Instruments (COSMIN) recommendations. If a study included several diagnoses, the majority (ie, over 50%) of patients must have acne or acne-specific subgroup analyses must be available. Abstract and full-text screening was performed by 2 independent reviewers. Two independent reviewers assessed study quality applying the COSMIN checklist and extracted and analyzed the data. For each distinctive PROM, quality of evidence was graded by measurement property. PROM properties (target population, domains, recall period, development language), PROM development and pilot studies, content validity (relevance, comprehensiveness, comprehensibility), and remaining measurement properties (structural validity, internal consistency, cross-cultural validity, reliability, measurement error, criterion validity, construct validity, and responsiveness). Quality of evidence was assigned for each measurement property of included PROMs. An overall recommendation level was assigned based on content validity and quality of the evidence of measurement properties. We identified 54 acne PROM development or validation studies for 10 acne-specific PROMs, 6 dermatology-specific PROMs, and 5 generic PROMs. Few PROMs had studies for responsiveness. The only acne-specific PROMs with sufficient evidence for content validity were the CompAQ and Acne-Q. Based on available evidence, the Acne-Q and CompAQ can be recommended for use in acne clinical studies. Two PROMs can currently be recommended for use in acne clinical studies: the Acne-Q and CompAQ. Evidence on content validity and other measurement properties were lacking for all PROMs; further research investigating the quality of remaining acne-specific, dermatology-specific, and generic HRQoL PROMs is required to recommend their use.

Postoperative morbidity and health-related quality of life in children with delayed reconstruction of esophageal atresia: a nationwide Swedish study

BackgroundIn 10–15% of children with esophageal atresia (EA) delayed reconstruction of esophageal atresia (DREA) is necessary due to long-gap EA and/or prematurity/low birth weight. They represent a patient subgroup with high risk of complications. We aimed to evaluate postoperative morbidity and health-related quality of life (HRQOL) in a Swedish national cohort of children with DREA.MethodsPostoperative morbidity, age-specific generic HRQOL (PedsQL™ 4.0) and condition-specific HRQOL (The EA-QOL questionnaires) in children with DREA were compared with children with EA who had primary anastomosis (PA). Factors associated with the DREA group’s HRQOL scores were analyzed using Mann–Whitney U-test and Spearman’s rho. Clinical data was extracted from the medical records. Significance level was p < 0.05.ResultsThirty-four out of 45 families of children with DREA were included and 30 returned the questionnaires(n = 8 children aged 2–7 years; n = 22 children aged 8–18 years). Compared to children with PA(42 children aged 2–7 years; 64 children aged 8–18 years), there were no significant differences in most early postoperative complications. At follow-up, symptom prevalence in children aged 2–7 with DREA ranged from 37.5% (heartburn) to 75% (cough). Further digestive and respiratory symptoms were present in ≥ 50%. In children aged 8–18, it ranged from 14.3% (vomiting) to 40.9% (cough), with other digestive and airway symptoms present in 19.0–27.3%. Except for chest tightness (2–7 years), there were no significant differences in symptom prevalence between children with DREA and PA, nor between their generic or condition-specific HRQOL scores (p > 0.05). More children with DREA underwent esophageal dilatations (both age groups), gastrostomy feeding (2–7 years), and antireflux treatment (8–18 years), p < 0.05. Days to hospital discharge after EA repair and a number of associated anomalies showed a strong negative correlation with HRQOL scores (2–7 years). Presence of cough, airway infection, swallowing difficulties and heartburn were associated with lower HRQOL scores (8–18 years), p < 0.05.ConclusionsAlthough children with DREA need more treatments, they are not a risk group for postoperative morbidity and impaired HRQOL compared with children with PA. However, those with a long initial hospital stay, several associated anomalies and digestive or respiratory symptoms risk worse HRQOL. This is important information for clinical practice, families and patient stakeholders.

Implementation of patient-reported outcome measures in a heart transplant recipient registry: First step toward a patient-centered approach.

Heart transplantation (HTX) is a well-established treatment for suitable patients with end-stage heart failure, intended to prolong their survival and improve their health-related quality of life (HR-QoL). No international consensus exists, however, about the preferred patient-reported outcomes (PROs) and their measures (PROMs) for heart transplant recipients. The purpose of this study, the first step in a mixed-method investigation, was to review the PROMs developed and used in this population to identify the instruments for measuring HR-QoL and adherence to immunosuppressive medications most appropriate for heart transplant patients. This systematic search of the literature in the PubMed database focused on the assessment of PROMs for patients after HTX. We analyzed 66 studies with cross-sectional, 28 with longitudinal, and 2 with mixed-methods designs, as well as 6 literature reviews. These 102 articles used 115 different PROMs, which we categorized as generic HR-QoL instruments (n=19), domain-specific instruments (n=71), heart disease-specific instruments (n=9), and heart transplant-specific instruments (n=16). They cover different dimensions of HR-QoL and of immunosuppressive-drug experience, with diverse numbers of items, types of scales, and psychometric properties. Despite the abundance of instruments, PROMs for HTX can be improved to meet other patient expectations (i.e., by including important issues such as coping strategies, employment, social support, sexual relationships, spirituality, and beliefs), while paying attention to ease of use, reliability, validity, and the contribution of new technologies. A qualitative approach will complete our project of developing a patient-centered instrument for HTX patients.

The negative impact of chronic rhinosinusitis on the health-related quality of life among adult patients with cystic fibrosis

BackgroundWith improved survival in cystic fibrosis (CF) patients, it is crucial to evaluate the impact of chronic co-morbidities such as chronic rhinosinusitis (CRS). The objectives were 1) To determine the prevalence of CRS with a large series of CF patients 2) To evaluate the impact of CRS on the Health-Related Quality of Life (HRQoL) of CF patients and 3) To compare CRS-specific, CF-specific and general HRQoL instruments. MethodsConsecutive CF patients from the Toronto Adult Cystic Fibrosis Centre were recruited between March 2018 and January 2020. Participants completed the 22-Item Nasal Outcome Test (SNOT-22), Cystic Fibrosis Questionnaire-Revised for adolescents and adults over 14 years of age (CFQ-R), Cystic Fibrosis Quality of Life Evaluative Self-administered Test (CF-QUEST) and the 36-Item Short Form Survey (SF-36). HRQoL scores were correlated using Spearman's correlation coefficients. ResultsOut of 195 patients eligible for analysis, the prevalence of CRS with positive endoscopic findings was 42.6% (95% confidence interval: 35.5–49.8%). CRS patients reported significantly lower HRQoL with higher SNOT-22 scores and lower scores in the respiratory domain of CFQ-R and physical health domains of CF-QUEST and SF-36. The physical (ρ= −0.63) and mental (ρ= −0.66) domains of SF-36 and CF-QUEST (ρ= −0.76) had a strong correlation with SNOT-22. Higher scores of SNOT-22 nasal subdomains correlated with lower scores of SF-36, CFQ-R and CF-QUEST. ConclusionCRS is a prevalent co-morbidity of CF patients, which significantly reduces HRQoL. SNOT-22, CFQ-R, CF-QUEST and SF-36 were strongly correlated. Severity of sinonasal symptoms have a strong correlation with HRQoL in CF patients.

Health care utilization and outcomes in older adults after Traumatic Brain Injury: A CENTER-TBI study

IntroductionThe incidence of Traumatic Brain Injury (TBI) is increasingly common in older adults aged ≥65 years, forming a growing public health problem. However, older adults are underrepresented in TBI research. Therefore, we aimed to provide an overview of health-care utilization, and of six-month outcomes after TBI and their determinants in older adults who sustained a TBI. MethodsWe used data from the prospective multi-center Collaborative European NeuroTrauma Effectiveness Research in Traumatic Brain Injury (CENTER-TBI) study. In-hospital and post-hospital health care utilization and outcomes were described for patients aged ≥65 years. Ordinal and linear regression analyses were performed to identify determinants of the Glasgow Outcome Scale Extended (GOSE), health-related quality of life (HRQoL), and mental health symptoms six-months post-injury. ResultsOf 1254 older patients, 45% were admitted to an ICU with a mean length of stay of 9 days. Nearly 30% of the patients received inpatient rehabilitation. In total, 554/1254 older patients completed the six-month follow-up questionnaires. The mortality rate was 9% after mild and 60% after moderate/severe TBI, and full recovery based on GOSE was reported for 44% of patients after mild and 6% after moderate/severe TBI. Higher age and increased injury severity were primarily associated with functional impairment, while pre-injury systemic disease, psychiatric conditions and lower educational level were associated with functional impairment, lower generic and disease-specific HRQoL and mental health symptoms. ConclusionThe rate of impairment and disability following TBI in older adults is substantial, and poorer outcomes across domains are associated with worse preinjury health. Nonetheless, a considerable number of patients fully or partially returns to their preinjury functioning. There should not be pessimism about outcomes in older adults who survive.

Factors of family impact in a Swedish–German cohort of children born with esophageal atresia

BackgroundAfter repair of esophageal atresia (EA), childhood survivors commonly present with digestive and respiratory morbidity, and around 55% have associated anomalies. Although it is known that these problems can reduce health-related quality of life in children with EA, less is understood about the impact on the family. We aimed to identify factors related to family impact in children with EA.MethodsOne parent each of a child with EA (2–18 years) in 180 families from Sweden and Germany answered the PedsQL™ Family Impact Module as the dependent variable. The independent variables were the child’s parent-reported health-related quality of life as measured by PedsQL™ 4.0, current symptoms, school situation, and parent/family characteristics together with child clinical data from the medical records.ResultsStepwise multivariable regression analysis showed a multifactorial model of the total family impact scores (R2 = 0.60), with independent factors being the child’s overall generic health-related quality of life, school-absence ≥ 1/month, severe tracheomalacia, a family receiving carer’s allowance, and a parent with no university/college education, p < 0.05. Logistic regression analysis showed that an increased number of symptoms in the child the preceding 4 weeks lowered the family impact scores; however, the child’s feeding (R2 = 0.35) and digestive symptoms (R2 = 0.25) explained more in the variation of scores than the child’s respiratory symptoms (R2 = 0.09), p < 0.0001.ConclusionsFamily functioning may be a contributing factor to the maintenance of child health. The study findings suggest multifactorial explanations to family impact in children with EA, which are essential when optimizing the support to these families in clinical and psychosocial practice. Future research should explore experiences of family impact from all family members’ perspectives and multicenter studies are warranted to understand better the effectiveness of psychosocial-educational interventions to families of children with EA.

Health-related Quality of Life Instrument With 8 Items for Use in Patients With Type 2 Diabetes Mellitus: A Validation Study in Korea.

ObjectivesThis study assessed the validity and reliability of the Health-related Quality of Life Instrument with 8 Items (HINT-8) in patients with diabetes. HINT-8 is a newly-developed, generic health-related quality of life (HRQoL) instrument.MethodsThree HRQoL instruments—HINT-8, EuroQoL 5-Dimension 5-Level (EQ-5D-5L), and Short Form Health Survey version 2.0 (SF-36v2)—were provided to 300 patients with diabetes visiting a tertiary hospital for follow-up visits in Korea. The HRQoL scores obtained using the HINT-8 were evaluated for subgroups with known differences based on demographics and diabetes-related characteristics (known-group validity). The mean scores of the instruments were compared between groups segmented by their responses to the HINT-8 (discriminatory ability). Correlation coefficients of the HINT-8 with other instruments were calculated (convergent and divergent validity). The Cohen kappa and intra-class correlation coefficient (ICC) were also evaluated (test-retest reliability).ResultsThe average HINT-8 indexes were lower among women, older, and less-educated subjects. Subjects who did not list any problems on the HINT-8 had significantly higher HRQoL scores than those who did. The correlation coefficients of the HINT-8 with the EQ-5D-5L index and EuroQoL visual analogue scale were 0.715 (p<0.001) and 0.517 (p<0.001), respectively. The correlation coefficients between the HINT-8 index and the scores of 8 domains of the SF-36v2 ranged from 0.478 (p<0.001) to 0.669 (p<0.001). The Cohen kappa values for the HINT-8 ranged from 0.268 to 0.601, and the ICC of the HINT-8 index was 0.800 (95% confidence interval [CI], 0.720 to 0.860).ConclusionsThis study showed that the HINT-8 is a valid and reliable HRQoL instrument for patients with diabetes.

MO985: Physical Function Trajectories Predict Patient Survival in Older Recipients of Deceased Donor Kidneys

Abstract BACKGROUND AND AIMS Health-related quality of life (HRQOL) outcomes have been positively associated with patient survival after kidney transplantation (KT). In older recipients, poor HRQOL may indicate risk for clinical deterioration. We aimed to prospectively evaluate if, in older recipients of deceased brain-dead donor (DBD) kidneys, changes in HRQOL during the first year post-transplantation differed between survivor and non-survivors. METHOD KT candidates aged ≥65 years who were enlisted between January 2013 and November 2016 at the Norwegian national transplant center and received a deceased brain-dead donor (DBD) kidney were included. HRQOL was assessed using the Kidney Disease Quality of Life Short Form, version 1.3. HRQOL outcomes were collected prior to KT, at 10 weeks, 6 months and 12 months post-KT. A mixed-effect linear regression model was used to examine the development of HRQOL during the first year post-KT in survivors versus non-survivors. Longitudinal HRQOL trajectories were identified using a group-based trajectory modelling. A Cox proportional hazard regression was used to investigate the association of longitudinal HRQOL trajectories for each domain with patient survival. RESULTS We included 289 waitlisted candidates, of whom 192 received a DBD kidney. Mean age at KT was 72 (4.1) years, 133 (69%) were males, 47 (24%) were transplanted preemptively and 80% received an expanded criteria donor organ. During a median observation time of 4.6 (3.2, 6.3) years post-KT, 66 recipients died. In survivors, all the generic and kidney-specific HRQOL domains substantially improved during the first year post-KT, whereas HRQOL deteriorated in non-survivors (Figure 1). Three developmental trajectories, describing poor, fair and good outcomes were identified for most of the HRQOL domains. Recipients perceiving poor physical development during the first post-transplant year had a 2.5 higher mortality risk, while recipients with fair physical development had 1.4 increased mortality risk, compared with recipients with good physically development (Figure 2). CONCLUSION In elderly kidney transplant recipients, poor post-transplant physical function trajectory may indicate impaired survival. The systematic HRQOL monitoring following KT is warranted to identify high-risk patients and guide therapeutic decisions.

MO867: Confirmatory Factor Analysis and Computer Adaptive Testing System Prototype Based on Multidimensional Item Response Theory of KDQOL-36 Among a Large Sample of Spanish Dialysis Patients

Abstract BACKGROUND AND AIMS The Kidney Disease Quality of Life (KDQOL™-36) is widely used to assess the quality of life of dialysis patients worldwide. It combines disease-specific and generic scales capturing unique facets of patients’ adaptation to the physical and mental burden of renal disease and dialysis treatment. the KDQOL™-36 psychometric properties and cross-national validation have been subject to intense review in latest years suggesting mixed replicability in different populations. Furthermore, its length may hamper its wider use in clinical practice as respondent burden may be substantial if used longitudinally within continuous quality improvement programs. Therefore, we sought to evaluate its measurement properties and develop an item response theory model enabling personalized survey administration while maximizing measurement efficiency. METHOD This is a retrospective, observational analysis of Patient-Reported Outcomes Measures (PROM) collected in Spanish NephroCare clinics during 2019 as part of a continuous quality improvement program launched by the country medical director of Spain. We used Multidimensional Item Response Theory (MIRT) models to confirm the theoretical factor structure underlying the measurement model of KDQOL™-36. MIRT extends classical IRT in that it allows complex factor structures in the multifactorial space. A critical advantage of scoring systems based on MIRT models over classical test theory models is the ability to personalize survey administration based on patient's characteristics and previous responses, reduction of measurement error, objective calibration, evaluation of test and item bias, greater accuracy in the assessment of change due to therapeutic intervention, and evaluation of model and person fit. We specified 4 competitive theoretical models for the SF-12 and the disease-specific KDQOL items (Figure 1). First, we fitted a unidimensional model, to exclude that one single factor could explain the response pattern of the questionnaire. Second, we tested a two-factor (or three-factor) orthogonal model for the SF-12 (and disease-specific KDQOL) to account for the standard scoring structure of the KDQOL™-36 questionnaire. Third, we tested the hypothesis of correlated two-factor (or three-factor) structure. Fourth, we tested a bifactor model structure, which accounts for a general HRQOL latent construct as well as lower order dimensions tapping specific dimensions of health. We expect the bifactor model would capture the pleiotropic effect of ESKD on patients’ life adjustment. We compared model fit with RMSEA, CFI and TLI statistics. For illustrative purposes, we simulated MIRT-based adaptive testing using different Delta Thetas as stopping rules to assesses measurement efficiency for the SF-12 component of the questionnaire. RESULTS Among patients completing the survey in the 2019 ePROM Spanish wave, 1838 (80.6%) dialysis prevalent patients met the inclusion criteria for the present analysis. Mean age was 68.8 ± 14.4, 60% were men, 65% had an arteriovenous fistula, and 66% were on HDF. For both generic and disease-specific KDQOL-36 components, the bifactor model significantly improved empirical fit (Figure 1). Despite slightly inferior compared with the bifactor model solutions, a simpler correlated second-order factor solution showed acceptable model fit. CAT simulation of the SF-12 showed reduction in the amount of administered item while preserving measurement reliability (Figure 2). CONCLUSION As previously reported, a correlated two factor structure and three-factor structure for the SF-12 and disease-specific KDQOL, respectively, showed acceptable fit to the observed response pattern. However, a bifactor model structure improved model fit. CAT simulation based on delta theta rules for the SF-12 questionnaire demonstrated promising results as an item selection strategy.

MP03-05 HOW DOES THE TYPE OF URINARY DIVERSION AFFECT HEALTH RELATED QUALITY OF LIFE (HRQOL) IN THE COURSE OF FOUR YEARS AFTER RADICAL CYSTECTOMY? - A PROPENSITY SCORE-MATCHED ANALYSIS

You have accessJournal of UrologyCME1 May 2022MP03-05 HOW DOES THE TYPE OF URINARY DIVERSION AFFECT HEALTH RELATED QUALITY OF LIFE (HRQOL) IN THE COURSE OF FOUR YEARS AFTER RADICAL CYSTECTOMY? - A PROPENSITY SCORE-MATCHED ANALYSIS Yannic Volz, Lennert Eismann, Benedikt Ebner, Paulo Pfitzinger, Jan-Friedrich Jokisch, Gerald Schulz, Thilo Westhofen, Alexander Karl, Boris Schlenker, Christian Stief, and Alexander Kretschmer Yannic VolzYannic Volz More articles by this author , Lennert EismannLennert Eismann More articles by this author , Benedikt EbnerBenedikt Ebner More articles by this author , Paulo PfitzingerPaulo Pfitzinger More articles by this author , Jan-Friedrich JokischJan-Friedrich Jokisch More articles by this author , Gerald SchulzGerald Schulz More articles by this author , Thilo WesthofenThilo Westhofen More articles by this author , Alexander KarlAlexander Karl More articles by this author , Boris SchlenkerBoris Schlenker More articles by this author , Christian StiefChristian Stief More articles by this author , and Alexander KretschmerAlexander Kretschmer More articles by this author View All Author Informationhttps://doi.org/10.1097/JU.0000000000002515.05AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract INTRODUCTION AND OBJECTIVE: Radical cystectomy (RC) and urinary diversion by ileal conduit (IC) or ileal orthotopic neobladder (ONB) is the standard-of-care for surgical treatment of muscle-invasive bladder cancer. Yet, it remains unclear how the patient’s health-related quality of life (HRQOL) is affected by the choice of urinary diversion in long-term. The current study tries to provide further insight on the quality of life up to four years after RC. METHODS: HRQOL was assessed preoperatively, 3mo postoperatively and annually until a maximum follow-up of 48mo using the validated EORTC QLQ-C30- as well as the bladder cancer-specific FACT-BL- and QLQ-BLM30-questionnaires. The variables “age”, “ASA classification” and “cardiovascular co-morbidity” were used for a propensity-score matching. Potential predictors for decreased general HRQOL were assessed using multivariable logistic regression models. RESULTS: After propensity-score matching, patient cohorts were well-balanced and a total of 260 patients were included. We were able to reveal significant differences regarding preoperative QLQ-C30 symptoms and functioning scores between IC and ONB patients which diminished during the postoperative time course. Similarly, we did not observe significant differences based on bladder cancer-specific FACT-BL and QLQ-BLM HRQOL assessment including body image [48mo: 28.4 (IC) vs. 43.7 (ONB); p=0.439). General HRQOL may increase as we found increased global health status scores for ONB throughout the whole observational period without reaching statistical significance [48mo: 57.1 (IC) vs. 67.7 (ONB); p=0.200]. In multivariate analysis, cardiovascular co-morbidity was an independent predictor of impaired HRQOL 24mo (HR 2.45; CI95% 1.16-5.17, p=0.019) and 36mo (HR 4.84; CI95% 1.39-16.92, p=0.013) postoperatively. CONCLUSIONS: Up to four years after RC we did not observe significant differences between both types of urinary diversion in bladder cancer-specific subscores as well as generic HRQOL. Consequently, the type of urinary diversion was not an independent predictor of good general HRQOL. Source of Funding: None © 2022 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 207Issue Supplement 5May 2022Page: e21 Advertisement Copyright & Permissions© 2022 by American Urological Association Education and Research, Inc.MetricsAuthor Information Yannic Volz More articles by this author Lennert Eismann More articles by this author Benedikt Ebner More articles by this author Paulo Pfitzinger More articles by this author Jan-Friedrich Jokisch More articles by this author Gerald Schulz More articles by this author Thilo Westhofen More articles by this author Alexander Karl More articles by this author Boris Schlenker More articles by this author Christian Stief More articles by this author Alexander Kretschmer More articles by this author Expand All Advertisement PDF DownloadLoading ...

Prioritization versus rationing of healthcare – elective surgery is not optional surgery

Prioritization versus rationing of healthcare – elective surgery is not optional surgery

MP22-10 HOW IS HEALTH-RELATED QUALITY OF LIFE AFFECTED BY SALVAGE CYSTECTOMY AND URINARY DIVERSION AS A LAST-LINE OPTION FOR BENIGN DISEASE

You have accessJournal of UrologyCME1 May 2022MP22-10 HOW IS HEALTH-RELATED QUALITY OF LIFE AFFECTED BY SALVAGE CYSTECTOMY AND URINARY DIVERSION AS A LAST-LINE OPTION FOR BENIGN DISEASE Yannic Volz, Lennert Eismann, Paulo Pfitzinger, Jan-Friedrich Jokisch, Gerald Schulz, Severin Rodler, Alexander Buchner, Boris Schlenker, Christian Stief, and Alexander Kretschmer Yannic VolzYannic Volz More articles by this author , Lennert EismannLennert Eismann More articles by this author , Paulo PfitzingerPaulo Pfitzinger More articles by this author , Jan-Friedrich JokischJan-Friedrich Jokisch More articles by this author , Gerald SchulzGerald Schulz More articles by this author , Severin RodlerSeverin Rodler More articles by this author , Alexander BuchnerAlexander Buchner More articles by this author , Boris SchlenkerBoris Schlenker More articles by this author , Christian StiefChristian Stief More articles by this author , and Alexander KretschmerAlexander Kretschmer More articles by this author View All Author Informationhttps://doi.org/10.1097/JU.0000000000002561.10AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract INTRODUCTION AND OBJECTIVE: Radical cystectomy and urinary diversion can impact health-related-quality-of-life (HRQOL). However, less is known about salvage cystectomy when performed as an option for treatment-refractory benign diseases. The current study tries to provide HRQOL data from a contemporary cohort of open salvage cystectomies for benign conditions and give more insight into a delicate topic. METHODS: Overall, 54 consecutive patients were included into this study retrospectively. Only patients undergoing urinary diversion via ileal conduit (IC) were included. Patients that received cystectomy due to cancer were excluded. Complications were assessed via Clavien-Dindo-scale. HRQOL was measured using two validated questionnaires (EORTC QLQ-C30 and QLQ-BLM30). HRQOL QLQ-C30 domains were measured preoperatively and follow-up was up to 3 years. Longitudinal changes were analyzed using Friedman's rank test. Primary endpoint was good general HRQOL based on QLQ-C30 global health status (GHS). Multivariate analysis was performed using binary regression models. RESULTS: Pain (p=0.005) and fatigue (p=0.002) scores improved significantly as well as social functioning (p=0.038). Furthermore, general HRQOL (GHS scores) improved significantly during the follow-up period (28.0 vs. 50.6 [36mo], p=0.045). In multivariate models the underlying disease for salvage cystectomy could not be identified as an independent predictor for good general HRQOL (OR 0.69, 95%CI, 0.38–1.30, p=0.256). Overall, 10 (41.7%) high-grade (Clavien ³III) 90d-complications were observed. Limitations include limited follow-up rates at respective time-points as well as missing preoperative HRQOL data. CONCLUSIONS: Salvage cystectomy and IC can be safely performed as a last-line treatment for benign conditions and increases general HRQOL in the long-term follow-up. Yet, the procedure of surgery is highly complex and complications should be considered. Thus, it can play a role in a holistic approach for a challenging clinical setting. Source of Funding: None © 2022 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 207Issue Supplement 5May 2022Page: e375 Advertisement Copyright & Permissions© 2022 by American Urological Association Education and Research, Inc.MetricsAuthor Information Yannic Volz More articles by this author Lennert Eismann More articles by this author Paulo Pfitzinger More articles by this author Jan-Friedrich Jokisch More articles by this author Gerald Schulz More articles by this author Severin Rodler More articles by this author Alexander Buchner More articles by this author Boris Schlenker More articles by this author Christian Stief More articles by this author Alexander Kretschmer More articles by this author Expand All Advertisement PDF DownloadLoading ...

PD60-01 THE IMPACT OF BASELINE HEALTH-RELATED QUALITY OF LIFE ON BIOCHEMICAL RECURRENCE FREE SURVIVAL IN HIGH-RISK PROSTATE CANCER PATIENTS FOLLOWING RADICAL PROSTATECTOMY

You have accessJournal of UrologyCME1 May 2022PD60-01 THE IMPACT OF BASELINE HEALTH-RELATED QUALITY OF LIFE ON BIOCHEMICAL RECURRENCE FREE SURVIVAL IN HIGH-RISK PROSTATE CANCER PATIENTS FOLLOWING RADICAL PROSTATECTOMY Thilo Westhofen, Alexander Buchner, Boris Schlenker, Armin Becker, Christian G. Stief, and Alexander Kretschmer Thilo WesthofenThilo Westhofen More articles by this author , Alexander BuchnerAlexander Buchner More articles by this author , Boris SchlenkerBoris Schlenker More articles by this author , Armin BeckerArmin Becker More articles by this author , Christian G. StiefChristian G. Stief More articles by this author , and Alexander KretschmerAlexander Kretschmer More articles by this author View All Author Informationhttps://doi.org/10.1097/JU.0000000000002645.01AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract INTRODUCTION AND OBJECTIVE: Several studies have shown baseline health-related quality of life (HRQOL) to be a valuable prognostic indicator of survival outcomes for various cancer entities in the metastatic setting. To date, there is no evidence regarding the prognostic value of baseline HRQOL for patients undergoing radical prostatectomy (RP) due to localized prostate cancer (PC). The objective of this study was to assess the impact of baseline preoperative HRQOL on survival prognosis for high-risk PC patients following RP. METHODS: 1029 patients with high-risk PC according to NCCN risk stratification and prospectively assessed baseline HRQOL prior RP were included. Patients were stratified by the global health status (GHS) domain of the EORTC QLQ-C30 questionnaire, good general HRQOL was defined as GHS ≥70 based on validated cut-off levels. Subsequently, a propensity score-matched analysis of 636 patients [n=318 (GHS ≥70), n=318 (GHS <70)] was conducted. Primary endpoint was biochemical recurrence-free survival (BRFS), secondary endpoint was metastasis-free survival (MFS). Multivariate Cox regression models were performed to assess prognostic significance of baseline GHS on survival outcomes. Harrell’s discrimination C-index was applied to calculate the predictive accuracy of the model (p <0.05). RESULTS: Median follow-up was 40mo. Applying matching variables age, PSA, pT stage, Gleason grade, positive surgical margin rate, and lymph node involvement, patients subcohorts were well-balanced. 5-yr-BRFS (61% vs. 28%; p <0.001) and 5-yr-MFS (86% vs. 68%; p=0.003) were significantly increased in the GHS≥70 cohort. In multivariate analysis GHS ≥70 was confirmed as an independent predictor for increased BRFS (HR 0.60, 95%CI 0.44–0.82; p=0.013) and MFS (HR 0.51, 95%CI 0.30–0.87; p=0.026). Adding baseline HRQOL to our model improved predictive accuracy of BRFS by 8% (Harrell’s C-index of 0.69 vs 0.65). CONCLUSIONS: Our findings highlight baseline HRQOL to be a valuable and robust prognostic factor for patients with localized high-risk PC prior RP. Baseline good general HRQOL accurately predicts increased BRFS and MFS. Source of Funding: None © 2022 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 207Issue Supplement 5May 2022Page: e1024 Advertisement Copyright & Permissions© 2022 by American Urological Association Education and Research, Inc.MetricsAuthor Information Thilo Westhofen More articles by this author Alexander Buchner More articles by this author Boris Schlenker More articles by this author Armin Becker More articles by this author Christian G. Stief More articles by this author Alexander Kretschmer More articles by this author Expand All Advertisement PDF DownloadLoading ...

PD10-08 THE IMPACT OF BASELINE HEALTH-RELATED QUALITY OF LIFE ON BLADDER-CANCER-SPECIFIC SURVIVAL IN PATIENTS TREATED WITH RADICAL CYSTECTOMY

You have accessJournal of UrologyCME1 May 2022PD10-08 THE IMPACT OF BASELINE HEALTH-RELATED QUALITY OF LIFE ON BLADDER-CANCER-SPECIFIC SURVIVAL IN PATIENTS TREATED WITH RADICAL CYSTECTOMY Thilo Westhofen, Lennert Eismann, Alexander Buchner, Boris Schlenker, Clemens Gießen-Jung, Armin Becker, Christian G. Stief, and Alexander Kretschmer Thilo WesthofenThilo Westhofen More articles by this author , Lennert EismannLennert Eismann More articles by this author , Alexander BuchnerAlexander Buchner More articles by this author , Boris SchlenkerBoris Schlenker More articles by this author , Clemens Gießen-JungClemens Gießen-Jung More articles by this author , Armin BeckerArmin Becker More articles by this author , Christian G. StiefChristian G. Stief More articles by this author , and Alexander KretschmerAlexander Kretschmer More articles by this author View All Author Informationhttps://doi.org/10.1097/JU.0000000000002536.08AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract INTRODUCTION AND OBJECTIVE: Previous studies have shown that baseline health-related quality of life (HRQOL) is a valuable prognostic indicator of survival outcomes for various cancer entities in the metastatic setting, yet there is no evidence on the prognostic value of baseline HRQOL for patients undergoing radical cystectomy (RC) with curative intent. The goal of this study was to evaluate the influence of baseline preoperative HRQOL on cancer specific survival prognosis for patients undergoing RC. METHODS: 407 patients with prospectively assessed baseline HRQOL prior RC were included. Patients were stratified by the global health status (GHS) domain of the EORTC QLQ-C30 questionnaire, and good general HRQOL was defined as GHS ≥70 based on validated cut-off levels. A 1:2 propensity-score-matched analysis of n=357 patients [n=125 (GHS ≥70), n=232 (GHS <70)] was performed. Primary endpoint was cancer-specific survival (CSS), secondary endpoints encompassed overall survival (OS) and recurrence-free survival (RFS). Multivariate Cox regression models were performed to assess prognostic significance of baseline GHS on survival outcomes. RESULTS: Median follow-up was 40.5mo. Patients subcohorts were well-balanced. All baseline QLQ-C30 functioning scales were in favour of the GHS≥70 cohort (each p <0.001). 5-yr CSS (82% vs. 65%; p=0.001), 5-yr OS (76% vs 53%; p=0.001) and 5-yr-RFS (50% vs. 39%; p=0.04) and were significantly increased in the GHS ≥70 cohort. GHS≥70 was confirmed as an independent predictor for increased CSS (HR 0.43, 95%CI 0.21–0.89; p=0.028), OS (HR 0.56, 95%CI 0.31–0.90; p=0.031) and RFS (HR 0.52, 95%CI 0.31–0.87; p=0.013) multivariate analysis. CONCLUSIONS: Our findings suggest preoperative baseline HRQOL to have a pronounced predictive value for patients undergoing RC with curative intent for bladder cancer. We found baseline good general HRQOL to accurately predict increased CSS, OS and RFS. Source of Funding: none © 2022 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 207Issue Supplement 5May 2022Page: e186 Advertisement Copyright & Permissions© 2022 by American Urological Association Education and Research, Inc.MetricsAuthor Information Thilo Westhofen More articles by this author Lennert Eismann More articles by this author Alexander Buchner More articles by this author Boris Schlenker More articles by this author Clemens Gießen-Jung More articles by this author Armin Becker More articles by this author Christian G. Stief More articles by this author Alexander Kretschmer More articles by this author Expand All Advertisement PDF DownloadLoading ...

Role of neuroticism and perceived stress on quality of life among patients with dry eye disease

This hospital-based, cross-sectional observational study aimed to examine whether neuroticism has an impact on stress that is related to dry eye disease (DED) and quality of life (QOL). One hundred participants who had DED completed the Dry Eye-Related Quality-of-Life Score (DEQS) questionnaire, a 5-level EQ-5D (EQ-5D-5L), Neuroticism Inventory (NI), and 10-Item Perceived Stress Scale (PSS). Hierarchical linear regression was applied to determine the predictive effect of the independent variables. Participants’ mean age was 50.91 ± 14.3 years, and females totalled 89.0%. Hierarchical linear regression analysis showed that DESQ-Ocular symptoms were the strongest predictor for QOL either assessed by DEQS or EQ-5D, and its effect was lessened when perceived stress and neuroticism were added to the model. The final model explained up to 30–39% variance of the QOL, compared with 13–32% by DESQ-Ocular symptoms alone. QOL of the patients with DED, is not only related to eye symptoms but perceived stress. Moreover, neuroticism was a strong predictor contributing to the QOL among patients with DED. The study showed a significant association between perceived stress, neuroticism and the QOL of patients with DED. Personality has some impact on both subjective dry eye symptoms and impact on daily life, along with the general health-related QOL.

Determinants of health-related quality of life in young adults living with perinatally acquired HIV infection in Botswana.

BackgroundDue to the successful antiretroviral therapy (ART) programme in Botswana, large numbers of perinatally HIV-infected adolescents are emerging into young adulthood. Young adulthood is a critical period of human development. However, there is lack of information on the factors affecting the health-related quality of life (HRQOL) of young adults living with perinatally acquired HIV (YALPH) in Botswana.ObjectivesThe objective of this study was to assess the HRQOL and its determinants among YALPH who were enrolled on ART at Botswana-Baylor Children’s Clinical Centre of Excellence in Gaborone, Botswana.MethodA cross-sectional study assessed the HRQOL of 509 YALPH aged 18–30 years using the WHOQOL-HIV BREF. Data about other variables of interest were abstracted from medical records. Bivariate analyses were performed using t and Chi-square tests to determine the associations between demographic and clinical variables and general HRQOL. The variables that were associated with the general HRQOL at P-value < 0.1 were included in the multivariable analysis using the logistic regression approach.ResultsThe majority of participants had good general HRQOL (78.4%). The highest mean HRQOL score was in the Physical domain (5.4 [± 2.9]) and the lowest in the Environment domain (13.8 [± 2.7]). The factors that were significantly associated with the general HRQOL included: level of education attained (P = 0.012), employment status (P = 0.069), viral load suppression (P = 0.073) and self-reported illness (P = 0.001).ConclusionInterventions that effectively increase educational attainment, employment opportunities, ART adherence, and prevention or management of illness are needed to promote good HRQOL among YALPH in Botswana.

Efficacy of the eHealth application Oncokompas, facilitating incurably ill cancer patients to self-manage their palliative care needs: A randomized controlled trial.

SummaryBackgroundMany patients with incurable cancer have symptoms affecting their health-related quality of life. The eHealth application ‘Oncokompas’ supports patients to take an active role in managing their palliative care needs, to reduce symptoms and improve health-related quality of life (HRQOL). This randomized controlled trial was conducted to determine the efficacy of Oncokompas compared to care as usual among incurably ill cancer patients with a life expectancy of more than three months.MethodsPatients were recruited in six hospitals in the Netherlands. Eligible patients were randomly assigned to the intervention (direct access to Oncokompas) or the control group (access to Oncokompas after three months). The primary outcome measure was patient activation (i.e., patients’ knowledge, skills and confidence for self-management). Secondary outcomes were general self-efficacy and HRQOL. Measures were assessed at baseline, two weeks after randomization, and three months after the baseline measurement. Linear mixed models were used to compare longitudinal changes between both groups from baseline to the three-month follow-up.FindingsIn total, 219 patients were eligible of which 138 patients completed the baseline questionnaire (response rate 63%), and were randomized to the intervention (69) or control group (69). There were no significant differences between the intervention and control group over time in patient activation (estimated difference in change T0-T2; 1·8 (90% CI: -1·0 to 4·7)), neither in general self-efficacy and HRQOL. Of the patients in the intervention group who activated their account, 74% used Oncokompas as intended. The course of patient activation, general self-efficacy, and HRQOL was not significantly different between patients who used Oncokompas as intended versus those who did not.InterpretationAmong incurably ill cancer patients with a life expectancy of more than three months and recruited in the hospital setting, Oncokompas did not significantly improve patient activation, self-efficacy, or HRQOL.FundingZonMw, Netherlands Organization for Health Research and Development (844001105).