Health-related Quality Of Life Measures Research Articles

Assessments scales for the evaluation of health-related quality of life in Parkinson's disease, progressive supranuclear palsy, and multiple system atrophy: a systematic review.

The concept of wellbeing is expansive and intricate, making it challenging to define precisely. Similarly, the instruments employed to assess wellbeing are complex and multifaceted. Therefore, it is more appropriate to refer to the notion of wellbeing as Health-Related Quality of Life (HRQoL), which is the central focus of many measures used to assess the feeling of wellbeing. This review aimed to identify the tools most commonly used to evaluate HRQoL in individuals with Parkinsonism-a group of movement disorders that negatively impact the quality of life due to the intricate interplay of symptoms, socio-demographic characteristics, and psychological factors. The main aim was to assess the psychometric properties of these measures in terms of validity and reliability. A literature review was conducted, focusing on research related to the assessment of HRQoL in connection to symptoms of Parkinsonism. This review included all studies that examined HRQoL using evaluation scales, exams, or self-reported questionnaires. The literature review was conducted using the databases Scopus and Web of Science and the search engine PubMed to identify studies published between 1996 and 2023. Only records that assessed HRQoL in individuals with Parkinson's disease and Parkinsonism were selected for evaluation. A total of 393 records were examined, and eight tools were identified as the most frequently used in the evaluation of HRQoL. The results show a significant gap in knowledge regarding the latent structure and measurement invariance of HRQoL measurements, which may have a significant influence on the interpretation of test outcomes. Moreover, there is a lack of clear divergent validity between HRQoL assessments and other tests used as predictors of HRQoL. This could represent a significant limitation, affecting the construct and criterion validity of HRQoL measures.

Ibrutinib plus rituximab and mini-CHOP in older patients with newly diagnosed DLBCL: a phase 2 ALLG study

AbstractThe multicenter, prospective phase 2 Australasian Leukaemia & Lymphoma Group NHL29 trial was conducted to assess the addition of ibrutinib to R-mini-CHOP (dose attenuated R-CHOP; rituximab, cyclophosphamide, doxorubicin, vincristine, and prednisone) in patients aged ≥75 years with newly diagnosed diffuse large B-cell lymphoma (DLBCL). Treatment consisted of six 21-day cycles of ibrutinib–R-mini-CHOP followed by two 21-day cycles of R-ibrutinib. Coprimary end points were deliverability and 2-year overall survival (OS). The median average relative total dose and average relative dose intensity for the entire regimen were both 97% (interquartile range, 82-100 and 88-100, respectively). With a median follow-up of 35.5 months, the 2-year OS was 68% (95% confidence interval [CI], 55.6-77.4) with a 2-year progression-free survival (PFS) of 60.0% (95% CI, 47.7-70.3). Median OS and PFS were 72 months (95% CI, 35 to not reached) and 40 months (95% CI, 20.4 to not reached), respectively. The overall response rate was 76% (61/79) of patients, with a complete response rate of 71% (56/79). Deaths occurred in 34 of 79 patients (43%), including 17 from progressive disease and 5 treatment related. Overall, 67% patients experienced at least 1 serious adverse event. Most common adverse events were infections and diarrhea (the majority grade 1-2). In both health-related quality of life measures, there was an improvement in functional and symptom scales, median health state classification score, and median visual analogue scale in responders over time. In conclusion, this study showed that the addition of ibrutinib to R-mini-CHOP was both deliverable and efficacious in elderly DLBCL patients.

Disparities in Surgical Intervention and Health-Related Quality of Life Among Racial/Ethnic Groups With Degenerative Lumbar Spondylolisthesis.

Racial and socioeconomic disparities in spine surgery for degenerative lumbar spondylolisthesis persist in the United States, potentially contributing to unequal health-related quality of life (HRQoL) outcomes. This is important as lumbar spondylolisthesis is one of the most common causes of surgical low back pain, and low back pain is the largest disabler of individuals worldwide. Our objective was to assess the relationship between race, socioeconomic factors, treatment utilization, and outcomes in patients with lumbar spondylolisthesis. This cohort study analyzed prospectively collected data from 9941 patients diagnosed with lumbar spondylolisthesis between 2015 and 2020 at 5 academic hospitals. Exposures were race, socioeconomic status, health coverage, and HRQoL measures. Main outcomes and measures included treatment utilization rates between racial groups and the association between race and treatment outcomes using logistic regression, adjusting for patient characteristics, socioeconomic status, health coverage, and HRQoL measures. Of the 9941 patients included (mean [SD] age, 67.37 [12.40] years; 63% female; 1101 [11.1%] Black, Indigenous, and People of Color [BIPOC]), BIPOC patients were significantly less likely to use surgery than White patients (odds ratio [OR] = 0.68; 95% CI, 0.62-0.75). Furthermore, BIPOC race was associated with significantly lower odds of reaching the minimum clinically important difference for physical function (OR = 0.74; 95% CI, 0.60; 0.91) and pain interference (OR = 0.77; 95% CI, 0.62-0.97). Medicaid beneficiaries were significantly less likely (OR = 0.65; 95% CI, 0.46-0.92) to reach a clinically important improvement in HRQoL when accounting for race. This study found that BIPOC patients were less likely to use spine surgery for degenerative lumbar spondylolisthesis despite reporting higher pain interference, suggesting an association between race and surgical utilization. These disparities may contribute to unequal HRQoL outcomes for patients with lumbar spondylolisthesis and warrant further investigation to address and reduce treatment disparities.

Does socioeconomic status modify how individuals perceive or describe their own health? An assessment of reporting heterogeneity in the Health Survey for England

BackgroundSelf-reported health (SRH) is widely used as a proxy for health status; it is a simple, holistic measure of health and has been associated with other health outcomes. However, variation...

Quality of life in primary immunodeficiency: Its contribution to shared decision-making and patient outcomes.

Quality of life (QOL) measures have become increasingly important in the management of patients with complex diseases. There are a number of instruments to measure QOL that include broad areas or domains of physical, psychological, social, spiritual, and environmental issues. The number of potential domains plus the large number of items within each domain have led to the development of a large variety of QOL instruments and of different approaches by using both health-related and non-health-related factors. Health-related QOL (HRQOL) measures have been incorporated into clinical trials to assess changes in the patient's perspective on his or her disease and the effects of treatment. An important aspect of these HR-QOL instruments is that these questionnaires are patient reported and usually self-administered. The life-long therapy of intravenous immunoglobulin (IVIG) or subcutaneous immunoglobulin (SCIG) can be a challenge to the patient, his or her family and the physician. A number of patient-reported surveys have been published that examined treatment satisfaction and the comparison between IVIG and SCIG replacement therapy in patients with primary immunodeficiency. This review explores the use of HR-QOL surveys in patient preferences for mode and route of immunoglobulin therapy and site of care. Shared decision-making will be explored to emphasize the importance of this approach in optimizing patient care and compliance.

Sex differences in health-related quality of life among older Korean adults with type 2 diabetes mellitus: a cross-sectional study

Objectives: This cross-sectional study examined sex differences in Health-Related Quality of Life (HRQoL) among seniors with Type 2 Diabetes Mellitus (T2DM).Methods: Data from the Korea National Health and Nutrition Examination Survey (2008–2020) were analyzed. The EuroQol-5 Dimensions (EQ-5D), a measure of HRQoL, was used. It comprises five dimensions: mobility, self-care, usual activity, pain/discomfort, and anxiety/depression, each with three levels.Results: Analysis of 3,826 older adults with T2DM showed a significant increasing trend in the EQ-5D Index from the 4th survey phase onwards (P for trend < 0.001 for both men and women). Men consistently reported higher EQ-5D levels than women across all survey years. Women’s EQ-5D levels remained lower than men’s, maintaining a decade-old disparity (P < 0.05). Men scored significantly higher (P < 0.05) in most EQ-5D domains, except for self-care and anxiety/depression, resulting in a higher total EQ-5D Index (P = 0.001). Increased comorbidities were strongly associated with lower EQ-5D levels in both sexes. Additionally, there was a negative correlation between the EQ-5D Index and refined grain intake for both sexes (P for trend < 0.001), with high-EQ-5D groups consuming fewer refined grains. Women in the high-EQ-5D group consumed more nuts, vegetables, and meat compared to men (P for trend < 0.05).Conclusions: Our study highlights the sex disparities in HRQoL among older adults with T2DM. The findings suggest the need for tailored treatment guidelines aimed at improving the HRQoL of elderly T2DM patients, with a focus on their sex-specific characteristics. Implementing these tailored guidelines could enhance the HRQoL of older women with T2DM and promote more equitable healthcare outcomes. This underscores the importance of considering sex differences to comprehensively improve the well-being of this population.

The Role and Importance of Quality of Life among Preschool Children as a Prerequisite for a Positively Oriented Upbringing

The aim of this study was to evaluate the health-related quality of life (QoL) in a sample of healthy preschool children in the Republic of Croatia and comment on whether and how the research results open the preconditions for positive individual scenarios of the future related to positively oriented upbringing. The Pediatric quality of life inventory generic core scales (PedsQLTM) was completed by 230 healthy preschool children (5-6 years old) and their parents as a proxy-report. The data was descriptively analysed first. Reliability was assessed by Cronbach’s alpha. The statistically significant difference between the PedsQLTM scales (physical, emotional, social, kindergarten and psychosocial functioning) for preschool children and their parent’s proxy-report were analysed. The PedsQLTM scale score means for children’s self-report ranged 71.32-76.49, with the total score was 74.53. Score means for their parent’s proxy-report scale ranged 73.59-85.46, with the total score of 80.93. All the self-report and proxy-report scales showed satisfactory reliability with Cronbach’s alpha varying between 0.64 and 0.89. Statistically significant difference between scales in self-report and proxy-report was for physical (t=-7.12, p<0.01), social (t=-6.42, p<0.01) and school functioning (t=-2.62, p<0.01) as well as psychosocial (t=-4.82, p<0.01) and total health (t=-6.85, p<0.01). The Croatian PedsQLTM is valid and reliable generic pediatric health-related QoL measurement that can be recommended for children’s self-reports and their parent’s proxy-reports. The results of the research open a precondition for positive individual scenarios of the future related to positively oriented upbringing.

The Cost of Unhealthy Days: A New Value Assessment.

For-profit companies addressing disparities in social determinants of health (SDOH), also known as SDOH Industry companies, often lack member-level claims data to evaluate their organizational interventions. Health-related quality of life (HRQOL) measures, such as the Centers for Disease Control and Prevention's Healthy Days Measure, offer a unique proxy metric to evaluate impact. This retrospective study sought to explore the association between self-reported physically and mentally unhealthy days with health care costs among a Medicare Advantage (MA) population. A cross-sectional study of MA members receptive to a companion care program, and thus likely to have unmet social needs, was conducted. The analysis included members with recorded baseline unhealthy days and complete claims data (n = 2,354). Least squares regression analyses were performed to determine the relationship between baseline medical costs, physically unhealthy days, and mentally unhealthy days. A review of Major Diagnostic Categories (MDCs) was also included to elucidate the strength of the Healthy Days Measure as an indicator of the burden of health conditions. Each additional unhealthy day reported was associated with an increase in 30-day medical costs of $60 and $34 for physically and mentally unhealthy days, respectively. Unhealthy days and costs increased with an increasing number of MDCs. Compared with previous studies linking unhealthy days and health care expenditure, these data reveal the potential for even higher savings by reducing the number of unhealthy days in a high-risk population. This evidence supports using unhealthy days as a HRQOL measure and as an important tool for cost estimations.

Patients’ health related quality of life after massive weight loss reconstruction in the Netherlands

ABSTRACT Objectives The present study aimed to evaluate the impact of undergoing massive weight loss reconstruction (MWR) on health-related quality of life (HR-QoL) in the Netherlands. Method A retrospective study was performed among 131 Dutch bariatric patients, divided into two groups: an intervention group (93 patients who had undergone MWR) and a control group (38 patients who had not undergone MWR). HR-QoL was assessed by the validated BODY-q questionnaire. The sign test was used to measure the difference between the 0 and 12 months’ measurements of HR-QoL in both groups, whereas multiple regression analysis was conducted to assess whether undergoing MWR significantly predicted participants’ incremental HR-QoL. Results Whereas the intervention group showed a significance improvement on all parameters of the BODY-q between 0 and 12 months (all parameters p < .001), the control group did not. The multiple regression analysis showed that having undergone a MWR significantly and positively predicted incremental HR-QoL on all scales on the BODY-q (all parameters p < 0.05). Conclusion The present study suggests a positive impact of MWR on the HR-QoL of bariatric patients.

Health-related quality of life in vibrant soundbridge patients: generic and specific measures, short-term and long-term outcomes.

The goal of the study was to determine the short- and long-term outcome of health-related quality of life (HRQoL) in adults implanted with a Vibrant Soundbridge (VSB). Twenty-one adults (8 females, 13 males; mean age at implantation: 57 ±10 years) who received a unilateral VSB for combined or conductive hearing loss, were administered two questionnaires: the Nijmegen Cochlear Implant Questionnaire (NCIQ) as a measure of hearing-specific HRQoL, and the Health Utility Index 3 (HUI 3) as a measure of generic HRQoL. The questionnaires were administered before implantation and three, six, 12 and 24 months after processor activation. The NCIQ total score raised significantly from 62 points before implantation to 76 points at three months after processor activation (p < 0.005). Thereafter, no significant increases occurred anymore. The HUI 3 multi-attribute score (MAUS) increased from 0.59 before implantation to 0.70 at three months and at six months after processor activation and then declined slightly to 0.68 at 24 months after processor activation. Similar values were observed with the HUI 3 single-attribute score (SAUS) of Hearing. The increases of the HUI 3 scores were not statistically significant, but all pre-post-implantation differences were clinically relevant. VSB recipients experienced a quick improvement of their HRQoL. After just three months of device use, a significant improvement of hearing-specific HRQoL and a clinically relevant improvement of generic HRQoL were seen. After three months, no essential changes of HRQoL occurred in our sample, suggesting that the achieved level of HRQoL may remain stable in the long term.

Acceptability of the use of health related quality of life measurements for decision-making in healthcare science in Vietnam: a qualitative study

ObjectiveThis study was conducted with the objective of exploring the usage of health-related quality of life (HRQOL) outcomes and willingness of health technology assessment (HTA) and public health stakeholders to...

A systematic review of health state utility values for older people with acute myeloid leukaemia.

Older people with acute myeloid leukaemia (AML) have a poor prognosis, reduced health-related quality of life (HRQoL) and require substantial healthcare resources. The objectives of this systematic review were to determine what health state utility values (HSUVs) are reported in the literature that can be used in economic evaluations of interventions for older people with AML, identify research gaps, and discuss directions for future research. The following databases were searched for studies published from inception until Feb 2023: PubMed, EMBASE, CINAHL, PsycINFO, Cochrane, and EconLit. Studies were included if they reported on HSUVs of people with AML >60 years, or HRQoL data that could be mapped to HSUVs using currently published algorithms. Of 532 studies identified, 7 met inclusion (4 full studies and 3 conference abstracts). Twenty-eight potentially eligible studies were excluded as they did not report HRQoL measures in sufficient detail to be mapped to utility values. Included studies reported on health states of newly diagnosed disease (n=4 studies), intensive therapy (n=1 study), controlled remission (n=3 studies), and relapsed or refractory disease (n=2 studies). No studies reported on low intensity therapy or supportive care health states. Utility values were largely reported via the EuroQol and ranged from 0.535 (intensive therapy) to 0.834 (controlled remission). There are gaps in knowledge on HSUVs for older people with AML, particularly for certain treatment-related health states. Future articles should publish comprehensive HRQoL outcomes to enable use in economic evaluation.

Evaluating the correspondence between the EQ-5D-5L and disease severity and quality of life in adults and adolescents with cystic fibrosis

BackgroundThe EQ-5D is the recommended measure to capture health-related quality of life (HRQoL), recognised for use in health technology appraisal bodies. In order to assess whether it is appropriate to use the EQ-5D for making decisions about the cost-utility of treatments in cystic fibrosis (CF), this study assesses the performance of the EQ-5D-5L in adults and adolescents with CF. MethodThis was a cross-sectional observational survey study of patients with CF attending a single large CF centre. Participants were asked to complete a survey that included two HRQoL measures; the EQ-5D-5L and CF Quality of Life (CFQoL) questionnaires. ResultsAmong 213 participants, the median EQ-5D-5L index score was 0.76 (IQR 0.66 – 0.84) and the visual analogue (EQ-VAS) was 70 (60 – 80). Both the EQ-5D index and EQ-VAS discriminated between disease severity based on lung function (p = 0.01 and p < 0.01, respectively) and pulmonary exacerbation (p = 0.02 and p < 0.01, respectively); however, EQ-VAS differentiated between more lung function severity groups compared to EQ-5D index. The EQ-5D-5L demonstrated convergent validity as its dimensions, index score, and EQ-VAS had significant correlations with most CFQoL domains. Though, EQ-VAS significantly predicted more domains of CFQoL (4 domains) compared to EQ-5D index (only 1 domain). ConclusionThe generic EQ-5D-5L performed adequately in discriminating between CF disease severity, and its index score and EQ-VAS had moderate correlations with CFQoL. However, using a complementary condition-specific measure alongside the EQ-5D-5L can provide better insight of HRQoL in CF and benefit the process of cost-utility analysis.

Measuring the effect of the anti-nerve growth factor antibodies bedinvetmab and frunevetmab on quality of life in dogs and cats with osteoarthritis using a validated health-related quality of life outcome measure: an observational real-world study.

Osteoarthritis causes chronic pain, impaired joint function, decreased mobility and negatively impacts quality of life (QOL). Anti-nerve growth factor antibodies bedinvetmab for dogs and frunevetmab for cats are licensed for the alleviation of osteoarthritis pain but their QOL impact is unreported. Our aim was to determine if these therapeutics improve QOL using a validated health-related QOL measure that generates scores in four domains of QOL-energetic and enthusiastic (E/E), happy and content (H/C), active and comfortable (A/C) and calm and relaxed (C/R)-in the dog and three in the cat-vitality, comfort and emotional wellbeing (EWB). Summary scores for physical wellbeing (PWB) and emotional wellbeing (EWB) for dogs and PWB for cats are calculated from the domain scores. Animals received bedinvetmab (dogs) at 0.5-1 mg/kg or frunevetmab (cats) at 1-2.8 mg/kg by subcutaneous injection on days 0, 28 and 56 and owners completed QOL assessments within 48 hours of day 0 and on days 14, 28, 56, 63 and 70 using a study-specific app. Assessments were completed by 75 dog and 56 cat owners. By day 14 there was a statistically significant improvement (p ≤ 0.001) in PWB, EWB and all domains except C/R (p = 0.005) in dogs and in all domains and PWB in the cat. Subsequently there was a continued improvement in all domains and summary scores (p ≤ 0.001) except for H/C in the dog and EWB in the cat, which were excluded from the statistical model. The overall improvement in all domain scores in the cat and E/E and A/C in the dog exceeded the previously reported minimum important difference scores for the QOL measure, indicating a clinically significant change. Treatment with bedinvetmab and frunevetmab produced a significant improvement in the QOL of dogs and cats. This latest evidence for the use of these OA pain medications could be helpful in the clinical management of osteoarthritis and post-marketing clinical trials.

Impact of pulmonary rehabilitation on exercise capacity, health-related quality of life, and cardiopulmonary function in lung surgery patients: a retrospective propensity score-matched analysis.

Pulmonary rehabilitation is considered beneficial for patients undergoing lung surgery, yet its specific impacts on exercise capacity, health-related quality of life (HRQL), and cardiopulmonary function require further elucidation. This study aimed to evaluate the effect of PR on these outcomes in patients undergoing lung surgery using a retrospective propensity score-matched analysis. We retrospectively analyzed 420 patients with non-small cell lung cancer (NSCLC) who underwent lung surgery from January 2022 to May 2024. Among these, 84 patients received PR while 336 did not (control group). Propensity score matching (PSM) at a 1:1 ratio yielded 46 patients in each group. Baseline characteristics, spirometry, cardiopulmonary exercise testing, respiratory muscle strength, HRQL, and muscle measurements were assessed pre-and post-surgery. Before PSM, significant differences existed between groups, with the PR group being older and having different pulmonary function baselines. After PSM, groups were well-balanced. Postoperatively, the PR group showed significant improvements in FEV1/FVC (64.17% vs. 50.87%, p < 0.001), FEV1 (2.31 L/min vs. 1.75 L/min, p < 0.001), and predicted FVC percentage (88.75% vs. 68.30%, p < 0.001). Cardiovascular responses showed a lower CI during exercise in the PR group post-PSM (6.24 L/min/m2 vs. 7.87 L/min/m2, p < 0.001). In terms of exercise capacity, the PR group had higher maximal WR percentage (104.76% vs. 90.00%, p = 0.017) and peak VO2 (1150.70 mL/min vs. 1004.74 mL/min, p = 0.009). PR also resulted in less leg soreness and lower total CAT scores postoperatively. Muscle measurements indicated significantly smaller reductions in ΔHUESMCSA and percentage change in the PR group. Pulmonary rehabilitation significantly enhances exercise capacity, HRQL, and cardiopulmonary function in patients undergoing lung surgery. It also mitigates postoperative muscle loss, underscoring its importance in the postoperative management of lung surgery patients.

Developing mapping algorithms to predict EQ-5D health utility values from Bath Ankylosing Spondylitis Disease Activity Index and Bath Ankylosing Spondylitis Functional Index among patients with Ankylosing Spondylitis

BackgroundPreference-based measures of health-related quality of life (HRQoL), such as the EQ-5D or the SF-6D, are essential for health economic evaluation. However, they are rarely included in clinical trials of ankylosing spondylitis (AS). This study aims to develop mapping algorithms to predict EQ-5D-3L and EQ-5D-5L health utility scores from the Bath Ankylosing Disease Activity Index (BASDAI) and the Bath Ankylosing Spondylitis Functional Index (BASFI).MethodsPatients with AS were recruited from the largest tertiary hospital in Shandong province, China, between December 2019 and October 2020. Patients were selected by convenience sampling method according to the following criteria: (1) diagnosed with AS according to the New York criteria; (2) aged 18 years and above; and (3) without mental disorders; (4) able to understand the questionnaires; (5) without serious complications. There were 243 patients who completed the face-to-face questionnaire survey, and 5 cases with missing values in key variables were excluded. Ordinary least squares, censored least absolute deviations, Tobit, adjusted limited dependent variable mixture model and beta-mixture model (BM) in the direct approach and ordered logit and multinomial logit (Mlogit) model in the response approach were used to develop mapping algorithms. Mean absolute error, root mean square error, Spearman’s correlation coefficient and concordance correlation coefficient were used to access predictive performance.ResultsThe 238 patients with AS had a mean age of 35.19 (SD = 9.59) years, and the majority (74.47%) were male. The observed EQ-5D-3L and EQ-5D-5L health utility values were 0.88 (SD = 0.12) and 0.74 (SD = 0.27), respectively. The EQ-5D-5L had higher conceptual overlap with the BASDAI and BASFI than the EQ-5D-3L did. The Mlogit was the best-performing model for the EQ-5D-3L, and the BM showed better performance in predicting EQ-5D-5L than other direct and indirect mapping models did.ConclusionThis study demonstrates that the EQ-5D-5L, rather than EQ-5D-3L, should be selected as the target outcome measure of HRQoL in patients with AS in China, and the BM mapping algorithm could be used to predict EQ-5D-5L values from BASDAI and BASFI for health economic evaluation.

Disability, health-related quality of life, and self-concept change in people with multiple sclerosis: A moderated mediation

BackgroundDisability is a key factor related to self-concept change following a Multiple Sclerosis (MS) diagnosis. Psychosocial factors (e.g., social integration, marital support) are also associated with changing self-concept in people with MS (pwMS). What remains unclear however, is whether psychosocial factors account for the relationship between disability and self-concept change. The current study aimed to investigate the potential mediation effect of Health-Related Quality of Life (HRQoL) on the relationship between disability and self-concept change in pwMS, and whether relationship satisfaction is a moderator of the mediated relationship. MethodNine hundred and ninety-five pwMS (79.5 % female; Age M = 59.72 years, SD = 11.15) completed measures of disability, HRQoL, and self-concept change. Of these participants, seven hundred and twenty-six pwMS who indicated they were currently in a relationship also completed a measure of relationship satisfaction. ResultsA moderated mediation (conditional process) analysis indicated that the relationship between disability and self-concept change was partially mediated by HRQoL. A further parallel mediation found that across the eight subdomains of HRQoL, only participants’ reported levels of ‘relationships’ and ‘coping’ significantly mediated the relationship between disability and self-concept change. However, for those participants in a relationship, relationship satisfaction did not moderate any mediation effects. ConclusionThe findings highlight the role that perceptions of HRQoL in some domains may have in explaining the relationship between disability and self-concept change. Further research is needed to explicate the causal direction of these relationships through longitudinal studies.

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

Quality of life is reduced in people with inflammatory bowel disease (IBD) and poor sleep is prevalent in people with IBD. This study aimed to investigate the influence of sleep on quality of life (QoL) in people with inflammatory bowel disease. An online questionnaire was administered through three tertiary IBD centers, social media, and through Crohn's Colitis Australia. The questionnaire included the EQ-5D-5L measures of health-related QoL, the Insomnia Severity Index, the Pittsburgh Sleep Quality Index (PSQI), and validated IBD activity and mental health scores. There were 553 responses included with a diagnosis of Crohn's disease (62.2%), with over half on biologic therapy (53.1%). Poor sleep and clinically significant insomnia were associated with lower QoL (EQ-5D-5L scores: EQVAS, utility score, P < 0.001 for all). Sleep quality scores correlated with the EQ-5D-5L domains of "pain" (ρ 0.35, P < 0.001), "usual activities" (ρ 0.32, P < 0.001), and "depression-anxiety" (ρ 0.37, P < 0.001). After adjusting for demographic variables, IBD activity, and depression and anxiety via multivariate regression, the "pain" domain continued to be associated with PSQI components "sleep quality" (P < 0.001), "sleep disturbance" (P < 0.001), and "sleep duration" (P < 0.001). Clinically significant insomnia was associated with a reduction in QoL (EQVAS, utility score) independent of IBD activity (P < 0.001) and of a similar magnitude to that seen with IBD activity. Health-related QoL 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 reduction in health-related QoL. Consideration should be given to sleep targeting interventional studies in an IBD population.

Development and validation of FinTox: A new screening tool to assess cancer-related financial toxicity.

This study aimed to develop and validate FinTox, a concise tool for screening and managing financial toxicity in oncology settings. Development involved qualitative interviews with healthcare providers and patients, and feedback from a 7-member expert panel resulting in a 5-item measure that evaluates financial strain, psychological responses, and care modifications. Psychometric evaluations examined factor structure, internal consistency, test-retest reliability, and concurrent and convergent validity. Associations between FinTox scores and sociodemographic/medical factors were also analyzed using univariate and multivariable regression models. Twelve healthcare providers and 20 patients were interviewed, and 268 patients (69.8% female, 47.4% non-Hispanic White) completed surveys including FinTox, the Comprehensive Score for Financial Toxicity (COST), health-related quality of life (HRQOL) measures, and sociodemographic questions. FinTox demonstrated excellent internal consistency (Cronbach's alpha = 0.90) and test-retest reliability (ICC = 0.95). Significant correlations with the COST (r = -0.62, p < 0.001) and HRQOL measures corroborated content and convergent validity. Diagnostic accuracy was evidenced by a sensitivity of 72.3%, specificity of 85.2%, positive predictive value of 83.2%, and negative predictive value of 70.3%. Higher FinTox scores were also associated with receiving care at a safety-net hospital, Black race, household income <600% of the federal poverty level, and Stage 4 cancer. FinTox's robust psychometric properties and diagnostic accuracy position it as a reliable tool for detecting financial toxicity. Future research should evaluate its responsiveness to changes over time and integration into clinical workflows.

AB035. Validation of EORTC brain cancer module (EORTC QLQ-BN20) for assessment of health-related quality of life in glioma patients in Singapore.

Existing international data has shown that glioma patients suffer from poorer health-related quality of life (HRQoL). The European Organization for Research and Treatment of Cancer (EORTC) brain cancer-specific Quality of Life Questionnaire (QLQ-BN20) was developed to be together with EORTC Core Quality of Life Questionnaire (QLQ-C30) for cancer patients, highlighting issues particularly relevant to brain tumor patients. It has since been translated and validated across numerous cohorts. However, its psychometric properties have yet to be examined in Singapore. This study aimed to validate the use of QLQ-BN20 in a nationally representative sample of glioma patients in Singapore. Eighty-seven patients who had undergone neurosurgery for glioma from six hospitals in Singapore completed three self-reported measures of HRQoL (the EuroQol EQ-5D-5L, EORTC QLQ-C30, and EORTC QLQ-BN20). Descriptive statistics summarized their characteristics and scores on the questionnaires. Psychometric properties of QLQ-BN20 examined included convergent and discriminant validity, internal consistency (Cronbach's alpha), and construct validity (Spearman's correlation). Clinical validity of QLQ-BN20 was determined based on whether QLQ-BN20 scores could differentiate patients with good and poor functional status as measured by Karnofsky Performance Scale and Barthel's Index. The QLQ-BN20 was demonstrated to have good convergent validity (item-own scale correlation >0.70) and discriminant validity (item-own scale correlation higher than item-other scale correlation). There is high internal consistency, both overall (α=0.88) and within multi-item subscales (α=0.74-0.88). Conceptually similar subscales between different tools were more strongly correlated. For instance, the QLQ-C30 physical functioning subscale and the QLQ-BN20 motor dysfunction subscale (r=-0.65, P<0.001), and the QLQ-C30 cognitive functioning subscale and the QLQ-BN20 cognitive deficits subscale (r=-0.51, P<0.001). QLQ-BN20 was also able to distinguish between functional statuses of patients (P<0.05). This study supports the validity and reliability of the EORTC QLQ-BN20 among patients with glioma in Singapore. There is good convergent and discriminant validity, internal consistency, construct validity, and clinical validity. The QLQ-BN20 is a valuable supplement to the QLQ-C30. Hence, we recommend expanding its use for all glioma patients and possibly brain cancer patients in Singapore.