Decrements In Quality Of Life Research Articles

Impact of pain, fatigue and bowel incontinence on the quality of life of people living with inflammatory bowel disease: A UK cross-sectional survey.

People with inflammatory bowel disease (IBD) often experience pain, fatigue and bowel incontinence and are at an increased risk of anxiety and depression. Our aim was to assess the impact of these symptoms on health-related quality of life (QoL) in IBD. In the IBD-BOOST survey, over 26,000 people with IBD across the UK were approached; 8486 participant-completed surveys were returned. Participants' QoL was measured using the EQ-5D-5L questionnaire and their QoL was calculated on a scale ranging from 1 (perfect health) to -0.594 (worst health). Item non-response was imputed. Stages of linear regression models assessed the associations of symptoms with QoL controlling for IBD type, socio-demographic characteristics, co-morbidities and, in further analysis, for IBD activity and IBD control. The EQ-5D-5L questionnaire was fully completed by 8093 (95.4%) participants (mean age of 50years [SD 15]; 49% with Crohn's disease). The mean QoL was 0.76 (SD 0.23). From the three IBD-related symptoms, pain was associated with the largest QoL decrement (-0.159), followed by fatigue (-0.140) and bowel incontinence (-0.048). Co-occurrence of pain and fatigue further reduced QoL. Clear graded associations were observed between symptom severity and QoL decrements (all trend p<0.001). Depression and anxiety were also associated with significant QoL decrements (-0.102 and -0.110 for moderate-to-severe anxiety and moderately severe depression, respectively). Worse IBD control and higher IBD activity were associated with lower QoL. We report strong associations between symptoms of pain, fatigue, bowel incontinence, anxiety, depression, and their severity and reduced QoL in IBD. These estimates could inform future IBD management interventions.

Abstract C135: The heterogenous impact of healthcare access factors throughout the breast cancer care continuum

Abstract Background: Delays in breast cancer diagnosis and treatment lead to worse survival and quality of life decrements. Racial disparities in care timeliness have been reported, but few studies have examined access at multiple points along the care continuum (diagnosis, treatment initiation, treatment duration, and genomic testing). Methods: The Carolina Breast Cancer Study Phase 3 (CBCS3) is a population-based cohort (n=2998, 50% Black) with invasive breast cancer diagnoses (2008-2013). We used latent class analysis (LCA) to group participants based on patterns of factors within 3 separate domains: “socio-economic status (SES)”, “care barriers”, and “care use.” These classes were evaluated in association with delayed diagnosis (approximated with stage 3 or 4 at diagnosis), delayed treatment initiation (more than 30 days between diagnosis and first treatment), prolonged treatment duration (time between first and last treatment – by treatment modality), and receipt of OncotypeDx genomic testing (evaluated among patients with early stage, ER+, HER2- disease). Associations were evaluated using adjusted linear-risk regression to estimate relative frequency differences (RFDs) with 95% confidence intervals (CIs). Results: Overall, 18% of CBCS participants had late stage/delayed diagnosis, 35% had delayed treatment initiation, 48% had prolonged treatment duration, and 62% did not receive OncotypeDx. Black women had greater frequency of each unfavorable care outcome compared to non-Black women, including diagnostic delay (22% vs 15%, RFD= 6.9, 4.1-9.6), treatment initiation delay (39% vs 31%, RFD=7.9, 4.5-11.3), prolonged treatment (50% vs 46%, RFD= 4.3, 0.5-8.2), and OncotypeDx non-receipt (69% vs 57%, RFD= 12.2, 7.3-16.7). We identified 3 latent classes for SES (“high SES”, “moderate SES,” and “low SES”) 2 classes for care barriers (“few barriers”, “more barriers”), and 5 classes for care use (“short travel/high preventive care”, “short travel/low preventive care,” “medium travel,” “variable travel,” and “high travel”). Low-SES and more barriers to care were associated with greater frequency of delayed diagnosis (RFDadj = 5.5, 2.4-8.5; RFDadj =6.7, 2.8-10.7, respectively) and prolonged treatment (RFDadj = 9.7, 4.8-14.6; RFDadj = 7.3, 2.4-12.2, respectively). Variable travel (short time to diagnosis but long time to surgery) was associated with delayed treatment in the entire study population (RFDadj = 10.7, 2.7-18.8) compared to the short travel, high use referent group. The high travel group (representing long travel to both diagnosis and surgery) was associated with delayed treatment only among Black women relative to the same referent group (RFDadj = 10.0, -3.3-23.2). Conclusions: Black patients face more frequent delays throughout the care continuum, likely stemming from different types of access barriers at key junctures. Improving breast cancer care access will require intervention on multiple aspects of SES and healthcare access. Citation Format: Matthew R. Dunn, Didong Li, Marc A Emerson, Caroline A. Thompson, Hazel B Nichols, Sarah C Van Alsten, Mya L. Roberson, Lisa A. Carey, Terry Hyslop, Jennifer Elston Lafata, Melissa A. Troester. The heterogenous impact of healthcare access factors throughout the breast cancer care continuum [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr C135.

Abstract C135: The heterogenous impact of healthcare access factors throughout the breast cancer care continuum

Abstract Background: Delays in breast cancer diagnosis and treatment lead to worse survival and quality of life decrements. Racial disparities in care timeliness have been reported, but few studies have examined access at multiple points along the care continuum (diagnosis, treatment initiation, treatment duration, and genomic testing). Methods: The Carolina Breast Cancer Study Phase 3 (CBCS3) is a population-based cohort (n=2998, 50% Black) with invasive breast cancer diagnoses (2008-2013). We used latent class analysis (LCA) to group participants based on patterns of factors within 3 separate domains: “socio-economic status (SES)”, “care barriers”, and “care use.” These classes were evaluated in association with delayed diagnosis (approximated with stage 3 or 4 at diagnosis), delayed treatment initiation (more than 30 days between diagnosis and first treatment), prolonged treatment duration (time between first and last treatment – by treatment modality), and receipt of OncotypeDx genomic testing (evaluated among patients with early stage, ER+, HER2- disease). Associations were evaluated using adjusted linear-risk regression to estimate relative frequency differences (RFDs) with 95% confidence intervals (CIs). Results: Overall, 18% of CBCS participants had late stage/delayed diagnosis, 35% had delayed treatment initiation, 48% had prolonged treatment duration, and 62% did not receive OncotypeDx. Black women had greater frequency of each unfavorable care outcome compared to non-Black women, including diagnostic delay (22% vs 15%, RFD= 6.9, 4.1-9.6), treatment initiation delay (39% vs 31%, RFD=7.9, 4.5-11.3), prolonged treatment (50% vs 46%, RFD= 4.3, 0.5-8.2), and OncotypeDx non-receipt (69% vs 57%, RFD= 12.2, 7.3-16.7). We identified 3 latent classes for SES (“high SES”, “moderate SES,” and “low SES”) 2 classes for care barriers (“few barriers”, “more barriers”), and 5 classes for care use (“short travel/high preventive care”, “short travel/low preventive care,” “medium travel,” “variable travel,” and “high travel”). Low-SES and more barriers to care were associated with greater frequency of delayed diagnosis (RFDadj = 5.5, 2.4-8.5; RFDadj =6.7, 2.8-10.7, respectively) and prolonged treatment (RFDadj = 9.7, 4.8-14.6; RFDadj = 7.3, 2.4-12.2, respectively). Variable travel (short time to diagnosis but long time to surgery) was associated with delayed treatment in the entire study population (RFDadj = 10.7, 2.7-18.8) compared to the short travel, high use referent group. The high travel group (representing long travel to both diagnosis and surgery) was associated with delayed treatment only among Black women relative to the same referent group (RFDadj = 10.0, -3.3-23.2). Conclusions: Black patients face more frequent delays throughout the care continuum, likely stemming from different types of access barriers at key junctures. Improving breast cancer care access will require intervention on multiple aspects of SES and healthcare access. Citation Format: Matthew R. Dunn, Didong Li, Marc A Emerson, Caroline A. Thompson, Hazel B Nichols, Sarah C Van Alsten, Mya L. Roberson, Lisa A. Carey, Terry Hyslop, Jennifer Elston Lafata, Melissa A. Troester. The heterogenous impact of healthcare access factors throughout the breast cancer care continuum [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr C135.

Methods for Detecting Cough and Airway Inflammation in Mice.

Chronic cough, which lasts for more than 8 weeks, is one of the most common complaints requiring medical attention, and patients suffer from a huge socioeconomic burden and a marked decrement in quality of life. Animal models can mimic the complex pathophysiology of the cough and are important tools for cough research. The detection of cough sensitivity and airway inflammation is of great significance for studying the complex pathological mechanism of cough. This article describes the measurement of cough using a noninvasive and real-time whole-body plethysmography (WBP) system and the normative procedures for harvesting tissue samples (including blood, lung, spleen, and trachea) of mice. It introduces some methods to assess airway inflammation, including pathological changes in hematoxylin and eosin (HE)-stained lung and trachea sections, the total protein concentration, the uric acid concentration, and the lactate dehydrogenase (LDH) activity in the supernatant of bronchoalveolar lavage fluid (BALF), and the leukocytes and differential cell counts of BALF. These methods are reproducible and serve as valuable tools to study the complex pathophysiology of cough.

Utilities for Complications Associated with Type 2 Diabetes: A Review of the Literature.

Utility values are used in health economic modeling analyses of type 2 diabetes (T2D) to quantify the effect of acute and long-term complications on quality of life (QoL). For accurate modeling projections, it is important that the utility values used are up to date, accurate and representative of the simulated model cohort. A literature review was performed to identify utility values for health states representing acute and chronic T2D-related complications including cardiovascular complications, stroke, renal disease, ophthalmic complications, neuropathy, diabetic foot, amputation and hypoglycemia. Searches were performed using the PubMed, Embase and Cochrane Library databases and limited to articles published since 2010. Supplementary searches were performed to identify data published at congresses in 2019-2023. A total of 54 articles were identified that reported utility values for T2D-related complications. The most frequently used elicitation method/instrument was the EQ-5D (n = 42 studies) followed by the Short Form-6 dimensions (n = 6), time tradeoff (n = 5), the Health Utilities Index Mark 2 or Mark 3 (n = 2), 15D (n = 1), visual analog scale (n = 1) and standard gamble (n = 1). Stroke and amputation were consistently associated with the largest decrements in QoL. There is a lack of published data that distinguishes between severity of several complications including renal disease, retinopathy and neuropathy. Diabetes-related complications can have a profound impact on QoL; therefore, it is important that these are captured accurately and appropriately in health economic models. Recently published utility values for diabetes-related complications that can be used to inform health economic models are summarized here.

Thai postmenopausal woman's view in genitourinary syndrome of menopause.

To determine the prevalence of genitourinary syndrome of menopause (GSM) and their awareness, attitudes, and perception of this issue. Using a specifically designed questionnaire, interviews were performed on 500 Thai postmenopausal women who attended at Vajira Hospital, Bangkok, Thailand, from August 2021 to April 2022. The mean age of the 500 participants was 60.39 ± 8.12years. The prevalence of GSM was 47.2%. The common symptoms affected by GSM were vaginal dryness (38.5%), urinary urgency (24.6%), dyspareunia (13.6%), vaginal irritation (10.2%), vaginal burning (7.2%), and dysuria (5.9%). One-half of the women were uncomfortable talking about GSM. Three-quarters who did not reveal GSM symptoms believed that the problem was a part of aging. Only 20.3% of women who suffer from symptoms consulted a health care provider (HCP). Of the women who had been prescribed treatment, 84.6% of these women reported better quality of life. GSM is a meaningful decrement in quality of life. Most Thai postmenopausal women who had symptoms believed that the problem was the aging process. Awareness of GSM and available treatment would be a further benefit.

Semaglutide vs Endoscopic Sleeve Gastroplasty for Weight Loss

Obesity is a disease with a large socioeconomic burden. Endoscopic sleeve gastroplasty (ESG) is a minimally invasive endoscopic bariatric procedure with wide global adoption. More recently, new weight-loss medications, such as glucagon-like peptide-1 receptor agonists (eg, semaglutide), have attracted increased attention due to their efficacy. However, their cost-effectiveness over an extended period compared with ESG is a critical gap that needs to be better explored for informed health care decision-making. To assess the cost-effectiveness of semaglutide compared with ESG over 5 years for individuals with class II obesity. This economic evaluation study, conducted from September 1, 2022, to May 31, 2023, used a Markov cohort model to compare ESG and semaglutide, with a no-treatment baseline strategy. The study comprised adult patients in the US health care system with class II obesity (body mass index [BMI] of 35-39.9). The base case was a 45-year-old patient with class II obesity (BMI of 37). Patients undergoing ESG were subjected to risks of perioperative mortality and adverse events with resultant costs and decrement in quality of life. Strategies included treatment with semaglutide and ESG. Costs (2022 US dollars), quality-adjusted life-years (QALYs), and incremental cost-effectiveness ratio (ICER) with a willingness-to-pay threshold of $100 000/QALY. A 5-year time horizon with a cycle length of 1 month with a 3% discount rate was used. Probabilities, costs, and quality-of-life estimates of the model were derived from published literature. One-way, 2-way, and probabilistic sensitivity analyses were also performed. The model found that ESG was more cost-effective than semaglutide over a 5-year time horizon, with an ICER of -$595 532/QALY. Endoscopic sleeve gastroplasty added 0.06 QALYs and reduced total cost by $33 583 relative to semaglutide. The results remained robust on 1-way and probabilistic sensitivity analyses. Endoscopic sleeve gastroplasty sustained greater weight loss over 5 years vs semaglutide (BMI of 31.7 vs 33.0). To achieve nondominance, the annual price of semaglutide, currently $13 618, would need to be $3591. This study suggests that ESG is cost saving compared with semaglutide in the treatment of class II obesity. On price threshold analyses, a 3-fold decrease in the price of semaglutide is needed to achieve nondominance.

Associations Between Patterns of Daily Stepping Behavior, Health-Related Quality of Life, and Pain Symptoms Among Older Adults with Chronic Pain: A Secondary Analysis of Two Randomized Controlled Trials.

One's amount, intensity, and distribution of physical activity may have implications for whether it has positive or negative effects on pain and quality of life for older adults living with chronic pain. Thus, we investigated baseline patterns of stepping related to pain symptoms and health-related quality of life at baseline and over a 12-week follow-up period. Participants were low-active older adults (69.54±6.74 years) with obesity and chronic pain who enrolled in one of two randomized controlled trials. Participants completed measures of pain intensity, interference, and health-related quality of life and wore an accelerometer for 7 days at baseline and week 12. Functional principal components analysis identified patterns of within-day stepping behavior at baseline, and linear regressions were used to investigate how these component scores related to pain and health-related quality of life at baseline and over 12 weeks. Two patterns were extracted; one describing more vs less stepping and the second capturing movement later vs earlier in the day. More baseline stepping was associated with better physical functioning (B=0.148, p<0.001) and energy (B=0.073, p=0.033), while a later start in the day was associated with worse social functioning (B=-0.193, p=0.031). More stepping at baseline predicted positive changes in physical functioning (B=0.094, p=0.019), emotional role limitations (B=0.132, p=0.049), energy (B=0.112, p<0.001), social functioning (B=0.086, p=0.043), pain (B=0.086, p=0.009), general health (B=0.081, p=0.003) and pain intensity (B=-0.039, p=0.003). A later start to the day was associated with worsening physical functioning (B=-0.229, p<0.001), physical (B=-0.282, p=0.047) and emotional role limitations (B=-0.254, p=0.048), general health (B=-0.108, p=0.041), and pain interference (B=0.055, p=0.043). Findings suggest there is value in activity patterns as an indicator for additional behavioral intervention, as those who move little and/or delay daily movement are likely to experience subsequent decrements in quality of life and pain symptoms.

Worse Depression Profiles Are Associated With Higher Symptom Burden and Poorer Quality of Life in Patients With Gynecologic Cancer.

Depression is a pervasive symptom in patients with gynecological cancer undergoing chemotherapy. Purposes were to identify subgroups of patients with distinct depression profiles and evaluate for differences in demographic and clinical characteristics, severity of common symptoms, and quality of life (QOL) outcomes among these subgroups. Patients with gynecological cancer (n = 231) completed the Center for Epidemiologic Studies-Depression Scale 6 times over 2 cycles of chemotherapy. All of the other measures were completed prior to the second or third cycle of chemotherapy. Latent profile analysis was done to identify the distinct depression profiles. Differences were evaluated using parametric and nonparametric tests. Three distinct profiles were identified: low (60.1%), high (35.1%), and very high (4.8%). Compared with low class, the other 2 classes had lower functional status and were more likely to self-report a diagnosis of depression. Patients in the 2 worse profiles reported a higher comorbidity burden, higher levels of trait and state anxiety, sleep disturbance, and fatigue, as well as lower levels of cognitive function and poorer QOL. State and trait anxiety, evening fatigue, and sleep disturbance scores exhibit a "dose-response effect" (ie, as the depression profile worsened, the severity of these symptoms increased). Almost 40% of our sample experienced high or very high levels of depression across 2 cycles of chemotherapy. Clinicians can use the identified risk factors to identify high patients risk and provide tailored psychological interventions aimed to decrease symptom burden and prevent decrements in QOL.

Wake-Up Call to Address Sleep Health in Non-Muscle Invasive Bladder Cancer: Underappreciated Contributor to Poor Quality of Life.

Few studies have specifically examined sleep health in patients with non-muscle invasive bladder cancer (NMIBC). Further study is warranted to inform future strategies in patients with NMIBC. We aim to describe sleep health in a cohort of patients with NMIBC, and its relationship with quality of life (QOL). We conducted an observational cross-sectional study in patients undergoing surveillance for NMIBC. The validated Pittsburgh Sleep Quality Index (PSQI) was used to assess sleep health (scores from 0-21) in the overall study population as well as stratified. We assessed QOL among participants with and without poor sleep quality using the SF-12 and QLQ-NMIBC-24. In a cohort of 94 NMIBC patients, median age was 67 years (IQR: 58, 72) and median time since initial diagnosis was 27 months (IQR: 9, 41). The mean PSQI score was 6.3 (SD: 3.8) and 64% percent of participants met or exceeded the PSQI cut-off score of 5, with a score of 5 or more indicating overall poor sleep quality. In those with poor sleep quality, there were statistically significant detriments in multiple QOL domains. In patients undergoing surveillance for NMIBC, there is a substantial burden of sleep disturbances and resulting decrements in QOL. These data support the need for future interventions to support sleep quality and highlight the importance of addressing sleep health as part of NMIBC survivorship care to improve QOL in patients with NMIBC.

Quality of Life Outcomes Among Patients Being Screened for Cytomegalovirus Retinitis in Thailand

ABSTRACT Purpose Cytomegalovirus (CMV) retinitis can have debilitating impacts on quality of life (QOL), but few contemporary studies have characterized these ramifications. This study assessed the impact of CMV retinitis on vision-related QOL for those living with HIV/AIDS in Thailand. Methods QOL was assessed as part of a prospective interventional cohort study of patients referred to a tertiary hospital in Thailand for CMV retinitis screening. A validated vision-related QOL questionnaire was administered at the baseline screening visit and at the 6-month study visit. Multivariable linear regression models were performed to determine the effect of CMV retinitis diagnosis on QOL score. Results A total of 152 participants completed the QOL questionnaire at their initial clinic visit. At baseline, a diagnosis of CMV retinitis diagnosis was significantly associated with decreased QOL score: unilateral retinitis was associated with a 0.11 (95% CI: −0.26–0.03) decrement in QOL, and bilateral retinitis was associated with a 0.33 (95% CI: −0.51–0.16) decrement (joint P-value = 0.0009). For the 78 participants with a 6-month visit, changes in QOL from baseline were small and not significant. A diagnosis of CMV retinitis was still associated with decreased QOL score at 6 months (joint P-value = 0.03). Conclusions This study found that vision-related QOL was lower in those with CMV retinitis, especially with bilateral involvement, and did not improve after treatment among those with follow-up. These findings reinforce the debilitating clinical manifestations of this disease, and support efforts for earlier screening to detect CMV retinitis before impacts on QOL have occurred.

Reduction Mammaplasty in Younger Patients: An Evidence-Based Approach to Treatment.

Macromastia is a common condition that can lead to physical pain, emotional burden, and behavioral impairment, with significant decrements in quality of life. Reduction mammaplasty offers the only effective treatment of symptomatic macromastia, and patients experience significant improvements in their physical and psychosocial health through surgical correction. Although symptoms typically arise during adolescence, most women seeking surgical intervention do not undergo reduction mammaplasty until their fifth decade of life. Providers often delay surgery due to speculative concerns about emotional immaturity, postoperative breast regrowth, and future lactation performance. The strict guidelines related to age and body mass index imposed by insurance companies further restrict the options available to younger patients with macromastia. This review offers an evidence-based approach to treating macromastia in younger patients. After more than 15 years of treatment and research centered on adolescents and young adults with macromastia led by the senior author (B.I.L.), a pediatric plastic surgeon, we have found that reduction mammaplasty is a safe and effective treatment option for this patient population. It is our hope that our work will enable care providers to make data-supported decisions when treating younger patients with symptomatic macromastia.

Cost-Effectiveness of Prophylactic Radiation in Patients with Asymptomatic Bone Metastases

Radiation therapy represents a primary therapy for palliation of symptomatic bone metastases. Recently, a randomized trial found that radiation may prevent skeletal-related events (SREs) among patients with asymptomatic bone metastases. Skeletal-related events, such as pathologic fracture or spinal cord compression, cause considerable morbidity and decrements in quality of life. However, asymptomatic bone metastases are quite common and treating large numbers of these patients with radiation adds cost to the health care system. With this study we evaluated the cost-effectiveness of external beam radiation therapy for high-risk asymptomatic skeletal metastases. We built a microsimulation model for cancer patients with high-risk asymptomatic bone metastasis who received either prophylactic external beam radiation therapy or standard of care. The model incorporated costs, quality of life (measured by health utility), as well as the risk of skeletal-related events, and risk of death. We measured cost-effectiveness with the incremental cost-effectiveness ratio (ICER), with ICERs under $150,000 per quality-adjusted life-year (QALY) considered cost-effective. One way and probabilistic sensitivity analyses were used to test model uncertainty. Simulating the clinical course of 1,000,000 patients with asymptomatic bone metastases, we found that compared to standard of care, radiation therapy increased overall cost by $22,431 and improved effectiveness by 0.37 QALYs, resulting in an ICER of $60,400/QALY. The model was most sensitive to assumptions about survival and the monthly cost of cancer care. The base model assumed that prophylactic radiation reduced the risk of death by 50% (Hazard ratio [HR] 0.5). Prophylactic radiation remained cost-effective with HRs up to 0.98, though beyond an HR of 0.98 prophylactic radiation was no longer cost-effective. If the monthly cost of ongoing cancer care increased from our base estimate of $1917 to $5567, then prophylactic radiation was no longer cost effective. The model was not sensitive to assumptions about the cost of radiation, quality of life, or model time horizon. Probabilistic sensitivity analysis demonstrated that radiation therapy was cost-effective in >99% of iterations. This study found that prophylactic radiation may represent a cost-effective treatment option by reducing the risk of skeletal-related events among patients with asymptomatic bone metastases. Longer follow-up and additional research defining efficacy and optimal target populations who benefit most from prophylactic radiation will help confirm these findings.

Impact of recurrent ischaemic and bleeding events on quality of life in patients with acute coronary syndrome: Insights from the FORCE-ACS registry

ObjectivePatients with acute coronary syndrome (ACS) remain at high risk for recurrent ischaemic and bleeding events during follow-up. Our study aimed to quantify and compare the impact of these adverse...

“It’s been a long journey:” A qualitative study of patient and caregiver experiences during multimodality treatment for locally advanced rectal cancer.

e24130 Background: Locally advanced rectal cancer (LARC) is treated with multimodality therapy including chemotherapy, radiation, and surgery to maximize the potential for cure. However, this aggressive treatment approach can result in substantial toxicity for patients, including life-altering changes in bowel, urinary, and sexual function as well as decrements in quality of life. We aimed to explore the lived experiences of patients and caregivers during multimodality treatment for LARC. Methods: We conducted a qualitative study of patients ≥18 years old undergoing multimodality treatment for LARC at the Massachusetts General Hospital, as well as their designated caregivers. We used purposive sampling to maximize variation in participant age, gender, and treatment status pre- versus post-surgery. Each participant completed a one-hour individual in-depth interview using a semi-structured interview guide covering treatment experiences, coping strategies, and supportive care needs. We audio recorded, transcribed, and coded interviews using an iterative approach, after which we analyzed the data using thematic analysis and constant comparison methods. Results: We included 21 patients (median age 51 years, 11 female, 18 white, 10 post-surgical resection) and 9 caregivers (median age 49 years, 8 white, 6 married/living with patient). Patients and caregivers reported that the lengthy and complex nature of treatment for LARC made it difficult for them to fully understand and navigate their treatment trajectories. The multimodality treatment approach presented several challenges with care coordination; discordant recommendations between treatment team members; and an overarching sense of unpredictability with respect to treatment timelines, complications, and impact on patients’ personal, work, and family lives. Patients and caregivers reported wishing that they had received more detailed information about each treatment phase upfront but recognized that the initial shock of a LARC diagnosis may have impeded their ability to absorb this new information. Many resorted to their own internet searches to address their unanswered questions but often found themselves returning to their treatment teams to clarify misperceptions and manage the additional distress they experienced online. Conclusions: Patients and caregivers face critical challenges in navigating treatment for LARC due to the lengthy, complex, and unpredictable nature of this treatment approach. Many resorted to their own internet searches and reported feeling misinformed, distressed, or regretful about the information found online. Findings from this study will inform the development of interventions to enhance information delivery and processing for patients undergoing multimodality treatment for LARC.

DOP23 Decrements in quality of life associated with symptoms of Inflammatory Bowel Disease: results from the UK IBD-BOOST survey

Abstract Background Inflammatory Bowel Disease (IBD) affects about 7 million people worldwide. People with active disease often experience symptoms of abdominal pain, fatigue and incontinence which may persist even in remission. We assess the impact of these symptoms, and the further contribution of anxiety and depression, on health-related quality of life (QoL) of people with IBD. Methods In the IBD-BOOST survey, over 12,500 people with IBD in the UK were approached across outpatient clinics, the IBD-BioResource participants and the Crohn’s and Colitis UK charity membership; 8486 self-completed surveys were returned. Participants’ QoL was measured using the EQ-5D-5L questionnaire, a generic health-related QoL instrument. Patients’ QoL, ranging from 1 (perfect health) to -0.594 (worst health) was calculated using UK value set. Our approach involved three pre-specified stages of linear regression model development to assess the effects of symptoms on QoL. At stage 1 the model included IBD type, IBD activity score, IBD control score, socio-demographic characteristics and co-morbidities. At stage 2, the three key IBD symptoms: pain, fatigue and bowel incontinence were added. At stage 3, anxiety and depression were also included. Results Table 1 presents selected characteristics of the 8486 IBD-BOOST survey participants (mean age 50 years, 58% women, 49% Crohn’s disease). The EQ-5D-5L questionnaire was completed by 8114 (96%) participants reporting problems across QoL domains (Figure 1: 30% problems with mobility, 13% with self-care, 43% with usual activities, 60% pain/discomfort and 50% anxiety/depression). The mean QoL was 0.76 (SD 0.22). Health-related QoL was substantially reduced in respondents reporting higher IBD activity or worse IBD control (Table 2; stage 1). These associations weakened substantially following adjustment for the key IBD symptoms of pain, fatigue and bowel incontinence for which strong and graded associations with higher symptom severity associated with lower QoL were observed (Table 2; stage 2). The further inclusion of adjustments for anxiety and depression only moderately weakened previous associations and strong and graded associations between more severe anxiety or depression and lower QoL were also observed (Table 3; stage 3). Being male, obese, unemployed/retired, or having physical or mental health comorbidity were associated with lower QoL, and being in a relationship with higher QoL (results not shown). Conclusion We report graded associations between symptoms of pain, fatigue, bowel incontinence, anxiety and depression and QoL in IBD. These estimates could inform assessments of interventions to improve IBD management.

The interaction between metaplastic neuromodulation and fatigue in multiple sclerosis

Background and objectiveNeuromuscular fatigue contributes to decrements in quality of life in Multiple Sclerosis (MS), yet available treatments demonstrate limited efficacy. Transcranial direct current stimulation (tDCS) is a non-invasive brain stimulation technique which presents promise in managing fatigue, possibly related to its capacity to modulate corticospinal excitability. There is evidence for capitalising on metaplasticity using tDCS for improving outcomes. However, this remains to be explored with fatigue in people with MS (pwMS). We investigated cathodal tDCS (ctDCS) priming on anodal tDCS (atDCS)-induced corticospinal excitability and fatigue modulation in pwMS. Methods15 pwMS and 15 healthy controls completed fatiguing exercise whilst receiving either ctDCS or sham (stDCS) primed atDCS to the motor cortex. We assessed change in contraction force and motor evoked potential (MEP) amplitude across time to represent changes in fatigue and corticospinal excitability. Results and conclusionctDCS primed atDCS induced MEP elevation in healthy participants but not in pwMS, possibly indicating impaired metaplasticity in pwMS. No tDCS-mediated change in the magnitude of fatigue was observed, implying that development of fatigue may not rely on changes in corticospinal excitability. SignificanceThese findings expand understanding of tDCS effects in pwMS, highlighting differences that may be relevant in the disease pathophysiology.

Predictors of improvement in quality of life at 12-month follow-up in patients undergoing anterior endoscopic skull base surgery.

BackgroundPatients with pituitary lesions experience decrements in quality of life (QoL) and treatment aims to arrest or improve QoL decline.ObjectiveTo detect associations with QoL in trans-nasal endoscopic skull base surgery patients and train supervised learning classifiers to predict QoL improvement at 12 months.MethodsA supervised learning analysis of a prospective multi-institutional dataset (451 patients) was conducted. QoL was measured using the anterior skull base surgery questionnaire (ASBS). Factors associated with QoL at baseline and at 12-month follow-up were identified using multivariate logistic regression. Multiple supervised learning models were trained to predict postoperative QoL improvement with five-fold cross-validation.ResultsASBS at 12-month follow-up was significantly higher (132.19,SD = 24.87) than preoperative ASBS (121.87,SD = 25.72,p<0.05). High preoperative scores were significantly associated with institution, diabetes and lesions at the planum sphenoidale / tuberculum sella site. Patients with diabetes were five times less likely to report high preoperative QoL. Low preoperative QoL was significantly associated with female gender, a vision-related presentation, diabetes, secreting adenoma and the cavernous sinus site. Top quartile change in postoperative QoL at 12-month follow-up was negatively associated with baseline hypercholesterolemia, acromegaly and intraoperative CSF leak. Positive associations were detected for lesions at the sphenoid sinus site and deficient preoperative endocrine function. AdaBoost, logistic regression and neural network classifiers yielded the strongest predictive performance.ConclusionIt was possible to predict postoperative positive change in QoL at 12-month follow-up using perioperative data. Further development and implementation of these models may facilitate improvements in informed consent, treatment decision-making and patient QoL.

The humanistic burden of vitiligo: a systematic literature review of quality-of-life outcomes.

Despite historical mischaracterization as a cosmetic condition, patients with the autoimmune disorder vitiligo experience substantial quality-of-life (QoL) burden. This systematic literature review of peer-reviewed observational and interventional studies describes comprehensive evidence for humanistic burden in patients with vitiligo. PubMed, EMBASE, Scopus and the Cochrane databases were searched through February 10, 2021, to qualitatively assess QoL in vitiligo. Two independent reviewers assessed articles for inclusion and extracted data for qualitative synthesis. A total of 130 included studies were published between 1996 and 2021. Geographical regions with the most studies were Europe (32.3%) and the Middle East (26.9%). Dermatology-specific instruments, including the Dermatology Life Quality Index (DLQI; 80 studies) and its variants for children (CDLQI; 10 studies) and families (FDLQI; 4 studies), as well as Skindex instruments (Skindex-29, 15 studies; Skindex-16, 4 studies), were most commonly used to measure humanistic burden. Vitiligo-specific instruments, including the Vitiligo-specific QoL (VitiQoL; 11 studies) instrument and 22-item Vitiligo Impact Scale (VIS-22; 4 studies), were administered in fewer studies. Among studies that reported total scores for the overall population, a majority revealed moderate or worse effects of vitiligo on patient QoL (DLQI, 35/54 studies; Skindex, 8/8 studies; VitiQoL, 6/6 studies; VIS-22, 3/3 studies). Vitiligo also had a significant impact on the QoL of families and caregivers; 4/4 studies reporting FDLQI scores indicated moderate or worse effects on QoL. In general, treatment significantly (P < 0.05) improved QoL, but there were no trends for types or duration of treatment. Among studies that reported factors significantly (P ≤ 0.05) associated with reduced QoL, female sex and visible lesions and/or lesions in sensitive areas were most common. In summary, vitiligo has clinically meaningful effects on the QoL of patients, highlighting that greater attention should be dedicated to QoL decrement awareness and improvement in patients with vitiligo.

Abstract P1-13-08: Patterns of adjuvant endocrine therapy, discontinuations, toxicities and quality of life: Development of a model for early discontinuation using the CANTO cohort

Abstract Abstract. Long-term adherence to adjuvant endocrine therapy (ET, tamoxifen and aromatase inhibitors) is paramount for patients with early-stage breast cancer. Adherence to adjuvant endocrine therapy is hampered by numerous side effects associated with sustained estrogen deprivation. We aimed to describe recent real-world patterns of therapy, patients’ discontinuations of ET, toxicities, quality of life (QoL) and to develop a predictive model of early ET discontinuation. Methods. We used the first 9595 patients of the French CANTO cohort (NCT01993498), to evaluate among 6238 premenopausal and postmenopausal patients with HR+/HER2- stage I-III BC, who were prescribed adjuvant ET: a. treatment patterns of adjuvant ET including change of ET prescription during the follow-up course b. ET-associated toxicities and c. impact on QoL. Independent variables included medical history and toxicities as measured by : Common Toxicity Criteria Adverse Events (CTCAE) v4, Patient-Reported Outcomes (PROs) including European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaires (QLQ-C30) and Breast Cancer Module (BR23), and Hospital Anxiety and Depression Scale (HADS). Treatment discontinuation and treatment change were determined on the basis of patient’s declaration and medical decisions reported in the CANTO eCRF. We used patient data at 4 months from therapy initiation to train and evaluate on a held-out test set a machine-learning model (gradient-boosted trees) that is predictive of time to early discontinuation i.e. permanent discontinuation before four years of additional therapy. Results. 4052 post-menopausal patients and 2186 premenopausal patients were included in this analysis. Median follow-up after ET initiation is 3 years and 2 months. 86% of post-menopausal patients were prescribed a non-steroidal AI initially and 92% of premenopausal patients received tamoxifen first. Discontinuation rate of the first adjuvant endocrine therapy at 1 year was 14% and 10% in premenopausal and post-menopausal patients, respectively. Among 741 post-menopausal and 340 premenopausal patients who started a second ET, discontinuation of the second prescribed adjuvant ET at 1 additional year of therapy is 30% in both populations. Patients who switched from a first adjuvant ET to a second or further one continued to have more treatment-related toxicities and associated decrements in QoL. Exclusions due to data completeness and outcome definition led to 5331 patients being used for the model (4264 in the training set and 1067 in the validation set). In that population, the permanent discontinuation rate at 3 years is 6%. Our prediction model of time to early discontinuation obtains a C-index of 0.78 in the held-out validation set. Conclusion. Tolerability and continued adherence to ET remains a challenge for many patients. Early discontinuation models may assist in identifying patients who are likely to interrupt their adjuvant ET. Adapted clinical management, including robust support and management of toxicities, as well as new and more tolerable adjuvant endocrine therapies may improve the clinical outcomes of these patients. Citation Format: Felix Balazard, Aurélie Bertaut, Élise Bordet, Stéphane Mulard, Julie Blanc, Nathalie Briot, Gautier Paux, Asma Dhaini Merimeche, Olivier Rigal, Charles Coutant, Marion Fournier, Christelle Jouannaud, Patrick Soulie, Florence Lerebours, Paul-Henri Cottu, Olivier Tredan, Laurence Vanlemmens, Christelle Levy, Marie-Ange Mouret-Reynier, Mario Campone, Keri J. S. Brady, Medha Sasane, Megan Rice, Catherine Coulouvrat, Anne-Laure Martin, Alexandra Jacquet, Ines Vaz-Luis, Christina Herold, Barbara Pistilli. Patterns of adjuvant endocrine therapy, discontinuations, toxicities and quality of life: Development of a model for early discontinuation using the CANTO cohort [abstract]. In: Proceedings of the 2021 San Antonio Breast Cancer Symposium; 2021 Dec 7-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2022;82(4 Suppl):Abstract nr P1-13-08.