Worst Health-related Quality Of Life Research Articles

Health-related quality of life among Moroccan women after vaginal birth and cesarean section: Cross-sectional study

BackgroundDuring the postpartum period, understanding women's well-being, specifically their Health-related Quality of Life (HRQoL), is vital for comprehensive healthcare. ObjectivesOur study aims to explore the HRQoL and its associated factors in Moroccan women after vaginal birth (VB) and cesarean section (CS). Study designIn this cross-sectional study we assessed the HRQoL and its associated factors among Moroccan women who gave birth at the provincial hospital center of Settat. We gathered data from 566 women, using the EQ-5D-5L instrument alongside questionnaires about socioeconomic and obstetrical aspects. The assessment was conducted utilizing the improved Relative to an Identified Distribution (RIDIT) approach, and we employed a multiple linear regression model to pinpoint the associated factors. ResultsA total of 566 women were included in our study. Our results revealed that the HRQoL in women who underwent CS was significantly lower than in VB women (EQ-5D index score = 0.30 ± 0.28 vs 0.61 ± 0.31; p < 0.0001). Similarly, the CS reduced the EQ-VAS score (mean difference = −10.73 ± 3.78; p < 0.0001). The CS was associated negatively with problems in mobility (ARI = 55 % [42–67], p < 0.0001), autonomy (ARI = 67 % [57–80], p < 0.0001), and usual activities (ARI = 56 % [42–69], p < 0.0001). Also, CS was associated with pain/discomfort (ARI = 47 % [34–60], p < 0.0001) and anxiety/depression (ARI = 3 % [-5.8-12.6], p = 0.31). The women who had birth complications had the worst HRQoL (EQ-5D index score = 0.32) compared to those who had no complications (EQ-5D index score = 0.56). Likewise, women who had postpartum complications had the worst HRQoL (EQ-5D index score = 0.39 vs EQ-5D index score = 0.54). ConclusionThe results highlighted that mode of birth, childbirth complications, and postpartum complications are strongly associated with women's HRQoL. The EQ-5D-5L dimensions were affected after delivery. Hence, there is a requirement to create specialized initiatives for overseeing postpartum HRQoL, aiming to enhance the quality of maternal healthcare.

Abstract 15228: Impact of Gender and Left Ventricular Ejection Fraction on Health-Related Quality of Life and Its Change in Patients With Heart Failure

Introduction: Health-related quality of life (HRQoL) is an important part in managing patients with heart failure (HF). However, the influence of clinical factors on HRQoL in HF remains limited. Hypothesis: This study aimed to examine HRQoL changes based on gender and left ventricular ejection fraction (LVEF) among patients with HF. Methods: A total of 199 patients hospitalized for acute HF (mean age, 71±14 years; men:women=119:80; mean LVEF=42±16) were enrolled in a prospective way from Jan 2022 to Jan 2023. Baseline and 4-month follow-up Kansas City Cardiomyopathy Questionnaire (KCCQ) scores were assessed. Patients were categorized into 4 subgroups: Group 1, women with LVEF≥50% (n=37); Group 2, men with LVEF≥50% (n=26); Group 3, women with LVEF&lt;50% (n=43); Group 4, and men with LVEF&lt;50% (n=93). Results: Women demonstrated lower KCCQ clinical and overall summary scores than men at baseline (p=0.003, 0.004, respectively) and 4-month follow-up (p=0.029, 0.038, respectively) after adjusting for age and body mass index. In addition, these scores tended to be lower in patients with LVEF ≥50% than those with LVEF &lt;50% at both baseline and follow-up (all p&lt;0.05). When we assessed KCCQ scores according to group, group 1 showed the lowest KCCQ overall summary score (KCCQ-OS: 36.9 [IQR 22.9-49.8], p=0.004) and clinical summary score (KCCQ-CS: 37.8 [IQR: 24.5-51.1], p=0.001). Also, the scores for physical limitation, symptom frequency, symptom burden, social limitation, self-efficacy scale, and total symptom score were lowest in Group 1 (all p&lt;0.05). Although HRQoL improved across all groups, the follow-up KCCQ-OS and KCCQ-CS scores remained lowest in Group 1 (KCCQ-OS: 54.0 [IQR 44.3-64.4], p=0.026; KCCQ-CS: 56.5 [IQR: 45.0-63.9], p=0.031). Conclusions: Among patients with HF, women with LVEF≥50% reported significantly worst HRQoL even after HF treatment, suggesting more attention should be paid to HRQoL in managing this specific population during HF treatment.

Health related Quality of Life over time in German sarcoma patients. An analysis of associated factors - results of the PROSa study.

Sarcomas are rare cancers and very heterogeneous in their location, histological subtype, and treatment. Health-Related Quality of Life (HRQoL) of sarcoma patients has rarely been investigated in longitudinal studies. Here, we assessed adult sarcoma patients and survivors between September 2017 and February 2020, and followed-up for one year in 39 study centers in Germany. Follow-up time points were 6 (t1) and 12 months (t2) after inclusion. We used a standardized, validated questionnaire (the European Organisation for Research and Treatment of Cancer Quality of Life Core Instrument (EORTC QLQ-C30) and explored predictors of HRQoL in two populations (all patients (Analysis 1), patients in ongoing complete remission (Analysis 2)) using generalized linear mixed models. In total we included up to 1111 patients at baseline (915 at t1, and 847 at t2), thereof 387 participants were in complete remission at baseline (334 at t1, and 200 at t2). When analyzing all patients, HRQoL differed with regard to tumor locations: patients with sarcoma in lower extremities reported lower HRQoL values than patients with sarcomas in the upper extremities. Treatment which included radiotherapy and/or systemic therapy was associated with lower HRQoL. For patients in complete remission, smoking was associated with worse HRQoL-outcomes. In both analyses, bone sarcomas were associated with the worst HRQoL values. Being female, in the age group 55-<65 years, having lower socioeconomic status, and comorbidities were all associated with a lower HRQoL, in both analyses. HRQoL increased partially over time since treatment and with sporting activities. HRQoL improved with time since treatment, although not in all domains, and was associated with lifestyle and socioeconomic factors. Bone sarcomas were the most affected subgroup. Methods to preserve and improve HRQoL should be developed for sarcoma patients.

The painful truth of waiting for hip and knee arthroplasty in Northern Ireland.

The aim of this study was to report health-related quality of life (HRQoL) and joint-specific function in patients waiting for total hip or knee arthroplasty surgery (THA or TKA) in Northern Ireland, compared to published literature and a matched normal population. Secondary aims were to report emergency department (ED) and out-of-hours general practitioner (OOH GP) visits, new prescriptions of strong opioids, and new prescriptions of antidepressants while waiting. This was a cohort study of 991 patients on the waiting list for arthroplasty in a single Northern Ireland NHS trust: 497 on the waiting list for ≤ three months; and 494 waiting ≥ three years. Postal surveys included the EuroQol five-dimension five-level questionnaire (EQ-5D-5L), visual analogue scores (EQ-VAS), and Oxford Hip and Knee scores to assess HRQoL and joint-specific function. Electronic records determined prescriptions since addition to the waiting list and patient attendances at OOH GP/EDs. Overall, 712/991 (71.8%) responded at ≤ three months for THA (n = 164) and TKA (n = 199), and ≥ three years for THA (n = 88) and TKA (n = 261). The median EQ-5D-5L score in those waiting ≤ three months was 0.155 (interquartile range (IQR) -0.118 to 0.375) and 0.189 (IQR -0.130 to 0.377) for ≥ three years. Matched controls had a median EQ-5D-5L 0.837 (IQR 0.728 to 1.000). Compared to matched controls, EQ-5D-5L scores were significantly lower in both waiting cohorts (p < 0.001) with significant differences found in every domain. Negative scores, indicating a state "worse than death", were present in 40% at ≤ three months and 38% at ≥ three years. Patients waiting ≥ three years had significantly more opioid (28.4% vs 15.2%; p < 0.001) and antidepressant prescriptions (15.2% vs 9.9%; p = 0.034) and significantly more joint-related attendances at unscheduled care (11.7% vs 0% with ≥ one ED attendance (p < 0.001) and (25.5% vs 2.5% ≥ one OOH GP attendance (p < 0.001)). Patients on waiting lists in Northern Ireland are severely disabled with the worst HRQoL and functional scores studied. The lack of deterioration in EQ-5D-5L and joint-specific scores between patients waiting ≤ three months and ≥ three years likely reflects floor effects of these scores. Prolonged waits were associated with increased dependence on strong opiates, depression, and attendances at unscheduled care.

Effect of osteoarthritis and its surgical treatment on patients’ quality of life: a longitudinal study

BackgroundOsteoarthritis (OA) is one of the primary causes of pain and disability worldwide leading to patients having some of the worst health-related quality of life (QOL). The purpose of our study was to investigate the progression of the generic and disease-specific QOL of osteoarthritic patients going through total hip or knee replacement surgery and the factors that might alter the effect of surgery on QOL.MethodsA longitudinal study was performed based on data collected from 120 OA patients who filled in the short version of the WHO’s generic measure of quality of life (WHOQOL-BREF) and the disease-specific Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC) before and after surgery.ResultsDomains related to physical health status showed relatively lower scores in patients before surgery. Patients reported a significant increase of QOL after surgery in the WHOQOL-BREF physical domain, especially if they were from the younger group (< 65 years, p = 0.022) or had a manual job (p = 0.008). Disease-specific QOL outcome results indicate that overall patients gained significantly better QOL in all domains of the WOMAC score. Patients with hip OA seemed to have the most benefit of their operation as they reported better outcome in WOMAC pain (p = 0.019), stiffness (p = 0.010), physical function domains (p = 0.011) and total score (p = 0.007) compared to knee OA patients.ConclusionThere was a statistically significant improvement in all domains concerning physical functions in the study population. Patients also reported significant improvement in the social relationship domain, which indicates that OA itself as well as its management might have a profound effect on patients’ life beyond the reduction of their pain.

Impact of risk-reducing mastectomy on quality of life of women with Li-Fraumeni syndrome.

10623 Background: Risk-reducing mastectomy (RRM) is a common strategy for managing breast cancer (BC) risk in women with Li-Fraumeni syndrome (LFS). Data on uptake and health-related quality of life (HRQoL) in LFS are limited and often extrapolated from BRCA scenario, despite the lack of evidence on survival benefits in LFS. This study evaluated RRM uptake and its impact on HRQoL in women with LFS. Methods: TP53 PV female carriers from a Brazilian LFS cohort from January 2012 to December 2022 were eligible. After informed consent, 90 women reported oncological status, uptake of RRM, and completed BREAST-Q questionnaire. Scores were compared among different BC risk management strategies and minimal important difference (MID) of ≥ 4 was described. Multivariable analyses were performed to identify surgical factors related to HRQoL outcomes. Results: 71.7% (n=33) of women diagnosed with unilateral BC (n=46) underwent contralateral risk-reducing mastectomy (CRRM) at a median age of 39 years. Among unaffected BC women (n=44), 36.3% underwent bilateral risk-reducing mastectomy (BRRM) at a median age of 36 years. CRRM was associated with lower scores for psychosocial (64[±19] vs 93[±21], p=.05) and physical well-being (72[±16] vs 92[±18], p=.001). BRRM women had lower physical well-being scores (72[±19] vs 92[±13], p=.003). MID associated with worst HRQoL outcomes were seen in all four domains on CRRM women and on satisfaction with breasts and physical well-being of BRRM patients (table). Nipple-sparing mastectomy (NSM) presented better psychosocial (74[±20] vs 52[±19], p=.04) and sexual well-being (60[±20] vs 46[±20], p=.05) when compared to skin-sparing mastectomy (SSM) on CRRM patients and with higher sexual well-being (60[±20] vs 46[±20], p=.05) on BRRM patients. Women with BRRM &gt; 2 years had better physical well-being (83[±14] vs 56 [±12], p&lt;.001). There were no significant differences in scores of women with age £35 years at the time of BRRM, although MID ≥ 4 was observed on psychosocial and sexual well-being and satisfaction with breasts: -23.0, -14.4, and -20.0, respectively. Conclusions: We observed high rates of RRM in LFS women and those were associated with worse outcomes on breast HRQoL in comparison to surveillance. The potential benefits and harms of RRM should be carefully discussed with patients before performing it, especially in LFS women where the survival benefits of these interventions remain uncertain. [Table: see text]

Cross-sectional and longitudinal comparison of health-related quality of life and mental well-being between persons with and without post COVID-19 condition.

Still little is known about the impact of post COVID-19 condition (PC) on health-related quality of life (HRQOL) and mental well-being. We compared participants with PC with three groups: an acute COVID-19 infection (AC) only, at least one chronic condition (CC) but no COVID-19, or no condition at all, healthy (PH). Between these disease groups, we also estimated and compared HRQOL and mental well-being change over time. Participants from six countries (Greece, Italy, Netherlands, Sweden, United Kingdom and United States) completed two web-based questionnaires (T1 = April-May 2020 and T2 = April-June 2022). Primary outcomes were HRQOL, measured by EQ-5D-5L and EQ VAS, and mental well-being (measured by World Health Organisation-Five (WHO-5) Well-Being Index, Patient Health Questionnaire (PHQ)-9 and General Anxiety Disorder (GAD)-7). All analyses were stratified by the disease groups. In total, 4,999 participants filled out both surveys: 240 were in PC, 107 in AC, 1798 in CC and 2,854 in PH. At T2, the mean EQ-5D-5L index values for the PC, AC, CC and PH groups were 0.70, 0.73, 0.75 and 0.92 (p < .001), respectively. Mean EQ VAS scores were 66, 65, 68 and 81 (p < .001), respectively. Poor mental well-being, depression and anxiety mean values were highest in the PC group (47.7; 9.1; 7.4), followed by the AC group (51.1; 7.7; 5.7), CC group (56.1; 5.2; 4.2) and the PH group (65.6; 2.8; 2.5), respectively (p < .001 between groups). Over time, HRQOL deteriorated in all groups, apart from the PH group. We observed the largest deterioration in the CC (EQ-5D-5L index: Δ0.03, p < .001) and AC group (EQ VAS: Δ6.3, p < .001). For the mental well-being outcomes, deterioration for WHO-5 and PHQ-9 were largest in the AC group (Δ4.8, p = .016; Δ-1.3, p = .012). Rates for GAD-7 improved for the PH and CC groups (PH: Δ1.27, CC: Δ0.56, p < .001). In the cross-sectional analysis, participants with PC had the worst HRQOL and mental well-being compared to the other groups. In terms of change since the start of the COVID-19 pandemic, HRQOL and mental well-being deterioration was highest among AC participants and had a lower impact among PC participants, most likely due to pre-existing chronic disease.

Uremic pruritus: prevalence, determinants, and its impact on health-related quality of life and sleep in Indian patients undergoing hemodialysis

BackgroundUremic pruritus has an impact on the quality of life and sleep of hemodialysis patients, but the majority of cases go unreported and untreated unless severe, due to a lack of awareness. The purpose of this study is to determine the prevalence, associated factors, and impact on health-related quality of life (HR-QOL) and sleep in hemodialysis patients.MethodologyA single-center observational study of 3 months wherein 120 adults on maintenance hemodialysis were included. Baseline characteristics, dialysis-related factors, and lab parameters influencing uremic pruritus were recorded. Those with uremic pruritus completed “12-item pruritus severity scale (12-PSS)”, “SKINDEX10”, and “Itch-MOS” questionnaires to evaluate severity, impact on HR-QOL, and sleep respectively.ResultsSixty seven over one hundred twenty (55.83%) patients had pruritus and majority were mild (40.83%) as per 12-PSS. Those with pruritus (n=67) had a mean age of 56.5±11.3 years, most were males (82%), chronic glomerulonephritis (29.1%) was the commonest cause of end-stage kidney disease, 3 active smokers, and 4 seropositive. 65(97%) patients were on twice-weekly dialysis, 36/67 had <5 years’ dialysis vintage and acceptable adequacy. There was no significant association between uremic pruritus and dialysis-related/laboratory parameters. Patients with uremic pruritus demonstrated significantly worse “HR-QOL” (p<0.001) on the “SKINDEX-10”, and patients' “Itch-MOS” scores demonstrated a significant decline in sleep quality with increasing pruritus severity (p<0.001).ConclusionThe majority of patients on maintenance hemodialysis experience uremic pruritus. None of the clinical characteristics, dialysis-related factors, and laboratory parameters affected uremic pruritus. Uremic pruritus patients had the worst HR-QOL & their sleep quality significantly declined as pruritus severity escalated.Trial registration number and date of registrationStudy approval was obtained from Institutional Research Committee and Institutional Ethical Committee (IEC 642/2021). Clinical Trial Registry of India (CTRI) registration (CTRI/2022/01/039143) was also obtained.

O018 Determining the relationships between venous reflux patterns, clinical severity, and health-related quality of life

Abstract Introduction Various classification systems have been created to describe the anatomical distribution of venous reflux, including the VEIN-TERM and Clinical-Etiology-Anatomy-Pathophysiology (CEAP) classification. It is still unclear whether different reflux patterns correlate with health-related quality of life (HRQoL) and clinical severity. Methods Some 507 chronic venous disease patients and 105 asymptomatic controls underwent duplex ultrasound assessment. Patients were stratified according to VEIN-TERM and the CEAP classification systems. The Aberdeen Varicose Vein Questionnaire (AVVQ) score was used to compare HRQoL and the Venous Clinical Severity Score (VCSS) was used to compare clinical severity between groups. Results Patients were significantly older than controls (p&amp;lt;0.00001). All VEIN-TERM reflux patterns had significantly greater VCSS than no reflux (p&amp;lt;0.001). Superficial axial and combined axial reflux were associated with significantly greater VCSS than superficial segmental reflux (p&amp;lt;0.001, p=0.042 respectively). All VEIN-TERM reflux types had significantly worse AVVQ scores than no reflux (p&amp;lt;0.03). However, there were no significant differences in AVVQ scores across all VEIN-TERM reflux patterns. Most CEAP reflux patterns had increased VCSS and worse AVVQ scores when compared to no reflux (all p&amp;lt;0.05), except for deep reflux, and deep and perforator reflux only. The deep, superficial and perforator reflux group had significantly higher VCSS (p=0.013) and AVVQ (p&amp;lt;0.001) versus the superficial reflux only group. Conclusion When compared to no reflux, both classification systems show associations of any reflux pattern with worse VCSS and AVVQ scores. Combined reflux patterns were associated with the greatest clinical severity and worst HRQoL scores.

Quality of life in intermittent exotropia for Korean children and their parents

BackgroundPatients with strabismus are more likely to have mental health problems, including high rates of depressive symptoms and social phobia. Intermittent exotropia (IXT) typically occurs in early childhood and is more common in Asian populations. We aim to assess the health-related quality of life (HRQOL) concerns in children with intermittent exotropia (IXT) using the Intermittent Exotropia Questionaire (IXTQ), and their associations with the clinical severity of IXT and the parents’ HRQOL concerns.MethodsIXT, defined as both distance and near exodeviation ≥ 10 prism diopters were eligible for inclusion. The final IXTQ score is calculated using the mean score for all items, and ranges from 0 (worst HRQOL) to 100 (best HRQOL). The correlations of child IXTQ scores with their deviation angle and stereoacuity were measured, as were those with their parent’s IXTQ scores.ResultsOne hundred twenty-two children with IXT (aged 5–17 years) and one parent for each child completed the child and parent IXTQ, respectively. The greatest HRQOL concern for each child with IXT and their parent was “Worry about eyes” (frequency 88%, score 35.0 ± 27.8). Lower child IXTQ scores were associated with a larger distance (r = 0.24, p = 0.007) and near deviation angle (r = 0.2, p = 0.026). “It bothers me because I have to wait for my eyes to clear up” and “Waiting for their eyes to clear up” were more common in children with a larger deviation angle (both p < 0.05). The parent IXTQ scores (52.1 ± 25.3) were lower than the child ones (79.7 ± 15.8) and showed a positive correlation with child IXTQ scores (r = 0.26, p = 0.004). Lower parent IXTQ scores were associated with poor distance stereoacuity (r = 0.23, p = 0.01).ConclusionThe HRQOL of IXT children was positively related to that of their parents. A larger deviation angle and worse distance stereoacuity function may predict more-negative impacts on children and their parents, respectively.

Health-related quality of life during three trimesters of pregnancy in Morocco: cross-sectional pilot study.

Pregnancy is universally considered a normal physiological process. However, it has a considerable impact on the quality of mothers' lives. This study piloted the use of the generic EuroQoL-5 Dimensions-5 Levels (EQ-5D-5L) descriptive system and the EuroQol Visual Analogue Scale (EQ-VAS) questionnaire, to assess the health-related quality of life (HRQoL) during pregnancy and its associated factors. In this cross-sectional pilot study carried out from August to December 2019 we assessed the HRQoL and its associated factors among Moroccan pregnant women who received prenatal care at Settat's health centers. The collected data from 270 pregnant women were compared to a dataset of 289 non-pregnant women using the EQ-5D-5L instrument and socioeconomic and obstetrical questionnaires. A multiple linear regression model was used to identify associated factors. The HRQoL comparison was made using the improved RIDIT approach, which allows estimating the Absolute Risk Increase (ARI) of problems related to mobility, usual activities, and self-care and the ARI of pain/discomfort and anxiety/depression (i.e. an ARI=10% in mobility means that pregnancy increases problems in this health dimension by 10%). A total of 559 women were included in our study. Our results showed that the HRQoL in pregnant women was significantly lower than in non-pregnant women (EQ-5D index score=0.71±0.24 vs 0.79±0.29; p<0.0001). Similarly, the pregnancy reduced the EQ-VAS score (mean difference=-7.8±17.21; p<0.0001). The pregnancy increased the problems in mobility (ARI=9.7% [1.7-17.6], p=0.02), in self-care (ARI=8% [2-14], p=0.01), and in usual activities (ARI=27.3% [18.9-35.7], p<0.0001). Also, the pregnancy increased pain/discomfort (ARI=26.5% [18-35.1], p<0.0001) and anxiety/depression (ARI=12% [3.2-20.9], p=0.0112). The rural pregnant women had the worst HRQoL (EQ-5D index score=0.57) compared to their urban peers (EQ-5D index score=0.77). Likewise, women in the third trimester and nulliparous had the worst HRQoL (EQ-5D index score=0.64 and 0.84 respectively). The results highlighted that place of residence, parity, and gestational age are strongly associated with pregnant's HRQoL. The five EQ-5D-5L dimensions were affected during pregnancy. Consequently, there is a need to develop specific programs to monitor the HRQoL during pregnancy in order to ensure better maternal health care. This study was funded by University Hassan First's own fund [grant number FP/01/2018].

What is the quality of life of adults with vitiligo in Mexico?

Vitiligo is an incurable, slowly progressive skin condition, the prevalence of which ranges from 0.4 to 2.0%. Health-related quality of life (HRQoL) refers to self-perceived well-being associated with the presence of a disease and its treatment. Cross-sectional study at a dermatological center. Adults with non-segmental vitiligo (NSV) were included, while patients with other pigmentary disorders and other types of vitiligo were excluded. The VitiQoL questionnaire (0 = no skin involvement, 90 = maximum skin involvement), the Vitiligo Extent Score (VES) and the Vitiligo Area Scoring Index (VASI) were applied. 492 patients did participate; 63% were women. An average score of 32.6 was obtained on VitiQoL (95% CI = 30.6-34.5). Self-perception of severity and HRQoL were correlated (r = 0.568, p < 0.001). Age, the female gender, lower education and higher self-perceived severity were associated with poorer HRQoL. The proportion of subjects who reported an addiction was similar in the worst and best HRQoL groups (28% vs. 32%, p = 0.23). Poorer HRQoL is explained by severity self-perception, concern about disease progression, appearance of the skin and necessary actions to avoid sun exposure during recreation.

Quality of Life of Chilean Breast Cancer Survivors: Multicentric Study

Introduction: As breast cancer survivorship rates increase, so does the necessity to improve survivors’ health-related quality of life (HRQoL). Objective: To analyze HRQoL among Chilean breast cancer survivors, in general and considering geographic location. In addition, to correlate HRQoL with age, education level and body mass index (BMI). Method: Cross-sectional observational study which included 125 female breast cancer survivors from three public hospitals in three Chilean Macroregions: Central, North Central, and South. The EORTC Questionnaires, QLQ-C30 and QLQ-BR23, and sociodemographic and clinical records were applied. Results: The mean age was 56.1 (±11.9) years with a HRQoL summary score of 67.6 (21.9). HRQoL was reduced mainly in emotional functioning, pain, and insomnia. Fatigue, dyspnea, appetite loss, constipation, financial difficulties, breast and arm symptoms were also reported. The women from the South Macroregion Hospital presented the worst HRQoL scores for most of the domains [general health, functioning (physical, emotional, cognitive and social), fatigue, and nausea], p&lt;0.001. The summary score of HRQoL was correlated to age (Spearman´s rho=0.202, p=0.033), BMI (rho=-0.341, p&lt;0.001), and education level (rho=0.310, p=0.001). Conclusion: Women from three Macroregions showed differences in HRQoL. The latter correlated to age, BMI, and education level. Considering the high presence of symptoms, it is necessary to improve survivorship care plans, providing access to rehabilitation in the continuum of care.

Patient-Reported Outcomes after Chimeric Antigen Receptor T-Cell (CAR-T) Therapy in Patients with Relapsed/Refractory Large B-Cell Lymphomas

Introduction: Chimeric antigen receptor T-cell (CAR-T) therapy has shown clinical efficacy in refractory and relapsed large B-cell lymphomas, but is associated with serious acute toxicities such as cytokine release syndrome (CRS) and immune effector cell-associated neurotoxicity syndrome (ICANS). As part of a larger study evaluating baseline biomarkers in prospective patients receiving CAR-T therapy at the Juravinski Hospital and Cancer Centre, we are reporting preliminary data on patient-reported health-related quality of life (HRQoL). Objective: To measure longitudinal HRQoL in patients receiving CAR-T therapy. We expected HRQoL to worsen in the first 30 days, but improve long term. Methods: A prospective cohort observational study was conducted. Patients with relapsed or refractory large B-cell lymphoma, who were eligible for CAR-T therapy, tisagenlecleucel, were consecutively approached to participate. Demographic data and disease characteristics were collected. Patients received lymphodepleting chemotherapy on days -5 to -3. CAR-T cells were infused on Day 0. CRS and ICANS were assessed using ASTCT criteria. HRQoL was measured using FACT-Lym (Hlubocky et al., Leuk. Lymphoma 2013); a validated 42-item questionnaire answered by the patient on a 5-point Likert scale on days 0 (baseline), day 30, and months 3, 6 and 12. FACT-Lym includes FACT-G (physical, social, emotional and functional well-being domains), plus a lymphoma specific subscale (Lym-S). A score of 0 represents worst HRQoL and higher scores indicate an improvement (score range, 0-168). FACT-Lym Trial Outcome Index (TOI) is a combination of physical and functional well-being and Lym-S. Minimal important differences have been estimated using anchor (performance status and disease progression) and distribution methods for FACT-Lym (Carter et al., Blood 2008). Results: Among 34 patients registered to the study between January 2020 and June 2021, two did not receive their infusion due to progressive disease. Baseline demographics and disease characteristics are described in Table 1. Twenty-one (21/32, 65.7%) patients required bridging therapy prior to CAR-T infusion. Of the 32 patients who received CAR-T infusion, 22 (68.8%) received an outpatient CAR-T infusion; 18/22 (81.8%) were admitted to hospital. 26/32 (81.2%) developed any grade CRS; 6/32 (18.8%) developed grade 3 or 4 CRS. 6/32 (18.8%) developed grade 1 or 2 ICANS and no one developed grade 3 or 4 ICANS. Ten patients died and one withdrew. The remaining 23 patients were followed for one year. Ethics approval for the FACT-Lym questionnaire administration was pending when the first four patients were recruited. Of the 28 patients approached to complete the FACT-lym questionnaire, 26 (92.9%) completed a baseline and at least one follow-up. Fifteen (15/26, 57.7%) completed the 12-month questionnaire. Two remain on study protocol. Attrition was due to death in six patients, two were unknown, and one was due to withdrawal. The median (IQR) FACT-Lym score at baseline was 129 (106, 146), then worsened at day 30, 117.5 (97, 142), and unexpectedly did not improve beyond baseline by month 3, 128 (108, 156). Scores improved by month 6, 136 (114, 154) and month 12, 141.5 (100, 158). Figure 1 illustrates median change from baseline for FACT-Lym total scores and domains. Median change in FACT-Lym total scores at month 12 and FACT-TOI score at months 6 and 12 surpassed a minimal important difference. Conclusions: After initial worsening of HRQoL in patients who received CAR-T therapy, improvements were seen at 6 and 12 months. Future analyses will explore associations between HRQoL and baseline markers, toxicity and treatment response. These results will help enrich our understanding of the patient CAR-T experience and aid in complex and shared decision-making. Figure 1View largeDownload PPTFigure 1View largeDownload PPT Close modal

The Impact of Postoperative Complications on Short- and Long-Term Health-Related Quality of Life After Total Mesorectal Excision for Rectal Cancer

BackgroundSurvival for rectal cancer patients has improved over the past decades. In parallel, long-term health-related quality of life (HRQoL) is gaining interest. This study focuses on the effect of complications following rectal cancer surgery on HRQoL and survival. MethodsThe TME-trial (1996-1999) randomized patients with operable rectal cancer between surgery with preoperative short-course radiotherapy and surgery. Questionnaires including the Rotterdam Symptom Checklist were sent at 6 time points within the first 24 months and after 14 years the EORTC QLQ-C30 and EORTC QLQ-CR29 questionnaires. Differences in HRQoL and survival between patients with and without complications were analyzed. ResultsA total of 1207 patients were included, of which 482 (39.9%) patients experienced complications, surgical complications occurred in 177 (14.6%) patients, non-surgical complications in 197 (16.3%) and 108 patients (8.9%) had a combination of both types of complications. Three months after surgery, patients with a combination of surgical- and non-surgical complications, especially patients with anastomotic leakage, had the worst HRQoL. Twelve months postoperative HRQoL returned to a similar level as before surgery, regardless of complications. In patients who survived 14 years, no significant differences in HRQoL were seen between patients with and without complications. However, patients with complications did have lower overall survival. ConclusionThis study shows that survival and short-term HRQoL are negatively affected by complications. Twelve months after surgery HRQoL had returned to the preoperative level regardless, of complications. Also, in patients that survived 14 years, there was no effect of complications on HRQoL detected.

Physical and Mental Health-Related Quality of Life Trajectories Among People With Multiple Sclerosis.

Background and ObjectivesMost studies of health-related quality of life (HRQoL) in multiple sclerosis (MS) have been cross-sectional. The few longitudinal studies have not accounted for potential heterogeneity in HRQOL trajectories. There may be groups of individuals with common physical or mental HRQoL trajectories over time. Identification of early risk factors for membership in trajectories with poor HRQoL would inform on those at risk. We aimed to identify physical and mental HRQoL trajectories among people with MS and early risk factors for membership in the trajectory groups with the worst HRQoL.MethodsBetween 2004 and 2020, we queried NARCOMS participants regarding HRQoL using the RAND-12, demographics, fatigue, and physical impairments (using the Patient-Determined Disease Steps scale). We included participants who were enrolled in the NARCOMS registry within 3 years of MS diagnosis, lived in the United States, reported physician-confirmed MS, and had ≥3 HRQoL observations. We used group-based trajectory modeling to determine whether there were distinct clusters of individuals who followed similar HRQoL trajectories over time. We evaluated whether baseline participant characteristics associated with the probability of trajectory group membership using a multinomial logit model.ResultsWe included 4,888 participants who completed 57,564 HRQoL questionnaires between 1 and 27 years after MS diagnosis. Participants had a mean (SD) age of 41.7 (9.5) years at diagnosis, and 3,978 participants (81%) were women. We identified 5 distinct physical HRQoL trajectories and 4 distinct mental HRQoL trajectories. Older age at diagnosis, worse physical impairments, and worse fatigue were associated with an increased odds of being in the group with the worst physical HRQoL when compared with being in the other 4 groups. Income ≤$50,000 and no postsecondary education were associated with an increased odds of membership in the group with the lowest mental HRQoL when compared with that in the other 3 groups.DiscussionWe identified groups of people with MS who reported similar physical and mental HRQoL trajectories over time. There are early risk factors for membership in the groups with the worst HRQoL that are easily identifiable by clinicians, providing an opportunity for early interventions.

Health-related quality of life (HRQoL) from HIV patients\u2019 perspective: comparison of patient-reported outcome (PRO) measures among people living with hiv (PLWH) and other chronic clinical conditions

BackgroundPeople living with HIV (PLWH) are generally known to suffer from a lower quality of life compared to the one of general population, but still very few is known about the self-perception of quality of life when comparing HIV to non-communicable diseases. We performed a comprehensive assessment of patient’s reported outcomes measures (PROMs) among PLWH and patients affected by other chronic conditions (OC) such as diabetes mellitus type 1, rheumatoid arthritis, breast cancer in hormonal therapy, in order to investigate differences in PROMs outcomes between PLWH and other pathologies.MethodsA cross-sectional observational study was performed by using questionnaires investigating health-related quality of life (Medical Outcomes Study Short Form 36-item Health Survey), work productivity (WPI), and global health status (EQ-5D-3L). They were administered to patients affected by chronic diseases consecutively observed at a single University Hospital during a 10 months period, with comparable disease related aspects. Logistic regression analysis was used to analyze the association between disease group (HIV vs OC) and PROMs.Results230 patients were enrolled (89 PLWH, 143 OC). Mean age: 49 years (SD 10), mean time of disease 12 years (10), 96% were Caucasian, 35% assumed polypharmacy, 42% of male were PLWH versus 16% OC (p < 0.001), 19% PLWH versus 6% OC had clinical complications (p < 0.001). HIV infection was independently associated to a better health-related quality of life in several domains compared with the other conditions, except in mental health, whereas a worst health-related quality of life in most domains was reported by older patients and those experiencing polypharmacy.ConclusionsIn this cohort of patients with chronic conditions followed within the same health setting, PLWH showed better self-reported health outcomes compared to other chronic conditions with comparable characteristics of chronicity. The potential detrimental role of older age and polypharmacy in most outcomes suggests the need of longitudinal assessment of PROMs in clinical practice.

Comparison of health-related quality of life in different polycystic ovary syndrome phenotypes: A cross-sectional study

ObjectiveThe goal of this research was to evaluate the Health-Related Quality of Life (HRQoL) of Chinese women with varying phenotypes of Polycystic Ovary Syndrome (PCOS) and related factors in order to guide clinical treatment. MethodsWe employed a cross-sectional design that included 221 women with an initial diagnosis of PCOS at the Department of Obstetrics and Gynecology, Tianjin Medical University General Hospital. All subjects were stratified, according to the Rotterdam criteria, into three sub-cohorts: phenotype A (n = 100), phenotype B (n = 60), and phenotype D (n = 61). All patients completed the Modified Polycystic Ovary Syndrome Health Related Quality of Life Questionnaire (MPCOSQ). ResultsThe three PCOS phenotypes showed no obvious differences in terms of the overall mean MPCOSQ score. However, patients in phenotype D exhibited markedly elevated weight, hirsutism, and acne scores, as compared to phenotypes A and B (p＜0.05). Among all phenotypes, A and B exhibited the worst weight-related HRQoL (3.58 ± 1.89, 3.42 ± 1.99). In contrast, phenotype D displayed the worst emotional disturbance (3.74 ± 1.25), followed by infertility (3.86 ± 1.99). According to the multiple linear regression analysis, worse HRQoL in Phenotypes A and B was significantly associated with excess body weight (Beta = -0.387,-0.626,p＜0.001), hirsutism (Beta = -0.309,-0.269p＜0.01), and abnormal menstruation (Beta = -0.283,-0.304,p＜0.01). In contrast, there was no marked association between HRQoL and hirsutism in Phenotype D. ConclusionPersonalized treatment and management must be provided, based on various factors that influence HRQoL among the three PCOS phenotypes. Based on our analysis, the interventions that greatly improve HRQoL of PCOS patients are significant weight loss, combined with anti-androgen administration for phenotypes A and B, and fertility enhancement, combined with menstruation regulation, for phenotype D.

Perception of health-related quality of life, sleep quality and sleepiness index in an educational environment at a dental school in Southeast Brazil.

University entrance is often associated with changes in quality of life, individuals' cognitive and physical behavior. The present study aimed to evaluate health-related quality of life (HRQoL), sleep quality and sleepiness index in dentistry students at a university in Southeast Brazil, in different semesters of their course. Samples were obtained from 55students from the dentistry course at the Federal University of Alfenas (UNIFAL-MG). For collecting information, validated SF-36 questionnaires (Medical Outcomes Study 36-item Short-Form Health Survey), namely, Pittsburgh Sleep Quality Index (PSQI) and Epworth Sleepiness Scale (ESS), were used as instruments in an educational environment. The relationship between the association of demographic factors and academic performance with SF-36, PSQI and ESS was assessed with an alpha of 0.05. The worst HRQoL parameters reported by the participants were observed in the domains of body pain, vitality, general health perception, and limitations due to emotional and social aspects when associated with the investigated variables. Regarding the relative sleep quality index, differences in the PSQI domains were observed when related to demographic factors and academic performance. There was no significant difference in the sleepiness index of these students according to the mean values of the ESS domains. The SF-36, PSQI and ESS questionnaires indicated that it is a reliable instrument for measuring the impact of quality of life on dentistry students. In addition, dentistry students of UNIFAL-MG had poor indicators of quality of life associated with health and an inadequate index of quality of sleep.

Depression, anxiety and health-related quality of life in paediatric intracranial germ cell tumor survivors

BackgroundLittle is known about depression and anxiety among paediatric intracranial germ cell tumour (iGCT) survivors. We aimed to evaluate the risk factors associated with depression, anxiety and health-related quality of life (HRQoL) in paediatric iGCT survivors.MethodsWe recruited 200 iGCT patients (and their parents) from Beijing Tiantan Hospital and assessed their HRQoL using the Paediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales. The Children’s Depression Inventory, Screen for Child Anxiety Related Emotional Disorders, and Symptom Checklist 90 were used to evaluate depression and anxiety. The results were analysed based on disease recurrence, tumour location and treatment strategies.ResultsSurvivors with recurrent tumours had worse HRQoL scores than those with non-recurrent tumours. Patients with tumours involving both the suprasellar and basal ganglia regions had the worst HRQoL scores. A large proportion of survivors had depression or anxiety. Both depression and anxiety scores were highly correlated with the HRQoL emotional functioning scores. The parent proxy-reports (PPR) and child self-reports were highly correlated in all domains.ConclusionsThis study demonstrated the clinical factors affecting paediatric iGCT survivors’ depression, anxiety, and HRQoL. Therefore, psychological interventions should be implemented. It also suggests that the PedsQL PPR would be helpful for routine screening.