Mental Health-related Quality Of Life Scores Research Articles

#2891 Comparing health-related quality of life and symptom burden in patients undergoing twice-weekly versus thrice-weekly haemodialysis

Abstract Background and Aims Patients with kidney failure who initiate haemodialysis (HD) have traditionally followed a thrice-weekly, 4-hour schedule. Recently, incremental dialysis (i.e. initiating HD with lower frequency and/or treatment duration) has been advocated. It has been suggested that residual kidney function is better preserved, while mortality is similar when initiating dialysis with a twice versus thrice weekly schedule. It remains unclear which impact initiating dialysis twice a week has on health-related quality of life (HRQoL) in the short and long term. Therefore, the aim of this study was first to investigate the impact of following a twice-weekly dialysis schedule on the mental and physical HRQoL and symptom burden compared to thrice-weekly dialysis during the first year of dialysis. Second, to investigate the long term impact on mental and physical HRQoL and symptom burden of patients who solely started on a twice-weekly versus thrice-weekly schedule. Method Data were obtained from the ongoing multicentre, prospective, observational Dutch nOcturnal and hoME dialysis Study To Improve Clinical Outcomes (DOMESTICO). This study longitudinally compares HRQoL between home and in-center dialysis. For this analysis, incident HD patients > 18 years were included, if they started on a twice-weekly or thrice-weekly schedule. Mental and physical HRQoL was measured using the validated 12-item Short Form Health Survey (SF12, summary scores ranging from 0 to 100). Symptom burden was measured using the dialysis symptom index (DSI), consisting of 30 items on dialysis-related symptoms, these symptoms are reported using a 5-point Likert scale. The overall burden score, ranging from 0 to 150, was calculated by summing every symptom and its severity. The first aim was longitudinally analysed using linear mixed models, using measures at 3, 6 and 12 months after start dialysis. The second aim was cross-sectionally analysed at 1, 2 and 3 years after dialysis initiation using linear regression models. All models were adjusted for possible confounders. Results A total of 1007 patients were included, of whom 205 started on a twice-weekly schedule and 802 on a thrice-weekly schedule. The total population had a mean age of 64 ± 15 years and 35% were women. There was no significant difference in baseline characteristics between twice-weekly and thrice-weekly dialysis. At baseline mental and physical HRQoL for patients on twice-weekly dialysis were 45.9 ± 9.5 and 36.0 ± 10.7, respectively. In thrice-weekly dialysis this was 45.8 ± 10.3 and 35.0 ± 9.7. The symptom burden score at baseline was 33.0 ± 19.6 for twice-weekly and 34.0 ± 21.7 for thrice-weekly patients. As shown in Table 1, there were no significant differences in HRQoL or symptom burden over the first year of dialysis when comparing twice-weekly with thrice weekly HD. In Table 2 the long-term cross-sectional analyses show that starting with a twice-weekly schedule results in physical and mental HRQoL scores gradually becoming lower, with a statistically significant decrease in physical HRQoL score at 3 years after start dialysis (ß = −0.825, 95% CI −14.11; −2.38). There was no significant difference in symptom burden between the two schedules. Conclusion We found no differences in HRQoL or symptom burden during the first year of dialysis comparing incident patients on a twice-weekly versus thrice-weekly hemodialysis schedule. Conversely, starting on a twice-weekly dialysis schedule appears to be associated with a lower HRQoL, especially physical HRQoL, in the longer term. Following our results, physicians should be cautious of the possible negative effects on HRQoL when prescribing a twice-weekly dialysis schedule.

Predictors of health-related quality of life in a large cohort of adult patients living with sickle cell disease in France: the DREPAtient study.

Sickle cell disease (SCD) is an inherited autosomal recessive disorder exhibiting a range of symptoms and acute and/or chronic complications that affect the quality of life. This study aimed to assess health-related quality of life (HRQoL) and to identify the associated factors in adult patients with SCD in France. DREPAtient is a cross-sectional, multicenter study conducted from June 2020 to April 2021 in France and in certain French overseas territories where SCD is highly prevalent. Sociodemographic and clinical data were collected online. HRQoL was assessed by the French version of the 36-Item Short Form Survey (SF-36) questionnaire. HRQoL determinants were identified using multivariable linear regression analysis. In total, 570 participants were included, mostly women (68.9%), with a mean age of 33.3 (±10.7) years. The highest mean score HRQoL was found in the Physical functioning domain (67.5 ± 21.8) and the lowest mean score in the General Health perception domain (37.7 ± 20.3). The mean score of the physical composite (PCS) and mental composite (MCS) of SF-36 summary scores was 40.6 ± 8.9 and 45.3 ± 9.8, respectively. Participants receiving oxygen therapy (β = -3.20 [95%CI: -5.56; -0.85]), those with a history of femoral osteonecrosis (-3.09 [-4.64; -1.53]), those hospitalized for vaso-occlusive crisis (VOC) or acute chest syndrome (ACS) (-2.58 [-3.93; -1.22]), those with chronic complications (-2.33 [-4.04; -0.62]), female participants (-2.17 [-3.65; -0.69]), those with psychological follow-up (-2.13 [-3.59; -0.67]), older participants (-1.69 [-3.28; -0.09]), and those receiving painkillers (-1.61 [-3.16; -0.06]) reported worse PCS score. By contrast, those who had completed secondary or high school (4.36 [2.41; 6.31]) and those with stable financial situation (2.85 [0.94, 4.76]) reported better PCS scores. Worse MCS scores were reported among participants with psychological follow-up (-2.54 [-4.28; -0.80]) and those hospitalized for VOC/ACS in the last 12 months (-2.38 [-3.99; -0.77]), while those who had relatives' support (5.27 [1.92; 8.62]) and those with stable financial situation (4.95 [2.65; 7.26]) reported better MCS scores. Adults with major SCD reported poor physical and mental HRQoL scores. Hospitalization for VOC/ACS, chronic complications, use of painkillers, perceived financial situation, and support from relatives are important predictors of HRQoL in SCD patients. Interventions to improve HRQoL outcomes SCD should be considered.

Long-term health-related quality of life and mental health in patients with immune thrombotic thrombocytopenic purpura

Immune thrombotic thrombocytopenic purpura (iTTP) is a rare and potentially life-threatening disorder. Treatment advances have lowered morbidity rates, but past acute events can still cause long-term consequences, reducing health-related quality of life (HRQoL) and determining cognitive impairment, anxiety, and depression. We aimed to investigate these aspects and the role of caplacizumab and rituximab: 39 patients were evaluated using the Medical Outcomes Study 36-Item Short Form Health Survey (SF-36), the FACIT-Fatigue, the Hospital Anxiety and Depression Scale, and the Functional Assessment in Cancer Therapy-Cognitive Function questionnaires. The median age at study inclusion was 50 years (IQR 38–60), and the median follow-up from diagnosis was 97 months (IQR 14–182); 82% of patients were female, and 36% had one or more recurrences. Caplacizumab was administered in 16 patients (41%), as well as rituximab. ITTP patients reported lower physical and mental HRQoL scores than the general population. No differences in physical or mental domains were observed between patients treated or not with caplacizumab, while those who received rituximab reported lower scores in mental health. Neurological impairment at diagnosis correlated with worse fatigue. The majority of patients (72%) reported anxiety or depression (82%). ITTP had a significant impact on the long-term cognitive function, fatigue, depression, and anxiety levels of patients, with a negative effect on their HRQoL. Our findings underscore the need to pay special attention to patients’ long-term physical and mental health, regardless of the medical treatments received.

Quality of Life in the Danish Fontan Population is Unchanged Over the Past Decade—A Nationwide Longitudinal Study

AbstractKnowledge about health-related quality of life (HRQoL) over time in Fontan patients is sparse. We aimed to describe HRQoL over a ten-year period in a population-based Fontan cohort. Further, we compared HRQoL in Fontan patients with the general population. In 2011, Danish Fontan patients were invited to participate in a nationwide study assessing HRQoL. Depending on age, 152 participants filled out either the Pediatric Quality of Life Inventory or the 36-Item Short Form Health Survey. After a decade, patients from the initial study were invited to participate in a follow-up study. All were given the same questionnaire as in the first study, plus the 12-Item Short Form Health Survey (SF-12) as part of the Danish National Health Survey. HRQoL over time was described, and SF-12 scores were compared with the general population. A total of 109 Fontan patients completed the questionnaires in both studies. The mean patient age was 14.9 ± 6.6 years and 25.6 ± 6.5 years respectively. Despite an increase in complications, HRQoL did not decrease during the study period. Physical HRQoL scores were lower than mental HRQoL scores at both time points. The SF-12 physical component score was significantly lower in Fontan patients than in the general population (median score 52 vs. 56, p < 0.001), while the SF-12 mental component score was comparable (median score 51 vs. 50, p = 0.019). HRQoL remained stable over a ten-year period in a contemporary Danish Fontan cohort. Still, the physical HRQoL remained significantly lower than that of the general population.

Assessment of quality of life and its affecting factors in osteosarcopenic individuals in the Iranian older adult population: Bushehr Elderly Health (BEH) program

ObjectivesThis cross-sectional study, conducted as part of the Bushehr Elderly Health program stage II in Bushehr, Iran, aimed to evaluate health-related quality of life (HR-QoL) in individuals aged ≥ 60 with osteosarcopenia, a condition characterized by the co-occurrence of osteopenia/osteoporosis and sarcopenia. Given the increasing elderly population worldwide, understanding the HR-QoL of this demographic is crucial, with osteosarcopenia being a significant factor. MethodsThe study enrolled 2369 participants aged ≥ 60 and collected demographic and anthropometric data. Various questionnaires, including the Short Form 12, Patient Health Questionnaire-9, Activities of Daily Living, and Instrumental Activities of Daily Living, were administered. Comparisons were made between individuals with and without osteosarcopenia. Regression models were employed to identify variables associated with HR-QoL in those with osteosarcopenia. ResultsKey findings revealed that 22.5% of participants had osteosarcopenia. Significantly different HR-QoL measures were observed between the 2 groups, especially in physical functioning and physical component summary scores. Male gender, advanced age, and chronic illnesses were linked to lower physical and mental HR-QoL scores among those with osteosarcopenia. In female participants, a history of fractures and physical disability were associated with reduced quality of life. ConclusionsThis study underscores the negative impact of osteosarcopenia on HR-QoL, particularly in male participants, with a focus on physical aspects. It also highlights age and chronic disease as contributing factors to diminished HR-QoL in individuals with osteosarcopenia. These findings emphasize the importance of addressing osteosarcopenia in the elderly population to improve their overall well-being.

Adjuvant radiation therapy and health-related quality of life among older women with early-stage endometrial cancer: an analysis using the SEER-MHOS linkage.

Radiation therapy (RT) has been associated with decreased health-related quality of life (HRQOL) in clinical trials of early-stage endometrial cancer (EC), but few studies have examined the association in real-world settings. We assessed HRQOL associated with adjuvant RT for older women with early-stage EC within a large U.S. population-based registry resource. The Surveillance Epidemiology and End Results and the Medicare Health Outcomes Survey linkage (1998-2017) was used to identify women with early-stage EC aged ≥ 65years at survey who received surgery and were diagnosed ≥ 1-year prior (n = 1,140). HRQOL was evaluated with the 36-item Short-Form Health Survey (SF-36) until 2006 and the Veterans RAND 12-Item Health Survey (VR-12) post 2006. Ordinary least squares regression was used to estimate mean difference (MD) in T scores and 95% confidence intervals (CIs) comparing treatment groups (surgery alone, adjuvant external beam radiation therapy [EBRT], or adjuvant vaginal brachytherapy [VBT]) after accounting for confounders using propensity score weighting. Overall, RT was not associated with physical health (MD = 0.97; 95% CI = -1.13, 3.07) or mental health (MD = -0.78; 95% CI = -2.60, 1.05) relative to surgery alone. In analyses by RT type, adjuvant VBT was associated with better general health on the SF-36/VR-12 subscale (MD = 3.59; 95% CI = 0.56, 6.62) relative to surgery alone. No statistically significant associations were observed for adjuvant VBT and physical or mental health, or for adjuvant EBRT and any HRQOL domain. Older women with early-stage EC treated with adjuvant RT did not report worse physical and mental HRQOL scores compared to those treated with surgery alone, though relevant symptoms should be evaluated further to fully understand the disease and treatment specific aspects of the HRQOL.

Safety, Feasibility, and Efficacy of Upfront Daratumumab-Based Therapy in Blacks with Dysproteinemia

Background: Black patients (pts) with dysproteinemia are underrepresented in clinical trials included in new drug applications and biological license application submissions. Even after approval, access to novel therapies remains a challenge. Daratumumab (dara) is an anti-CD38 monoclonal antibody, which has revolutionized the care of patients with both multiple myeloma (MM) and light chain (AL) amyloidosis. The underrepresentation of black pts in clinical trials of dara in newly diagnosed patients with dysproteinemia raises concerns regarding the safety, tolerability and efficacy of dara in this population. We report the results from a cohort of pts treated with dara in the management of newly diagnosed MM (NDMM) and AL amyloidosis. Methods: The Cancer and Aging Resilience Evaluation in Hematologic Malignancies (CARE-Heme) registry is an ongoing prospective registry enrolling pts ≥50 years of age with a diagnosis of hematologic malignancy undergoing treatment at a single institution. For this analysis, we included pts with NDMM and AL amyloidosis treated with dara-based combination therapy between January 2020 and January 2022. We obtained baseline disease- and patient-related characteristics. Toxicity was evaluated by chart review up to the first 6 cycles and adverse events (AEs) were graded using Common Terminology Criteria for Adverse Events (CTCAE v5.0). For patients receiving >1 cycle, response assessment was ascertained using International Myeloma Working Group (IMWG) uniform response criteria. All patients were followed until progression, death or last follow up and progression-free survival (PFS) and overall survival (OS) were measured using Kaplan Meier methods. Health-related quality of life (HRQoL) was measured using Patient-Reported Outcomes Measurement Information System (PROMIS) global 10 and quantified using physical health (PH) and mental health (MH) t-scores at baseline and 3 month follow up. Variables were compared in each race by using independent and paired sample t-tests as appropriate. Results: Over the study period, 36 black pts (NDMM=32; AL=4) and 50 white pts (NDMM=44; AL=6) received upfront dara-based combination therapy. There were no differences in age or sex, IGH translocations, but there was a higher incidence of cytogenetic high-risk disease among the black pts in our cohort (p=0.02). Black pts presented with more advanced disease at the time of presentation - hypercalcemia 33% vs. 14%, p=0.04; renal dysfunction 56% vs. 28%, p=0.01; anemia 67% vs. 38%, p=0.01). Incidence of bone disease was similar between the groups (p=0.69) (Table 1) Among blacks, the most utilized regimen was DaraVRd (56%), DaraRd (17%), DaraKRd (11%) and DaraVCd (11%). While for the white pts, it was DaraVRd (52%), DaraRd (12%), DaraKRd (8%) and DaraVCd (22%). Blacks had a similar incidence of ≥grade 3 non-hematologic AEs (p=0.21), with fatigue, diarrhea and leg edema being the most common. There is a trend towards higher ≥grade 3 hematologic AEs which did not reach statistical significance (p=0.05). After 6 cycles of therapy, overall response rate was comparable (100% vs. 94%, p=0.81) among the two groups (≥VGPR 47% vs. 62%, p=0.36). With 18 month median follow up, there was no difference in median PFS and OS, both not reached (Figure 1). Complete quality of life (QoL) t-scores were available at baseline for 55 pts (20 blacks and 35 whites). The baseline PH and MH related QoL scores were comparable between whites and blacks (p= 0.51; p=0.58, respectively). From baseline to 3 months follow up, PH t-scores improved in both whites as well as blacks although the difference was not statistically significant. Meanwhile, MH t-scores remained largely unchanged from baseline to follow up in both groups. Conclusions: We report the largest cohort to date of black pts with dysproteinemia systematically treated with frontline dara. Our data shows the feasibility of this strategy in a single institution setting with comparable safety, efficacy and HRQoL with the use of upfront dara-based combinations in black and white pts. Our data supports comparable clinical outcomes among black pts when treated with novel therapeutic combinations despite a higher proportion of high risk cytogenetic abnormalities in our cohort without an increase in AEs. Minority representation in cancer clinical trials as well as access to approved novel therapies can significantly help mitigate disparities in outcomes. Figure 1View largeDownload PPTFigure 1View largeDownload PPT Close modal

The association of limited health literacy with frailty, health-related quality of life (HRQoL), and health care utilization among older adults with cancer: The CARE Registry.

157 Background: Health literacy (HL) is a patient’s ability to obtain, process, and understand health information. Limited HL can act as a barrier to communication and access to medical treatment and lead to poor identification and management of comorbid conditions, resulting in frailty and impaired HRQoL; these issues remain unstudied in the geriatric oncology populations. We aimed to (1) describe the prevalence of limited HL; (2) examine the association between limited HL and frailty, HRQoL and healthcare utilization in older adults with cancer. Methods: The CARE registry prospectively enrolls older adults (≥60y) with cancer seen at UAB. Patients complete a patient-reported geriatric assessment. A single-item screening measure of HL (Stagliano et al. JABFM 2013) was also completed by the participants. Frailty was defined using the 44-item CARE frailty index (based on deficit accumulation). Multivariable analysis examined association of limited HL with CARE frailty index, HRQoL, and health care utilization, adjusting for age, race, sex, education, cancer type/stage and treatment phase. Results: The cohort included 475 participants with a mean age at enrollment of 69.4y; 61.9% were male; 18.9% were non-Hispanic Black. The most prevalent cancer types included colorectal (34.9%), pancreatic (17.5%) and hepatobiliary (11.4%) cancers. The prevalence of limited HL was 33.3%. Participants with limited HL were less educated (< HS: 23.4% vs. 4.7%, p= 0.01), older (71 vs. 68.5 years, p< 0.001), more likely to self-report as Black (26.6% vs. 15.1%, p= 0.009), and disabled (19.6% vs. 11.7%, p< 0.001). Patients with limited HL had a higher prevalence of frailty (57.6% vs 22.1%, p< 0.001) and hospitalizations (57.0% vs 45.4%, p= 0.036), as well as lower physical (39.5 vs. 46.4 p< 0.001) and mental (42.9 vs. 49.2 p< 0.001) HRQoL. In multivariable analysis, older patients with limited HL had 3.9 higher adjusted odds (aOR) of frailty (95% CI 2.4-6.3), worse physical (aOR 2.2, 95%CI 1.4-3.6) and mental (aOR 3.2 95%CI 2.0-5.2) HRQoL, and increased hospitalizations (aOR 1.8 95% CI 1.2-2.8), compared to those with adequate health literacy. Conclusions: Older cancer patients with limited HL had higher adjusted odds of frailty, lower physical and mental HRQoL scores, and higher odds of a recent hospitalization. Interventions to address limited HL should be explored in this vulnerable and growing cancer population.

Cross-lagged models of health-related quality of life and breastfeeding across different body mass index groups: A three-wave prospective longitudinal study

BackgroundBidirectional relationships between health-related quality of life (HRQoL) and breastfeeding outcomes during the perinatal period across different body mass index (BMI) groups have not been investigated. Understanding the nature of such relations can provide strategies the for development of targeted interventions. ObjectivesThis study aims to longitudinally (1) investigate the patterns of HRQoL during the perinatal period across different BMI groups; (2) explore bidirectional associations between HRQoL, breastfeeding attitude, and positive breastfeeding status during the perinatal period, and (3) compare the aforementioned relationships across four BMI groups. MethodsA three-wave prospective longitudinal design was adopted in the second and third trimesters and six weeks postpartum. Cross-lagged panel analysis was used to examine reciprocal relations between two domains of HRQoL, breastfeeding attitudes, and positive breastfeeding status from antenatal to postnatal periods. Multi-group analyses were conducted to determine whether different patterns exist in these relationships according to the four BMI groups. The BMI was self-reported. Breastfeeding attitude and HRQoL were measured by the Iowa Infant Feeding Attitude Scale and the Medical Outcomes Study Short Form Health Survey, respectively. ResultsA total of 781 perinatal multi-ethnic women were recruited in Singapore. Our results showed that the physical HRQoL scores were the lowest at Wave 2 compared with those at Waves 1 and 3, whereas the mental HRQoL scores were the lowest at Wave 3 compared with those at Waves 1 and 2 across different BMI groups. Multigroup cross-lagged path analyses showed that breastfeeding attitudes were an antecedent of physical HRQoL in women with underweight. A cross-lagged relationship was found between breastfeeding attitudes and physical HRQoL scores across Waves 1 and 2 in women with obesity. Chi-square difference tests suggested that two paths (breastfeeding attitudes to Wave 2 physical HRQoL, and Wave 2 mental HRQoL to Wave 3 positive breastfeeding status) were significantly different across the four BMI groups. ConclusionsPhysical and mental HRQoL patterns were different during the perinatal period, pre-conception counselling and perinatal care should be tailored to women's physical and mental health care needs. Reciprocal relations between physical HRQoL and breastfeeding attitudes during pregnancy were found in women with obesity. A flexible and individualised approach should provide for the woman with obesity in a respectful manner.

Quality of life of patients with multiple sclerosis receiving medical care at Palestinian Ministry of Health Directorates in the West Bank, occupied Palestinian territory, and associated factors: a cross-sectional survey

BackgroundMultiple sclerosis is a neurological disease in which the immune system attacks the myelin sheath of axons, leading to symptoms that include loss of function, fatigue, blindness, and loss of balance. It is more common in women than in men. The disease has detrimental effects on patients’ health-related quality of life (QOL), physically, socially, and emotionally. This study assessed the QOL of patients with multiple sclerosis receiving medical care at Palestinian Ministry of Health directorates. MethodsIn this cross-sectional study, we approached all patients with multiple sclerosis receiving medical care in Ministry of Health clinics in all districts of the West Bank. In total, 150 patients were willing to participate. Participants were aged between 20 and 65 years and receiving treatment in ten directorates in the West Bank. We collected data from patients when they visited the clinics to collect medicines. The multiple sclerosis quality of life-54 (MSQOL-54) instrument is a self-administered questionnaire that is divided into two sections, the first comprising questions on basic demographic and socioeconomic characteristics, and the second focusing on the patient's QOL by assessing physical, mental, and emotional health factors. The MSQOL-54 scale scores were created using the Likert method by averaging items within the scales, then row scores were linearly transformed into 0–100 scales. The physical health composite score encompassed physical function health perceptions, energy and fatigue, and role limitations (relating to physical pain, sexual function, social function, and health distress). The mental health composite score encompassed health distress, overall QOL, emotional wellbeing, and role limitations (relating to emotional and cognitive function). These constructed variables were multiplied by the weight given to each variable to give the subtotal for each composite. Univariate analyses were initially performed using frequencies for categorical variables. Mean and SD were calculated for continuous variables. FindingsPatients had a mean age of 35 years (SD 10·90), and 103 (69%) were women. 43 (29%) lived in the north of the West Bank, 68 (45%) lived in the middle, and 39 (26%) in the south. 78 (52%) had a university degree, and 101 (67%) were married. 114 (76%) had a monthly income equal to the average wage in the occupied Palestinian territory. 77 (51%) were unemployed and 82 (55%) lived in cities. 109 (73%) were diagnosed with multiple sclerosis in the first year of the appearance of symptoms, and 127 (85%) took medication regularly. 76 (51%) benefitted from medication. 149 (99%) were diagnosed as having relapsing remitting multiple sclerosis. The overall mean QOL score was 58·71 (SD 22·06). For role limitation, the mean QOL scores relating to physical and emotional problems were 32 (SD 39·51) and 32 (40·11), to physical function was 35·8 (20·82), to emotional wellbeing was 45·94 (17·88), to fatigue was 40·74 (17·91), to health perception was 42·86 (21·80), and to health distress was 3·19 (1·38). The mean physical and mental health composite scores were 40·94 (38·97) and 39·91 (36·67), respectively. Similar physical and mental components of the QOL scores were found in patients with multiple sclerosis in studies from Bosnia and Herzegovina, Slovenia, and Italy. InterpretationThis study highlights the importance of assessing the QOL of patients with multiple sclerosis in the occupied Palestinian territory. All patients had low physical and mental health-related QOL scores. For the participants in this study, the most affected components of QOL were those related to role limitations due to physical and emotional problems, physical function, emotional wellbeing, fatigue, and health perception. Health distress was found to be the most powerful predictor of QOL of patients with multiple sclerosis. The results could potentially assist the Palestinian Ministry of Health in developing plans to improve the QOL of patients with multiple sclerosis. FundingNone.

Low patient engagement is associated with reduced health-related quality of life in adults with cyclic vomiting syndrome

Introduction Patient engagement, adaptation and self-management play a critical role in improving Health Related Quality of Life (HRQOL) and reducing health care utilization in chronic disorders. There is no data on the level of patient engagement in patients with cyclic vomiting syndrome (CVS); we thus sought to determine their level of engagement and its association with clinical covariates. Methods The Patient Activation Measure (PAM-13), a validated tool that measures the degree of patient engagement in their health was administered prospectively to patients with CVS. Data on demographics, health care utilization, and HRQOL (using the NIH PROMIS 10) were obtained. Patients were stratified into low engagement (PAM 1 & 2) and high engagement (PAM 3 & 4). The Fisher’s exact test and Wilcoxon rank-sum tests were used to identifying significant differences between the groups. Results Of 96 patients, 45% of patients had low levels of patient engagement. On multivariate analysis, low patient engagement was significantly associated with an increased number of CVS hospitalizations in the past year (aOR 1.26 [1.07, 1.54] p = .010), lower mental HRQOL scores (aOR 0.88 [0.78, 0.97] p = .022), current tobacco use (aOR 4.85 [1.24, 22.74] p = .031), and patients who were newly established in a specialized CVS clinic (aOR 44.40 [5.38, 70.02] p = .002). Conclusion Almost half of CVS patients demonstrate poor patient engagement, which is associated with poor outcomes. Identifying these patients and treatment in a specialized CVS center can potentially improve HRQOL, reduce health care utilization and improve overall healthcare outcomes.

Sleep Quality and Its Associations with Physical and Mental Health-Related Quality of Life among University Students: A Cross-Sectional Study.

The association between sleep problems and quality of life has been well documented and the COVID-19 pandemic seemingly had an impact on both sleep quality and health-related quality of life (HRQoL). However, recent evidence about this relationship among university students is limited. The aims of this study are to investigate the prevalence of poor sleep quality and insomnia and to explore the associations between these outcomes, perceived stress, and HRQoL among Italian university students. An anonymous questionnaire comprising the Pittsburgh Sleep Quality Index, the Insomnia Severity Index, the Short Form-12 health survey, and the Perceived Stress Scale was administered to a convenience sample of 1279 students (1119 females and 160 males, mean age: 23.4 ± 2.5 years) attending one of the largest Italian universities. A total of 65% of the participants showed poor sleep quality, whereas 55% reported insomnia symptoms. Students reporting poor sleep quality and insomnia obtained higher perceived stress scores and lower physical and mental HRQoL scores. Controlling for health-related variables and perceived stress, hierarchical regression analyses showed that sleep quality components added a significant contribution to the prediction of both physical (ΔR2 = 0.1) and mental (ΔR2 = 0.02) HRQoL. As a whole, these findings confirm the relevance of sleep for university students’ well-being and might inform the development of health promotion interventions for this population.

More than 25 years after selective dorsal rhizotomy: physical status, quality of life, and levels of anxiety and depression in adults with cerebral palsy.

The primary purpose of selective dorsal rhizotomy (SDR) is to ameliorate spasticity in the lower extremities of children with cerebral palsy (CP). In correctly selected patients, this neurosurgical procedure has been shown to have a beneficial effect on many aspects of the child's life. However, given the challenges faced by adults with CP, it would be valuable to document the status of this population compared to their peers later in adulthood. Therefore, the aim of this study was to determine the physical status, mental health, and health-related quality of life (HRQoL) of adults with CP who underwent SDR at least 25 years ago, compared to matched typically developing (TD) individuals. The second aim was to investigate relationships between physical status and the other outcome measures. Adults with CP were recruited from a database of children who had undergone SDR performed using the technique introduced by Professor Warwick Peacock at Red Cross War Memorial Children's Hospital in Cape Town, South Africa, between 1981 and 1991. These individuals were matched for age, sex, body mass index, and socioeconomic status to a TD adult cohort from a similar background. The parameters assessed were lower-extremity muscle tone, passive range of motion, muscle strength, selectivity, functional mobility and dynamic balance (Timed Up and Go [TUG] test), HRQoL (SF-36), and anxiety and depression levels. Twenty-six adults with CP who had a median age of 35.8 years (interquartile range 34.2-41.4 years) (female/male: n = 10/16; Gross Motor Function Classification System level I/II/III: n = 13/10/3), were compared to 26 TD adults. Muscle tone was similar, whereas passive range of motion, muscle strength, selectivity, TUG, and SF-36 physical functioning (concept and summary) scores differed between the cohorts. Other SF-36 parameters, anxiety levels, and depression levels were not different. Strong correlations were found between the muscle strength and TUG scores. Normalized lower-extremity muscle tone was sustained 25-35 years after SDR. Whereas the lower scores for physical assessments are in line with findings in other CP populations, remarkably, relatively good mental health and HRQoL scores were reported in this CP group despite their physical limitations. The strong correlation between muscle strength and TUG suggests that strength training after SDR may have value in improving functional mobility and balance.

Health-related quality of life among elderly breast cancer patients treated with adjuvant endocrine therapy: a U.S Medicare population-based study.

The evidence regarding the impact of individual adjuvant endocrine therapies (AET) on health-related quality of life (HRQoL) is limited. We aimed to assess the association between the type of AET and HRQoL and to examine the relationship between HRQoL and one-year mortality among women with breast cancer in the USA. This retrospective cross-sectional study used the 2006-2017 Surveillance, Epidemiology, and End Results (SEER)-Medicare Health Outcomes Survey database to identify older women with early-stage hormone receptor-positive breast cancer. Multivariate linear regressions were used to assess the association between types of AET (anastrozole, letrozole, exemestane, and tamoxifen) and HRQoL scores (physical component summary (PCS) and mental component summary (MCS)). Multivariate logistic regressions were used to predict the impact of PCS and MCS on one-year mortality. Out of 3537 older women with breast cancer, anastrozole was the most commonly prescribed (n = 1945, 55.0%). Regarding PCS, there was no significant difference between the four AET agents. Higher MCS scores, which indicate better HRQoL, were reported in patients treated with anastrozole (vs. letrozole [β = 1.26, p = 0.007] and exemestane [β = 2.62, p = 0.005) and tamoxifen (vs. letrozole [β = 1.49, p = 0.010] and exemestane [β = 2.85, p = 0.004]). Lower PCS and MCS scores were associated with higher one-year mortality, regardless of type of AET initiated, except for tamoxifen in MCS. Although there was no significant difference in physical HRQoL scores between AET agents, anastrozole and tamoxifen were associated with better mental HRQoL scores.

Four-Year Trajectories of Health-Related Quality of Life in People Living with HIV: Impact of Unmet Basic Needs across Age Groups in Positive Spaces, Healthy Places.

Despite significant advances in antiretroviral therapy, unmet basic needs can negatively impact health-related quality of life (HRQoL) in people living with HIV, especially as they age. We aimed to examine the effect of unmet basic needs across age groups on changes in HRQoL over a 4-year period in persons with HIV. Physical and mental HRQoL scores from the Positive Spaces, Healthy Spaces cohort interviewed in 2006 (n = 538), 2007 (n = 506), and 2009 (n = 406) were examined across three age groups according to their unmet needs for food, clothing, and housing. Individual growth curve model analyses were used to investigate changes over time, adjusting for demographics, employment, living conditions, social supports, HIV status, and health behavior risks. Low scores on physical and mental HRQoL were positively associated with higher number of unmet basic needs (β = −6.40, standard error (SE) = 0.87, p < 0.001 and β = −7.39, SE = 1.00, p < 0.001, respectively). There was a slight improvement in physical and mental HRQoL over 4 years in this HIV cohort, but the burden of unmet basic needs took its toll on those over 50 years of age. Regularly assessing unmet basic needs is recommended given the impact these can have on HRQOL for people living with HIV. Recognition of unmet needs is vital, as is the development of timely interventions.

Physical and Mental Health Related Quality of Life and Their Influencing Factors on Sexual Minority Women in Korea.

Korean sexual minority women (SMW) often experience discrimination, but their health-related quality of life (HRQoL) remains to be investigated. Therefore, we aimed to assess the levels of mental and physical HRQoL of Korean SMW and their influencing factors using data from the Korean Sexual Minority Women’s Health Study (2017) in a cross-sectional study, which included lesbian and bisexual females (N = 736; age ≥19 years). The HRQoL was measured using SF-36v2®; moreover, separate multiple linear regression analyses were conducted to identify the factors influencing mental and physical HRQoL. The physical and mental HRQoL scores were average (52.38 ± 7.65) and low (38.33 ± 12.64), respectively. Significant factors influencing the physical HRQoL were bisexuality, minority stress, perceived social support, and physical activity. The same factors—apart from physical activity—were associated with mental HRQoL. Therefore, to improve the HRQoL of SMW, it is necessary to lower their minority stress and increase social support. Moreover, special attention is needed regarding bisexual women in Korea.

Restless legs syndrome/Willis-Ekbom disease in multiple sclerosis: a contributing factor for anxiety, disability, sleep disorder, and quality of life.

Restless legs syndrome (RLS) is one of the most common and burdensome sleep disorders in the course of multiple sclerosis (MS). To evaluate common MS-related symptoms and consequences between groups with and without RLS and further assess the association of quality of life determinants with RLS symptom severity. According to their RLS status, 46 relapsing-remitting MS patients were divided into MS-RLS+ (n=19) and MS-RLS- groups (n=27). Specific questionnaires were administered to assess the patients' health-related quality of life (HRQoL), fatigue levels, sleep quality, daily sleepiness, anxiety, and depression symptoms. Functional capacity was examined using the Expanded Disability Status Scale (EDSS). The prevalence of RLS was 41.3%. Compared to the MS-RLS- group, those with RLS had higher EDSS scores, more cranial and spinal lesions, longer disease duration, and were older. In the MS-RLS+ group, symptom severity scores were positively correlated with higher anxiety and poorer sleep quality. The symptom severity score was negatively correlated with mental HRQoL and pain scores. In conclusion, the findings of the current study indicate the negative impact of RLS on functional capacity, anxiety, sleep quality, and mental HRQoL of MS patients. Further studies using more accurate diagnostic strategies for identifying RLS and other sleep disorders are necessary to clarify the association of MS with RLS and explore relevant clinical implications.

Subjective mental health, incidence of depressive symptoms in later life, and the role of epigenetics: results from two longitudinal cohort studies

The role of self-perceived general health in predicting morbidity and mortality among older people is established. The predictive value of self-perceived mental health and of its possible biological underpinnings for future depressive symptoms is unexplored. This study aimed to assess the role of mental health-related quality of life (HRQOL) and of its epigenetic markers in predicting depressive symptoms among older people without lifetime history of depression. Data were based on a subgroup (n = 1 492) of participants of the longitudinal ESTHER study. An epigenome-wide association study (EWAS) of mental HRQOL was conducted using DNA from baseline whole blood samples and logistic regression analyses were performed to assess the predictive value of methylation beta values of EWAS identified CpGs for incidence of depressive symptoms in later life. The methylation analyses were replicated in the independent KORA cohort (n = 890) and a meta-analysis of the two studies was conducted. Results of the meta-analysis showed that participants with beta values of cg27115863 within quartile 1 (Q1) had nearly a two-fold increased risk of developing depressive symptoms compared to participants with beta values within Q4 (ORQ1vsQ4 = 1.80; CI 1.25–2.61). In the ESTHER study the predictive value of subjective mental health for future depressive symptoms was also assessed and for 10-unit increase in mental HRQOL scores the odds for incident depressive symptoms were reduced by 54% (OR 0.46; CI 0.40–0.54). These findings suggest that subjective mental health and hypomethylation at cg27115863 are predictive of depressive symptoms, possibly through the activation of inflammatory signaling pathway.

Physical Activity Changes and Its Risk Factors among Community-Dwelling Japanese Older Adults during the COVID-19 Epidemic: Associations with Subjective Well-Being and Health-Related Quality of Life.

Psychological distress caused by decreased physical activity (PA) is a growing concern among the elderly due to public health measures since the coronavirus disease (COVID-19). We aimed to (1) assess how public health restrictions impact PA, subjective well-being (SWB), and health-related quality of life (HRQoL) of community-dwelling elderly, and (2) investigate risk factors that lead to a decline in PA. Self-administered questionnaires assessed the changes in PA, SWB, HRQoL. Multivariate logistic regression analysis was performed to identify significant associated risk factors for decreased PA. Of 165 participants (valid response rate, 41.3%; mean age, 78.5 ± 8.0 years), 47.3% became less active, 23.0% became more active, and 29.7% maintained PA levels. There was a significant decrease in SWB at baseline and follow-up after COVID-19 restrictions in the less active group (p < 0.01). Higher levels of moderate or strenuous exercise/sports activity at baseline (odds ratio [OR], 1.12; 95% confidence interval [CI], 1.01–1.24), and lower mental component HRQoL scores at baseline (OR, 0.96; 95% CI, 0.93–0.99) were associated with an increased risk of decreased PA. Public health restrictions impact the PA of the elderly, especially those who had higher levels of exercise/sports activity and lower HRQoL before COVID-19. Decreased PA was strongly associated with lower SWB.

Abstract 1186: Relationships between health literacy, having a cancer care coordinator, and long-term health-related quality of life among cancer survivors

Abstract Care coordination has been identified as a strategy to reduce challenges navigating the healthcare system for cancer patients. The objective of this study was to assess the association between cancer patients having a cancer care coordinator during their treatment and their long-term health-related quality of life (HRQoL) after treatment, and whether this association differs by level of health literacy. A population-based sample of patients diagnosed with breast, prostate, or colorectal cancer in 2015 were recruited from the Iowa Cancer Registry and invited by mail to participate in an online survey conducted in 2017-2018 (N=369). Survey and Registry data were analyzed using linear regression to model the association between having a cancer care coordinator during active treatment with post-treatment physical or mental HRQoL, a mean of 2.7 years later, by varying levels of health literacy while controlling for sociodemographic and clinical factors.Most patients (81%) reported having one individual coordinating their cancer care. Overall, having a care coordinator was not significantly associated with physical HRQoL (p=0.113). However, patients (20%) with low health literacy, who had a care coordinator, had significantly higher physical HRQoL scores (mean difference 5.0, p=0.022), while those with medium (29%) and high (51%) health literacy, did not (p=0.223, and p=0.864, respectively). Mental HRQoL scores were not associated with the presence of a care coordinator overall or when stratified by health literacy level. Findings suggested care coordinators improved post-treatment physical HRQoL, particularly for patients with low health literacy. Care coordinators may be beneficial to patients struggling to navigate the complex healthcare system during cancer treatment. Future research should focus on the mechanisms by which care coordination affects post-treatment HRQoL. PROMIS Physical HRQoL and CCC by Health Literacy LevelPROMIS Physical HRQoLMultivariable-Adjusted means (95% CI)Cancer Care CoordinatorLow Health LiteracyMedium Health LiteracyHigh Health LiteracyYes49.4 (42.7-56.1)48.9 (43.5-54.3)52.5 (46.1-58.8)No or I Don't Know44.4 (36.2-52.5)46.6 (39.3-53.8)52.1 (45.9-58.4p-valuep=0.0223p=0.2231p=0.8640PROMIS Mental HRQoLMultivariable-Adjusted means (95% CI)Cancer Care CoordinatorLow Health LiteracyMedium Health LiteracyHigh Health LiteracyYes49.7 (44.2-55.1)49.0 (45.5-52.5)55.3 (50.1-60.4)No or I Don't Know47.5 (39.9-55.2)48.1 (43.0-53.3)53.3 (48.3-58.2)p-valuep=0.4099p=0.6168p=0.3360 Citation Format: Natalie J. Del Vecchio, Mary Charlton, Natoshia Askelson, Knute Carter, Elizabeth Chrischilles, Charles Lynch. Relationships between health literacy, having a cancer care coordinator, and long-term health-related quality of life among cancer survivors [abstract]. In: Proceedings of the Annual Meeting of the American Association for Cancer Research 2020; 2020 Apr 27-28 and Jun 22-24. Philadelphia (PA): AACR; Cancer Res 2020;80(16 Suppl):Abstract nr 1186.