Predictors of poor health-related quality of life among hemodialysis patients with anemia in Jordan

Objective This study examined health-related quality of life (HRQoL) and factors associated with poor HRQoL among hemodialysis (HD) patients. Methods A multicenter cross-sectional study was conducted on HD patients with anemia in Jordan (n = 168). Validated questionnaires were utilized to collect data on HRQoL using EQ-5D-5L, psychiatric symptoms using Hospital Anxiety and Depression Scale (HADS), and comorbidities score using the modified Charlson Comorbidity Index (mCCI). Multiple linear regression analysis was conducted to identify the variables which are independently associated with HRQoL among patients. Results The mean (± SD) age of study participants was 52.2 (± 14.6) years. The mean utility value of EQ-5D-5L was 0.44 (± 0.42). Participants reported extreme problems mostly in pain/discomfort domain (19.6%). Increased age, increased mCCI and patient complains, more years under dialysis, decreased exercise, and low family income were significantly associated with poor HRQoL (p < 0.05). Conclusion The study findings revealed poor HRQoL among HD patients with anemia. Various dimensions of health were negatively affected among HD patients. Development and implementation of appropriate approaches with adequate education and psychosocial support to HD patients by healthcare professionals targeting improved HRQoL and clinical outcomes would be necessary.

Health-Related Quality of Life in Multiple System Atrophy using EQ-5D-5L: A Large Cross-Sectional Study in China

Background Multiple system atrophy (MSA) is a rare neurodegenerative disease, featuring autonomic failure plus parkinsonism and/or cerebellar ataxia. These symptoms impact the health-related quality of life (HRQoL) of MSA. Objective We aimed to evaluate the HRQoL of MSA with a preference-based instrument, the five-level EuroQol five-dimensions questionnaire (EQ-5D-5L), for the first time.Methods EQ-5D-5L was used to evaluate the HRQoL. The result of HRQoL was displayed as heath utility index and visual analog scale (EQ-VAS) score. Specific scales were used to measure the disease severity, cognition, frontal lobe function, anxiety, depression, fatigue, and sleep disorders. The forward logistic model was used to explore the determinants of HRQoL in MSA.Results A total of 205 patients with cerebellar variant (MSA-C, 53.9%) and 175 patients with parkinsonian variant (MSA-P, 46.1%) patients were included in the study. The mean scores of the health utility index and EQ-VAS were 0.558 and 59.5, respectively. Mobility was reported by the largest proportion (92.1%) of MSA patients, followed by usual activities (88.7%), self-care (81.3%), anxiety/depression (72.1%), and pain/discomfort (53.9%). The determinants of the lower health utility index in MSA were female sex, greater total Unified Multiple System Atrophy Rating Scale (UMSARS) scores, fatigue, and Parkinson's disease-related sleep problems (PD-SP). Lower EQ-VAS score was associated with greater total UMSARS scores, fatigue, PD-SP, and anxiety symptom. MSA-P patients reported more frequent problems in pain/discomfort than MSA-C patients, while MSA-C patients reported more problems in mobility than MSA-P patients. Conclusion Patients with MSA had poor HRQoL evaluated by EQ-5D-5L. The most frequent affected problem is mobility in the Chinese MSA population. Besides the severity of MSA, fatigue, PD-SP and anxiety were determinants for poor HRQoL. Our research provides important information to improve the health status of patients with MSA.

Health-related quality of life in multiple system atrophy using EQ-5D-5L: a large cross-sectional study in China

Background Multiple system atrophy (MSA) is a rare neurodegenerative disease, featuring autonomic failure plus parkinsonism and/or cerebellar ataxia. These symptoms impact the health-related quality of life (HRQoL) of MSA. Objective We aimed to evaluate the HRQoL of MSA with a preference-based instrument, the five-level EuroQol five-dimensions questionnaire (EQ-5D-5L), for the first time. Methods EQ-5D-5L was used to evaluate the HRQoL. The result of HRQoL was displayed as heath utility index and visual analog scale (EQ-VAS) score. Specific scales were used to measure the disease severity, cognition, frontal lobe function, anxiety, depression, fatigue, and sleep disorders. The forward logistic model was used to explore the determinants of HRQoL in MSA. Results A total of 205 patients with cerebellar variant (MSA-C, 53.9%) and 175 patients with parkinsonian variant (MSA-P, 46.1%) patients were included in the study. The mean scores of the health utility index and EQ-VAS were 0.558 and 59.5, respectively. Mobility was reported by the largest proportion (92.1%) of MSA patients, followed by usual activities (88.7%), self-care (81.3%), anxiety/depression (72.1%), and pain/discomfort (53.9%). The determinants of the lower health utility index in MSA were female sex, greater total Unified Multiple System Atrophy Rating Scale (UMSARS) scores, fatigue, and Parkinson's disease-related sleep problems (PD-SP). Lower EQ-VAS score was associated with greater total UMSARS scores, fatigue, PD-SP, and anxiety symptom. MSA-P patients reported more frequent problems in pain/discomfort than MSA-C patients, while MSA-C patients reported more problems in mobility than MSA-P patients. Conclusion Patients with MSA had poor HRQoL evaluated by EQ-5D-5L. The most frequent affected problem is mobility in the Chinese MSA population. Besides the severity of MSA, fatigue, PD-SP and anxiety were determinants for poor HRQoL. Our research provides important information to improve the health status of patients with MSA.

Impact of malnutrition on health-related quality of life in persons receiving dialysis: a prospective study

Health-related quality of life (HRQoL) is severely impaired in persons receiving dialysis. Malnutrition has been associated with some measures of poor HRQoL in cross-sectional analyses in dialysis populations, but no studies have assessed the impact of malnutrition and dietary intake on change in multiple measures of HRQoL over time. We investigated the most important determinants of poor HRQoL and the predictors of change in HRQoL over time using several measures of HRQoL. We enrolled 119 haemodialysis and 31 peritoneal dialysis patients in this prospective study. Nutritional assessments (Subjective Global Assessment [SGA], anthropometry and 24-hour dietary recalls) and HRQoL questionnaires (Short Form-36 [SF-36] mental [MCS] and physical component scores [PCS] and European QoL-5 Dimensions [EQ5D] health state [HSS] and visual analogue scores [VAS]) were performed at baseline, 6 and 12 months. Mean age was 64(14) years. Malnutrition was present in 37% of the population. At baseline, malnutrition assessed by SGA was the only factor independently (and negatively) associated with all four measures of HRQoL. No single factor was independently associated with decrease in all measures of HRQoL over 1 year. However, prevalence/development of malnutrition over one year was an independent predictor of 1-year decrease in EQ5D HSS and 1-year decrease in fat intake independently predicted the 1-year decline in SF-36 MCS and PCS, and EQ5D VAS. These findings strengthen the importance of monitoring for malnutrition and providing nutritional advice to all persons on dialysis. Future studies are needed to evaluate the impact of nutritional interventions on HRQoL and other long-term outcomes.

Abstract P085: Racism, Resilience, And Quality Of Life In Black Stroke Survivors: A Mixed-methods Cohort Study Protocol

Introduction: Annual age-adjusted incidence and death rates for stroke are significantly higher among Black Americans than among White Americans. Racism, which operates at structural, cultural and interpersonal levels, exerts significant stress on Black Americans and contributes to health disparities, including those related to stroke. Health-related quality of life (HRQoL) encompasses an individual’s self-perception of physical, mental, and social health. The combined effects of racism, stroke-related stress, and psychosocial stressors can result in negative outcomes, including poor HRQoL for Black stroke survivors. Resilience refers to maintaining relatively stable, healthy psychological and physical functioning in the aftermath of a stressful event like stroke. The purpose of this study will be to examine the effects of racism, resilience, and key psychosocial variables on Black stroke-survivor HRQoL. Hypothesis: We hypothesize racism and lower resilience will be associated with lower HRQoL. Methods: We will conduct a mixed-methods cohort study to examine the effects of racism and resilience on HRQoL of Black stroke survivors recruited from a stroke clinic in a large metropolitan area in the southeast US. Adult community-dwelling stroke survivors who self-identify as Black or African American and who have experienced a stroke event in the past 1 to 2 months will be eligible for study inclusion. Baseline quantitative data collection will occur at the initial clinic visit, with follow-up data collection at 5 to 6 months’ post-stroke. The exposure variables will be racism and resilience, and the outcome variable will be physical, mental, and social HRQoL. Qualitative data will be collected via focus groups. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines will be followed to report study results. Results: Power calculations for a two-tailed linear regression analysis with α ≤ .05, β .80, and an effect size of .15 (medium) resulted in a required sample size of 68. Our targeted sample size of 82 participants (41 males and 41 females) accounts for an attrition rate of 20%. The statistical approach to test the direct effects of each exposure variable on HRQoL will be multiple-level models. An interaction term for resilience will be included in the racism model. Qualitative data will be audio recorded, transcribed, and analyzed for themes regarding racism and resilience. Conclusions: Studies of the effects of racism on outcomes for Black stroke survivors are largely absent. This study will provide a first step toward identifying Black stroke survivors at risk for poor HRQoL in early stroke recovery.

Neutral theory: applicability and neutrality of using generic health-related quality of life tools in diseases or conditions where specific tools are available

Background Health-related quality of life (HRQoL) tools are limited by the indicators included in the construct and variation in interpretation by different researchers. Neutral Theory describes the ideal construct that includes all relevant indicators and, therefore, complete accuracy, or neutrality. Neutral Theory can thereby provide the framework to develop or test constructs. To assess the application of Neutral Theory, the neutrality of generic tools (SF-36 and EQ-5D) at measuring HRQoL was compared to disease/condition-specific tools, with the latter considered surrogates for the Neutral construct. Methods Full descriptions of all disease/condition-specific HRQoL tools published on PubMed (to 01-Jul-19) were sourced. For each tool, the number of items with and without a direct match within the SF-36 and EQ-5D was recorded and the sensitivity/specificity calculated. Results The SF-36 and EQ-5D did not achieve a sensitivity/specificity both > 50% against any of the 163 disease/condition-specific tools identified. At 20% prevalence of poor HRQoL, the false positive rate (FPR) was > 75% for all but two tools against the SF-36 and six tools against the EQ-5D. Increasing poor HRQoL to 80%, 47 tools for the SF-36 and 48 tools for the EQ-5D had a FPR < 50%. For rare disease tools (< 1/2000 population; n = 17), sensitivity/specificity ranged from 0 to 40%/5–31% for the SF-36 and 0–22%/29–100% for the EQ-5D. For non-rare (n = 75) and symptom-specific tools (n = 71) sensitivity/specificity was: 0–100%/0–100% (SF-36) and 0–50%/0–100% (EQ-5D); and 0–60%/0–19% (SF-36) and 0–25%/0–100% (EQ-5D), respectively. No concordance was recorded for 18% (2/11) of results from studies of rare disease tools versus the SF-36 (no data vs EQ-5D). For non-rare, disease-specific tools, results were discordant for 30% (25/84) and 35% (23/65) of studies against the SF-36 and EQ-5D, respectively. For symptom-specific tools, corresponding results were 36% (24/66) and 16% (5/31). Conclusions Generic HRQoL tools appear poorly correlated with disease/condition-specific tools, which indicates that adoption of Neutral Theory in the development and assessment of HRQoL tools could improve their relevance, accuracy, and utility in economic evaluations of health interventions.

Factors Affecting Quality of Life in Liver Transplant Candidates: An Observational Study

Health-related quality of life (HRQOL) before and after liver transplant (LT) is an important outcome in LT candidates as, in these patients, HRQOL is commonly impaired. However, evidence regarding factors that influence HRQOL in patients with end-stage liver disease is inconclusive. The aim of the present study was to identify factors associated with poor HRQOL. An observational study was conducted over LT candidates. The 36-item Short Form Health Survey (widely used to assess HRQOL) and the Hospital Anxiety and Depression Scale were administered to 211 patients during the pre-transplant assessment. Baseline demographic and clinical data were also collected. Multiple regression analysis was performed to investigate risk factors for poor HRQOL. Female sex (lower B = 7.99 95%C = 0.07–15.92, higher B = 18.09 95%CI = 7.56–28.62), encephalopathy (lower B = −9.45, 95%CI = −14.59–−4.31, higher B = −6.69, 95%CI = −13.13 to −0.25), higher MELD scores (lower B = −1.14, 95%CI = −1.67 to −0.61, higher B = −0.33, 95%CI = −0.65 to −0.12), anxiety (lower B = −3.04 95%C = −4.71 to −1.36, higher B = −1.93 95%CI = −3.39 to −0.47)and depression (lower B = −3.27 95%C = −4.46 to −2.08, higher B = −1.02 95%CI = −1.90 to −0.13) symptoms were associated to poorer HRQOL. Psychosocial interventions should be addressed to liver transplant candidates, especially to women, patients with anxiety, depression or episodes of encephalopathy, in order to prevent the impact that these conditions can have on HRQOL.

Health-Related Quality of Life in Children with Kaposiform Hemangioendothelioma : A Case Control Study

Background and objective: Kaposiform hemangioendothelioma (KHE) is a rare, aggressive and borderline vascular tumor mainly occurring in infants and children. The aim of this study was to determine the health-related quality of life (HRQOL) in children with KHE. Methods: A total of 91 children with KHE participated in this cross-sectional study. The HRQOL was assessed by the age-specific Pediatric Quality of Life Inventory Version 4.0 (PedsQL™ 4.0) Infant Scales, Family Information Form (FIF), Family Impact Module (FIM) and Generic Core Scales (GCS). For comparison, demographically matched healthy children were recruited as a control group. The main outcome measure of HRQOL was analyzed in the two groups. We determined related factors that influenced the HRQOL in children with KHE and their parents by using a stepwise multiple regression analysis. Results: Except for social and cognitive functioning, we found significant differences in the PedsQL™ 4.0 Infant Scales subscales between the patient group and healthy group (P<0.05). In the PedsQL™ 4.0 GCS, all the subscales were significantly different between the patient group and the healthy group (P<0.05). Additionally, in the ≤24 month age group, there were significant differences in the HRQOL between patients with and without Kasabach-Merritt phenomenon (KMP) in physical, physical symptoms, emotional and cognitive functioning (P<0.05). In the >24 month age group, physical, emotional and social functioning were significantly different between the patients with and without activity dysfunction (P<0.05). Conclusions: The findings presented here suggest that patients with KHE have a poor HRQOL. KMP and activity dysfunction are risk factors for poor HRQOL in patients with KHE. However, lesion size, lesion location and education level of the mother and father were not related to the HRQOL.

Neutral Theory: Applicability and Neutrality of Using Generic Health-related Quality of Life Tools in Diseases or Conditions Where Specific Tools Are Available

Background:Health-related quality of life (HRQoL) tools are limited by the indicators included in the construct and variation in interpretation by different researchers. Neutral Theory describes the ideal construct that includes all relevant indicators and, therefore, complete accuracy, or Neutrality. Neutral Theory can thereby provide the framework to develop or test constructs. To assess the application of Neutral Theory, the Neutrality of generic tools (SF-36 and EQ-5D) at measuring HRQoL was compared to disease/condition-specific tools, with the latter considered surrogates for the Neutral construct. Methods:Full descriptions of all disease/condition-specific HRQoL tools published on PubMed (to 01-Jul-19) were sourced. For each tool, the number of items with and without a direct match within the SF-36 and EQ-5D was recorded and the sensitivity/specificity calculated. Results:The SF-36 and EQ-5D did not achieve a sensitivity/specificity both >50% against any of the 163 disease/condition-specific tools identified. At 20% prevalence of poor HRQoL, the false positive rate (FPR) was >75% for all but two tools against the SF-36 and six tools against the EQ-5D. Increasing poor HRQoL to 80%, 47 tools for the SF-36 and 48 tools for the EQ-5D had a FPR <50%. For rare disease tools (<1/2,000 population; n=17), sensitivity/specificity ranged from 0-40%/5-31% for the SF-36 and 0-22%/29-100% for the EQ-5D. For non-rare (n=75) and symptom-specific tools (n=71) sensitivity/specificity was: 0-100%/0-100% (SF-36) and 0-50%/0-100% (EQ-5D); and 0-60%/0-19% (SF-36) and 0-25%/0-100% (EQ-5D), respectively. No concordance was recorded for 18% (2/11) of results from studies of rare disease tools versus the SF-36 (no data vs EQ-5D). For non-rare, disease-specific tools, results were discordant for 30% (25/84) and 35% (23/65) of studies against the SF-36 and EQ-5D, respectively. For symptom-specific tools, corresponding results were 36% (24/66) and 16% (5/31).Conclusions:Generic HRQoL tools appear poorly correlated with disease/condition-specific tools, which indicates that adoption of Neutral Theory in the development and assessment of HRQoL tools could improve their relevance, accuracy, and utility in economic evaluations of health interventions.

Health-Related Quality of Life and Related Factors in Persons with Preserved Ratio Impaired Spirometry: Data from the Korea National Health and Nutrition Examination Surve

Background and Objectives: preserved ratio impaired spirometry (PRISm) is a common spirometric pattern that causes respiratory symptoms, systemic inflammation, and mortality. However, its impact on health-related quality of life (HRQOL) and its associated factors remain unclear. We aimed to identify these HRQOL-related factors and investigate the differences in HROOL between persons with PRISm and those with normal lung function. Materials and Methods: we reviewed the Korea National Health and Nutrition Examination Survey data from 2008 to 2013 to evaluate the HRQOL of persons with PRISm, as measured while using the Euro Quality of Life-5D (EQ-5D) and identify any influencing factors. PRISm was defined as pre-bronchodilator forced expiratory volume in 1 s (FEV1) <80% predicted and FEV1 to forced vital capacity (FVC) ratio (FEV1/FVC) ≥0.7. Individuals with FEV1 ≥80% predicted and FEV1/FVC ≥0.7 were considered as Controls. Results: of the 27,824 participants over the age of 40 years, 1875 had PRISm. The age- and sex-adjusted EQ-5D index was lower in the PRISm group than in the control group (PRISm, 0.930; control, 0.941; p = 0.005). The participants with PRISm showed a significantly higher prevalence of hypertension (p < 0.001), diabetes (p < 0.001), obesity (p < 0.001), low physical activity (p = 0.001), ever-smoker (p < 0.001), and low income (p = 0.034) than those in the control group. In participants with PRISm, lower EQ-5D index scores were independently associated with old age (p = 0.002), low income (p < 0.001), low education level (p < 0.001), and no economic activity (p < 0.001). Three out of five EQ-5D dimensions (mobility, self-care, and usual activity) indicated a higher proportion of dissatisfied participants in the PRISm group than the control group. Conclusions: the participants with PRISm were identified to have poor HRQOL when compared to those without PRISm. Old age and low socioeconomic status play important roles in HRQOL deterioration in patients with PRISm. By analyzing risk factors that are associated with poor HRQOL, early detection and intervention of PRISm can be done in order to preserve patients’ quality of life.