Impaired Health-related Quality Of Life Research Articles

Health-related quality of life in stroke survivors: a 5-year follow-up of The Fall Study of Gothenburg (FallsGOT)

BackgroundThere are limited data on long-term prevalence and predictors of health-related quality of life (HRQoL) in stroke survivors. Therefore, the aim was to describe the prevalence of impaired HRQoL, and to identify factors in acute stroke that are associated with impaired HRQoL, 5 years after stroke.MethodsThe 305 (60.5%) stroke survivors of the original 504 participants from The Fall Study of Gothenburg were invited to participate in a 5-year follow-up including assessment of HRQoL using the EuroQol 5 Dimensions 3 Levels questionnaire (EQ-5D-3L). To identify baseline predictors of impaired HRQoL, based on the EQ-5D-3L’s five dimensions, univariate and multivariate logistic regression analyses were performed.ResultsA total of 129 participants (42.3% of the survivors) completed the questionnaire at a median follow-up time of 58 months. At baseline, their mean age was 70.6 years, and they had a median NIHSS score of 1. The median (interquartile range [IQR]) EQ-5D-3L index score was 0.87 (0.71–0.93) and the median (IQR) EQ-visual analogue scale was 70 (49.8–88). In total, 102 (79%) participants were classified as having impaired HRQoL, stated primarily (among 68.5%) related to Pain/Discomfort. Higher age was identified as a predictor of impaired HRQoL related to Mobility (Odds ratio (OR) 1.05, 95% confidence interval (CI) 1.01–1.10) and Self-Care (OR 1.09, 95% CI 1.02–1.17), and longer hospital stay at baseline was identified as a predictor related to Mobility (OR 1.09, 95% CI 1.01–1.18), Self-Care (OR 1.10, 95% CI 1.02–1.18)) and Usual Activities. (OR 1.10, 95% CI 1.03–1.18).ConclusionAt 5 years after stroke, four out of five participants (79%) reported impaired HRQoL related to any of the five dimensions assessed by using the EQ-5D-3L. Most reported, impaired HRQoL was related to Pain/Discomfort. Higher age and longer hospital care period at index stroke were associated with impaired HRQoL. The findings could assist to identify individuals at high risk of low HRQoL, who might benefit from special attention and psychological support.

Prevalence and characteristics of pain in moderate-to-severe obstructive sleep apnea patients and effect of CPAP treatment

Pain problems are common in patients with obstructive sleep apnea (OSA), but few studies have thoroughly evaluated pain in these patients. The objective of this study was to examine the prevalence and characteristics of pain in moderate-to-severe OSA patients and the effect of continuous positive airway pressure (CPAP) treatment. Moderate-to-severe OSA patients and healthy controls (HC) completed the Short Form McGill Pain Questionnaire (SF-MPQ) and a portion of the Brief Pain Inventory (BPI) Short Form to assess pain characteristics. The Epworth Sleepiness Scale (ESS), the Short Form-36 (SF-36), and the Hospital Anxiety and Depression Scale (HADS) were used to measure daytime sleepiness, health-related quality of life (HRQoL), and psychological status, respectively. The OSA patients with pain were divided into a CPAP-treated group and a CPAP-untreated group based on their adherence to CPAP. The subjects' pain intensity was reassessed after 3 months. The prevalence of pain was 57.5% in OSA versus 27.1% in HC (p < 0.001). Head (39.0%) accounted for the highest proportion of overall pain locations in subjects with OSA, with 28.8% of OSA patients experiencing headaches. Pain in OSA was associated with impaired HRQoL and psychological problems. Patients with very severe OSA had an increased risk for pain problems (OR: 7.000, p = 0.041). Associated factors for pain intensity in OSA included age, ESS ≥ 9.0, and lowest pulse oximetry (LSpO2) < 80.0%. Pain intensity in OSA decreased significantly after CPAP treatment (p < 0.001). Pain was prevalent among patients with moderate-to-severe OSA and was associated with depression, anxiety, and a lower HRQoL. Patients with very severe OSA had an increased risk for pain problems. The intensity of pain in OSA can be predicted by age, ESS ≥ 9.0, and LSpO2 < 80.0%, and it can be alleviated through CPAP treatment.

Burden of immune thrombocytopenia (ITP): Special considerations for refractory ITP.

It is known that patients with immune thrombocytopenia (ITP) have fatigue and impairment of health-related quality of life (HRQoL). However, it is hypothesized that patients with refractory ITP have additional burdens that should be considered. Specifically, fatigue is more pronounced in patients with refractory disease, there are additional side effects from second- and third-line treatments, additional anxiety about the long-term course of the disease, impairment in HRQoL resulting from heavy menstrual bleeding and concerns related to family planning. The burden of disease, therefore, should be carefully assessed and considered in these patients. However, researchers have utilized numerous tools for evaluating HRQoL and fatigue, making comparison of data across studies challenging. There is a need to standardize assessment using either disease-specific or generic instruments that can be easily implemented in routine clinical practice. Additionally, whether treatment of low platelet count and bleeding symptoms will have a positive influence on HRQoL remains to be seen and published evidence is conflicting. Nevertheless, improvement of HRQoL is a major treatment goal for both patients and physicians and should be especially considered when treating patients with refractory ITP.

Relationship Between Asthma Control Status and Health-Related Quality of Life in Japan: A Cross-Sectional Mixed-Methods Study.

There is limited information regarding multidimensional relationships between asthma control and health-related quality of life (HRQoL), work productivity, and asthma symptom burden in Japan. Furthermore, systematic qualitative investigations about asthma burden have not been performed. This cross-sectional, mixed-methods study included Japanese patients (≥ 20years) with asthma adherent to inhaled corticosteroids/long-acting β2-agonists (ICS/LABA). The primary endpoint was impact of asthma on HRQoL, measured using the Asthma Health Questionnaire-33 (AHQ-33). Secondary endpoints were cough burden (Japanese-adapted Leicester Cough Questionnaire [J-LCQ]) and impact of asthma on work/activities (asthma-specific Work Productivity and Activity Impairment Questionnaire [WPAI:Asthma]). Quantitative data were assessed for the overall population and for well-controlled (WC) and not well-controlled (NWC) asthma subgroups. Qualitative verbal interviews further assessed the impact of NWC asthma on patients' HRQoL; emergent themes were extracted using thematic analyses. Of 454 patients, 45.2% (n = 205) had NWC asthma. Patients with NWC asthma had significantly worse asthma- and cough-related HRQoL across all AHQ-33 and J-LCQ domains and significantly greater work and activity impairment versus patients with WC asthma, across all assessed WPAI:Asthma domains. AHQ-33 total score was highly correlated with J-LCQ total and domain scores (r = -0.8132 to r = -0.7407). Nine themes emerged from qualitative interviews and confirmed that patients with NWC asthma had considerable HRQoL impairment due to asthma symptoms. Patients with NWC asthma had higher symptom burden and worse HRQoL than patients with WC asthma, despite ICS/LABA adherence. Cough burden correlated with HRQoL, suggesting cough may be one of the key markers to inform treatment strategy for patients with asthma.

Insomnia and sleep-disordered breathing in FKRP-related limb-girdle muscular dystrophy R9. The Norwegian LGMDR9 cohort study (2020)

Limb-girdle muscular dystrophy R9 (LGMDR9) is a progressive and disabling genetic muscle disease. Sleep is relevant in the patient care as it impacts on health, functioning, and well-being. LGMDR9 may potentially affect sleep by physical or emotional symptoms, myalgia, or sleep-disordered breathing (SDB) through cardiorespiratory involvement. The objective was to investigate the occurrence of insomnia and unrecognized or untreated SDB in LGMDR9, associated factors, and relationships with fatigue and health-related quality of life (HRQoL). All 90 adults in a Norwegian LGMDR9 cohort received questionnaires on sleep, fatigue, and HRQoL. Forty-nine of them underwent clinical assessments and 26 without mask-based therapy for respiration disorders additionally underwent polysomnography (PSG) and capnometry. Among 77 questionnaire respondents, 31% received mask-based therapy. The prevalence of insomnia was 32% of both those with and without such therapy but was significantly increased in fatigued respondents (54% vs 21%). Insomnia levels correlated inversely with mental HRQoL. Among 26 PSG candidates, an apnea–hypopnea index (AHI) ≥ 5/h was observed in 16/26 subjects (≥ 15/h in 8/26) with median 6.8 obstructive apneas and 0.2 central apneas per hour of sleep. The AHI was related to advancing age and an ejection fraction < 50%. Sleep-related hypoventilation was detected in one subject. Fatigue severity did not correlate with motor function or nocturnal metrics of respiration or sleep but with Maximal Inspiratory Pressure (r = − 0.46). The results indicate that insomnia and SDB are underrecognized comorbidities in LGMDR9 and associated with HRQoL impairment and heart failure, respectively. We propose an increased attention to insomnia and SDB in the interdisciplinary care of LGMDR9. Insomnia and pulmonary function should be examined in fatigued patients.

Health-related quality of life aspects of the 'Periodontitis prevalence in ulcerative colitis and Crohn's disease' (PPCC) cohort.

To assess whether oral health problems affect disease-specific quality of life (QoL) of inflammatory bowel disease (IBD) patients, and vice versa, whether IBD affects oral-health-related QoL. Individuals reporting IBD and matched controls were surveyed on general anamnestic information, oral-health-related questions and the Oral Health Impact Profile (OHIP)-5. IBD patients were additionally surveyed on years since diagnosis, disease activity and severity as well as health-related QoL (Short Inflammatory Bowel Disease Questionnaire, sIBDQ). OHIP-5 and sIBDQ were defined as primary outcome parameters, and several predictors and confounders were used in adjusted univariable and multivariable regression analyses. Answers from 1108 IBD patients and 3429 controls were analysed. Compared with controls, IBD patients reported significantly more frequently an oral impact on daily life and worse oral-health-related QoL, with Crohn's disease (CD) patients being more severely affected than ulcerative colitis (UC) patients. The diagnosis of UC and CD, having <20 teeth, severe periodontitis and stressful daily-life experience were associated with a higher prevalence of poor oral-health-related QoL. Among IBD patients, an impaired IBD-specific, health-related QoL was significantly associated with the diagnosis of CD and depression, IBD activity and severity, having <20 teeth, presence of oral lesions and stressful daily-life experience, while a longer time since diagnosis was significantly associated with an improved IBD-specific, health-related QoL. The results of the present study indicate, for the first time, that oral health problems are associated with an impairment of IBD-specific health-related QoL, and vice versa, IBD is associated with an impaired oral health-related QoL. This emphasizes the potential advantages of including dental professionals in the multi-disciplinary treatment teams of IBD patients.

Health-related quality of life in children with congenital vascular malformations

A cross-sectional study was performed to evaluate health-related quality of life (HRQOL) in children with congenital vascular malformations (CVM) and to investigate factors associated with an impaired HRQOL. Children (2–17 years) with CVMs who visited the HECOVAN expertise center between 2016–2018 were included. The PedsQL 4.0 Generic Core Scales were used and a score ≥ 1.0 SD below the normative mean was defined as an impaired HRQOL. Factors associated with impairment were investigated using univariate and multivariate logistic regression analysis. The median overall HRQOL was 84.8/100 (n = 207; 41% boys, 59% girls; self-reported IQR 73.9–92.4 and parent-reported IQR 71.4–92.4). Patients aged 13–17 years reported significantly worse physical functioning than those aged 8–12 years (median 84.4, IQR 71.1–93.8 versus median 90.6, IQR 81.3–96.9; p = 0.02). Parents reported a significantly lower overall HRQOL than their children (median 80.4, IQR 70.7–90.8 versus median 85.9, IQR 76.1–92.4; p = 0.001). HRQOL was impaired in 25% of patients. Impairment occurred significantly more often in lower extremity CVMs (38%, p = 0.01) and multifocal CVMs (47%, p = 0.01) compared to CVMs in the head/neck region (13%). Other associated factors included invasive management (31% versus 14%; p = 0.01), age at first treatment ≤ 5 years (48% versus 25%; p = 0.02) and ongoing treatment (38% versus 18%; p = 0.004). After correction for other factors, significance remained for lower extremity CVMs and ongoing invasive treatment.Conclusions: Overall median HRQOL was reasonable and not significantly different from the norm sample. Parental ratings were significantly lower than their children’s ratings. A quarter of the patients had an impaired HRQOL, which seemed to worsen with age. Independently associated factors included a lower extremity CVM and invasive management.What is Known:• Congenital vascular malformations could affect health-related quality of life (HRQOL).• Studies on pediatric patients are limited and either very small or in combination with adult patient series.What is New:• This study raises awareness of an impaired HRQOL in 25% of pediatric patients with congenital vascular malformations.• Associated factors included a lower extremity CVM and invasive management.

Total and individual PBC-40 scores are reliable for the assessment of health-related quality of life in Greek patients with primary biliary cholangitis.

Primary biliary cholangitis (PBC) has been long associated with impairment of various aspects of health-related quality of life (HRQoL) with substantial differences among populations. This study evaluated for the first-time the HRQoL in Greek PBC patients in conjunction with clinical and laboratory parameters of patients. We analyzed prospectively collected data regarding the HRQoL by using the PBC-40 and SF-36 questionnaires in 374 Greek PBC patients and 131 age- and sex-matched non-PBC controls. The PBC-40 questionnaire is a reliable tool for HRQoL assessment in Greek PBC patients (Cronbach's α > 0.7 for all domains). Implementation of PBC-40 and SF-36 demonstrated significant impairment of HRQoL in Greek PBC patients compared to controls (P < 0.001 for all comparisons). Emotional dysfunction, social impairment, and fatigue (100%, 80.5% and 78%, respectively) were amongst those with the highest, while cognitive dysfunction (32%) with the least impact on quality of life. Fatigue was associated with female sex (P = 0.02), longer disease duration (P = 0.01), presence of cirrhosis (P = 0.02) and positivity for PBC-specific ANA (P < 0.05), while social dysfunction with increased age (P < 0.001), longer disease duration (P < 0.001) and presence of cirrhosis (P = 0.004). Living in urban areas was linked to impaired social function (P = 0.04), cognition (P = 0.02), fatigue (P = 0.04) and increased total PBC-40 score (P = 0.01). Implementation of PBC-40 and SF-36 revealed impaired HRQoL in Greek PBC patients with fatigue, social and emotional dysfunction exerting the highest impact. However, total, and individual PBC-40 scores were lower than that reported in studies from Northern/Central Europe and Canada. Deranged HRQoL was associated with severity of liver disease and presence of PBC-specific ANA.

Severity of hypothyroidism is inversely associated with impaired quality of life in patients referred to an endocrine clinic

PurposeWe investigated the association between health-related quality of life (HRQL) and the severity of hypothyroidism at diagnosis in patients referred to a secondary hospital clinic.MethodsSixty-seven adult patients referred from primary care were enrolled. All patients had newly diagnosed hypothyroidism due to autoimmune thyroiditis and were treated with levothyroxine (LT4). The dose was adjusted according to thyroid function tests aiming at a normal plasma thyrotropin. Patients were stratified according to the severity of hypothyroidism in two different ways: the conventional approach (subclinical or overt hypothyroidism) and a novel approach according to the change (decrease or increase) in plasma level of free triiodothyronine index (FT3I) following LT4 treatment. The ThyPRO-39 questionnaire was used for measurement of HRQL at referral to the Endocrine Outpatient Clinic (higher score corresponds to worse HRQL).ResultsFree thyroxine index (FT4I) at diagnosis correlated positively with the scores on the Hypothyroid Symptoms and Tiredness scales (p = 0.018 for both). In accordance, patients with subclinical hypothyroidism (n = 36) scored higher on Hypothyroid Symptoms (p = 0.029) than patients with overt hypothyroidism (n = 31). The difference in HRQL was more pronounced if patients were stratified according to the dynamics in FT3I following LT4 treatment. Thus, patients who showed a decrease in FT3I following treatment (n = 24) scored significantly worse for Anxiety (p = 0.032) and Emotional Susceptibility (p = 0.035) than patients with an increase in FT3I (n = 43).ConclusionPatients referred to an endocrine clinic with mild hypothyroidism had an impaired HRQL, compared to patients with more severe hypothyroidism. The most likely explanation of this finding is a lower threshold for seeking medical consultation and secondary care referral if HRQL is deteriorated. The dynamics in plasma FT3I following treatment may be more sensitive for such a discrimination in HRQL than a stratification according to the thyroid function tests at diagnosis.

Clinical, Economic, and Humanistic Outcomes Associated with Obesity Among People with Bipolar I Disorder in the United States: Analysis of National Health and Wellness Survey Data.

People living with bipolar I disorder (BD-I) have an increased risk for obesity compared with the general population that may be related to genetic, lifestyle, and treatment factors. Few studies have examined possible effects of obesity on those living with BD-I. This study examined relationships between obesity and clinical, humanistic, and economic outcomes among adults with BD-I. This retrospective, cross-sectional study analyzed survey responses from a nationally representative sample of US adults participating in the 2016 or 2020 National Health and Wellness Survey. Respondents (18-64 years) with a self-reported physician diagnosis of BD-I were included and categorized by body mass index: underweight/normal weight (<25 kg/m2), overweight (25 to <30 kg/m2), or obese (≥30 kg/m2). Adjusted analyses assessed comorbidities, health-related quality of life (HRQoL), work productivity, health care resource utilization (HCRU), and economic outcomes. In total, responses from 1,853 participants were analyzed; most were female (65%) and white (62%). Respondents with obesity had the highest prevalence of medical comorbidities, including high blood pressure (52%), sleep apnea (37%), hypercholesterolemia (34%), and type 2 diabetes (12%). Obesity was generally associated with the lowest scores of physical health and HRQoL. Activity impairment scores were highest among respondents with obesity, as were numbers of hospitalizations and emergency department visits in the previous 6 months. Respondents with obesity incurred higher annual indirect and direct medical costs ($28,178 and $37,771, respectively) when compared with the underweight/normal weight ($23,823 and $32,227, respectively) and overweight ($24,312 and $35,231, respectively) groups. In this nationally representative sample, obesity was associated with several outcomes that may negatively affect people living with BD-I, including medical comorbidities, higher HCRU, HRQoL impairments, and greater indirect and direct medical costs. These findings highlight the importance of considering the presence of or risk for obesity and associated medical comorbidities when treating BD-I.

Health-related Quality of Life among Type 2 Diabetes Patients in Southern Province of Saudi Arabia using WHOQOL-BREF: A Cross-section Study.

Quality of life has become a more important health outcome with advancements in medical therapies and disease management, leading to better lives for people in general, particularly those living with chronic diseases. Diabetes has a direct impact on the physical, psychological, and social aspects of personal health. This study aimed to determine healthrelated quality of life (HRQOL) and its predictors in patients with type 2 diabetes. A cross-sectional study was carried out on 420 patients with type 2 diabetes who presented to primary healthcare centers in Samtah Town, Saudi Arabia, from March 2017 to February 2018. The HRQOL of the study participants was determined using the World Health Organization Quality of Life-BREF. Multi-level linear regression was employed to ascertain the factors associated with HRQOL among patients with type 2 diabetes. Female sex was significantly associated with higher HbA1c, anxiety, depression, and stress scores and a lower HRQL in the physical, psychological, and environmental health subscales than males (P<0.001). All subscales of HRQOL were significantly lower in the > 50 years age group. When compared to those with low levels of education (illiterate, primary, or elementary school), patients with secondary and bachelor's degrees had significantly higher HRQOL in all subscales (P<0.001). In addition, there were significant differences in glycemic control and HRQL with a longer duration of diabetes, the presence of one or more diabetes complications, and the presence of comorbid hypertension (P<0.001). However, no significant differences in the Depression Anxiety and Stress Scale (DASS) index were observed with a longer duration of diabetes and the presence of comorbid hypertension. Patients with diabetes on combined therapy and healthy diet and exercise showed significantly higher HRQOL on physical functioning (P<0.001). Type 2 diabetes was significantly associated with impaired health-related quality of life and mental health among study participants. Females appeared to have worse quality of life and mental health than males. Age, duration of diabetes, comorbid hypertension, diabetes complications, and level of education were significantly associated with lower HRQOL and mental health scores. Healthy diet and exercise, when combined with hypoglycemic and insulin therapy, were found to improve HRQOL and mental health among patients with diabetes. Scales based on a broad definition of health, such as the WHOQOL-BREF, are appropriate for use in primary care settings and can enhance patient management and care.

Health-related quality of life and its determinants in patients with different dermatological disorders at the University of Gondar Comprehensive Specialized Hospital

ObjectivesEvidence shows that majority of dermatological disorders affect the health-related quality of life (HRQoL) of patients. However, the extent of its negative impact and predictors has not been studied in Ethiopia. Thus, this study looked at assessing the HRQoL and determinants in patients with dermatological disorders (DDs) attending the University of Gondar Comprehensive Specialized Hospital (UoGCSH).ResultsPatients with dermatological disorders (n = 400) were included in the final analysis using a systematic random sampling technique. The mean age of the participants was 39.79 (± 17.17) years. The average (± SD) score of EQ-5D-5 L was 1.92 (± 0.74). Regarding domains, pain/discomfort accounted for a higher proportion 59 (22.3%) followed by anxiety/depression 61 (15.3%). Receiving topical preparations (β = -0.399, 95% CI: -0.6, − 0.19; < 0.001), systemic only medication (β = -0.378, 95% CI: -0.607, -0.149; p = 0.002), having slight, mild, and moderate skin diseases found to have an inverse association with impaired HRQoL, (β = -0.654, 95% CI; -1.01, -0.290); p < 0.001), (β = -0.748, 95% CI: -0.960, -0.538; p < 0.001), and (β = -0.465, 95% CI: -0.642, -0.283; p < 0.001), respectively. Furthermore, age (β = 0.011, 95% CI: 0.006, 0.016; p = 0.001), long duration with skin disease (β = 0.046, 95% CI: 0.015, 0.352; p = 0.013), and presence of comorbidity (β = 0.251, 95% CI: 0.096, 0.402; p = 0.002) were significant predictors of HRQoL among dermatological disease patients.ConclusionPatients with dermatological disease were found to have a compromised HRQoL. Pain /discomfort problems accounted for a higher proportion compared with other domains. Socio-demographic, clinical and medication-related variables were significantly associated with HRQoL.

454. GASTROINTESTINAL QUALITY OF LIFE, BODY COMPOSITION AND INFLUENCING FACTORS, IN ESOPHAGEAL CANCER SURVIVORS FOLLOWING CURATIVE ESOPHAGECTOMY

Abstract Background Recent improvements in treatment modalities for locally advanced esophageal cancer have resulted in markedly improved survival outcomes. This has resulted in an increasing population of esophageal cancer survivors. Surgery is the mainstay of treatment, which has a high risk of post-operative morbidity. This study focused on characterising health-related quality of life with a specific interest in the gastrointestinal quality of life of esophageal cancer survivors following curative esophagectomy. Methods This was a cross-sectional cohort study of patients who underwent oesophageal cancer surgery between 2010 and 2015. A multicomponent questionnaire was distributed to disease-free patients at least one year post completion of treatment. Body composition was assessed using surveillance computed tomography scans. Linear and logistic regression analyses were utilised to determine the impact of treatment and pathologic variables on survivorship issues. Results Gastrointestinal symptoms were common, with persistent eating symptoms independently predictive of overall poor HR-QL on multivariable analysis (P = 0.026, odds ratio [OR] 1.05 [95% confidence interval [95% CI] 1.01–1.10]). Persistent eating symptoms were independently associated with impaired physical and role function (both P &amp;lt; 0.001). Cervical anastomosis was associated with increased risk of dumping syndrome (P = 0.013, OR 0.34 [95% CI 0.14–0.80]), while squamous histology was independently associated with increased Gastrointestinal Symptom Rating Scale (P = 0.027) and Sigstad dumping syndrome scores (P = 0.034). Conclusion Persistent gastrointestinal and nutritional issues are common after esophagectomy. These eating symptoms are associated with impaired health-related quality of life. Further research is warranted to investigate how patient pathways can be enhanced to minimise the long-term impact of curative treatment for patients with esophageal cancer.

Chronic hand eczema: A prevalent disease in the general population associated with reduced quality of life and poor overall health measures.

The impact of hand eczema (HE) on Health-Related Quality of Life (HRQoL) has only been sparsely studied in a general population setting, and never by use of the disease specific Quality Of Life in Hand eczema Questionnaire (QOLHEQ). To examine the HRQoL of unselected individuals with HE using the QOLHEQ. Further, to provide prevalence estimates of severe and chronic HE (CHE), and to contrast overall health related outcomes between individuals with and without HE. In this nationwide, cross-sectional study a questionnaire covering questions on HE related outcomes, and overall health was sent to a random sample of 100 000 Danish adults via a secure digital mailbox, linked to their unique civil registration numbers. Data on demographic characteristics were retrieved from the civil registration system. Individuals reporting HE, further answered the QOLHEQ and other disease specific questions. The response rate was 42.7% (n = 42 691). Total estimates of lifetime, 1-year and point prevalences of HE were 24.4%, 13.3% and 5.8%. Of individuals reporting a 1-year prevalence, 35.1% reported moderate-severe disease and 82.6% CHE. Individuals with HE were more likely to report less good or poor overall health, and sick leave (any reason), compared to those without. In the 2176 (92.5%) with current HE who completed the QOLHEQ, median QOLHEQ scores corresponded to a moderate impairment of the symptoms and treatment and prevention domains and a slight impairment overall and for the emotions and functioning domains. Factors that were strongly associated with moderate to severe HRQoL impairment included severe, chronic and occupational HE as well as female sex. HE is highly prevalent, bears a considerable burden on society and significantly affects the lives of impacted individuals. Our findings indicate a necessity for targeted prevention aimed at high-risk groups, and support and treatment for those most affected.

Impaired health-related quality of life in the HCV cure era: who is concerned? (ANRS CO22 HEPATHER French cohort).

Hepatitis C virus (HCV) cure after treatment with direct-acting antivirals (DAAs) can improve health-related quality of life (HRQoL). However, specific groups with chronic HCV may still exhibit worse post-cure HRQoL because of persisting severe liver fibrosis or social vulnerability factors (e.g. unhealthy alcohol use, living in poverty). We assessed the effect of such factors on longitudinal measures of HRQoL in chronic HCV patients. ANRS CO22 HEPATHER is a prospective cohort of chronic HCV patients receiving DAAs, which included notably patients with social vulnerability factors, a population usually under-represented in clinical trials. Multivariable mixed-effects linear regression models helped identify factors associated with longitudinal measures of HRQoL (PROQOL-HCV scores). At enrolment, 52.4% of the 2740 participants were men, median age was 56years [interquartile range 50-64], and 21.5% had severe liver fibrosis (FIB-4 > 3.25). Twenty-eight per cent reported current or past unhealthy alcohol use [> 2(3) alcohol units per day for women (men)], and 28.1% were living in poverty (standard of living under 1015€/month per household consumption unit). At first PROQOL-HCV completion, 54.0% of patients were HCV-cured. After multivariable adjustment, people with current or past unhealthy alcohol use, individuals living in poverty, those with severe liver fibrosis, and women had worse HRQoL in the dimensions explored. Conversely, HCV cure was associated with better HRQoL. Specific socially vulnerable groups of patients with chronic HCV infection still experience impaired HRQoL, independently of HCV cure. Patient-centred interventions, including social support and referral for comorbidities, should be prioritized for them. Trial registration with ClinicalTrials.gov NCT01953458.

Health-related quality of life of children with first onset steroid-sensitive nephrotic syndrome

This study assessed HRQoL and emotional and behavioral difficulties (EBD) and associated variables in children with first onset SSNS. While relapsing steroid-sensitive nephrotic syndrome (SSNS) in children is associated with lower health-related quality of life (HRQoL), little is known about first onset. Four weeks after onset, children (2–16 years) and/or their parents who participated in a randomized placebo-controlled trial, completed the Pediatric Quality of Life Inventory 4.0 (PedsQL) and Strengths and Difficulties Questionnaire (SDQ) to measure HRQoL and EBD, respectively. Total and subscale scores and the proportion of children with impaired HRQoL (> 1 SD below the mean of the reference group) or SDQ clinical scores (< 10th and > 90th percentile) were compared to the Dutch general population (reference group). Regression analyses were used to identify associated variables. Compared to the reference group, children 8–18 years reported significantly lower total HRQoL, and physical and emotional functioning. A large proportion (> 45%) of these children had impaired HRQoL. There were no differences in HRQoL between children 2–7 years and the reference group, except for higher scores on social functioning (5–7 years). Similar proportions of SSNS and reference children scored within the clinical range of SDQ subscales. Age, sex, and steroid side-effects were negatively associated with HRQol and/or EBD. Conclusion: This study showed that HRQoL and EBD are affected in children of different ages with first onset SSNS. This calls for more awareness from healthcare providers and routinely monitoring of HRQoL and EBD in daily clinical care to prevent worsening of symptoms. Clinical trial registry: Netherlands Trial Register (https://trialsearch.who.int/; NTR7013), date of registration: 02 June 2018.What is Known:• Health-related quality of life (HRQoL) is lower and emotional and behavioral difficulties (EBD) is more affected in children with frequently-relapsing and steroid-dependent nephrotic syndrome.What is New:• HRQoL and EBD are affected in children with first onset steroid-sensitive nephrotic syndrome compared to a reference group of the Dutch general population.• To what extent HRQoL and EBD are affected depends on the age of the patient.

Validation of the German language version of the Chronic Ear Survey and its psychometric comparison with an established German language measurement instrument. German version

With the Chronic Ear Survey (CES), avalidated measurement instrument for the assessment of disease-specific health-related quality of life (HRQoL) has been available internationally since 2000. The aim of this study was to provide avalidated German version of this international instrument and to compare it with the German Chronic Otitis Media Outcome Test15 (COMOT-15). The CES was translated into German via aforward-backward translation process. For validation, 79patients with COM undergoing middle ear surgery were prospectively included. HRQoL was determined preoperatively and 6months postoperatively using the CES and the COMOT-15. Pure tone audiometry was also performed at both measurement time points. In the control examination, an additional retrospective assessment of the preoperative situation was additionally performed using the CES and the COMOT-15 to assess the response shift. The determined psychometric characteristics were internal consistency, test-retest reliability, discrimination validity, agreement validity, responsiveness, and response shift for both measurement instruments. Convergent validity of both measurement instruments was assessed using linear regression. On the basis of the CES, patients with COM could be reliably distinguished from patients with healthy ears. The CES showed satisfactory reliability with high internal consistency (Cronbachα 0.65-0.85) and high retest reliability (r > 0.8). The global assessment of HRQoL impairment correlated very well with the scores of the CES (r = 0.51). In addition, it showed ahigh sensitivity to change (standardized response mean -0.86). Compared to the COMOT-15, it showed alower response shift (effect size -0.17 vs. 0.44). Both measurement instruments correlated only slightly with air conduction hearing threshold (r = 0.29 and r = 0.24, respectively). The concordant validity of both measurement instruments was high (r = 0.68). The German version of the CES shows satisfactory psychometric characteristics, so that its use can be recommended. The CES focuses on the influence of ear symptoms on HRQoL, whereas the COMOT-15 also includes functional and psychological aspects. Due to only minor response shift effects, the CES is particularly suitable for studies with multiple repeat measurements.

Health-related quality of life is impaired in bleeding disorders of unknown cause: results from the Vienna Bleeding Biobank

BackgroundBleeding disorder of unknown cause (BDUC) is a diagnosis of exclusion after extensive investigation of coagulation and platelet function and is commonly seen among patients with mild-to-moderate bleeding disorders. Despite increasing awareness among treating physicians, little is known about the health-related quality of life (HrQoL) in BDUC. ObjectivesTo investigate HrQoL in patients with BDUC in comparison to the general population and patients diagnosed with other established bleeding disorders. MethodsPatients with mild-to-moderate bleeding disorders from the Vienna Bleeding Biobank, a prospective cohort study, were contacted via mail and phone to complete the 36-Item Health Survey Questionnaire form. ResultsIn total, 333/657 (50.7%) patients completed the 36-Item Health Survey Questionnaire. Patients with BDUC (n = 207, 62%) had significantly impaired HrQoL both in physical (47.8 vs 49.2) and mental health parameters (42.9 vs 51.0) compared to the general population (n = 2914, 56% females), which remained after adjustment for sex and age in multivariable linear regression. The impairment in HrQoL, compared to patients with von Willebrand disease, platelet function defects, or mild clotting factor deficiencies, did not prevail after adjustment for age and sex. In patients with BDUC, age and the presence of at least 1 comorbidity were associated with impaired physical health but not sex or bleeding severity. Of all analyzed bleeding symptoms, only joint bleeding was associated with impaired physical health and gastrointestinal bleeding with mental health in BDUC. ConclusionThe impairments in HrQoL in patients with BDUC emphasize the burden of BDUC on mental and physical well-being, encouraging early recognition and better counseling of patients with BDUC.

TripleAiM1: a nationwide registry of de novo metastatic hormone-sensitive prostate cancer with prospective quality-of-life assessment

IntroductionThe treatment landscape for de novo metastatic hormone sensitive prostate cancer (mHSPC) is rapidly evolving. With an abundance of available treatment strategies, selecting the optimal strategy for an individual patient...

Experiences of Heart Failure and the Treatment Journey: A Mixed-Methods Study Among Patients with Heart Failure in Sweden.

Qualitative studies that highlight the patient perspective of heart failure (HF) and its impact on the lives of patients are limited. Our study objective was to describe the patient's perspective on HF, including the diagnosis, treatment journey and healthcare interactions, and how HF impacts patients' lives and specifically their health-related quality of life (HRQoL) and work capacity. This cross-sectional, non-interventional, mixed-methods patient experience study comprised: (i) a quantitative online survey with study-specific questions and assessments of HRQoL and work impairment among 101 patients with HF in Sweden and (ii) 35 qualitative interviews to gain in-depth understanding of the patients' experiences. Patients were found to experience a highly symptomatic and detrimental impact of HF on their HRQoL and work capacity. Fatigue was the most frequently reported symptom, and it was detrimental to all areas of patients' lives limiting them mentally, socially, and physically. Two-thirds of patients were not aware of the type of HF they had, one-third did not check their body weight regularly, and around half did not increase their physical exercise as recommended by both guidelines and healthcare practitioners. Patients preferred specialist to primary care, desired greater access to healthcare, and continuity in whom they interact with in primary care. Patients with HF experience a highly symptomatic burden that affects them physically, mentally, and socially. Our study highlights a major gap in patients' knowledge about HF and HF-related healthcare. These results demonstrate a challenge for the Swedish healthcare system particularly as regards providing patients with continuity, accessibility, and proximity to primary care.