Lower Health-related Quality Of Life Scores Research Articles

Exploring health-related quality of life and frailty in older adults based on the Korean Frailty and Aging Cohort Study.

The study aimed to analyze the association between frailty and health-related quality of life (HRQOL) based on the Korean Frailty and Aging Cohort Study. In this cross-sectional study, 2905 adults aged 70 to 84years were enrolled. Frailty was determined according to the Fried frailty index. HRQOL was measured using the 5-level EuroQol questionnaire (EQ-5D-5L) and the 12-item Short-Form Health Survey version 2 (SF-12). Hierarchical linear regressions were conducted to examine the relationship between frailty and HRQOL and a logistic regression analysis was performed to estimate odds ratios of frailty status in the scores of the lowest quartiles in each scale. Of the total respondents, 7.8% were frail, 47.0% were pre-frail, and 45.2% were robust. Frail respondents had significantly lower HRQOL scores than robust respondents, especially for EQ-5D-5L utility weights (0.74 vs 0.93). Frailty was strongly associated with decreased HRQOL in both physical and mental component summary of SF-12 (p < 0.001). Both pre-frail and frail states were related to greater odds of scoring in the bottom 25% of HRQOL scales compared to the non-frail state (p < 0.0001). Frailty was associated with declined HRQOL in Korean older adults. This result recommends raising awareness about identifying and preventing frailty for better quality of life in the Korean elderly population.

The musculoskeletal impairment negatively impacts the quality of life of children and adolescents with psoriasis

BackgroundThe severity of nail disease, the presence of arthralgia and fatigue are predictors of development of psoriatic arthritis (PsA) in patients with psoriasis (Pso). In children, little is known about the musculoskeletal (MSK) impairment in patients with Pso and its effect on health-related quality of life (HRQoL).ObjectivesTo determine the frequencies of pain and MSK inflammation (i.e., arthritis, enthesitis, and sacroiliitis) among children and adolescents with Pso and its relationship to HRQoL and fatigue.MethodsPediatric patients with Pso underwent a rheumatologic physical examination to evaluate synovitis, enthesalgia, sacroiliac joint (SIJ) pain and tender points of fibromyalgia. The core set of domains recommended by the GRAPPA - OMERACT to be measured in PsA studies was assessed. Ultrasound (US) was performed in clinical cases of enthesitis, and magnetic resonance imaging (MRI) was performed in cases of SIJ pain.ResultsForty-three participants (10 ± 2.9 years old) were evaluated. Pain on palpation of the entheses was observed in 10 (23.2%) patients and pain on SIJ palpation was observed in 3 (7%). No patient presented with synovitis; one presented with enthesitis on US, but MRI did not confirm sacroiliitis in any case. Patients with MSK pain had greater skin disease severity (PASI 5.4 vs. 2, p < 0.01), worse fatigue, and lower HRQoL scores on all instruments used. The estimated risk of HRQoL impairment was eight times higher in the presence of MSK pain, which was an independent predictive factor. With a NAPSI greater than 30, the probability of pain was greater than 80%.ConclusionMSK pain is frequent among children with Pso, related to the severity of skin and nail disease, and negatively affects HRQoL. The typically used complementary exams might not detect the inflammatory process caused by Pso.

Examining Risk Factors of Health-Related Quality of Life Impairments Among Adolescents with Inflammatory Bowel Disease

Inflammatory Bowel Disease (IBD) is a chronic, costly, and burdensome disease that is typically diagnosed during adolescence. Despite the use of effective treatments, rates of relapse and intestinal inflammation remain high and put patients at risk for long term physical and psychosocial health complications. Given the costs associated with IBD, it is critical to examine potential risk factors of poor health-related quality of life (HRQoL) among patients for the enhancement and further development of interventions. As such, the aim of the current study was to examine how sociodemographic and disease characteristics, psychosocial problems, and adherence behaviors impact HRQoL among a sample of youth with IBD. 107 adolescents with IBD and their caregiver completed self- and parent-report measures as part of a psychosocial screening service. Medical records were reviewed to obtain information regarding diagnosis, insurance, medication use, illness severity, and disease activity. Results revealed lower HRQoL scores among adolescents with more psychosocial problems (Est. = -3.08; p < .001), greater disease severity (Est. = -.40; p = .001), and those who identified as Black (Est. = -.38; p < .05). Greater disease severity (Est. = .13 p = .004), use of nonpublic insurance (Est. = .32 p = .004), and fewer psychosocial problems (Est. = -.13 p = .04) were associated with greater adherence behaviors. These findings suggest that implementing individually tailored, evidence-based psychological interventions focused on coping with psychosocial problems and symptoms may be important in enhancing adherence behaviors and HRQoL among adolescents with IBD.

Health related quality of life varies by weight loss method in patients with history of nonalcoholic fatty liver disease

AbstractWeight loss through lifestyle modification is currently the standard of care in the management of patients with nonalcoholic fatty liver disease (NAFLD); however, benefits of specific strategies for achieving weight loss in these patients are poorly understood. We sought to determine whether patient satisfaction and health‐related quality of life (HRQoL) vary by specific weight loss method in patients with NAFLD. Patients diagnosed with NAFLD in the previous 6 months to 3 years were identified through chart review at our urban, tertiary medical center. Participants were administered an online questionnaire assessing liver disease and weight loss history, HRQoL, and satisfaction with their weight loss method. Patients who incorporated caloric restriction into their weight loss plans had lower total HRQoL scores (5.0 vs 5.4, P = .05) as compared to patients who did not include this method. Multivariate analysis showed that caloric restriction was independently associated with lower HRQoL scores (β = −2.25, P = .03). Weight loss was associated with both increased total HRQoL scores (5.3 vs 4.9, P = .05) and increased patient satisfaction scores (3.3 vs 2.1, P = 4.00 × 10−10). Our data demonstrate that incorporation of caloric restriction into a weight loss plan is associated with lower HRQoL. Choosing a weight loss strategy associated with improved quality of life could be an important factor in improving adherence and patient outcomes.

Effectiveness of a family intervention on health-related quality of life\u2013a healthy generation, a controlled pilot trial

BackgroundPhysical activity is associated with better health, but knowledge about health promoting interventions, including physical activity for families in disadvantaged areas and the impact on health-related quality of life (HRQOL) is sparse. The aim of this study was to assess HRQOL in children and their parents after participation in the programme “A Healthy Generation”.MethodsThe programme is delivered in socioeconomically disadvantaged areas in Sweden and offers physical activity and a healthy meal or fruit twice a week from August to May to families with children in grade 2. Children (n = 67), aged 8–9 years, and their parents (n = 90) participated in this controlled study conducted in four schools, two control and two intervention schools. HRQOL of children and adults was assessed at baseline and follow-up after the intervention with the Pediatric Quality of Life Inventory (PedsQL) 4.0 and the Gothenburg Quality of Life scale, respectively. Analyses of covariance (ANCOVAs), linear regression and Pearson’s correlation were conducted.ResultsThere were no significant differences between intervention and control in HRQOL among children or adults after the intervention. However, in a subgroup of children (n = 20) and adults (n = 29) with initial low HRQOL scores at baseline, there was a significant difference between the intervention group and control group after the intervention (children (total score): p = 0.02; adults (social domain) p = 0.04). Furthermore, within the intervention group, there was a significant relationship between level of participation in “A Healthy Generation” and the physical domain of HRQOL among girls (r = 0.44, p = 0.01), but not boys (r = − 0.07, p = 0.58).ConclusionParticipation in the programme “A Healthy Generation” did not show a significant intervention effect on HRQOL in general. However, the findings suggest that HRQOL may be increased for children and adults with low HRQOL in disadvantaged areas. This knowledge can contribute to the development of health promoting interventions in such areas, and to more equitable health.Trial registrationISRCTN ISRCTN11660938. Retrospectively registered 23 September 2019.

Visual function and quality of life in children and adolescents with anophthalmia and microphthalmia treated with ocular prosthesis.

To evaluate health-related quality of life (HR-QoL), vision-related (VR-)QoL and perceptual visual dysfunction (PVD) among individuals with anophthalmia (A) and microphthalmia (M) treated with ocular prosthesis. The study comprised 15 individuals (mean age 6.6years; range 1.7-14.1) with unilateral A or M. Three validated instruments measuring HR-QoL and VR-QoL were used: The Pediatric QoL Inventory (PedsQL), consisting of physical and psychosocial self-report and parent-proxy report (2-18years); Children's Visual Function Questionnaire (CVFQ); and Effects of Youngsters' Eyesight on Quality of Life (EYE-Q). Perceptual visual dysfunctions (PVDs) were assessed by history taking according to a specific protocol. A/M children and their parents showed low HR-QoL scores (PedsQL total score: 66.3; 69.6) compared with controls (83.0; 87.61) (p=0.0035 and <0.0001, respectively, unpaired t-test). No differences were found between A/M children and parents, but parents tended to underestimate their children's emotional state. A/M children with subnormal visual acuity (VA) for age scored lower in physical health compared with A/M children with normal VA (p=0.03, Mann-Whitney U-test). No significant VR-QoL differences between A/M children and references or between A/M children with subnormal or normal VA for age were found. More A/M children than controls exhibited PVDs in ≥1 area (7/11 versus 4/118; p<0.0001, Fisher's exact test). A/M individuals show poor HR-QoL and increased PVDs. No difference in QoL was found between children and parents, though the children tended to score lower in emotional well-being. A/M children with subnormal VA showed lower physical health score. These problems indicate the necessity of a thorough multidisciplinary assessment and follow-up of children with A/M.

Long-term health-related quality-of-life outcomes in a racially diverse cohort of prostate cancer patients receiving retropubic versus robotic prostatectomy.

37 Background: This study compared 5-year health-related quality of life (HRQoL) outcomes among prostate cancer (PCa) patients who underwent a robotic-assisted radical prostatectomy (RARP) versus a radical retropubic prostatectomy (RRP), with a focus on race-specific outcomes for Caucasian American (CA) compared to African American (AA) men. RARPs have almost replaced RRPs in recent years, with few long-term studies focused on HRQoL and race. Methods: A prospective cohort study of HRQoL was conducted on patients diagnosed with PCa from 2007 to 2017 and enrolled in the Center for Prostate Disease Research (CPDR) Multicenter National Database. HRQoL was assessed with the EPIC instrument. Temporal changes in urinary and sexual-related quality of life domain scores were compared across surgery type (RARP versus RRP) at pre-treatment (“baseline”), 1-, 2-, 3-, 4-, and 5 years post-baseline. Longitudinal HRQoL patterns were modeled using generalized estimating equations (GEE), adjusting for baseline HRQoL and key clinical characteristics. Results: Of 497 PCa patients who met study inclusion criteria, 68% had RARP and 32% had RRP, with 22% AA men and 88% CA men. Baseline HRQoL domains were comparable across race and surgery type. In adjusted GEE analysis, no differences were noted between AA and CA patients. However, treatment-related differences were observed over time in urinary function (UF) and incontinence (UI) (p=0.02 and p=0.03, respectively), with lower HRQoL scores in RARP vs. RRP patients. Upon dual stratification by surgery type and race, the differences for UF and UI persisted (p=0.01 and p=0.03, respectively) with poorest outcomes observed, and similar trajectories of decline, for AA patients who received RARP. Conclusions: In this 10+ year prospective cohort study, AA patients receiving RARP had the poorest UF and UI outcomes which continued to decline for 5 years post treatment. In light of these findings, AA men considering RARP might benefit from discussions with their providers to set expectations regarding long-term urinary outcomes; though these decrements in HRQoL may be overshadowed by the minimally invasive nature of RARP.

Health-related quality of life and its determinants among ambulatory patients with epilepsy at Ambo General Hospital, Ethiopia: Using WHOQOL-BREF

BackgroundHealth‐related quality of life (HRQOL) is used as a measure of treatment outcomes, in addition to seizure control. Hence, the study was aimed to assess HRQOL and its determinants among adult patients with epilepsy (PWE).MethodA hospital-based cross-sectional study was conducted from April 20 to June 27/2019, through patient interviews and patient’s chart review (medication and clinical information). Data were analyzed using SPSS version 20. The psychometric property was done using Cronbach’s alpha test value of >0.7 as accepted internal consistency and Kaiser-Meyer-Olkin (KMO) measure of sample size adequacy value of ≥0.5 as acceptable construct validity, for Afaan Oromo version questionnaire. Multivariate linear logistic regression analysis was done to find predictors for the HRQOL score.ResultsOf 121 PWE included in the study, 24.4% had overall poor HRQOL with the overall mean ±SD score of 56.42±10.96. The predictors for low overall HRQOL score were: presence of co-morbidity (B = -5.620, SE = 1.531, p<0.0001, 95% C.I = -8.656 to -2.584), uncontrolled seizure for at least 2 years (B = -4.239, SE = 1.296, p = 0.001, 95% C.I = -6.809 to -1.670), divorced (B = -8.423, SE = 2.241, p<0.0001, 95%C.I = -12.867 to -3.978) relative to married, and no education (B = -8.715, SE = -8.15, SE = 2.604, p = 0.001, 95%C.I = -9.648 to -1.316) relative to who had level of education above tertiary. In addition, uncontrolled seizure (irrespective of time since seizure-free) (B = -10.083, SE = 2.104, p<0.0001, 95%C.I = -14.256 to -5.910), being widowed (B = -9.300, SE = 3.594, p = 0.011, 95%C.I = -16.429–2.170) relative to married and being illiterate/no education (B = -13.004, SE = 3.910, p = 0.001, 95%C.I = -20.760 to -5.248) relative to educational level of tertiary and above were found to be the strongest negative predictors of HRQOL of physical health. Moreover, uncontrolled seizure (irrespective of time since seizure-free) (B = -12.668, SE = 2.019, p<0.0001, 95%C.I = -16.671 to -8.664) and being divorced (B = -10.153, SE = 3.228, p = 0.002, 95%C.I = -16.556 to -3.751) compared to married were strong predictors for low HRQOL score of psychological health. Absence of Poly-pharmacy (B = 9.050, SE = 3.027, P = 0.003, 95%C.I = 3.047 to 15.054), being single (B = -9.551, SE = 2.095, p<0.0001, 95%C.I = -14.419 to -4.683), and divorced (B = -11.022, SE = 3.351, P = 0.001, 95%C.I = -17.668 to -4.376) relative to married were found to be strong predictors for HRQOL score of social health. Moreover, low HRQOL score of environmental health was predicted by rural residence (B = -5.795, SE = 2.101, p = 0.007, 95%C.I = -9.962 to -1.628), co-morbidity (B+ -4.230, SE = 2.125, p = 0.049, 95%C.I = -8.444 to -0.015) & uncontrolled seizure irrespective of time since seizure-free (B = -6.907, SE = 1.945, p = 0.001, 95%C.I = -10.765 to -3.049) and uncontrolled seizure of at least 2 years (B = -4.520, SE = 1.798, p = 0.014, 95%C.I = -8.088 to -0.953).ConclusionsThe majority of the study participants had a good overall HRQOL. In general, a low level of HRQOL score was significantly associated with the marital status of single/widowed/divorced, low level of education, low level of monthly income, co-morbidity, uncontrolled seizure, and poly-pharmacy; irrespective of HRQOL domains. Therefore, it is required to improve HRQOL, by avoiding modifiable factors for PWE to achieve the optimum HRQOL.

Factors influencing the self-reported sense of deviation in adults with successful surgical outcomes for strabismus

BackgroundTo determine whether a sense of deviation remains in adults with successful motor alignment who fulfil diplopia criteria after surgery and to examine the factors associated with this judgement.MethodsThis was a retrospective study. Adult patients defined as having a successful outcome based on more than 1 year of post-operative follow-up visits were included in the study. The sense of deviation was determined at the last visit. Pre- and post-operative deviation and characteristics including age, gender, education level, occupation, diagnosis, size of deviation, extraocular movement (EOM), binocular function, and health-related quality of life (HRQOL) were recorded.ResultsIn total, 22 (24%) of the 91 adults with successful surgical outcomes reported a sense of deviation. No significant differences were noted between subjects with and without a sense of deviation regarding patient demographics, pre- and post-operative deviation, changes in deviation, sensory fusion or EOM. Subjects with a sense of deviation had an increased prevalence of and larger post-operative vertical deviation, poorer stereo function, and lower HRQOL scores than those with no sense of deviation. The presence of post-operative vertical deviation was associated with a sense of deviation.ConclusionsApproximately one-fourth (24%) of adults defined as having successful surgical outcomes who still had a sense of deviation exhibited worse stereo function, higher vertical deviation size and lower HRQOL scores. The presence of 3 to 5 prism dioptres(pd) of vertical deviation would be the main factor associated with a sense of deviation post-operatively.

Role of psychosocial status in predicting health-related quality of life at 1-year follow-up among newly diagnosed people living with HIV.

BackgroundPsychosocial problems are common among people living with HIV (PLWH) and have been cross-sectionally associated with health-related quality of life (HRQoL). We evaluated the longitudinal relationship between psychosocial status and HRQoL among PLWH during the first year after diagnosis.MethodA consecutive sample of newly diagnosed PLWH was recruited from Changsha Center for Disease Control and Prevention in Hunan Province, China. Assessments were conducted at baseline and 1 year later. The measures used in this study included the Medical Outcomes Study HIV Survey (MOS-HIV), the 9-item Patient Health Questionnaire (PHQ-9), the HIV/AIDS Stress Scale (SS-HIV) and the Social Support Rating Scale (SSRS). The trajectories of depression from baseline to 1-year follow-up were categorized into four groups: never (PHQ-9 < 10 at two time points), new-onset (PHQ-9 < 10 at baseline & PHQ-9 ≥ 10 at follow-up), recovered (PHQ-9 ≥ 10 at baseline & PHQ-9 < 10 at follow-up) and persistent depression (PHQ-9 ≥ 10 at two time points). In addition, the trajectories of stress and social support were classified by calculating the proportions of participants whose stress and social support scores changed between baseline and 1-year follow-up by more than 0.5 effect size in either direction. Generalized linear models were used to examine the potential role of baseline and changes in psychosocial status in predicting the HRQoL at 1 year, after adjusting for socio-demographic and clinical characteristics.ResultsA total of 410 participants completed both the baseline and 1-year follow-up surveys. Higher stress levels at baseline predicted a lower HRQoL at 1 year, while baseline depression status and social support did not predict 1-year HRQoL scores. Compared to those who were never depressed at both baseline and follow-up, participants who experienced new-onset or persistent depression had lower HRQoL at 1 year. Additionally, the 1-year HRQoL score of participants who recovered from depression by follow-up was comparable to that of participants who were never depressed. Moreover, participants who experienced increases in stress levels by follow-up had lower HRQoL scores at 1 year than those with decreases in stress levels. Changes in social support did not predict 1-year HRQoL scores in this study.ConclusionsAssessing psychosocial status regularly and implementing effective interventions targeted at psychosocial problems may be particularly important for PLWH to improve their HRQoL. Among PLWH, special attention should be given to those with new-onset or persistent depression and those with high stress levels at the time of diagnosis and increased stress levels 1 year after the new HIV diagnosis.

Five-Month Follow-up Shows No Improvement in Dermatological Complications in Children With Type 1 Diabetes Using Continuous Glucose Monitoring Systems and Insulin Pumps.

A Danish study showed that 90% of the pediatric patients who participated had some time experienced dermatological complications due to treatment with continuous subcutaneous insulin infusion (CSII). This follow-up study describes dermatological complications due to CSII and/or continuous glucose monitoring (CGM) between the two study periods and includes health-related quality of life (HrQoL) measurements. A total of 138 patients (95%) out of 145 patients from the initial study answered an online questionnaire regarding dermatological complications related to CSII and/or CGM, five months later. A second questionnaire (DISABKIDS) regarding HrQoL was sent out to those 138 of which 111 patients completed it. The patients were aged from 2 to 20 years. Descriptive statistics, χ2 tests, and univariate and multivariate analyses were used to analyze the data. In total, 81% of the 138 patients continued to have dermatological complications at follow-up. Itching was the most frequently reported complication. Patients using Enlite reported more dermatological complications than those using Libre. In total, 79% of the patients who used barrier cream in the initial study still had dermatological complications five months later. Age, gender, Body Mass Index (BMI), or HbA1c levels showed no significant association with dermatological complications. Patients who perceived dermatological complications as a greater problem had lower HrQoL scores. Once dermatological complications start to appear, they become chronic, indicating that the treatments currently available are inadequate. Patients perceiving dermatological complications as a greater problem were associated with lower HrQoL. These findings highlight the need for additional preventive studies.

Factors Associated with Health-Related Quality of Life in Children with Intestinal Failure

To evaluate disease-specific and age-related factors contributing to health-related quality of life (HRQOL). in children with intestinal failure. A prospective study of HRQOL was performed in a regional intestinal rehabilitation program. Parent-proxy Pediatric Quality of Life Inventory surveys were administered annually to families of 91 children with intestinal failure over a 6-year period. Survey data was stratified by age and compared with pediatric HRQOL data in healthy and chronically ill populations. Linear mixed-effect models using multivariable regression were constructed to identify associations with HRQOL. A total of 180 surveys were completed by 91 children and their families. HRQOL scores were lowest for children ages 5-7years (P< .001) and 8-12years (P< .01), and these changes were primarily related to school dimension scores. In multivariable regression, age of 5years and older and developmental delay were independently associated with lower HRQOL scores. The trend toward lower HRQOL scores parallels reference data from healthy and chronically ill children, although patients with intestinal failure scored lower than both populations at school age. Children with intestinal failure experience lower parent-proxy HRQOL scores in the 5-7 and 8-12year age groups primarily related to school dimension scores. Multicenter data to validate these findings and identify interventions to improve QOL for children with intestinal failure are needed.

2203It is more than simple interventions needed to improve heart failure patients health related quality of life

Abstract Background In order to improve health-related quality of life (HR-QoL) of heart failure (HF) patients, different disease management programs have been developed at the discharged and follow-up phase. Aim To determine the effectiveness of a three-month telephone follow-up, a telephone follow-up with education before discharge, or education only before discharge (all performed by nurse specialists) on HR-QoL in HF patients. The results of the randomized clinical trial (RCT) MEETinCY are presented. Method This is a multicenter RCT with 3 different intervention groups (IGs) and one control group (CG) The first IG included only patients' education before discharge (E). The second IG included patients' education and telephone follow-up after discharge for three months (ET). The third IG included only telephone follow-up for three months (T). The Greek version of the MLHFQ was used. The statistical analysis of the impact of the intervention was done using ANCOVA. The magnitude of the effect of the intervention was studied with the Cohen's d coefficient for repeated measurements. The exploration of clinical and demographic factors in the relationship of HR-QoL was done by using linear coefficients of regression. The investigation of the robustness of the results and the intention to treat was carried out by sensitivity analysis. The management of missing value of the MLHFQ was done by using multiple imputation. Results The study included 334 patients. The analysis demonstrated that the study groups differentiates the level of HR-QoL post-intervention measurement in terms of the Overall QoL (F=2.8, 47, p=0.04). The mean level of Overall HR-QoL adjusted for the pre-intervention measurement, in the T: 40.3 (SE=2.2) and ET: 42 (2.2) groups was higher than that of the E group: 39 (2.2) and the CG: 47 (2). Study group differences were also detected statistically in the Social dimension (F=3.4, p=0.02) but not in in the Physical dimension (F=1.9, p=0.11) or the Emotional dimension (F=0.99, p=0.40). However, in the ET and T groups, higher adjusted average levels of the Physical and Social dimension are observed compared to the E and Control group. Overall, IGs exhibited low to moderate effect size improvements (drm = 0.4) while the CG had negligible improvement (drm = 0.02). Women exhibit lower overall HR-QoL scores compared to men by 13.9 points in the MLHFQ scale (b=13.9, p&lt;0.015). NYHA IV (38.5, p&lt;0.001), NYHA III (29.5, p&lt;0.001) and NYHA II (9.15, p&lt;0.001) patients exhibit worse overall HR-QoL compared to NYHA I patients. Conclusion Patients' education before discharge was not found to have an important role over the three- months telephone follow-up after discharge. On the other hand, improvement was found in patients who had the telephone intervention and the possibility to call researchers (nurses) whenever they needed. Patients seem to need continuing communication and support and to feel the availability of contacting and seeking help when needed. Acknowledgement/Funding Cyprus University of Technology's state funded budget [Startup Fund EX2007 (04)]

Health-Related Quality of Life and Cumulative Psychosocial Risks in Adolescents

Psychosocial risks can negatively affect adolescents’ physical, psychological, and social health. Grounded on the cumulative risk theory, the objective of this study was to analyze the differences in health-related quality of life (HRQoL) depending on the accumulation of several psychosocial risks (bullying, cyberbullying, cyberdating abuse, sexting, online grooming, and problematic Internet use). The participants were 3,212 Spanish adolescents (53.7% females) with a mean age of 13.92 ± 1.44, who completed self-report online questionnaires that assessed each of the aforementioned risks and HRQoL. Overall, 41.4% of the female participants and 36.8% of the males presented at least one risk, with significant differences between sexes. The percentage of participants who presented an accumulation of three or more risks was 8.2%. Risk accumulation was related to a lower HRQoL score than those who presented no risks. The scores in HRQoL decrease at up to four risks, point at which the differences ceased to be significant.

IMPACT OF THERAPY ON HEALTH-RELATED QUALITY OF LIFE IN PATIENTS WITH SYSTEMIC LUPUS ERYTHEMATOSUS (ACCORDING TO THE RENAISSANCE REGISTER)

Objective: to assess changes in health-related quality of life (HRQoL) in patients with systemic lupus erythematosus (SLE) during performed therapy.Subjects and methods. The investigation included 128 patients with reliable SLE who fulfilled the 2012 SLICC criteria. Sixty-eight patients received standard therapy; 60 used biological agents (BA). During the first visit and at 12 months, all the patients were assessed for disease activity using by SLEDAI-2K and for organ damage employing the SLICC damage index (DI). HRQoL was assessed by the LupusQoL questionnaire that was filled out by the patients independently.Results and discussion. At Visit 1, the disease activity index averaged 8.0±7.3 in the standard therapy group and 15.4±7.6 in the BA group (p≤0.001); DI was 1.2±0.9 and 1.8±1.8, respectively (p=0.008). BA-treated patients had significantly lower HRQoL scores on all questionnaire scales, except «dependence on others» and «emotional health» ones Both the standard therapy and BA groups showed significantly lower disease activity during Visit 2 at 12 months. HRQoL assessment revealed significant improvements in the scales «pain», «planning», «intimate relationships», «emotional health», «body image», and «fatigue» in the BA group. The standard therapy group had a statistically significant improvement in the scale «dependence on others». All the other scales of the questionnaire displayed a positive change in HRQoL; however, it did not reach statistical significance.

Agreement between mothers\u2019, fathers\u2019, and children\u2019s\u2019 ratings on health-related quality of life in children born with esophageal atresia \u2013 a German cross-sectional study

BackgroundEsophageal atresia (EA) is a rare congenital malformation, which is characterized by the discontinuity of the esophagus. We investigated the agreement between mothers’, fathers’, and children’s’ ratings on health-related quality of life (HRQOL) in children born with EA. We aimed to broaden the understanding of subjective experiences of HRQOL from different perspectives. We hypothesized that the agreement between mother and father ratings would be high, whereas the agreement between child and mother ratings as well as child and father ratings would show more substantial differences.MethodsWe obtained data from 40 families (23 mother-father dyads of children aged 2–7 years and 17 mother-father-child triads of children and adolescents aged 8–18 years) with children born with EA, who were treated in two German hospitals. HRQOL was measured using the generic PedsQL™ questionnaires and the condition-specific EA-QOL© questionnaires. We calculated intraclass coefficients and performed one-way repeated measures ANOVAs to analyze differences for each domain as well as for the total scores.ResultsIntraclass correlation coefficients (ICCs) indicated a strong agreement (≥.80) between mother and father reports of children’s HRQOL for both generic and condition-specific measurements. The ICCs for the generic HRQOL for mother/father-child-dyads revealed only fair to good agreement, whereas ICCs for condition-specific HRQOL showed high agreement for mother-child and father-child-agreement. Analyses of Covariance revealed differences in mother/father-child agreement in the generic domain School, both parents reporting lower HRQOL scores than the children themselves. Fathers reported significantly higher scores in the condition-specific domain Social than their children.ConclusionsResults showed that mothers’ and fathers’ reports corresponded to each other. Nonetheless, these reports might not be interchangeably used because mother-child and father-child agreement showed differences. Children might know the best on how they feel, and parent proxy-report is recommended when reasons such as young age, illness, or cognitive impairments do not allow to ask the child. But parent-report – no matter if reported by mother or father – should only be an additional source to broaden the view on the child’s health status and well-being. The current study contributes to a better understanding of the complex family relationships involved when parenting a child born with EA.

Health-related quality of life of patients with multidrug-resistant tuberculosis in Yemen: prospective study

BackgroundSubstantial efforts are currently focused on investigating and developing new multidrug-resistant tuberculosis (MDR-TB) drugs and diagnostic methods. In Yemen, however, the evaluation of health-related quality of life (HRQoL) and the effect of current MDR-TB treatment on the QoL are commonly ignored. This study evaluated the HRQoL during and after treatment and identified the risk factors that are predictive of HRQoL score differences.MethodA prospective cohort study was conducted in four of the five main MDR-TB centres in Yemen. The patients confirmed with MDR-TB completed the SF-36 V2 survey at the beginning of treatment, end of treatment (continous phase) and at the 1 year follow-up after completing treatment. A total normal base score (NBS) of < 47 reflects impairment of functions, whereas a mental component summary (MCS) score of < 43 indicates a risk of depression.ResultAt the beginning of treatment, the mean scores for all health domains were < 47 NBS points (PF = 40.7, RP = 16.1, BP = 21.6, GH = 28.3, VT = 14.55, SF = 25.9, RE = 13.7, and MH = 14.7). At the completion of treatment, all eight health domains increase compare to beginning of treatment (PF = 59.3, RP = 31.1, BP = 40.9, GH = 48.5, VT = 30.5, SF = 46.6, RE =26.6 & MH = 27.7), but a follow-up duration of 1 year after completing treatment showed decreased NBS points in all domains (PF = 51.5, RP = 30.6, BP = 39.1, GH = 47.8, VT = 30.2, SF = 43.7, RE =26.4 & MH = 27.2). Age, history of streptomycin use, baseline lung cavity, marital status and length of sickness before MDR-TB diagnosis were predictive of in PCS score differences, whereas, age, smoking, baseline lung cavity, stigma, residence, marital status and length of sickness before MDR-TB diagnosis were predictive of MCS scores differences.ConclusionThe length of sickness before DR-TB diagnosis was found to be predictive of the trends in both PCS and MCS scores. Despite the positive outcome of MDR-TB treatment, the low HRQoL scores obtained for all heath domains and especially for mental health reflect a high depression status of patients even after 1 year of completing therapy. Moreover, the poor HRQoL, particularly regarding mental health, of study participants at the end of treatment demands the need for urgent attention from national tuberculosis control programme managers. Therefore, the Yemen Ministry of Health and the National Tuberculosis Control Programme should implement an intervention programme to enhance HRQoL at the end of treatment to avoid any further negative consequences of MDRTB in patients after treatment. Moreover, The HRQoL data of patients with MDR-TB must be collected at the different stages of MDR-TB treatment to provide an additional parameter for assessing the effectiveness of the treatment programme.Trial registrationSNOYEM 1452. Registered 01 February 2013.

Health-related quality of life and its risk factors in Chinese hereditary angioedema patients

BackgroundHereditary angioedema (HAE) is a rare but serious condition characterized by unpredictable and recurrent attacks affecting the skin and mucosa. HAE has wide-ranging impacts on the health-related quality of life (HRQoL) of patients. This study aims to assess the HRQoL of Chinese patients with HAE using the 36-item Short Form Health Survey (SF-36v2) and to explore potential risk factors for low HRQoL.MethodsA total of 104 patients (47 male and 57 female) over age 18 living in China with a known diagnosis of HAE due to C1-INH deficiency completed the SF-36v2 (generic HRQoL questionnaire). The results were compared to Chinese population norms. Subgroup analysis and logistic regression were used to interpret the data.ResultsSF-36v2 showed a significant reduction in all dimensions of HRQoL (p < 0.001) in patients with HAE compared with the general Chinese population. Female patients reported significantly lower bodily pain (BP) (p = 0.039) and physical component scores (PCSs) (p = 0.027) than male patients. Patients with mucosal edema tended to report lower role-physical (RP) limitations (p = 0.031) than patients with only skin edema. There were no differences between the mean scores of the SF-36 in relation to disease subtype, age, disease severity and long-term prophylaxis. Among female patients on long-term prophylaxis, social functioning (SF) (r = − 0.404, p = 0.010), role-emotional (RE) (r = − 0.320, p = 0.044) and mental component scores (MCSs) (r = − 0.313, p = 0.049) were negatively correlated with danazol dosage. A correlation between decreased disease control and decreased HRQoL scores was found, although the correlation was not significant in terms of RE or mental health (MH) scores. The logistic regression model revealed uncontrolled disease to be a risk factor for a low PCS (odds ratio 10.77, 95% confidence interval [CI] 1.78–65.06; p = 0.010) and laryngeal edema to be a risk factor for a low MCS (odds ratio 4.75, 95% CI 1.09–20.69; p = 0.038).ConclusionsChinese HAE patients reported significantly lower HRQoL scores than the general population. Unsatisfactory disease control is a risk factor for decreased PCSs. Laryngeal edema is a risk factor for decreased MCSs.

Quality of Life in Children with Functional Constipation: A Systematic Review and Meta-Analysis

To systematically review the literature on health-related quality of life (HRQoL) in children with functional constipation and to identify disease-related factors associated with HRQoL. The Pubmed, Embase, and PsycINFO database were searched. Studies were included if they prospectively assessed HRQoL in children with functional constipation according to the Rome criteria. Articles were excluded if patients had organic causes of constipation and if HRQoL was only assessed after successful therapeutic interventions. A meta-analysis was performed calculating sample size-weighted pooled mean and SD of HRQoL scores. The quality of the studies was also assessed. A total of 20 of 2658 studies were included, providing HRQoL data for 2344 children. Quality of evidence was considered to be poor in 9 of the 20 studies (45%); 13 of the 20 studies reported sufficient data to be included in the meta-analysis. Pooled total HRQoL scores of children with functional constipation were found to be lower compared with healthy reference samples (65.6 vs 86.1; P<.01). Similar HRQoL scores were found according to self-report and parent proxy report. Hospital-based studies reported lower HRQoL scores as compared with community-based studies. Two studies reported on HRQoL scores of children with and without fecal incontinence, but no significant difference was found. HRQoL is compromised in children with functional constipation.

Health-related quality of life and related characteristics of persons with spinal cord injury in Nigeria

Background: Spinal cord injury (SCI) is impairment of the spinal cord resulting in numerous health problems that considerably affect the quality of life (QOL) of the patients. Moreover, a number of sociodemographic and clinical characteristics may influence the persons' health-related quality of life (HRQOL). However, there is limited information on the HRQOL and related characteristics among affected persons living in Nigeria. This study explores the HRQOL and related characteristics of persons with SCI in Kano, Northwestern Nigeria. Methods: A prospective cross-sectional survey of 41 subjects with SCI and 40 age and gender matched healthy subjects was conducted from January to December 2016. Subjects' sociodemographic and clinical characteristics and HRQOL (using the SF-36 questionnaire) were collected and analyzed. Results: The majority of the subjects were men in both the SCI (85.4%) and healthy (82.5%) groups. The mean injury duration was 28.4 ± 20.2 months. Road traffic accident (46.3%) was the leading cause of injury with paraplegia (70.7%) being the most frequent level of injury. A greater number of the subjects (43.9%) had a complete impairment. Subjects with SCI had significantly lower HRQOL in the domains of general health, physical functioning, bodily pain, social functioning, role-emotional, and mental health compared to healthy controls. Gender, level of injury, and severity of injury were commonly found to be related to lower HRQOL scores. Conclusion: Persons with SCI from Kano, Northwestern Nigeria have lower HRQOL across various domains compared to healthy controls. Common factors related to lower HRQOL scores were gender, level of injury, and severity of injury. There is a need for optimal rehabilitation for persons with SCI in Kano, Northwestern Nigeria.