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Skeletal Muscle Changes, Function, and Health-Related Quality of Life in Survivors of Pediatric Critical Illness.
Ong, C, Lee, JH, Wong, JJM, Leow, MKS, Puthucheary, ZA
Critical care medicine. 2021;(9):1547-1557
Abstract
OBJECTIVES To describe functional and skeletal muscle changes observed during pediatric critical illness and recovery and their association with health-related quality of life. DESIGN Prospective cohort study. SETTING Single multidisciplinary PICU. PATIENTS Children with greater than or equal to 1 organ dysfunction, expected PICU stay greater than or equal to 48 hours, expected survival to discharge, and without progressive neuromuscular disease or malignancies were followed from admission to approximately 6.7 months postdischarge. INTERVENTIONS None. MEASUREMENTS AND MAIN RESULTS Functional status was measured using the Functional Status Scale score and Pediatric Evaluation of Disability Inventory-Computer Adaptive Test. Patient and parental health-related quality of life were measured using the Pediatric Quality of Life Inventory and Short Form-36 questionnaires, respectively. Quadriceps muscle size, echogenicity, and fat thickness were measured using ultrasonography during PICU stay, at hospital discharge, and follow-up. Factors affecting change in muscle were explored. Associations between functional, muscle, and health-related quality of life changes were compared using regression analysis. Seventy-three survivors were recruited, of which 44 completed follow-ups. Functional impairment persisted in four of 44 (9.1%) at 6.7 months (interquartile range, 6-7.7 mo) after discharge. Muscle size decreased during PICU stay and was associated with inadequate energy intake (adjusted β, 0.15; 95% CI, 0.02-0.28; p = 0.030). No change in echogenicity or fat thickness was observed. Muscle growth postdischarge correlated with mobility function scores (adjusted β, 0.05; 95% CI, 0.01-0.09; p = 0.046). Improvements in mobility scores were associated with improved physical health-related quality of life at follow-up (adjusted β, 1.02; 95% CI, 0.23-1.81; p = 0.013). Child physical health-related quality of life at hospital discharge was associated with parental physical health-related quality of life (adjusted β, 0.09; 95% CI, 0.01-0.17; p = 0.027). CONCLUSIONS Muscle decreased in critically ill children, which was associated with energy inadequacy and impaired muscle growth postdischarge. Muscle changes correlated with change in mobility, which was associated with child health-related quality of life. Mobility, child health-related quality of life, and parental health-related quality of life appeared to be interlinked.
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Quality of Life in CKD Patients on Low-Protein Diets in a Multiple-Choice Diet System. Comparison between a French and an Italian Experience.
Fois, A, Torreggiani, M, Trabace, T, Chatrenet, A, Longhitano, E, Mazé, B, Lippi, F, Vigreux, J, Beaumont, C, Moio, MR, et al
Nutrients. 2021;(4)
Abstract
Prescribing a low-protein diet (LPD) is part of the standard management of patients in advanced stages of chronic kidney disease (CKD). However, studies on the quality of life (QoL) of patients on LPDs are lacking, and the impact these diets have on their QoL is often given as a reason for not prescribing one. We, therefore, decided to assess the QoL in a cohort of CKD stage 3-5 patients followed up by a multiple-choice diet approach in an outpatient nephrology clinic in France. To do so, we used the short version of the World Health Organization's quality of life questionnaire and compared the results with a historical cohort of Italian patients. We enrolled 153 patients, managed with tailored protein restriction in Le Mans, and compared them with 128 patients on similar diets who had been followed in Turin (Italy). We found there were no significant differences in terms of age (median 73 vs. 74 years, respectively), gender, CKD stage, and comorbidities (Charlson's Comorbidity Index 7 vs. 6). French patients displayed a greater body mass index (29.0 vs. 25.4, p < 0.001) and prevalence of obesity (41.2 vs. 15.0%, p < 0.001). Baseline protein intake was over the target in France (1.2 g/kg of real body weight/day). In both cohorts, the burden of comorbidities was associated with poorer physical health perception while kidney function was inversely correlated to satisfaction with social life, independently of the type of diet. Our study suggests that the type of LPD they follow does not influence QoL in CKD patients and that a personalized approach towards protein restriction is feasible, even in elderly patients.
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[Analysis of health-related quality life in celiac patients].
Fernández Miaja, M, Suárez González, M, Díaz Martín, JJ, Jiménez Treviño, S, Bousoño García, CA
Nutricion hospitalaria. 2021;(4):715-721
Abstract
Introduction: treatment of celiac disease is gluten-free diet for life. This can impact the quality of life (QoL) of patients. Objectives:the aim of this study was to evaluate the QoL and the factors with an impact on QoL in a sample of children with celiac disease. Methods and materials: a descriptive observational study. QoL was evaluated using the Celiac Disease Dux Questionnaire (CDDUX). Adherence to gluten-free diet was assessed with the Celiac Dietary Adherence Test (CDAT) and the presence of gluten immunogenic peptides (GIP) in the stools. Sociodemographic and clinical data were collected, and an ad-hoc survey was developed. Results: eighty patients were included. Median CDDUX score was 44.04 points (QoL: "neutral"). Subscale scores included: "communication", 58.3 points ("neutral"); "having CD", 25 points ("Bad"); and "diet", 41.6 points ("neutral"). QoL was worse among patients with celiac relatives (the result of the survey was "bad" vs. "neutral" with p = 0.02) and among those who found unsatisfactory the somatosensory characteristics and the price of gluten-free food (the result of the survey was "bad" vs. "neutral" with p = 0.02). Those who found unsatisfactory the texture of these food reported a worse QoL ("bad" vs. "neutral", p = 0.009). Those who reported eating outside the home as a transgression inducer reported a "bad" QoL; those who did not, reported a "neutral" QoL (p = 0.03). Conclusions: celiac patients report a "neutral" QoL. A poorer QoL was related to having celiac relatives, finding gluten-free food unsatisfactory, and considering eating outside the home as an inducer factor for transgressions.
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The difficult journey to treatment for women suffering from heavy menstrual bleeding: a multi-national survey.
da Silva Filho, AL, Caetano, C, Lahav, A, Grandi, G, Lamaita, RM
The European journal of contraception & reproductive health care : the official journal of the European Society of Contraception. 2021;(5):390-398
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Abstract
PURPOSE Up to 30% of women of reproductive age experience HMB, which has a substantial impact on their quality of life. A clinical care pathway for women with HMB is an unmet need, but its development requires better understanding of the factors that characterise current diagnosis and management of the condition. MATERIALS AND METHODS This observational, survey-based study assessed the burden, personal experiences, and path through clinical management of women with HMB in Canada, the USA, Brazil, France and Russia using a detailed, semi-structured online questionnaire. After excluding those reporting relevant organic pathology, responses to the questionnaire from 200 women per country were analysed. RESULTS Around 75% of women with HMB had actively sought information about heavy periods, mostly through internet research. The mean time from first symptoms until seeking help was 2.9 (Standard deviation, 3.1) years. However, 40% of women had not seen a health care professional about the condition. Furthermore, 54% had never been diagnosed or treated. Only 20% had been diagnosed and received appropriate treatment. Treatment was successful in 69% of those patients currently receiving treatment. Oral contraceptives were the treatment most commonly prescribed for HMB, although the highly effective levonorgestrel-intrauterine system was used by only a small proportion of women. CONCLUSIONS This study provides insight into the typical journey of a woman with HMB which may help patients and health care professionals improve the path to diagnosis and treatment, although further research with long-term outcomes is needed.
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Dysphagia Affecting Quality of Life in Cerebellar Ataxia-a Large Survey.
Rönnefarth, M, Hanisch, N, Brandt, AU, Mähler, A, Endres, M, Paul, F, Doss, S
Cerebellum (London, England). 2020;(3):437-445
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Abstract
Dysphagia is a common symptom in neurodegenerative disorders and is generally associated with increased mortality. In the clinical care setting of ataxia patients, no systematical and standardized assessment of dysphagia is employed. Its impact on patients' health-related quality of life is not well understood. To assess the impact of dysphagia in ataxia patients on diet, body weight, and health-related quality of life. We conducted a large survey using self-reported questionnaires for swallowing-related quality of life (Swal-QOL) and a food frequency list in combination with retrospective clinical data of 119 patients with cerebellar ataxia treated in the neurological outpatient clinic of a large German university hospital. Seventeen percent of ataxia patients suffered from dysphagia based on the Swal-QOL score. Less than 1% of all patients reported dysphagia as one of their most disabling symptoms. Dysphagia was associated with unintentional weight loss (p = 0.02) and reduced health-related quality of life (p = 0.01) but did not affect individual nutritional habits (p > 0.05; Chi-squared test). Dysphagia is a relevant symptom in cerebellar ataxia. A systematic screening for dysphagia in patients with cerebellar ataxia would be desirable to enable early diagnosis and treatment.
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Effect of Health-Promoting Lifestyle Modification Education on Knowledge, Attitude, and Quality of Life of Postmenopausal Women.
Rathnayake, N, Alwis, G, Lenora, J, Mampitiya, I, Lekamwasam, S
BioMed research international. 2020;:3572903
Abstract
Limited knowledge and negative attitudes about menopause among postmenopausal women (PMW) create a multitude of health-related issues leading to impaired quality of life (QOL) among them. This study evaluated the impact of a health-promoting lifestyle education intervention (HPLEI) on knowledge, attitude, and QOL in a group of PMW in Sri Lanka. A quasi-experimental study was conducted with 72 PMW, matched for sociodemographic status of the community from two geographically separated areas in Galle, and they were allocated to intervention (n = 37) and control (n = 35) groups. HPLEI is comprised of health education sessions focused on postmenopausal health management with lifestyle modifications provided only for the intervention group for 8 weeks and follow-up for 6 months. The control group was not given any planned education programme and was allowed to proceed with the usual lifestyle during this period. Knowledge, attitude, menopause-specific QOL (MENQOL), and overall QOL were evaluated in both groups with self-administered questionnaires at the baseline, after 8 weeks of education sessions and at the end of 6 months of follow-up. The mean (SD) ages of the intervention and control groups were 54.6 (4.5) and 56.5 (3.4) (p = 0.06) years, respectively. All evaluated variable scores were not different between the intervention and control groups (p > 0.05) at the baseline. In the intervention group, knowledge (mean ± SD; 21.70 ± 1.05) and attitude (mean ± SD; 44.02 ± 5.33) scores increased at the end (p < 0.001). In the control group, a marginal increase in all dimensions of knowledge scores (mean ± SD; 9.71 ± 2.21) and unchanged attitude scores (mean ± SD; 23.91 ± 7.56) were seen. All MENQOL scores decreased during the follow-up in the intervention group (mean ± SD; 138.51 ± 18.47) (p < 0.001) except the sexual domain (p = 0.32). MENQOL scores were increased in the control group (mean ± SD; 92.05 ± 28.87) (p < 0.001) with time. Overall QOL scores increased (mean ± SD; 74.85 ± 9.71) (p < 0.001) in the intervention group during the study period and in the control group overall QOL (mean ± SD; 51.03 ± 13.61) showed a reduction (p < 0.001) at the end. Health education focused on health-promoting lifestyle modifications was effective in improving knowledge, attitude, MENQOL, and overall QOL of PMW.
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An international study of the quality of life of adult patients treated with home parenteral nutrition.
Baxter, JP, Fayers, PM, Bozzetti, F, Kelly, D, Joly, F, Wanten, G, Jonkers, C, Cuerda, C, van Gossum, A, Klek, S, et al
Clinical nutrition (Edinburgh, Scotland). 2019;(4):1788-1796
Abstract
BACKGROUND & AIMS Home parenteral nutrition-quality of life (HPN-QOL©) is a self-assessment tool for the measurement of QOL in patients on HPN. The aims of this study were: to re-assess the basic psychometric properties of the HPN-QOL© in a multinational sample of adult patients; to provide a description of QOL dimensions by short and long HPN treatment duration; to explore clinical factors potentially associated to QOL scores. METHODS Patients (n = 699) from 14 countries completed the HPN-QOL©. The questionnaires were analysed to evaluate data completeness, convergent/discriminant validity and internal-consistency reliability. The association of overall QOL and HPN treatment duration as well as other clinical factors were investigated using multivariable linear regression models. RESULTS The analysis of the multitrait-scaling and internal consistency indicates a good fit with the questionnaire structure for most items. Item discriminant validity correlation was satisfactory and psychometric evaluation of the HPN-QOL© in the different English, French and Italian language patient sub-groups confirmed psychometric equivalence of the three questionnaire versions. The results of the multivariable linear regression showed that QOL scores were significantly associated with HPN duration (better in long-term), underlying disease (better in Crohn's disease and mesenteric ischaemia) and living status (worse in living alone) and, after adjusting for the other factors, with the number of days of HPN infusion per week. CONCLUSIONS The HPN-QOL©, is a valid tool for measurement of QOL in patients on HPN, to be used in the clinical practice as well as in research.
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Long-Term Health Outcomes Associated With an Exercise Referral Scheme: An Observational Longitudinal Follow-Up Study.
Prior, F, Coffey, M, Robins, A, Cook, P
Journal of physical activity & health. 2019;(4):288-293
Abstract
BACKGROUND Exercise referral schemes (ERSs) support inactive adults, who have chronic health conditions, to become physically active. Uncertainty exists regarding the effectiveness of ERSs, with few studies evaluating their long-term impact. The aims of this study were to evaluate the long-term impact (12 mo) of participation in an ERS on self-reported physical activity (PA) and a range of health-related outcomes. METHODS Data were analyzed for participants of a 24-week ERS who attended a week 52 follow-up between July 2015 and 2017. PA and health-related outcomes collected at weeks 1, 24, and 52 were analyzed using the Friedman test and Wilcoxon signed-ranks test. RESULTS A total of 273 participants attended the week 52 follow-up. Self-reported PA significantly increased by a median of 636 MET minutes at week 52. There were also significant improvements in body mass index, systolic blood pressure, mental well-being, and health-related quality of life. CONCLUSIONS For every 8 participants referred to this 24-week ERS, 1 participant went on to show long-term improvements in at least 1 health indicator. The evidence base requires further long-term evaluations to confirm these findings across a range of ERS providers. Changes in self-reported PA would be supported by the inclusion of device-based measurment of PA.
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Quality of Life and Nutritional Status in diabetic patients on hemodialysis.
Cepeda Marte, JL, Javier, A, Ruiz-Matuk, C, Paulino-Ramirez, R
Diabetes & metabolic syndrome. 2019;(1):576-580
Abstract
AIMS: The quality of life (QoL) of patients with diabetes and in hemodialysis is affected by their nutritional status. We aimed to determine the correlation between QoL and nutritional status of patients in hemodialysis. METHODS We conducted a study with people with diabetes and in hemodialysis. We used Kidney Disease and Quality of Life-Short form (KDQOL-SFTM) scale to evaluate QoL and the Subjective Global Assessment (SGA) questionnaire for nutritional evaluation. RESULTS The studied patients, 71.43% were over 55 years old and 81% of participants were male. The domain of QoL must impaired were cognitive function (x¯=26.35, SD = 20.81) and interaction of social quality (x¯=19.32, SD = 17.24). The characteristics that most favorably impacted QoL were dialysis equipment support (x¯=83.93, SD = 20.59) and patient satisfaction (x¯=86.51, SD = 17.17). The undernourished patients were 56.6% (n = 14). There was a strong lineal relationship between the Physical and Mental Health Composite and nutritional status, Spearman rank (rho = 0.935, p = <0.001), (rho=0.926, p = <0.001) respectively. CONCLUSION There is a strong relationship between QoL and nutritional status, ensuring that a good nutritional status could positively influence QoL.
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Who are the individuals diagnosed with epilepsy using the Public Health System in the city of Pelotas, southern Brazil?
Häfele, CA, Freitas, MP, Gervini, BL, de Carvalho, RM, Rombaldi, AJ
Epilepsy & behavior : E&B. 2018;:84-90
Abstract
The aim of this study was to describe sociodemographic, clinical, behavioral, nutritional, and health-related variables from people with epilepsy. A descriptive observational study was carried out in the city of Pelotas, southern Brazil. Sociodemographic, clinical, behavioral, nutritional, and health-related variables were collected. A univariate analysis was performed, calculating the measures of central tendency for continuous variables and proportions for categorical ones. The sample consisted of 101 people, age ranging from 12 to 75years, mostly male (50.5%) and white (59.4%). Only 37.2% from the sample was employed, and the average income was R$ 788.00 Brazilian Reais (US$ 245.90 at the moment of the interview). From all the subjects, 65.6% was in treatment with monotherapy, 62.9% presented more than 15 seizures during the life, 67.3% showed active epilepsy, 64.6% were physically inactive, 52.5% presented normal body mass index, and 50% showed generalized seizures. The most used antiepileptic drug was the carbamazepine. The average score of depression was 12.6±4.1 points and 34.6% showed severe depressive symptoms (equal or higher than 15 points). The mean score of trait and state anxiety was 12.2±3.6 and 15.1±3.4 points, respectively (ranging from 6 to 24 points). The mean score of quality of life and stress was 63.2±18.2 (ranging from 0 to 100 points) and 21.2±7.1 points (ranging from 0 to 40 points), respectively. Considering the medication side effects, the mean score was 42.4±8.9 points, 38.5% showing high rates (higher than 45 points), and only 16% showing good sleep quality. In conclusion, these results are important to improve understanding of these individuals' disease and to subsidize the specific public policies in countries of low and middle income.