scholarly journals Evaluating the Quality of Life of 231 Children With Primary Nephrotic Syndrome and Assessing Parental Awareness of the Disease

2021 ◽  
Vol 9 ◽  
Author(s):  
Na Li ◽  
Jia Hao ◽  
Tong Fu ◽  
Yue Du
Keyword(s):  
Quality Of Life ◽  
Nephrotic Syndrome ◽  
Sleep Disturbances ◽  
Integrated Management ◽  
Psychological Wellbeing ◽  
Average Score ◽  
Online Questionnaire ◽  
Primary Nephrotic Syndrome ◽  
Making Friends

Objective: This study aims to investigate the quality of life of children with primary nephrotic syndrome (PNS), assess their parents' disease awareness, and provide a basis for the comprehensive management of children with PNS.Methods: A total of 231 children with PNS who were hospitalized in the Department of Pediatric Renal Rheumatology and Immunology in the ShengJing Hospital of the China Medical University from March 2019 to October 2020 were selected as the study subjects. The subjects and their parents were surveyed via a disease education and communication WeChat group and online questionnaire to investigate the children's quality of life, the needs of the parents, and their knowledge related to the disease.Results: In 93.51% of cases, the child's quality of life was affected, with mild to moderate effects being the most frequent (90.47%). The lowest overall quality of life scores were recorded for children who had been diagnosed 1–3 year prior to inclusion in the study, and the scores plateaued thereafter. On the physical functioning scale, the longer the illness, the greater the physical impact, with children typically experiencing pain and fatigue. The children generally scored low on the emotional functioning scale, exhibiting sleep disturbances for up to 5 years and worrying about accidents. The children's average score on the social functioning scale was high, with males achieving significantly higher scores (69.61 ± 25.42) than females (62.30 ± 27.51), and more than one-third of the children experiencing problems getting along with other teenagers and making friends. The primary problems expressed by parents were anxiety (59%), sadness (44%), fear (43%), and depression (40%), and several parents indicated that they struggled with issues of self-blame.Conclusion: PNS impacts the physical and psychological wellbeing of children suffering from the condition, significantly reduces their quality of life, and negatively impacts the psychological wellbeing of their parents. Therefore, children with PNS and their families need integrated management by doctors, nurses, dieticians, psychotherapists, educational institutions, and social stakeholders to improve their quality of life.

scholarly journals Reliability of generic quality-of-life instruments in assessing health-related quality of life among children and adolescents with idiopathic nephrotic syndrome: a systematic review

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Ann E. Aronu ◽  
Samuel N. Uwaezuoke ◽  
Uzoamaka V. Muoneke
Keyword(s):  
Quality Of Life ◽  
Nephrotic Syndrome ◽  
Children And Adolescents ◽  
Idiopathic Nephrotic Syndrome ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Generic Quality ◽  
Quality Of Life Instruments

Abstract Introduction Most of the studies reporting the negative impact of idiopathic nephrotic syndrome on health-related quality of life in children and adolescents were conducted with generic quality-of-life instruments rather than disease-specific instruments. The consistency of these studies' findings using these generic instruments is not well established. Aim This systematic review aims to determine the reliability of current generic quality-of-life instruments in assessing health-related quality of life among children and adolescents with idiopathic nephrotic syndrome. Methods We searched the PubMed, MEDLINE, EMBASE, and Google Scholar databases for articles published between 2000 and 2020, using appropriate descriptors. We included primary studies that met the eligibility criteria, independently screened their titles and abstracts, and removed all duplicates during the study-selection process. We resolved disagreements until a consensus was reached on study selection. We independently retrieved relevant data, including the generic quality-of-life instruments and the subjects’ and controls’ aggregate health-related quality of life scores, using a preconceived data-extraction form. Results Ten original articles were selected for qualitative and quantitative analyses. Some of the studies reported the following significant findings. The mean health-related quality of life scores for children with prevalent and incident nephrotic syndrome were 68.6 (range, 52.6–84.6) and 73.7 (range, 55.9–91.5), respectively. Children with idiopathic nephrotic syndrome and their controls with other chronic diseases had median scores of 65 (interquartile range, 59–68.75) and 62.2 (interquartile range, 58.05–65.78). Patients on oral immunosuppressive drug and intravenous rituximab reportedly had median scores of 76.2 and 72.6 and mean scores of 71.4 (range, 55.4–87.4) and 61.6 (range, 42.1–81.1) respectively for quality-of-life assessment on the ‘school functioning domain.’ Conclusions The health-related quality of life scores in patients with idiopathic nephrotic syndrome are consistently low. Lower scores occur in prolonged disease duration and severe clinical phenotypes, whereas the scores are higher than the scores obtained in other chronic diseases. These consistent findings underscore the reliability of the current generic instruments in assessing health-related quality of life in patients with idiopathic nephrotic syndrome.

scholarly journals Quality of Life of Brazilian Vegetarians Measured by the WHOQOL-BREF: Influence of Type of Diet, Motivation and Sociodemographic Data

Nutrients ◽  
2021 ◽  
Vol 13 (8) ◽  
pp. 2648
Author(s):  
Shila Minari Hargreaves ◽  
Eduardo Yoshio Nakano ◽  
Heesup Han ◽  
António Raposo ◽  
Antonio Ariza-Montes ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Online Survey ◽  
Well Being ◽  
Vegetarian Diet ◽  
The Other ◽  
Average Score ◽  
Cross Sectional ◽  
Domain 3 ◽  
Domain 4

This study aimed to evaluate the general quality of life (QoL) of Brazilian vegetarians. A cross-sectional study was conducted with Brazilian vegetarian adults (18 years old and above). Individuals were recruited to participate in a nationwide online survey that comprised the WHOQOL-BREF as well as sociodemographic and characterization questions related to vegetarianism. The WHOQOL-BREF is composed of 24 items which are divided into four domains (domain 1: physical health; domain 2: psychological well-being; domain 3: social relationships; and domain 4: environment), plus two general items which were analyzed separately, totaling 26 items. The answers from the questionnaire were converted into scores with a 0–100 scale range, with separate analyses for each domain. Results were compared among groups based on the different characteristics of the vegetarian population. A total of 4375 individuals completed the survey. General average score results were 74.67 (domain 1), 66.71 (domain 2), 63.66 (domain 3) and 65.76 (domain 4). Vegans showed better scores when compared to the other vegetarians, except in domain four, where the statistical difference was observed only for semi-vegetarians (lower score). Individuals adopting a vegetarian diet for longer (>1 year) showed better results for domains one and two, with no difference for the other domains. Having close people also adopting a vegetarian diet positively influenced the results for all domains. On the other hand, it was not possible to distinguish any clear influence of the motivation for adopting a vegetarian diet on the scores’ results. Adopting a vegetarian diet does not have detrimental effects on one’s QoL. In fact, the more plant-based the diet, and the longer it was adopted, the better the results were.

scholarly journals Severe reflux, sleep disturbances, and health-related quality of life after esophageal cancer surgery

2021 ◽  
Author(s):  
Pernilla Lagergren ◽  
Asif Johar ◽  
Helen Rosenlund ◽  
Lars Arnberg ◽  
Lena Haglund ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Sleep Disturbances ◽  
Poor Sleep ◽  
Health Related Quality ◽  
Poor Sleep Quality ◽  
Increased Risk ◽  
Related Quality ◽  
Health Related ◽  
Esophagectomy For Cancer

Abstract Purpose Esophagectomy for cancer is an extensive procedure often followed by severe complications. This study investigated whether patients with severe symptoms of reflux are more likely to have sleep disturbances and reduced health-related quality of life (HRQL) after esophagectomy. Methods This Swedish nationwide prospective cohort study encompassed all patients who had undergone esophagectomy for cancer between 2013 and 2018. One year after surgery, the patients responded to three questionnaires on reflux (EORTC QLQOG25), sleep disturbances (KSQ), and HRQL (EORTC QLQ-C30). Multivariable logistic regression provided odds ratios (OR) with 95% confidence intervals (CI) for sleep disturbance/reduced HRQL between patients with and without reflux, adjusted for potential confounders. Results Among 241 esophagectomy patients, 66 (27%) reported severe reflux. Patients with reflux had an increased risk of sleep disturbances (OR 2.3, 95% CI: 1.3–4.3) compared to patients without reflux. More specifically, these patients were more likely to suffer from poor sleep quality (OR 4.9, 95% CI: 1.9–12.4). Patients with reflux and sleep disturbances reported reductions in global quality of life, role function, emotional function, social function, and more symptoms in all scales, except for dyspnea. Conclusions This study suggests that patients with severe symptoms of reflux after esophagectomy have an increased risk of sleep disturbances and poor sleep quality, which in turn are associated with reduced HRQL. Implications for Cancer Survivors Alleviating reflux after oesophageal cancer surgery is important, since this common symptom might reduce HRQL and well-being.

scholarly journals Adherence to Therapy, Physical and Mental Quality of Life in Patients with Multiple Sclerosis

2021 ◽  
Vol 11 (7) ◽  
pp. 672
Author(s):  
Alessandra Buja ◽  
Guendalina Graffigna ◽  
Simona F. Mafrici ◽  
Tatjana Baldovin ◽  
Carlo Pinato ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Behavioral Interventions ◽  
Positive Association ◽  
Cross Sectional Study ◽  
Health Index ◽  
Online Questionnaire ◽  
Cross Sectional ◽  
Adherence To Therapy

Ensuring multiple sclerosis (MS) patients’ adherence to therapy is often challenging, but it is crucial to their survival and health-related quality of life (HRQoL). The aim of the present study was to outline connections between adherence, physical and mental HRQoL, levels of psychological readiness to engage in a treatment, levels of social support, anthropometric, socio-demographic and clinical factors in patients suffering from MS. This cross-sectional study involved a sample of 237 Italian MS patients. A survey was conducted with a structured self-administered online questionnaire using validated measures of quality of life, adherence to therapy and anthropometric, socio-demographic, psychological and clinical variables. A path analysis was used to test the overall structure of the associations between the variables. The pathway indicates a positive association between mental health index and a stronger degree of engagement and being or having been in a long-term relationship. Physical health index was positively associated with age, having an occupation, and having a specific form of MS. Having had relapses in the previous year raised the odds of better adherence to therapy, while an increase in Body Mass Index (BMI) reduced them. Our findings could help in the management of MS patients, promoting behavioral interventions that take the psychological and socio-demographic peculiarities of each patient into account with a view to improving their adherence to therapy.

scholarly journals Long-COVID Syndrome? A Study on the Persistence of Neurological, Psychological and Physiological Symptoms

Healthcare ◽  
2021 ◽  
Vol 9 (5) ◽  
pp. 575
Author(s):  
Graziella Orrù ◽  
Davide Bertelloni ◽  
Francesca Diolaiuti ◽  
Federico Mucci ◽  
Mariagrazia Di Giuseppe ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Sleep Disturbances ◽  
Online Survey ◽  
Clinical Presentation ◽  
Demographic Data ◽  
Severity Index ◽  
Long Term Effects ◽  
Targeted Treatments ◽  
Euroqol 5D

Background: Emerging aspects of the Covid-19 clinical presentation are its long-term effects, which are characteristic of the so-called “long COVID”. The aim of the present study was to investigate the prevalence of physical, psychological, and sleep disturbances and the quality of life in the general population during the ongoing pandemic. Methods: This study, based on an online survey, collected demographic data, information related to COVID-19, sleep disturbances, and quality of life data from 507 individuals. The level of sleep disturbances and quality of life was assessed through the Insomnia Severity Index (ISI) and the EuroQol-5D (EQ-5D), respectively. Results: In total, 507 individuals (M = 91 and F = 416 women) completed the online survey. The main symptoms associated with “long COVID” were headache, fatigue, muscle aches/myalgia, articular pains, cognitive impairment, loss of concentration, and loss of smell. Additionally, the subjects showed significant levels of insomnia (p < 0.05) and an overall reduced quality of life (p < 0.05). Conclusions: The results of the study appear in line with recent publications, but uncertainty regarding the definition and specific features of “long COVID” remains. Further studies are needed in order to better define the clinical presentation of the “long COVID” condition and related targeted treatments.

scholarly journals Quality of life of caregivers of cancer patients in home palliative care: a non-interventional study

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
E Faggian ◽  
S Favero ◽  
D Gregori ◽  
M Martinato
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Cancer Patient ◽  
Home Care ◽  
Continuity Of Care ◽  
Physical Stress ◽  
Private Life ◽  
Phone Call ◽  
Average Score

Abstract Background caregivers of home-cared cancer patient during palliative phase are often under psychological and physical pressure. This can lead to a low level quality of life (QoL). This study assesses the QoL of this type of caregiver, more specifically it aims to outline which factors (age, type of palliative care, amount of time spent daily with the patient) affect positively or negatively the QoL score. Methods The AC-QoL questionnaire has been completed by 25 caregivers of oncological patients in home care in north-eastern Italy. The questionnaire is made of 40 items divided into 8 subjects: support in care, choice of care, stress, economic issues, personal growth, sense of value, care skills and personal satisfaction. It has been administered during a home visit or during a follow-up phone call. Results The average score obtained is 71/120, which means a medium level of QoL. The factors which worsen the QoL are the psychological and physical stress (average score 5/15) and restrictions on caregivers' private life (average score 6/15). No significant differences in the QoL of the caregivers are related to social and personal variables (such as age, working condition, relationship with the patient, type of palliative care, amount of time spent daily with the patient). Conclusions These caregivers play a fundamental role in the management of an appropriate continuity of care and their health and QoL are important. Stress and restrictions on private life are the factors which worsen QoL, that's why nurses should evaluate the caregivers' wellbeing during home-visits. Caregivers usually feel able to offer adequate assistance if they have been adequately trained to by healthcare professionals: nurses should provide every useful tool to aloud the caregiver to feel able of and comfortable providing assistance to his/her relative trough an “empowerment process”. Key messages Caregiver of cancer patient in charge of home palliative care is fundamental for an appropriate continuity of care and his health and quality of life (QoL) are important to provide good assistance. Psycho-physical stress and restrictions on private life worsen QoL. Caregiver’s wellbeing should be assessed and useful tools should be provided by home care nurses to ease caregivers’ job.

Sleep disturbance in patients attending specialized chronic pain clinics in Denmark: a longitudinal study examining the relationship between sleep and pain outcomes

2021 ◽  
Vol 0 (0) ◽  
Author(s):  
Henrik Bjarke Vaegter ◽  
Mette Terp Høybye ◽  
Frederik Hjorth Bergen ◽  
Christine E. Parsons
Keyword(s):  
Quality Of Life ◽  
Chronic Pain ◽  
Sleep Quality ◽  
Pain Intensity ◽  
Sleep Disturbances ◽  
Pain Disability ◽  
Pain Clinics ◽  
Pain Outcomes

Abstract Objectives Sleep disturbances are highly prevalent in patients with chronic pain. However, the majority of studies to date examining sleep disturbances in patients with chronic pain have been population-based cross-sectional studies. The aims of this study were to 1) examine the frequency of sleep disturbances in patients referred to two interdisciplinary chronic pain clinics in Denmark, 2) explore associations between sleep disturbances and pain intensity, disability and quality of life at baseline and follow-up, and 3) explore whether changes in sleep quality mediated the relationships between pain outcomes at baseline and pain outcomes at follow-up. Methods We carried out a longitudinal observational study, examining patients enrolled in two chronic pain clinics assessed at baseline (n=2,531) and post-treatment follow-up (n=657). Patients reported on their sleep disturbances using the sleep quality subscale of the Karolinska Sleep Questionnaire (KSQ), their pain intensity using 0–10 numerical rating scales, their pain-related disability using the Pain Disability Index (PDI), and quality of life using the EuroQol-VAS scale. The average time between baseline and follow-up was 207 days (SD=154). Results At baseline, the majority of patients reported frequent sleep disturbances. We found a significant association at baseline between self-reported sleep disturbances and pain intensity, pain-related disability, and quality of life, where greater sleep disturbance was associated with poorer outcomes. At follow-up, patients reported significant improvements across all pain and sleep outcomes. In two mediation models, we showed that changes in sleep disturbances from baseline to follow-up were significantly associated with (i) pain intensity at follow-up, and (ii) pain disability at follow-up. However, baseline pain intensity and disability scores were not associated with changes in sleep disturbances and, we did not find evidence for significant mediation of either pain outcome by changes in sleep disturbances. Conclusions Self-reported sleep disturbances were associated with pain outcomes at baseline and follow-up, with greater sleep disturbances associated with poorer pain outcomes. Changes in sleep quality did not mediate the relationships between baseline and follow-up scores for pain intensity and disability. These findings contribute to a growing body of evidence confirming an association between sleep and chronic pain experience, particularly suggestive of a sleep to pain link. Our data following patients after interdisciplinary treatment suggests that improved sleep is a marker for a better outcome after treatment.

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