scholarly journals Risk factors for impaired health-related quality of life in a cohort of pediatric patients with inborn metabolic diseases

2021 ◽  
Author(s):  
Sandy Siegert ◽  
Anne Roscher ◽  
Dorothea Moeslinger ◽  
Vassiliki Konstantopoulou ◽  
Marion Herle
Keyword(s):  
Risk Factors ◽  
Children And Adolescents ◽  
Psychosocial Functioning ◽  
Intellectual Development ◽  
Pediatric Patients ◽  
Metabolic Diseases ◽  
Health Impairment ◽  
Related Quality ◽  
Health Related

AbstractIn the last decade, health-related quality of life (HrQoL) has become an increasingly important outcome parameter in children and adolescents with chronic health conditions; among them are pediatric patients with inborn metabolic diseases (IMDs). Hence, knowledge on this topic is increasing, but findings on non-medical influences on the HrQoL of IMD patients are still scarce. In the present study, we retrospectively evaluated the self-reported generic HrQoL of a cohort of pediatric patients (ages 7 to 17 years) with diverse IMDs (n = 204) and explored associations between HrQoL and psychosocial and medical characteristics of the patients. We aimed to identify risk factors for impaired HrQoL to improve and tailor support for the patients and economize resources. Generic HrQoL was assessed with the KINDL-R questionnaire. We compared the HrQoL scores to published German normative data and analyzed the impact of demographic variables and intellectual and psychosocial functioning on the HrQoL. Moreover, we examined the influence of the diagnostic category and the health impairment (as judged by the physicians) on our patients’ HrQoL. Overall, the HrQoL of the adolescent patients was comparable to the HrQoL of the norm group. Disorders of intellectual development, impaired psychosocial functioning, and a severe health impairment were associated with lower HrQoL scores.Conclusion: We recommend evaluating these factors in children and adolescents with IMDs to identify patients at risk for impaired HrQoL. What is Known:• Studies on HrQoL in pediatric patients with IMDs mainly focused on subgroups with specific diagnoses and found normal HrQoL in some of those subgroups.• In healthy children and adolescents as well as in pediatric patients with various chronic diseases, associations between psychosocial factors and HrQoL are well known. What is New:• Impaired psychosocial functioning, disorders of intellectual development, and a significant disease and/or treatment burden are risk factors for impaired HrQoL in pediatric patients with IMDs.• Evaluating these factors in children and adolescents with IMDs can help identify patients and families in need of enhanced psychological support.

scholarly journals Predictors of Long-Term Psychosocial Functioning and Health-Related Quality of Life in Children and Adolescents With Prior Concussions

2018 ◽  
Vol 24 (6) ◽  
pp. 540-548 ◽  
Author(s):  
Vickie Plourde ◽  
Keith Owen Yeates ◽  
Brian L. Brooks
Keyword(s):  
Quality Of Life ◽  
Children And Adolescents ◽  
Psychosocial Functioning ◽  
Attention Problems ◽  
Assessment System ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

AbstractObjectives: Individual differences in long-term psychosocial functioning after concussions in children and adolescents are poorly understood. The aim of the study was to investigate potential predictors of long-term psychosocial functioning and health-related quality of life in youth after prior concussion. Methods: Participants (N=75; mean age=14.3 years old; 52% girls) with one prior concussion (n=24), multiple prior concussions (n=24), or a prior orthopedic injury and no concussion (n=27) were seen on average 2.7 years after their most recent injury. Psychosocial functioning was assessed using the self-report versions of the Behavior Assessment System for Children (BASC-2; Anxiety and Depression scales only), the Strengths and Difficulties Questionnaire, and the Pediatric Quality of Life Inventory TM 4.0. Pre-existing conditions (attention problems, learning difficulties, mood concerns, anxiety concerns, and migraines) were reported by parents using a checklist and examined as predictors of long-term functioning. Other potential predictors included age at testing, sex, time between most recent injury and testing, and number of prior concussions. Results: The groups did not differ significantly on long-term psychosocial functioning. Moreover, only pre-existing mood concerns or attention problems significantly predicted psychosocial adjustment. Conclusions: Children’s functioning before a concussion is critical to understanding outcome. Pre-injury attention and mood concerns should be assessed in clinical settings to prevent and treat long-term psychosocial problems after concussion. (JINS, 2018, 24, 540–548)

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 Health-related quality of life in Chinese population with non-alcoholic fatty liver disease: a national multicenter survey

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Rui Huang ◽  
Jian-Gao Fan ◽  
Jun-Ping Shi ◽  
Yi-Min Mao ◽  
Bing-Yuan Wang ◽  
...  
Keyword(s):  
Risk Factors ◽  
Liver Disease ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Alcoholic Fatty Liver ◽  
Related Quality ◽  
Health Related ◽  
Independent Risk Factors ◽  
Alcoholic Fatty Liver Disease

Abstract Background Health Related Quality of Life (HRQL) is a multi-dimensional construct that can comprehensively evaluate the patient’s health status, including physical, emotional, mental and social well-being. In this study, we aimed to evaluate the impact of non-alcoholic fatty liver disease (NAFLD) on HRQL in a Chinese population. Methods In this national multicenter cross-sectional survey, patients with NAFLD were enrolled. Chronic Liver Disease Questionnaire (CLDQ)-NAFLD was used to qualify HRQL. Univariate and multivariate analysis were used to identify independent risk factors of HRQL. Results A total of 5181 patients with NAFLD from 90 centers were enrolled in this study (mean age, 43.8 ± 13.3 years; male, 65.8%). The overall CLDQ score was 5.66 ± 0.89. Multivariate logistic regression analysis showed that body mass index (BMI: HR, 1.642; 95% CI, 1.330–2.026), alanine transaminase (ALT: HR, 1.006; 95% CI, 1.001–1.011), triglyceride (HR, 1.184; 95% CI, 1.074–1.305), disease severity (HR, 3.203; 95% CI, 1.418–7.232) and cardiovascular disease (HR, 4.305; 95% CI, 2.074–8.939) were independent risk factors for overall CLDQ score. In the logistic analyses of individual domain, BMI and triglyceride were independent risk factors of all domains. ALT, disease severity, diabetes, depression and cardiovascular disease were influencing factors for the CLDQ score of several domains. Conclusions This national multicenter cross-sectional survey in China indicated that the HRQL in patients with NAFLD was impaired. HRQL was found to be significantly associated with sociodemographic and clinical factors. Attention should be paid to the optimally managing care of patients with NAFLD to improve their HRQL.

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