Health-Related Quality of Life of Children and Adolescents With Type 1 or Type 2 Diabetes Mellitus (original) (raw)

Health-related quality of life of children and adolescents with CKD stages 4–5 and their caregivers

Pediatric Nephrology, 2014

Your article is protected by copyright and all rights are held exclusively by IPNA. This eoffprint is for personal use only and shall not be self-archived in electronic repositories. If you wish to self-archive your article, please use the accepted manuscript version for posting on your own website. You may further deposit the accepted manuscript version in any repository, provided it is only made publicly available 12 months after official publication or later and provided acknowledgement is given to the original source of publication and a link is inserted to the published article on Springer's website. The link must be accompanied by the following text: "The final publication is available at link.springer.com". Abstract Background Renal replacement therapies may affect the quality of life of patients and their primary caregivers (PC). Methods This study describes the perception of health-related quality of life (HRQoL) of children/adolescents with CKD stages 4-5, as well as of their PC (n=64), in comparison to healthy peers and their PC (n=129), respectively, based on the Peds QL™ 4.0 and Short Form-36 (SF-36) questionnaires and selected biomarkers.

Quality of life in Chronic Kidney Disease (CKD): A cross-sectional analysis in the Renal Research Institute-CKD study

American Journal of Kidney Diseases, 2005

Background: Health-related quality of life (QOL) is an important measure of how disease affects patients' lives. Dialysis patients have decreased QOL relative to healthy controls. Little is known about QOL in patients with chronic kidney disease (CKD) before renal replacement therapy. Methods: The Medical Outcomes Study Short Form-36 (SF-36), a standard QOL instrument, was used to evaluate 634 patients (mean glomerular filtration rate [GFR], 23.6 ؎ 9.6 mL/min/1.73 m 2 [0.39 ؎ 0.16 mL/s/1.73 m 2 ]) enrolled in a 4-center, prospective, observational study of CKD. SF-36 scores in these patients were compared with those in a prevalent cohort of hemodialysis (HD) patients and healthy controls (both from historical data). QOL data also were analyzed for correlations with GFR and albumin and hemoglobin levels in multivariable analyses. Results: Patients with CKD had higher SF-36 scores than a large cohort of HD patients (P < 0.0001 for 8 scales and 2 summary scales), but lower scores than those reported for the US adult population (P < 0.0001 for 7 of 8 scales and 1 of 2 summary scales). Patients with CKD stage 4 had lower QOL scores than patients with CKD stage 5, although differences were not significant. Hemoglobin level was associated positively with higher mental and physical QOL scores (P < 0.05) in all individual and component scales except Pain. Conclusion: SF-36 scores were higher in this CKD cohort compared with HD patients, but lower than in healthy controls. GFR was not significantly associated with QOL. Hemoglobin level predicted both physical and mental domains of the SF-36. Longitudinal studies are needed to define at-risk periods for decreases in QOL during progression of CKD.

Improving CKD-Specific Patient-Reported Measures of Health-Related Quality of Life

Journal of the American Society of Nephrology, 2019

Significance Statement Monitoring patient-reported outcomes to capture CKD’s effects on health-related quality of life (QOL) is important for population health and individual care. Current measures such as the Kidney Disease Quality of Life-36 (KDQOL-36) do not incorporate some proven measurement advances, and measures incorporating such advances are rarely compared with current methods. The authors evaluated the validity of a new approach to CKD-specific QOL measurement that comprehensively represents CKD-specific QOL, yields a single summary QOL impact score, and generally requires only 1 minute. Across CKD stages 3–5, dialysis, and transplant patients, results favored the new approach over the KDQOL-36 in comparisons of validity, including responsiveness (sensitivity to clinical change), across multiple clinical tests. Computerized adaptive test versions of the new approach were more efficient than static versions. Background Patient-reported outcome measures that are more practi...

Quality of life in children with chronic kidney disease—patient and caregiver assessments

Nephrology Dialysis Transplantation, 2006

Background. Children with chronic kidney disease (CKD) require strict dietary and lifestyle modifications, however, there is little information on their quality of life. Our objective was to compare healthrelated quality of life (HRQOL) in children with different stages of CKD to each other and to a control population. Methods. A cross-sectional assessment of HRQOL for physical, emotional, social and school domains was performed using the PedsQL TM Generic Core Scale. Data were collected from 20 children with chronic renal insufficiency (CRI; creatinine >200 mmol/l), 12 on maintenance haemodialysis or peritoneal dialysis (DIAL) and 27 with renal transplants (TX). Caregiver proxy reports were obtained for CRI (n ¼ 20), DIAL (n ¼ 17) and TX (n ¼ 21). Between-group differences were assessed with ANOVA for the CKD groups; t-tests compared our CKD samples with controls. Results. Children with CKD scored lower than the controls in all subscales, however, only TX compared with controls was significant (P<0.02). DIAL children scored equal to or higher than the TX group in all domains. Analysis of covariance with number of medications as covariate yielded a significant result for the physical subscale (F ¼ 8.95, df ¼ 3, 53, P ¼ 0.004). Proxy caregiver scores were lower than patient scores in all four domains. Conclusions. Children with CKD rate their HRQOL lower than the healthy controls do. It may be reassuring to caregivers that children on dialysis rate their HRQOL higher than would be expected. However, it is of some concern that caregiver perception of improved HRQOL following transplantation was not shared by their children in the present study.

Quality of Life of Young Adults and Adolescents with Chronic Kidney Disease

The Journal of Pediatrics, 2013

Objective To elicit utility-based quality of life (QOL) in adolescents and young adults with chronic kidney disease (CKD). Study design A cross-sectional study was conducted among patients aged 12-25 years with CKD stage 3-5 and 5D from 6 centers in Australia. QOL was measured using a visual analogue scale, and 3 utility-based QOL measures: Health Utilities Index Mark 2 and 3 (HUI2/3), Kidney Disease Quality of Life, incorporating the short form (SF)-12 transformed to SF-6D, and time trade-off (TTO). Multiple linear regression was used to define predictors for TTO QOL weights, SF-6D, and visual analogue scale scores. Results On a utility scale, with extremes of 0 (death) to 1 (full health), the 27 participants had a mean TTO QOL weight of 0.59 (SD = 0.40), HUI2 of 0.73 (SD = 0.28), HUI3 of 0.74 (SD = 0.26), and SF-6D of 0.70 (SD = 0.14). QOL weights were consistently low across the 4 utility-based instruments with widest variability in TTO responses. Mean QOL weights were higher among predialysis participants. The HUI2 indicated variability in the domain of emotion. From the Kidney Disease Quality of Life measures, decrements were observed in all QOL domains though dialysis patients reported a significantly higher burden attributed to kidney disease. Conclusions Adolescent and young adults with CKD report low QOL values. Their utility-based QOL scores imply they are willing to trade considerable life expectancy for perfect health. Holistic care to improve QOL and minimize disease burden are imperative for optimizing health outcomes in young people with CKD, particularly those on dialysis.

QUALITY OF LIFE IN CHRONIC KIDNEY DISEASE

Journal of Renal Care, 2006

Background -Quality of life (QOL) is suboptimal in end-stage renal disease. However, studies indicate that QOL is already impaired prior to the initiation of renal replacement therapy, implying that the initial decline originates in the chronic kidney disease (CKD) phase of the renal disease trajectory. Given the significance of QOL as a clinical outcome, there is a paucity of QOL research in CKD. Aims -To measure QOL at three distinct phases (based on creatinine clearance -Ccr) of the disease trajectory in CKD: normal renal function (NRF) with underlying renal disease, moderate CKD, and advanced CKD (Ccr 75, 40-60, and 30 ml/minute, respectively), and to establish if QOL is different between these groups. Methods -Data was collected from 25 patients from each of the Ccr bands (N=75). We measured self-reported QOL (Schedule for the Evaluation of Individual Quality of Life -SEIQOL), uraemic symptoms (Leicester Uraemic Symptom Scale -LUSS), and laboratory variables. Results -SEIQOL was significantly lower (p<0.001), and symptom number, frequency, and intrusiveness significantly higher (all p<0.001) in the advanced CKD group when compared to the NRF group. Although SEIQOL and symptom intrusiveness did not differ between the advanced and moderate CKD groups, SEIQOL was significantly lower (p<0.05) and symptom intrusiveness significantly higher (p<0.05) in the moderate CKD group when compared to the NRF group. Conclusion -QOL is already impaired in moderate CKD. The significant difference in QOL and symptom intrusiveness between the moderate CKD and NRF groups may denote a causal relationship between symptom intrusiveness and QOL early in CKD.

Dimensions of quality of life in the different stages of chronic kidney disease patients – A cross-sectional study

Clinical Epidemiology and Global Health, 2020

Background: Chronic Kidney Disease (CKD) is an emerging disease that causes morbidity, mortality and affects patient's quality of life (QoL). Objectives: To assess and compare dimensions of QoL in the different stages of CKD patients and also to identify the factors affecting QoL. Data and methods: A cross-sectional study was carried out for a period of 8 months in the Dept. of Nephrology. The inclusion criterion of the study is patients above 18 years age diagnosed with CKD stage 3-5 and patients undergoing maintenance haemodialysis. The patients were assessed for QoL using European-QoL-5-dimensional (EQ-QoL-5D) and visual analog scale (VAS) questionnaires. Results: Out of 210 patients, most of the patients were in the age group 51-65 years (43.33%) and the mean age of study population was 52 ± 16.04. In the present study, most of the patients were males (79.04%). The most common comorbidities were hypertension (90%) and 51% of diabetes mellitus (DM). The mean EQ-5D index scores of the CKD stage 3, 4, 5 and 5D patients were 0.77 ± 0.09, 0.67 ± 0.10, 0.62 ± 0.12 and 0.50 ± 0.15 and the mean VAS scores for these stages were 74.10 ± 7.68, 66.52 ± 10.90, 66.45 ± 8.80 and 55.04 ± 12.82 respectively. Conclusion: The most commonly affected domains were usual activities (79%), pain (76.20%) and anxiety/depression (71.91%). Factors such as age (> 65 yrs), BMI (Underweight and Obese), educational background (Illiterate), Unemployment, domiciliary status (Rural), number of medications (> 11) had significant association with EQ-5D index and VAS scores (p-0.000). It was found that QoL was impaired in stage 5D compared to other stages (p-0.000).

Applying KDQOL TM-36 Form to CKD Patients

2018

Treatments of Chronic Kidney Diseases (CKD) are analyzed in Bingöl city and at regional level. CKD is a major problem in Bingöl and Turkey. Increasing numbers of CKDs cause dissatisfaction and extra load on healthcare staffs and families in Bingöl city. Two main hospitals in Bingöl giving dialysis services are controlled and responsible staffs were interview. Later, two surveys with 96 and 78 respondents at different times in 2015 were carried out of 160 patients. Having a high health-related quality of life (HRQoL) is an important performance indicator for dialysis centers at the treatment of End Stage Renal Disease (ESRD). KDQOLTM-36 Scoring Program (v 2.0) and SPSS 20 versions are used to find the life quality of patients and compare respondents according to education, gender and hospital by One-way ANOVA test. Just Hemodiyalisis (HD) treatment is suggested at Bingöl city center and life qualities of private hospital patients were found better than government hospital when both s...

Quality of Life in Children at Different Stages of Chronic Kidney Disease in a Developing Country

Research Square (Research Square), 2024

Background: Children with chronic kidney disease (CKD) require comprehensive assessments, including medical and quality of life (QoL) evaluations. Few studies have been conducted in developing countries. Methods: This cross-sectional study included 2-18-year-old patients who were categorized into 4 groups: the CKD stage 2-3, stage 4-5, stage 5 with dialysis (D), and kidney transplantation (KT) groups. QoL was measured using the Pediatric Quality of Life Inventory TM (PedsQL TM) version 4.0; relationships between different factors and QoL were determined using multivariable linear regression analysis. Results: Eighty-seven patients (mean age: 13.3 (4.1) years) were included. The self-reported total scores were 77.5 (12.5), 78.9 (11.2), 77.4 (16.2), and 76.1 (10.9) in the stage 2-3, stage 4-5, stage 5D and KT groups, respectively. Parent-reported scores showed a weak-to-moderate correlation with self-reported scores (r=0.12-0.42), with total scores of 71.8 (12.7), 69.5 (14.9), 63.4 (14.8), and 70.8 (18.1) in the stage 2-3, 4-5, 5D and KT groups, respectively. Multivariable linear regression revealed that the parent-reported score in the stage 5D group was 15.92 points lower than that in the early CKD stage group (p=0.02); the score in the low maternal education group was 10.13 points lower than that in the high maternal education group (p=0.04). Conclusions: Parent-reported scores showed weak-to-moderate correlation with self-reported scores. CKD stage 5D patients and patients with low maternal education had lower QoL. Regular QoL assessment is recommended for advanced CKD patients and patients with socioeconomic vulnerabilities.

Quality of Life Assessment in Patients of Stage V Chronic Kidney Disease

Saudi journal of biomedical research, 2022

Introduction: Despite ongoing advances in the treatment of chronic kidney disease (CKD), the mortality rate, and level of health-related quality of life (HRQOL) for the CKD population remain significantly higher than for the general population. The importance of measuring end-stage renal failure (ESRF) patients' quality of life in relation to healthcare lies in not only providing absolute survival but also the quality of that survival. Due to cost constraints, the profile of chronic kidney disease patients and their treatment in Bangladesh is almost identical to that of India, with patients frequently requesting a reduction in the frequency of dialysis sessions, the use of less expensive dialyzers, dialyzer reuse, and the absence of erythropoietin therapy. Hence, augmenting the QOL may perhaps be a challenge and an observable fact of specific interest for renal healthcare teams. This study is intended to assess KDQOL among patients receiving hemodialysis for 8 hours, and 12 hours per week, patients receiving CAPD, and patients of CKD stage V who decline any form of renal replacement therapy, and remained on conservative treatment. The aim of the study was to assess the quality of life among patients of CKD Stage V. Methods: This cross-sectional study was carried out at the Department of Nephrology, Dhaka Medical College Hospital and BIRDEM general hospital. The patients who received consultation at the Outdoor Department of selected hospital from November 2010 to October 2011. The study assess the of Quality of Life, and Cost Effectiveness on different modalities of treatment among the patients of chronic kidney disease stage V, and also to find out the best modality of dialysis. A total number of 134 consecutive patients were enrolled in this study, out of which 42 patients who were advised to commence renal replacement therapy, and after counseling opted to remain in conservative treatment were considered as GROUP I, 39 patients who received hemodialysis 8 hours per week were considered as GROUP II, 30 patients who received hemodialysis 12 hours per week in one or more centers were considered as GROUP III, and 23 patients who received Continuous Peritoneal Dialysis at least 3 exchanges per day were considered as GROUP IV. Result: Mean age was almost similar in all four groups, and most of the patients were 5th decade, and above. Male was predominant in all four groups, and the male-female ratio was almost 2:1 in the whole study patients. Diabetic nephropathy and glomerulonephritis were more common etiology of CKD in all four groups. Monthly expenditure was significantly (p<0.05) higher in group IV, followed by group III, group II, and group I in all three follow-ups, however, monthly expenditure was almost similar between group III, and group IV (p>0.05) but the mean monthly expenditure was higher in group IV patients. Mean serum Creatinine was lowest in group IV followed by group III, group II, and group I in descending order. Serum albumin was low in all the groups but almost parallel in all follow-ups in group II, groups I, and group IV, whereas the lowest was in group II followed by group I and group IV, but declined in group III during the 2nd, and 3rd follow-up from 1st follow-up. Hemoglobin level consistently remained within the target range in group IV in all follow-ups but below the target range in group I followed by group II, and group III in ascending order. The physical component score increased significantly in Group III, and Group IV at consecutive follow-ups, however, it was higher in Group IV. Similarly, the mental component score was recorded highest in Group IV, followed by group III, group II, and group I. Regarding mortality, it was observed that more than half of the patients were expired in group I, one-third in group II, and 16.7% in group III, and only 8.7% in group IV during final follow-up. Conclusion: Patients receiving continuous ambulatory peritoneal dialysis achieved the best clinical parameters in terms of control of blood pressure, and volume overload. On the other hand, parameters were a lot away from the desired target in patients receiving hemodialysis for 8 hours per week, and they did not have significantly better parameters in comparison to those who were only on conservative treatment. The scenario of serum albumin, and serum creatinine, though complicated by the existence of malnutrition, were in best approximation to the desired level in these