Objective:The study objective was to translate,validate,and test the reliability of the original kidney disease and quality of life-36(KDQOL-36^(TM))instruments in Odia.Materials and Methods:A cross-sectional design w...Objective:The study objective was to translate,validate,and test the reliability of the original kidney disease and quality of life-36(KDQOL-36^(TM))instruments in Odia.Materials and Methods:A cross-sectional design with a purposive sampling technique was used.According to RAND Corporation guidelines,initially,the items of the KDQOL-36^(TM)questionnaires were translated into Odia by two independent,bilingual,professional translators,and then back-translated to English,followed by tryout and field testing.The experts validated the KDQOL-36^(TM)instrument review committee for review related to kidney health conditions.The tool was implemented among 180 patients undergoing“maintenance”hemodialysis.The following tests evaluated reliability and validity:test-retest reliability with Cronbach’s alpha correlation(stability),(reliability)internal consistency,and contents validity index.Results:The Cronbach’s alpha value and intraclass correlation coefficient(ICC)score of all five domains,namely“physical component summary,mental component summary(MCS),the burden of kidney disease,symptoms and problems of kidney disease,and effects of kidney disease”of both KDQOL-36^(TM)English and Odia(KDQOL-36-E^(TM)and KDQOL-36-O^(TM))version,recommended excellent homogeneity.A high positive correlation(r=0.998)was found between the Odia version of KDQOL-36^(TM)and the English version KDQOL-36^(TM)questionnaire.The ICC score ranges from 0.889 to 0.997 at a 95%confidence interval for test-retest reliability,and Cronbach’s alpha was 0.832.Conclusion:This study explores the Odia version of KDQOL-36^(TM)psychometric properties,depicted at an acceptable level of internal consistency.The KDQOL-36-O^(TM)instrument is a valid and reliable tool for assessing the kidney disease-related quality of life in Odia-speaking hemodialysis patients.展开更多
Introduction: The importance of determining health related quality of life in Chronic Kidney Disease patients on dialysis is well established. However, research was limited in establishing the health related quality o...Introduction: The importance of determining health related quality of life in Chronic Kidney Disease patients on dialysis is well established. However, research was limited in establishing the health related quality of life for chronic kidney disease patients on dialysis at University Teaching Hospital-Adult Hospital. Further the effects of haemoglobin levels and adequacy of dialysis on their health related quality of life were unknown. Therefore, the study sought to answer a research question: what is the health-related Quality of Life for Chronic Kidney Disease patients on dialysis at University Teaching Hospital? Method: The study was an analytical cross-sectional study that used a census sampling method. The study participants comprised of 104 patients who sought dialysis services (2020-2021) from the University Teaching Hospital-Renal Unit in Lusaka, Zambia. A structured Kidney Disease Quality of Life Short form (KDQOL-SF 36) was used to collect data. The Data was analyzed using the Statistics and Data software version 13, Chi-square tests, and logistic regression analysis was employed to analyse the data. A confidence interval of 95% was set with a significant level of 0.05. Results: The study included 104 Chronic Kidney Disease patients from the Dialysis Unit at University Teaching Hospital in Lusaka, Zambia. Two-thirds (68%) of the patients had a good overall health-related quality of life with the biological wellbeing having exceptionally high scores. The male gender (66.7%), unemployment (69.4%), and low haemoglobin levels (77.8%) were identified as factors associated with poor health-related quality of life. Conclusion: The health related quality of life of Chronic Kidney Disease patients at University Teaching Hospital was good. Low haemoglobin levels, age, male sex and unemployment were found to be factors associated with poor health related quality of life. Integration of health-related quality of life assessment for Chronic Kidney disease patients on dialysis in routine care is paramount. Particular focus should be on patients presenting with low haemoglobin levels, age, male sex and unemployment for timely interventions.展开更多
Quality of life research is an emerging and rapidly developing health measurement technology.Quality of life assessment is performed using scales.Accurate quality of life assessment provides comprehensive information ...Quality of life research is an emerging and rapidly developing health measurement technology.Quality of life assessment is performed using scales.Accurate quality of life assessment provides comprehensive information of patient which allows clinicians to put emphasis on overall quality of life(Total QOL)of patient.Quality of life scales have been applied for analysis of diseases such as leukemia and immune thrombocytopenia.This article reviews the use of commonly used quality of life scales for hematological diseases.展开更多
<strong>Background:</strong> Chronic kidney disease could impair the quality of life of patients regardless of the stage of the disease. So far, there is no data on this subject in the Congolese population...<strong>Background:</strong> Chronic kidney disease could impair the quality of life of patients regardless of the stage of the disease. So far, there is no data on this subject in the Congolese population. The objective of this study was to assess the quality of life of patients with chronic kidney disease in Congo. <strong>Patients and methods:</strong> We conducted a cross-sectional, descriptive study of 91 patients followed in the department of nephrology and in dialysis centers in Brazzaville, Pointe-Noire and Oyo from July 1<sup>st</sup> to November 30<sup>th</sup>, 2020, <i>i.e. </i> five months. We used the Kidney disease quality of life short form health survey score (KDQOL-SF 36) to assess the quality of life of patients and a questionnaire was used to determine socio-demographic, clinical and therapeutic features. Data analysis was done on SPSS 2.2 software. <strong>Result:</strong> The average age was 51.9 ± 15 years. The sex ratio M/F was 2.03. The average time of patient follow-up was 15 months;90% of them had hypertension. The overall average score of specific dimensions was 52 ± 18;disease burden was the dimension most affected;that of the generic dimensions was 34 ± 25 with the limitation of physical activity dimension being the most affected. No patient had received psychological follow-up. <strong>Conclusion:</strong> This study indicates the value of a systematic assessment of the quality of life of patients with chronic kidney disease as well as the need for assistance for these patients in different areas of their life.展开更多
AIM:To explore the relationship between ocular and systemic conditions and the impact of ocular complications on the quality of life(QOL)in patients after allogeneic hematopoietic stem cell transplantation(ALLO-HSCT)....AIM:To explore the relationship between ocular and systemic conditions and the impact of ocular complications on the quality of life(QOL)in patients after allogeneic hematopoietic stem cell transplantation(ALLO-HSCT).METHODS:Forty-four patients with severe hematopoietic disease were enrolled after ALLO-HSCT at our center from July 2018 to October 2020.They completed two questionnaires:the Ocular Surface Disease Index(OSDI)and the quality-of-life scale for Chinese patients with visual impairment(SQOL-DV1).Ocular conditions and systemic conditions were also assessed.RESULTS:Eye damage was correlated with total bilirubin(P=0.005),and gamma-glutamyl transferase(GGT)(P=0.021).There was no significant correlation between the overall QOL score and OSDI(P=0.8226)or SQOLDV1(P=0.9526)scores.The OSDI and the overall QOL score were not correlated with ocular conditions,including best-corrected visual acuity(BCVA),intraocular pressure,Schirmer tear test II,sodium fluorescein staining,tear film breakup time,and tear meniscus height.SQOLDV1 was correlated with BCVA(P=0.0007),sodium fluorescein staining(P=0.007),and tear film breakup time(P=0.0146).CONCLUSION:In some patients,early ocular symptoms are not evident after ALLO-HSCT,while ocular surface complications can be observed after a comprehensive ophthalmological examination.Especially for those with elevated total bilirubin or GGT,regular ophthalmic follow-up visits are essential to diagnose and treat ocular graft versus host disease(o GVHD),especially for patients with elevated total bilirubin or GGT.展开更多
Parkinson's disease has a negative impact on health-related quality of life in Parkinson's disease patients. Depression, cognitive impairment, coping strategies, dyskinesia, gait disorders and complications of dopam...Parkinson's disease has a negative impact on health-related quality of life in Parkinson's disease patients. Depression, cognitive impairment, coping strategies, dyskinesia, gait disorders and complications of dopaminergic drugs are the variables that most affect health-related quality of life. The ecological model of human development focuses attention on both individual and social environmental factors as targets for health interventions. From this perspective, the aim of this cross-sectional survey was to evaluate the influence of gender, family size and perceived autonomy on health-related quality of life in Parkinson's disease patients in nOrtheastern Sicily, Italy. Ninety Parkinson's disease patients, attending the Movement Disorders Clinic at IRCCS Centro Neurolesi "Bonino-Pulejo" (Messina), were consecutively enrolled. The Unified Parkinson Disease Rating Scale motor subscale (UPDRS-Ⅲ) scores, the Parkinson Disease Questionnaire-39 Item scores (as a disease-specific measure of health-related quality of life), scores on the Short Form (36) Health Survey Questionnaire (as a generic measure), and answers to a brief checklist were recorded. A total of 85 Parkinson's disease patients (49% males and 51% females; mean age 70.8 ± 8.6 years mean UPDRS-Ⅲ 24.15 ± 6.55; mean disease duration 5.52 ± 4.65 years) completed the booklet of questionnaires. In the multivariate regression analysis, we included clinical and social variables as independent predictors of health-related quality of life. Our results suggest a potential compounding effect of ecological intrapersonal and interpersonal levels on health-related quality of life outcomes. Gender, self-evaluated autonomy and family size significantly impacted health-related quality of life. If quality of life is used as an indicator of treatment outcomes, an ecological perspective of the case history will be important to disclose relevant prognostic information and trigger personalized health care interventions.展开更多
Objective:This study aimed to examine the effects of mindfulness meditation on trait mindfulness,perceived stress,emotion regulation,and quality of life in end-stage renal disease patients undergoing hemodialysis.Meth...Objective:This study aimed to examine the effects of mindfulness meditation on trait mindfulness,perceived stress,emotion regulation,and quality of life in end-stage renal disease patients undergoing hemodialysis.Methods:An experimental study with repeated measures design was conducted among a sample of 74 end-stage renal disease patients undergoing hemodialysis between January and May 2021 in the dialysis center at Jahra hospital,Kuwait.The patients were randomly assigned to the experimental(n?37)and control groups(n?37).The experimental group participated in 30-min mindfulness meditation sessions(three sessions a week for five weeks)held during their hemodialysis sessions;the participants in the control group were instructed to sit with their eyes closed and relaxed for 30 min three times a week for five weeks during hemodialysis sessions.The dependent variables of both groups were measured at baseline(T0),middle of intervention(T1),and end of intervention(T2)using the Mindful Attention Awareness Scale(MAAS),Perceived Stress Scale(PSS),Emotion Regulation Questionnaire(ERQ),and Kidney Disease Quality of Life(KDQOL-36)questionnaire.The study was registered in the ClinicalTrial.gov(Identifier:NCT05176730).Results:The repeated measures ANOVA(within-subject)results for the experimental group showed that mindfulness meditation had significantly decreased perceived stress by the end of the intervention.Also,mindfulness meditation improved mindfulness,emotion regulation,and kidney disease-related quality of life in the experimental group,and this improvement occurred significantly at both T1 and T2.The repeated measures ANOVA(within and between-subject)results showed that the experimental group,as compared to the control group,had lower perceived stress,higher trait mindfulness,higher emotional regulation,and higher kidney disease-related quality of life over time.Conclusions:The positive findings of this study offer health policy-makers and hospital administrators a promising tool to use with patients undergoing hemodialysis as a way to manage stress and improve quality of life.However,this study should be replicated in multiple settings with follow-up assessments.展开更多
Introduction: The objectives of this work were to assess haemodialytic patients’ quality of life (QoL) and to identify factors affecting this QoL. Patients and Methods: It was a three (03) month monocentric and trans...Introduction: The objectives of this work were to assess haemodialytic patients’ quality of life (QoL) and to identify factors affecting this QoL. Patients and Methods: It was a three (03) month monocentric and transversal study (from October 24, 2011 to January 27, 2012) conducted in the haemodialysis unit at Hubert Koutoukou Maga Teaching Hospital (CNHU-HKM) in Cotonou. Patients included were residents of Benin, aged 18 years and above, chronic haemodialysis in this unit for over 3 months, and willfully gave their consent. Quality of life was evaluated using questionnaire on Kidney Disease Quality of Life Short-Form French version 1.2 (KDQoL-SF 36). Epidemiological data, nephropathy etiologies and purification parametres were recorded in patients files. Data statistical analysis was performed using SPSS software 11.5. Results: In total 131 patients were involved in the study. The average age was 50.27 ± 12.17 years with a sex ratio of 1.69. Nephroangiosclerosis was the 1st cause. Most patients 128 (97.71 %) received two haemodialysis sessions on weekly basis. The Average Overall Score (AOS) based respectively on SF 36 and KDQoL was 48.55 and 58.55. The average of both SF 36 and KDQoL AOS was 53.55. Factors affecting hemodialytic patients quality of life were vitality, limitations related to mental health and physical condition, burden of kidney disease, effect of the disease on daily life and occupational status. The study revealed that: Patients education level was correlated with vitality展开更多
,b>Objective: The aim of this study was to determine the frequency of fibromyalgia (FM) in patients on Peritoneal Dialysis (PD) and to investigate its impact on the quality of life of that population. Methods: A hu...,b>Objective: The aim of this study was to determine the frequency of fibromyalgia (FM) in patients on Peritoneal Dialysis (PD) and to investigate its impact on the quality of life of that population. Methods: A hundred and twenty four patients with end stage renal disease who had undergone PD, and a control group of 54 age and sex-matched healthy volunteers were included to the study. Demographic characteristics including age, sex, disease and dialysis duration were recorded. Fibromyalgia Impact Questionnaire (FIQ) and Nottingham Health Profile (NHP) were also measured. Results: The mean age of the patients (68 female, 56 male) and control subjects (36 female, 18 male) were 43.5 ± 13.4 and 41.2 ± 9.2 years respectively. The prevalence of FM in the PD patients and controls were determined as 9.7% (12 patients) and 11.1% (6 controls) respectively and were found to be similar (p = 0.983). The mean score of sub- groups of NHP except pain and emotion subgroups, were significantly higher in PD patients than in the control group. The mean FIQ levels, the scores of all the subgroups of NHP except the social subgroup were significantly higher in PD patients with FM than in those without FM. Conclusion: In conclusion although the prevalence of FM appears to be similar in PD patients and control subjects, the functional disability is common and quality of life is worse in PD patients with FM than in patients without FM. Detection and treatment of FM may lead to improvement in the quality of life of PD patients with this syndrome.展开更多
BACKGROUND With advancements in the treatment of chronic liver disease(CLD),including liver transplantation(LT),quality of life and satisfaction after LT have become an important issue for pediatric patients and their...BACKGROUND With advancements in the treatment of chronic liver disease(CLD),including liver transplantation(LT),quality of life and satisfaction after LT have become an important issue for pediatric patients and their parents.More evidence-based information is needed to describe and assess the impact of pediatric CLD on parents and the satisfaction of parents with treatment to better understand their needs.AIM To assess the satisfaction of parents of pediatric LT patients and that of parents of pediatric CLD patients METHODS During this survey,data were collected from parents of pediatric patients who underwent LT between January 2010 and April 2017(LT group;n=91)and parents of pediatric patients with chronic liver disease(CLD group;n=94).Group comparisons were made based on the pediatric health-related quality of life(PedsQL)health care parent satisfaction scale,impact on family scale(IFS)and demographic characteristics.The PedsQL was administered to parents during a phone interview and the results were used to assess the health carerelated satisfaction of parents.The IFS was used to assess the impact of the child’s CLD status on the family.Demographic variables such as education level(elementary vs middle vs high vs university),monthly income(low vs middle vs high),and place of residence(village vs town vs city)were compared between CLD and LT parent groups.Finally,PedsQL and IFS results were also analyzed according to demographic variables.RESULTS A total of 185 parents aged 19 to 65 years were included.There were statistically significant differences between the LT and CLD groups in terms of career(P<0.001),monthly income(P=0.016),and education level(P=0.041).According to the PedsQL results,family inclusion,communication,technical skills,emotional needs,and overall satisfaction were significantly different between the groups;the LT group had consistently higher scores(P<0.001).Additionally,scores for the IFS parameters of financial impact,familial-social impact,personal strain,and total impact were consistently higher for the LT group(P<0.001).There were statistically significant relationships between education level,monthly income,and place of residence according to the IFS results but not the PedsQL results.There were inverse relationships between the difficulties that parents experience because of their child’s health and education levels,monthly income,and place of residence.However,no relationship was found between education level,monthly income,or place of residence and satisfaction with health care services provided in the hospital according to the PedsQL results.CONCLUSION Parents of children who underwent LT were very satisfied with the health care services provided to their children.However,they had more difficulties than parents of children with CLD.展开更多
Chronic kidney disease(CKD) is encountered in millions of people worldwide,with continuously rising incidence during the past decades,affecting their quality of life despite the increase of life expectancy in these pa...Chronic kidney disease(CKD) is encountered in millions of people worldwide,with continuously rising incidence during the past decades,affecting their quality of life despite the increase of life expectancy in these patients.Disturbance of sexual function is common among men with CKD,as both conditions share common pathophysiological causes,such as vascular or hormonal abnormalities and are both affected by similar coexisting comorbid conditions such as cardiovascular disease,hypertension and diabetes mellitus.The estimated prevalence of erectile dysfunction reaches 70% in end stage renal disease patients.Nevertheless,sexual dysfunction remains under-recognized and under-treated in a high proportion of these patients,a fact which should raise awareness among clinicians.A multifactorial approach in management and treatment is undoubtedly required in order to improve patients' quality of life and cardiovascular outcomes.展开更多
目的 翻译外周动脉疾病生活质量量表(vascular quality of life questionnaire, VascuQOL)再施以优化,得到和我国文化背景与语言习惯相契合的汉化版VascuQOL。方法 通过顺译、回译、修改条目、专家咨询、文化调适及预调查,得到汉化版Vas...目的 翻译外周动脉疾病生活质量量表(vascular quality of life questionnaire, VascuQOL)再施以优化,得到和我国文化背景与语言习惯相契合的汉化版VascuQOL。方法 通过顺译、回译、修改条目、专家咨询、文化调适及预调查,得到汉化版VascuQOL;以重庆医科大学附属第一医院血管外科302名下肢动脉硬化闭塞症患者为研究对象,对量表的信效度展开检验。结果 汉化版VascuQOL各条目临界比值为3.086~17.605;量表各条目评分和总分之间的关联系数为0.237~0.695(P<0.01);量表各条目内容效度为0.861~1.000,总量表内容效度为0.986;探索性因子分析(EFA)找到特征根在1以上的5项公因子,累计方差贡献率是67.39%,Bartlett’s球形检验中χ2值为3289.061(P<0.01);采用欧洲五维健康量表EQ-5D-5L作为校标,Pearson相关分析为0.697;内部一致性信度Cronbach’sɑ系数为0.871,各维度Cronbach’sɑ系数分别为0.893、0.859、0.759、0.569、0.727(P<0.01);重测信度为0.996。结论 汉化版VascuQOL具有良好的信度和效度,可用于我国下肢动脉硬化闭塞症患者的生活质量测评。展开更多
目的:翻译并修订阿尔茨海默病相关生活质量量表(Alzheimer’s disease-related quality of life scale,ADRQL),并对其进行信度和效度评价。方法:采用Brislin跨文化研究翻译模式对英文版ADRQL量表进行翻译;通过专家小组讨论和预调查对翻...目的:翻译并修订阿尔茨海默病相关生活质量量表(Alzheimer’s disease-related quality of life scale,ADRQL),并对其进行信度和效度评价。方法:采用Brislin跨文化研究翻译模式对英文版ADRQL量表进行翻译;通过专家小组讨论和预调查对翻译量表进行文化调适;采用便利抽样方法,对2022年12月至2023年6月在上海瑞金医院和多家社区卫生中心就诊的阿尔茨海默病及其他类型痴呆患者照护者221人进行调查。采用Cronbach’sα系数测量结果相关性评价量表的信度;采用专家评定法评价量表的内容效度,运用探索性因子分析评价量表的结构效度。结果:中文版ADRQL量表Bartlett’s球形检验χ2=2466.634,P<0.001,KMO为0.727,探索性因子分析提取8个公因子,累计方差贡献率为47.37%;量表水平的内容效度指数为0.99,条目水平内容效度指数为0.83~1.00;总量表的Cronbach’sα系数为0.809,分半信度系数0.860。结论:中文版ADRQL具有较好的信效度,可用于评估我国阿尔茨海默病及其他类型痴呆患者的相关生活质量评估。展开更多
The risk of peritonitis complications in continuous ambulatory peritoneal dialysis(CAPD)can be prevented or reduced by providing proper education and continuous monitoring.Telemedicine and telemonitoring are methods t...The risk of peritonitis complications in continuous ambulatory peritoneal dialysis(CAPD)can be prevented or reduced by providing proper education and continuous monitoring.Telemedicine and telemonitoring are methods that enable remote monitoring and patient care.This study aimed to determine the success and factors affecting telemonitoring in CAPD patient care.This study is a scoping review(ScR)using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses-ScR method.Article searches were carried out on ProQuest,PubMed,and ScienceDirect with a time range of 2018-2023.Data extraction was performed regarding knowledge level,quality of life,clinical outcomes(peritonitis),and risk of hospitalization.Of the 12 articles and studies included,6 articles were related to the effect of telemonitoring on CAPD patient outcomes,and 6 articles were associated with the effect of education on CAPD patient outcomes.Education provided to patients can improve patient understanding of therapeutic modalities for renal disorders,reduce the potential for peritonitis and dialysis complications,and improve the quality of life of patients with CAPD.CAPD patients who received telemonitoring had a better quality of life,good clinical outcomes,and a lower risk of hospitalization than those who did not receive telemonitoring and had fewer health-care visits.In summary,the implementation of telemonitoring and education in chronic kidney disease patients with CAPD modality therapy has been proven effective in improving quality of life and reducing dialysis-related risks.展开更多
AIM:To evaluate the efficacy of adding irsogladine maleate(IM) to proton-pump inhibitor(PPI) therapy in non-erosive reflux disease(NERD) treatment.METHODS:One hundred patients with NERD were recruited and randomized t...AIM:To evaluate the efficacy of adding irsogladine maleate(IM) to proton-pump inhibitor(PPI) therapy in non-erosive reflux disease(NERD) treatment.METHODS:One hundred patients with NERD were recruited and randomized to receive rabeprazole plus IM(group I) or rabeprazole plus placebo(group P).The efficacy of the treatment was assessed using the Frequency Scale for the Symptoms of Gastroesophageal Reflux Disease(FSSG) and the short form(SF)-36 quality of life questionnaires after four weeks of treatment.We also assessed whether patients with NERD with minimal changes(grade M) had different responses to the therapies compared with patients who did not have minimal changes(grade N).RESULTS:Group I and group P showed significant improvements in their FSSG scores after the treatment(from 17.9 ± 7.9 to 9.0 ± 7.6, and from 17.7 ± 7.3 to 11.2 ± 7.9, respectively, P = 0.0001), but there was no statistically significant difference between the FSSG scores in group I and those in group P.Subgroup analysis showed that significant improvements in the FSSG scores occurred in the patients in group I who had NERD grade N(modified Los Angeles classification)(7.8 ± 7.4 vs 12.5 ± 9.8, P = 0.041).The SF-36 scores for patients with NERD grade N who had received IM and rabeprazole were significantly improved in relation to their vitality and mental health scores.CONCLUSION:The addition of IM to rabeprazole significantly improves gastroesophageal reflux diseasesymptoms and the quality of the lives of patients with NERD grade N.展开更多
目的系统综述与评价目前国内常用的终末期肾病(end-stage renal disease,ESRD)患者生存质量量表,为临床开展生存质量评价及研究提供参考。方法通过中国知网检索2010年以来的国内相关文献,分析各生存质量量表的特性及文献应用现状。结果...目的系统综述与评价目前国内常用的终末期肾病(end-stage renal disease,ESRD)患者生存质量量表,为临床开展生存质量评价及研究提供参考。方法通过中国知网检索2010年以来的国内相关文献,分析各生存质量量表的特性及文献应用现状。结果常用的ESRD患者生存质量量表有6种,其中健康调查简表(the 36-item short form health survey,SF-36)和肾脏病生存质量简表(kidney disease quality of life-short form,KDQOL-SF)应用最为广泛。SF-36是普适性量表,具有短小、灵活、测评时间短的特点,应用比例达63.9%,但缺乏与肾脏病相关的生存质量评价;KDQOL-SF作为特异性量表,更针对肾脏病、透析患者,但测评条目79个,测评所需时间较长。结论开展ESRD患者的生存质量评价研究时,建议根据研究目的、样本量以及患者依从性等综合选择量表。展开更多
文摘Objective:The study objective was to translate,validate,and test the reliability of the original kidney disease and quality of life-36(KDQOL-36^(TM))instruments in Odia.Materials and Methods:A cross-sectional design with a purposive sampling technique was used.According to RAND Corporation guidelines,initially,the items of the KDQOL-36^(TM)questionnaires were translated into Odia by two independent,bilingual,professional translators,and then back-translated to English,followed by tryout and field testing.The experts validated the KDQOL-36^(TM)instrument review committee for review related to kidney health conditions.The tool was implemented among 180 patients undergoing“maintenance”hemodialysis.The following tests evaluated reliability and validity:test-retest reliability with Cronbach’s alpha correlation(stability),(reliability)internal consistency,and contents validity index.Results:The Cronbach’s alpha value and intraclass correlation coefficient(ICC)score of all five domains,namely“physical component summary,mental component summary(MCS),the burden of kidney disease,symptoms and problems of kidney disease,and effects of kidney disease”of both KDQOL-36^(TM)English and Odia(KDQOL-36-E^(TM)and KDQOL-36-O^(TM))version,recommended excellent homogeneity.A high positive correlation(r=0.998)was found between the Odia version of KDQOL-36^(TM)and the English version KDQOL-36^(TM)questionnaire.The ICC score ranges from 0.889 to 0.997 at a 95%confidence interval for test-retest reliability,and Cronbach’s alpha was 0.832.Conclusion:This study explores the Odia version of KDQOL-36^(TM)psychometric properties,depicted at an acceptable level of internal consistency.The KDQOL-36-O^(TM)instrument is a valid and reliable tool for assessing the kidney disease-related quality of life in Odia-speaking hemodialysis patients.
文摘Introduction: The importance of determining health related quality of life in Chronic Kidney Disease patients on dialysis is well established. However, research was limited in establishing the health related quality of life for chronic kidney disease patients on dialysis at University Teaching Hospital-Adult Hospital. Further the effects of haemoglobin levels and adequacy of dialysis on their health related quality of life were unknown. Therefore, the study sought to answer a research question: what is the health-related Quality of Life for Chronic Kidney Disease patients on dialysis at University Teaching Hospital? Method: The study was an analytical cross-sectional study that used a census sampling method. The study participants comprised of 104 patients who sought dialysis services (2020-2021) from the University Teaching Hospital-Renal Unit in Lusaka, Zambia. A structured Kidney Disease Quality of Life Short form (KDQOL-SF 36) was used to collect data. The Data was analyzed using the Statistics and Data software version 13, Chi-square tests, and logistic regression analysis was employed to analyse the data. A confidence interval of 95% was set with a significant level of 0.05. Results: The study included 104 Chronic Kidney Disease patients from the Dialysis Unit at University Teaching Hospital in Lusaka, Zambia. Two-thirds (68%) of the patients had a good overall health-related quality of life with the biological wellbeing having exceptionally high scores. The male gender (66.7%), unemployment (69.4%), and low haemoglobin levels (77.8%) were identified as factors associated with poor health-related quality of life. Conclusion: The health related quality of life of Chronic Kidney Disease patients at University Teaching Hospital was good. Low haemoglobin levels, age, male sex and unemployment were found to be factors associated with poor health related quality of life. Integration of health-related quality of life assessment for Chronic Kidney disease patients on dialysis in routine care is paramount. Particular focus should be on patients presenting with low haemoglobin levels, age, male sex and unemployment for timely interventions.
文摘Quality of life research is an emerging and rapidly developing health measurement technology.Quality of life assessment is performed using scales.Accurate quality of life assessment provides comprehensive information of patient which allows clinicians to put emphasis on overall quality of life(Total QOL)of patient.Quality of life scales have been applied for analysis of diseases such as leukemia and immune thrombocytopenia.This article reviews the use of commonly used quality of life scales for hematological diseases.
文摘<strong>Background:</strong> Chronic kidney disease could impair the quality of life of patients regardless of the stage of the disease. So far, there is no data on this subject in the Congolese population. The objective of this study was to assess the quality of life of patients with chronic kidney disease in Congo. <strong>Patients and methods:</strong> We conducted a cross-sectional, descriptive study of 91 patients followed in the department of nephrology and in dialysis centers in Brazzaville, Pointe-Noire and Oyo from July 1<sup>st</sup> to November 30<sup>th</sup>, 2020, <i>i.e. </i> five months. We used the Kidney disease quality of life short form health survey score (KDQOL-SF 36) to assess the quality of life of patients and a questionnaire was used to determine socio-demographic, clinical and therapeutic features. Data analysis was done on SPSS 2.2 software. <strong>Result:</strong> The average age was 51.9 ± 15 years. The sex ratio M/F was 2.03. The average time of patient follow-up was 15 months;90% of them had hypertension. The overall average score of specific dimensions was 52 ± 18;disease burden was the dimension most affected;that of the generic dimensions was 34 ± 25 with the limitation of physical activity dimension being the most affected. No patient had received psychological follow-up. <strong>Conclusion:</strong> This study indicates the value of a systematic assessment of the quality of life of patients with chronic kidney disease as well as the need for assistance for these patients in different areas of their life.
基金Supported by Natural Science Foundation of Guangdong Province,China(No.2019A1515011212)Beijing Bethune Charitable Foundation(No.BJ-GY2021014J)。
文摘AIM:To explore the relationship between ocular and systemic conditions and the impact of ocular complications on the quality of life(QOL)in patients after allogeneic hematopoietic stem cell transplantation(ALLO-HSCT).METHODS:Forty-four patients with severe hematopoietic disease were enrolled after ALLO-HSCT at our center from July 2018 to October 2020.They completed two questionnaires:the Ocular Surface Disease Index(OSDI)and the quality-of-life scale for Chinese patients with visual impairment(SQOL-DV1).Ocular conditions and systemic conditions were also assessed.RESULTS:Eye damage was correlated with total bilirubin(P=0.005),and gamma-glutamyl transferase(GGT)(P=0.021).There was no significant correlation between the overall QOL score and OSDI(P=0.8226)or SQOLDV1(P=0.9526)scores.The OSDI and the overall QOL score were not correlated with ocular conditions,including best-corrected visual acuity(BCVA),intraocular pressure,Schirmer tear test II,sodium fluorescein staining,tear film breakup time,and tear meniscus height.SQOLDV1 was correlated with BCVA(P=0.0007),sodium fluorescein staining(P=0.007),and tear film breakup time(P=0.0146).CONCLUSION:In some patients,early ocular symptoms are not evident after ALLO-HSCT,while ocular surface complications can be observed after a comprehensive ophthalmological examination.Especially for those with elevated total bilirubin or GGT,regular ophthalmic follow-up visits are essential to diagnose and treat ocular graft versus host disease(o GVHD),especially for patients with elevated total bilirubin or GGT.
基金supported by a grant from the Ministry of Health (Research for the Strategic Program 2007)
文摘Parkinson's disease has a negative impact on health-related quality of life in Parkinson's disease patients. Depression, cognitive impairment, coping strategies, dyskinesia, gait disorders and complications of dopaminergic drugs are the variables that most affect health-related quality of life. The ecological model of human development focuses attention on both individual and social environmental factors as targets for health interventions. From this perspective, the aim of this cross-sectional survey was to evaluate the influence of gender, family size and perceived autonomy on health-related quality of life in Parkinson's disease patients in nOrtheastern Sicily, Italy. Ninety Parkinson's disease patients, attending the Movement Disorders Clinic at IRCCS Centro Neurolesi "Bonino-Pulejo" (Messina), were consecutively enrolled. The Unified Parkinson Disease Rating Scale motor subscale (UPDRS-Ⅲ) scores, the Parkinson Disease Questionnaire-39 Item scores (as a disease-specific measure of health-related quality of life), scores on the Short Form (36) Health Survey Questionnaire (as a generic measure), and answers to a brief checklist were recorded. A total of 85 Parkinson's disease patients (49% males and 51% females; mean age 70.8 ± 8.6 years mean UPDRS-Ⅲ 24.15 ± 6.55; mean disease duration 5.52 ± 4.65 years) completed the booklet of questionnaires. In the multivariate regression analysis, we included clinical and social variables as independent predictors of health-related quality of life. Our results suggest a potential compounding effect of ecological intrapersonal and interpersonal levels on health-related quality of life outcomes. Gender, self-evaluated autonomy and family size significantly impacted health-related quality of life. If quality of life is used as an indicator of treatment outcomes, an ecological perspective of the case history will be important to disclose relevant prognostic information and trigger personalized health care interventions.
基金funding from Jordan University of Science and Technology,Deanship of Research.
文摘Objective:This study aimed to examine the effects of mindfulness meditation on trait mindfulness,perceived stress,emotion regulation,and quality of life in end-stage renal disease patients undergoing hemodialysis.Methods:An experimental study with repeated measures design was conducted among a sample of 74 end-stage renal disease patients undergoing hemodialysis between January and May 2021 in the dialysis center at Jahra hospital,Kuwait.The patients were randomly assigned to the experimental(n?37)and control groups(n?37).The experimental group participated in 30-min mindfulness meditation sessions(three sessions a week for five weeks)held during their hemodialysis sessions;the participants in the control group were instructed to sit with their eyes closed and relaxed for 30 min three times a week for five weeks during hemodialysis sessions.The dependent variables of both groups were measured at baseline(T0),middle of intervention(T1),and end of intervention(T2)using the Mindful Attention Awareness Scale(MAAS),Perceived Stress Scale(PSS),Emotion Regulation Questionnaire(ERQ),and Kidney Disease Quality of Life(KDQOL-36)questionnaire.The study was registered in the ClinicalTrial.gov(Identifier:NCT05176730).Results:The repeated measures ANOVA(within-subject)results for the experimental group showed that mindfulness meditation had significantly decreased perceived stress by the end of the intervention.Also,mindfulness meditation improved mindfulness,emotion regulation,and kidney disease-related quality of life in the experimental group,and this improvement occurred significantly at both T1 and T2.The repeated measures ANOVA(within and between-subject)results showed that the experimental group,as compared to the control group,had lower perceived stress,higher trait mindfulness,higher emotional regulation,and higher kidney disease-related quality of life over time.Conclusions:The positive findings of this study offer health policy-makers and hospital administrators a promising tool to use with patients undergoing hemodialysis as a way to manage stress and improve quality of life.However,this study should be replicated in multiple settings with follow-up assessments.
文摘Introduction: The objectives of this work were to assess haemodialytic patients’ quality of life (QoL) and to identify factors affecting this QoL. Patients and Methods: It was a three (03) month monocentric and transversal study (from October 24, 2011 to January 27, 2012) conducted in the haemodialysis unit at Hubert Koutoukou Maga Teaching Hospital (CNHU-HKM) in Cotonou. Patients included were residents of Benin, aged 18 years and above, chronic haemodialysis in this unit for over 3 months, and willfully gave their consent. Quality of life was evaluated using questionnaire on Kidney Disease Quality of Life Short-Form French version 1.2 (KDQoL-SF 36). Epidemiological data, nephropathy etiologies and purification parametres were recorded in patients files. Data statistical analysis was performed using SPSS software 11.5. Results: In total 131 patients were involved in the study. The average age was 50.27 ± 12.17 years with a sex ratio of 1.69. Nephroangiosclerosis was the 1st cause. Most patients 128 (97.71 %) received two haemodialysis sessions on weekly basis. The Average Overall Score (AOS) based respectively on SF 36 and KDQoL was 48.55 and 58.55. The average of both SF 36 and KDQoL AOS was 53.55. Factors affecting hemodialytic patients quality of life were vitality, limitations related to mental health and physical condition, burden of kidney disease, effect of the disease on daily life and occupational status. The study revealed that: Patients education level was correlated with vitality
文摘,b>Objective: The aim of this study was to determine the frequency of fibromyalgia (FM) in patients on Peritoneal Dialysis (PD) and to investigate its impact on the quality of life of that population. Methods: A hundred and twenty four patients with end stage renal disease who had undergone PD, and a control group of 54 age and sex-matched healthy volunteers were included to the study. Demographic characteristics including age, sex, disease and dialysis duration were recorded. Fibromyalgia Impact Questionnaire (FIQ) and Nottingham Health Profile (NHP) were also measured. Results: The mean age of the patients (68 female, 56 male) and control subjects (36 female, 18 male) were 43.5 ± 13.4 and 41.2 ± 9.2 years respectively. The prevalence of FM in the PD patients and controls were determined as 9.7% (12 patients) and 11.1% (6 controls) respectively and were found to be similar (p = 0.983). The mean score of sub- groups of NHP except pain and emotion subgroups, were significantly higher in PD patients than in the control group. The mean FIQ levels, the scores of all the subgroups of NHP except the social subgroup were significantly higher in PD patients with FM than in those without FM. Conclusion: In conclusion although the prevalence of FM appears to be similar in PD patients and control subjects, the functional disability is common and quality of life is worse in PD patients with FM than in patients without FM. Detection and treatment of FM may lead to improvement in the quality of life of PD patients with this syndrome.
文摘BACKGROUND With advancements in the treatment of chronic liver disease(CLD),including liver transplantation(LT),quality of life and satisfaction after LT have become an important issue for pediatric patients and their parents.More evidence-based information is needed to describe and assess the impact of pediatric CLD on parents and the satisfaction of parents with treatment to better understand their needs.AIM To assess the satisfaction of parents of pediatric LT patients and that of parents of pediatric CLD patients METHODS During this survey,data were collected from parents of pediatric patients who underwent LT between January 2010 and April 2017(LT group;n=91)and parents of pediatric patients with chronic liver disease(CLD group;n=94).Group comparisons were made based on the pediatric health-related quality of life(PedsQL)health care parent satisfaction scale,impact on family scale(IFS)and demographic characteristics.The PedsQL was administered to parents during a phone interview and the results were used to assess the health carerelated satisfaction of parents.The IFS was used to assess the impact of the child’s CLD status on the family.Demographic variables such as education level(elementary vs middle vs high vs university),monthly income(low vs middle vs high),and place of residence(village vs town vs city)were compared between CLD and LT parent groups.Finally,PedsQL and IFS results were also analyzed according to demographic variables.RESULTS A total of 185 parents aged 19 to 65 years were included.There were statistically significant differences between the LT and CLD groups in terms of career(P<0.001),monthly income(P=0.016),and education level(P=0.041).According to the PedsQL results,family inclusion,communication,technical skills,emotional needs,and overall satisfaction were significantly different between the groups;the LT group had consistently higher scores(P<0.001).Additionally,scores for the IFS parameters of financial impact,familial-social impact,personal strain,and total impact were consistently higher for the LT group(P<0.001).There were statistically significant relationships between education level,monthly income,and place of residence according to the IFS results but not the PedsQL results.There were inverse relationships between the difficulties that parents experience because of their child’s health and education levels,monthly income,and place of residence.However,no relationship was found between education level,monthly income,or place of residence and satisfaction with health care services provided in the hospital according to the PedsQL results.CONCLUSION Parents of children who underwent LT were very satisfied with the health care services provided to their children.However,they had more difficulties than parents of children with CLD.
文摘Chronic kidney disease(CKD) is encountered in millions of people worldwide,with continuously rising incidence during the past decades,affecting their quality of life despite the increase of life expectancy in these patients.Disturbance of sexual function is common among men with CKD,as both conditions share common pathophysiological causes,such as vascular or hormonal abnormalities and are both affected by similar coexisting comorbid conditions such as cardiovascular disease,hypertension and diabetes mellitus.The estimated prevalence of erectile dysfunction reaches 70% in end stage renal disease patients.Nevertheless,sexual dysfunction remains under-recognized and under-treated in a high proportion of these patients,a fact which should raise awareness among clinicians.A multifactorial approach in management and treatment is undoubtedly required in order to improve patients' quality of life and cardiovascular outcomes.
文摘目的 翻译外周动脉疾病生活质量量表(vascular quality of life questionnaire, VascuQOL)再施以优化,得到和我国文化背景与语言习惯相契合的汉化版VascuQOL。方法 通过顺译、回译、修改条目、专家咨询、文化调适及预调查,得到汉化版VascuQOL;以重庆医科大学附属第一医院血管外科302名下肢动脉硬化闭塞症患者为研究对象,对量表的信效度展开检验。结果 汉化版VascuQOL各条目临界比值为3.086~17.605;量表各条目评分和总分之间的关联系数为0.237~0.695(P<0.01);量表各条目内容效度为0.861~1.000,总量表内容效度为0.986;探索性因子分析(EFA)找到特征根在1以上的5项公因子,累计方差贡献率是67.39%,Bartlett’s球形检验中χ2值为3289.061(P<0.01);采用欧洲五维健康量表EQ-5D-5L作为校标,Pearson相关分析为0.697;内部一致性信度Cronbach’sɑ系数为0.871,各维度Cronbach’sɑ系数分别为0.893、0.859、0.759、0.569、0.727(P<0.01);重测信度为0.996。结论 汉化版VascuQOL具有良好的信度和效度,可用于我国下肢动脉硬化闭塞症患者的生活质量测评。
文摘目的:翻译并修订阿尔茨海默病相关生活质量量表(Alzheimer’s disease-related quality of life scale,ADRQL),并对其进行信度和效度评价。方法:采用Brislin跨文化研究翻译模式对英文版ADRQL量表进行翻译;通过专家小组讨论和预调查对翻译量表进行文化调适;采用便利抽样方法,对2022年12月至2023年6月在上海瑞金医院和多家社区卫生中心就诊的阿尔茨海默病及其他类型痴呆患者照护者221人进行调查。采用Cronbach’sα系数测量结果相关性评价量表的信度;采用专家评定法评价量表的内容效度,运用探索性因子分析评价量表的结构效度。结果:中文版ADRQL量表Bartlett’s球形检验χ2=2466.634,P<0.001,KMO为0.727,探索性因子分析提取8个公因子,累计方差贡献率为47.37%;量表水平的内容效度指数为0.99,条目水平内容效度指数为0.83~1.00;总量表的Cronbach’sα系数为0.809,分半信度系数0.860。结论:中文版ADRQL具有较好的信效度,可用于评估我国阿尔茨海默病及其他类型痴呆患者的相关生活质量评估。
文摘The risk of peritonitis complications in continuous ambulatory peritoneal dialysis(CAPD)can be prevented or reduced by providing proper education and continuous monitoring.Telemedicine and telemonitoring are methods that enable remote monitoring and patient care.This study aimed to determine the success and factors affecting telemonitoring in CAPD patient care.This study is a scoping review(ScR)using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses-ScR method.Article searches were carried out on ProQuest,PubMed,and ScienceDirect with a time range of 2018-2023.Data extraction was performed regarding knowledge level,quality of life,clinical outcomes(peritonitis),and risk of hospitalization.Of the 12 articles and studies included,6 articles were related to the effect of telemonitoring on CAPD patient outcomes,and 6 articles were associated with the effect of education on CAPD patient outcomes.Education provided to patients can improve patient understanding of therapeutic modalities for renal disorders,reduce the potential for peritonitis and dialysis complications,and improve the quality of life of patients with CAPD.CAPD patients who received telemonitoring had a better quality of life,good clinical outcomes,and a lower risk of hospitalization than those who did not receive telemonitoring and had fewer health-care visits.In summary,the implementation of telemonitoring and education in chronic kidney disease patients with CAPD modality therapy has been proven effective in improving quality of life and reducing dialysis-related risks.
文摘AIM:To evaluate the efficacy of adding irsogladine maleate(IM) to proton-pump inhibitor(PPI) therapy in non-erosive reflux disease(NERD) treatment.METHODS:One hundred patients with NERD were recruited and randomized to receive rabeprazole plus IM(group I) or rabeprazole plus placebo(group P).The efficacy of the treatment was assessed using the Frequency Scale for the Symptoms of Gastroesophageal Reflux Disease(FSSG) and the short form(SF)-36 quality of life questionnaires after four weeks of treatment.We also assessed whether patients with NERD with minimal changes(grade M) had different responses to the therapies compared with patients who did not have minimal changes(grade N).RESULTS:Group I and group P showed significant improvements in their FSSG scores after the treatment(from 17.9 ± 7.9 to 9.0 ± 7.6, and from 17.7 ± 7.3 to 11.2 ± 7.9, respectively, P = 0.0001), but there was no statistically significant difference between the FSSG scores in group I and those in group P.Subgroup analysis showed that significant improvements in the FSSG scores occurred in the patients in group I who had NERD grade N(modified Los Angeles classification)(7.8 ± 7.4 vs 12.5 ± 9.8, P = 0.041).The SF-36 scores for patients with NERD grade N who had received IM and rabeprazole were significantly improved in relation to their vitality and mental health scores.CONCLUSION:The addition of IM to rabeprazole significantly improves gastroesophageal reflux diseasesymptoms and the quality of the lives of patients with NERD grade N.
文摘目的系统综述与评价目前国内常用的终末期肾病(end-stage renal disease,ESRD)患者生存质量量表,为临床开展生存质量评价及研究提供参考。方法通过中国知网检索2010年以来的国内相关文献,分析各生存质量量表的特性及文献应用现状。结果常用的ESRD患者生存质量量表有6种,其中健康调查简表(the 36-item short form health survey,SF-36)和肾脏病生存质量简表(kidney disease quality of life-short form,KDQOL-SF)应用最为广泛。SF-36是普适性量表,具有短小、灵活、测评时间短的特点,应用比例达63.9%,但缺乏与肾脏病相关的生存质量评价;KDQOL-SF作为特异性量表,更针对肾脏病、透析患者,但测评条目79个,测评所需时间较长。结论开展ESRD患者的生存质量评价研究时,建议根据研究目的、样本量以及患者依从性等综合选择量表。