Development of the Kidney Disease Quality of Life (KDQOLTM) Instrument

This paper describes the Kidney Disease Quality of Life (KDQOL^TM) Instrument (dialysis version), a self-report measure that includes a 36-item health survey as the generic core, supplemented with multi-item scales targeted at particular concerns of individuals with kidney disease and on dialysis (symptom/problems, effects of kidney disease on daily life, burden of kidney disease, cognitive function, work status, sexual function, quality of social interaction, sleep). Also included were multi-item measures of social support, dialysis staff encouragement and patient satisfaction, and a single-item overall rating of health. The KDQOL^TM was administered to 165 individuals with kidney disease (52% female; 48% male; 47% White; 27% African-American; 11% Hispanic; 8% Asian; 4% Native American; and 3% other ethnicities), sampled from nine different outpatient dialysis centres located in Southern California, the Northwest, and the Midwest. The average age of the sample was 53 years (range from 22 to 87), and 10% were 75 years or older. Internal consistency reliability estimates for the 19 multi-item scales exceeded 0.75 for every measure except one. The mean scores for individuals in this sample on the 36-item health scales were lower than the general population by one-quarter (emotional well-being) to a full standard deviation (physical function, role limitations due to physical health, general health), but similar to scores for dialysis patients in other studies. Correlations of the KDQOL^TM scales with number of hospital days in the last 6 months were statistically significant (p<0.05) for 14 of the 19 scales and number of medications currently being taken for nine of the scales. Results of this study provide support for the reliability and validity of the KDQOL^TM.Development of the KDQOL measure was supported in part by a subgrant from the University of Arizona to RAND and an unrestricted research grant from Amgen to RAND. The measures weee developed for use in the Enhancing the Role of Pharmacists in the Care of Chronic Dialysis Patients Through the Use of Computer-modeled Algorithms for Epogen Dosing research project sponsored by Amgen through a grant to the University of Arizona (S. J. Coons, PI). A copy of the measures can be obtained from RAND free of charge.     

Differences in Health-Related Quality of Life and Treatment Preferences Among Black and White Patients with End-Stage Renal Disease

BACKGROUND: Relatively little is known about racial differences in health-related quality of life (HRQL) among patients receiving dialysis for end-stage renal disease (ESRD) or how such differences may relate to preferences for renal transplantation. METHODS: We surveyed 1392 patients, ages 18-54 approximately 10 months after they initiated dialysis in 4 regions of the United States. The HRQL measures analyzed were overall health, emotional health, physical activity, energy level, social activity, and effect of ESRD on daily life. We also examined whether the measures of HRQL were associated with patients' preferences for renal transplantation by race. RESULTS: After adjustment for socioeconomic and clinical characteristics, Black women and men reported better overall health than White women and men, respectively. Black women reported higher energy levels than White women, and Black men reported less negative effects of ESRD on daily life compared to White men. Black men with high levels of physical activity were less likely to be certain about preferring a transplant than White men with similar levels of physical activity. CONCLUSIONS: Black patients receiving dialysis reported better HRQL than White patients, even after controlling for potential confounders. Racial differences in preferences for renal transplantation among men may be associated with their levels of physical activity.     

Translation,cultural adaptation,cross-validation of the Turkish diabetes quality-of-life (DQOL) measure

Objective The aim of this study was to test the validity and reliability of the Turkish version of the diabetes quality of life (DQOL) questionnaire for use with patients with diabetes. Methods Turkish version of the generic quality of life (QoL) scale 15D and DQOL, socio-demographics and clinical parameter characteristics were administered to 150 patients with type 2 diabetes. Study participants were randomly sampled from the Endocrinology and Diabetes Outpatient Department of Dr. Lutfi Kirdar Kartal Education and Research Hospital in Istanbul, Turkey. Results The Cronbach alpha coefficient of the overall DQOL scale was 0.89; the Cronbach alpha coefficient ranged from 0.80 to 0.94 for subscales. Distress, discomfort and its symptoms, depression, mobility, usual activities, and vitality on the 15 D scale had statistically significant correlations with social/vocational worry and diabetes-related worry on the DQOL scale indicating good convergent validity. Factor analysis identified four subscales: satisfaction”, impact”, “diabetes-related worry”, and “social/vocational worry”. Conclusion Statistical analyses showed that the Turkish version of the DQOL is a valid and reliable instrument to measure disease related QoL in patients with diabetes. It is a simple and quick screening tool with about 15 ± 5.8 min administration time for measuring QoL in this population.     

Quality of life assessment in adults with type 1 Gaucher disease

The effect of enzyme replacement therapy on health-related quality of life in 25 adults with type 1 Gaucher disease was investigated over a 2-year period. Quality of life was assessed using the SF-36 Health Survey (SF-36). Psychological functioning was assessed using the Symptom Checklist-90R. The results indicated significant improvement in 7 of 8 SF scale scores beginning at 18 months of therapy (P<0.05 to 0.001). The SF scale showing improvement first was Vitality (energy level and fatigue) at 6 months of therapy (P<0.01). The SF-36 scales showing the largest improvements were Role-Physical and Social Functioning (P<0.001). Compared to the general US adult population, the study population's health profile was significantly lower prior to starting therapy but by 24 months of therapy there were no differences between the two. No differences were found in psychological functioning compared to a US adult normative group at the start of therapy. However, within the study population there was significant improvement in mood and global functioning and fewer psychological symptoms reported at 24 months of therapy. The findings indicate that enzyme replacement therapy for type 1 Gaucher disease has a positive impact on health-related quality of life from the patient's perspective.     

激素替代疗法对更年期综合征患者生活质量的影响

目的探讨激素替代疗法（HRT）对更年期综合征患者生活质量的影响。方法选择2013年1-11月在新乡市长垣县人民医院就诊的更年期综合征女性患者100例,随机分为研究组和对照组,各50例,2组患者均进行常规的健康宣教,研究组在此基础上给予HRT治疗。3个周期后,观察2组患者性激素的变化情况,同时采用更年期症状评分量表（Kupperman）、焦虑自评量表（SAS）、抑郁自评量表（SDS）及更年期生存质量量表（MENQOL）评价其生活质量。结果治疗后研究组雌二醇（E2）升高,促卵泡激素（FSH）、黄体生成素（LH）降低,与治疗前比较差异有统计学意义（P〈0.01）;治疗后研究组的E2高于对照组（P〈0.01）,而FSH,LH明显低于对照组（P〈0.01）。治疗后研究组的Kupperman,SAS,SDS及MENQOL评分与治疗前相比明显下降（P〈0.01）,且治疗后研究组生活质量的改善好于对照组（P〈0.01）。结论 HRT能显著改善更年期妇女的性激素水平,提高其生活质量,值得临床应用推广。     

Health-related Quality of Life in Children and Adolescents after Invasive Treatment for Congenital Heart Disease

Since the 1980s treatment techniques for congenital heart disease (ConHD) have gradually evolved. Therefore, actual information on the outcomes, including quality of life is required. Health-related quality of life was assessed long-term in four diagnostic groups of children, who underwent invasive treatment for ConHD between 1990 and 1995. The scores on the TNO-AZL Child Quality of Life Questionnaire (TACQOL) of both children with ConHD and their parents were compared with those of a same-aged reference group. The total sample of ConHD children (n = 113, 8–15 years old) obtained significantly lower mean scores on motor functioning, cognitive functioning, and positive emotional functioning than reference peers, reflecting an experience of poorer functioning. ConHD children, aged 8–11 years, obtained lower mean scores on 5 of the 7 TACQOL scales than reference peers. They also had a lower score on positive emotional functioning than 12- to 15-year-old ConHD children. The total sample of ConHD children obtained lower outcomes compared to their parents on 4 of the 7 TACQOL scales. No significant differences were found in health-related quality of life between ConHD boys and girls, neither between different diagnostic groups. Overall, this sample of recently treated ConHD children showed a worse health-related quality of life compared to reference groups. These findings deserve further attention.     

Quality of Life in Families of Children with Congenital Heart Disease

Within a family perspective on quality of life (QL) with congenital heart disease, the study investigates parental QL, and patients’ health-related QL as reported by themselves and by their parents. We examined the hypotheses that parental QL moderates the parental proxy reports. Sixty-nine patients (7–20 years, 61% male) and their caregivers participated in a computer-assisted QL-assessment. Children’s self-rated and proxy-rated QL correlated moderately, with the highest intra-class correlation on the subscale psychological well-being/functioning (r = 0.61; p < 0.001), less convergence in physical well-being/functioning (r = 0.49; p< 0.001) and absent correlation in the evaluation of intra-family relationships. Parental QL was correlated both with the children’s self-rated QL (r = 0.42; p< 0.05) and children’s parent-rated QL (r = 0.60; p< 0.001). Support for the moderator hypotheses is indicated by the results of regression analyses demonstrating a significant interaction effect of parental QL and patients’ self-reported QL in predicting parental proxy reports on their children’s QL. Post-hoc tests reveal that parents with low own QL agree significantly more with their children than parents with high QL. Parent–child agreement on the children’s QL is limited and reflects complementary subjective viewpoints. Psychosocial interventions should be family-focused and provide support for patients’ and their caregivers’ QL.     

Quality of Life in the General Norwegian Population, Measured by the Quality of Life Scale (QOLS-N)

The main aim of the present study was to derive norms or reference values from the general Norwegian population for the Norwegian version of the Quality of Life Scale (QOLS-N). In addition, associations between socio-demographic and health variables on the level of quality of life were examined. The sample consisted of 1893 subjects from a total of 4000 randomly selected Norwegian citizens representative of the entire Norwegian population, aged 19-81. The subjects received a mailed questionnaire containing the QOLS-N. Results show that the mean quality of life score was 84.1 (SD 12.5). Women reported a higher quality of life than men. People with higher levels of education reported a higher quality of life. Those who were married or cohabitating reported the highest quality of life and those who were unemployed reported a lower quality of life than those who worked. In addition, people reporting long-term diseases or health problems scored significantly lower on quality of life. These results could serve as reference values for the level of quality of life, as measured by the QOLS-N in the Norwegian population.     

COPD稳定期患者疾病严重程度与生命质量的相关性研究

目的研究慢性阻塞性肺疾病稳定期患者疾病严重程度与生命质量的相关性。方法对79例慢性阻塞性肺疾病稳定期患者进行综合评估,根据严重程度分为A、B、C和D组,与对照组（18例）分别进行36条目健康测量简表（SF-36）评分,比较组间生命质量各维度的差别。结果A组患者在SF-36量表各维度得分与对照组比较,差异无统计学意义（P〉0．05）。B、C和D组患者生命质量较对照组下降,D组下降维度最多且得分最低。结论COPD患者的生活质量较差,随着COPD患者疾病严重程度增加其生命质量下降。     

Quality of life and parkinson's disease: Translation and validation of the US Parkinson's Disease Questionnaire (PDQ-39)

Parkinson's disease is a common progressive neurodegenerative disorder affecting an estimated 4 million people worldwide. A number of general health status measures exist but few fully capture the subjective evaluation of life quality associated with Parkinson's disease. We report here the results of: (1) translating the British PDQ-39 into a US version, (2) validity and reliability of the new US PDQ-39 questionnaire, and (3) parallel validation analyses following the method published in the development of the British version of the PDQ-39. Data were collected by postal survey on 150 patients recruited from neurology clinics in the Seattle area. A short, generic health status measure (SF-36) was used to test convergent validity, and a three-day test–retest assessed the reliability of the PDQ-39. The US version of the PDQ-39 demonstrated acceptable internal consistency ( = 0.51 to 0.96) and proved to be reproducible (0.86 to 0.96). Subscales of the PDQ-39 showed convergence with like scales of the SF-36 and was able to discriminate between levels of symptom severity.     

肝肾移植患者生命质量量表研究进展

生命质量量表是评价肝肾移植患者术后生活质量的重要工具,对患者的治疗和预后起到监测与指导作用.生命质量量表包括普适性量表与特殊疾病量表,各自有其优势和不足.研究者在研究中要根据研究目的选择适合的量表,并结合现有量表优势特点与我国国情,积极研制适合我国肝肾移植患者的生命质量量表.     

Hysterectomy status,estrogen use and quality of life in older women: The Rancho Bernardo study

OBJECTIVE: To examine the long-term effects of hysterectomy and use of estrogen replacement therapy on health related quality of life and symptom subscales in community dwelling postmenopausal women. METHODS: Information on menopausal history including hysterectomy and oophorectomy status, and history of estrogen use was obtained from a sample of 801 women aged 50-96 years at a clinic visit between 1992 and 1996. Within 1 week of the clinic visit, a standardized, validated quality of well-being (QWB) scale was administered over the telephone by a trained interviewer. RESULTS: Among these women, 25.2% reported hysterectomy with bilateral oophorectomy an average of 28 years earlier, and 11.0% reported hysterectomy with ovarian conservation an average of 26.5 years earlier. Age-adjusted comparisons indicated that women with natural menopause had slightly higher total QWB scores and lower symptom subscale scores than women in either of the hysterectomy groups (p's = 0.06). However, after additional adjustment for estrogen use and other potentially confounding covariates, there was no significant difference in total QWB score or on any subscale scores by hysterectomy and oophorectomy status. After adjustment for age, women who never used estrogen had significantly higher total QWB scores (p = 0.03) and significantly lower symptom subscale scores, indicating fewer symptoms, than those who were past or current users (p = 0.01). These differences persisted after adjustment for age, type of menopause, and behavioral and lifestyle covariates (p's = 0.008). CONCLUSIONS: There are no long-term adverse effects of hysterectomy or bilateral oophorectomy on health related quality of life. Lower total QWB and greater symptom subscale scores by women currently using estrogen may reflect an adverse effect of hormone use on health related quality of life in older postmenopausal women.     

江苏省大学生生命质量现状研究

目的 差异化评价江苏省大学生生命质量的现状,为大学生生命质量的干预提供依据.方法 采用分层随机抽样方法调查江苏3所高校6个学科门类的2 100名大学生,采用大学生生命质量评价专用量表通过现场调查.结果 回收1 950份有效问卷,有效回收率为92.86％.江苏省大学生生命质量各维度均值都低于60分,生理、社会支持、环境、心理、行为维度均值从高到低,分别为59.54,59.36,58.28,57.66,57.36;总分均值为58.50,和谐指数均值为58.11,总体自评均值为63.56;二级指标中,价值观念和学习管理评分均值非常低,分别为44.33和54.59.结论 江苏大学生生命质量的评分不高,其中心理维度中个人价值观、社会价值观、学习动机较差,社会支持维度中对学校和老师支持的利用不足表现得尤为突出.     

Utility-based Quality of Life Measures in Alzheimer’s Disease

Objectives: To explore whether Alzheimer’s disease patients could rate their quality of life (QOL) using utility-based health indexes, and to provide new knowledge about the measurement properties of these instruments for patient and caregiver proxy ratings. Methods: A convenience sample of 60 mild-moderate AD patients and their caregivers were randomized to complete the Quality of Well-Being Scale (QWB), Health Utilities Index (HUI3) or EQ-5D and visual analogue scale (VAS) on two occasions. Test–retest reliability (intraclass correlation coefficients) and convergent validity (Spearman correlations) of utility scores with global health status, activities of daily living, comorbidity, mood, cognition and other utility measures were assessed. Results: Completion time was shortest for the combined EQ-5D and VAS. For patients with mild dementia and for proxies, reliability was ≥ 0.70 for the EQ-5D, QWB and HUI3. The EQ-5D had a ceiling effect for patient ratings. Convergent validity was demonstrated for patient and proxy ratings, with the strongest validity for EQ-5D ratings and the weakest validity for HUI3 patient ratings. Mean patient utility scores were significantly higher than mean proxy scores for all measures (p<0.001). Conclusions: For patient and proxy ratings, the EQ-5D had the best combination of measurement properties, although it had a substantial ceiling effect for patient ratings. Proxy QOL ratings did not accurately reflect patients’ ratings.     

Translation, cultural adaptation, initial reliability, and validation of Turkish 15D's version: a generic health-related quality of life (HRQoL) instrument

This article describes the adaptation of the Finnish 15D standardized measure of health-related quality of life (HRQoL) instrument for use in Turkey and assesses its psychometric properties. The HRQoL is measured in a sample of 75 patients with Type 2 diabetes using both 15D and Nottingham Health Profile (NHP) instruments. The internal consistency within the domains of 15D was high, with Cronbach's alpha values 0.89 for 15D scale and 0.89 for NHP. Significant correlations were observed between the scores of similar domains of 15D and the NHP in general health perception supporting the construct validity of the new 15D Turkish version. Overall, the results indicated that the adaptation of the 15D for use in Turkey was successful. The Turkish version was found to be a reliable and valid instrument. It is suitable and applicable to both clinical and population-based studies for the measurement of HRQoL in Turkey.     

改善老年慢性阻塞性肺疾病102例病人的生活质量的护理研究

目的分析并评价心理护理应用于改善老年慢性阻塞性肺疾病（COPD）病人生活质量的效果。方法随机将我院2011年3月至2012年4月期间收治的102例老年COPD病人分为实验组与对照纽各51例,两纽均给予常规护理措施,实验纽在常规护理的基础上实施心理护理。同时应用COPD病人生活质量调查表进行生活质量的评估。结果实验组治疗30d后病人的日常生活活动能力、焦虑症状及抑郁症状同对照组治疗30d后相比差异显著,存在统计学意义（P〈0．05）：实验组治疗30d后社会活动能力与对照组治疗30d后相比差异显著,存在统计学意义（P〈0,01）。结论在实施常规护理的基础上开展心理护理能够有效改善老年慢性阻塞性肺疾病病人的生活质量．值得临床推广应用。     

长期家庭氧疗联合呼吸操对慢性阻塞性肺疾病稳定期患者生存质量影响的研究

目的：分析长期家庭氧疗联合呼吸操对慢性阻塞性肺疾病稳定期患者生存质量的影响。方法：选取2013年1-7月本院临床确诊的COPD患者40例作为研究对象,按照计算机随机方法分为对照组和治疗组,每组20例。对照组患者给予常规治疗,治疗组患者在此基础上给予长期家庭氧疗和呼吸操治疗,对两组患者进行为期6个月随访,对比生存质量。结果：出院后3、6个月,治疗组的生存质量CAT评分均优于对照组,差异均有统计学意义（P〈0.05）;治疗组住院次数较对照组减少,差异有统计学意义（P〈0.05）。结论：长期家庭氧疗联合呼吸操对慢性阻塞性肺疾病稳定期患者生存质量具有一定的改善价值,值得推广。     

集束化护理对间质性肺疾病患者自护能力及生活质量的影响

目的探讨集束化护理对间质性肺疾病患者自护能力及生活质量的影响。方法选择2018年4月至2019年4月我院收治的间质性肺疾病患者68例,随机分为对照组和观察组各34例。对照组实施常规护理,观察组实施集束化护理,比较两组的自我护理能力量表(ESCA)及生活质量评分量表(SF-36)评分。结果观察组的ESCA评分及SF-36评分均高于对照组(P<0.05)。结论对间质性肺疾病患者采用集束化护理,可有效提高其自护能力,改善其生活质量,利于患者转归。     

Health-Related Quality of Life in Coronary Heart Disease Compared to Norms in Spanish Population

AIM: To interpret health-related quality of life (HRQL) values better, it is appropriate to compare them with population norms that can serve as reference standards. This study compares the quality of life of patients who have suffered an acute episode of ischemic cardiopathy with population norms, as measured by the Spanish version of the SF-36. METHODS: 132 patients admitted to the Cardiology Department of a Spanish general hospital for an acute episode of ischemic cardiopathy were studied. HRQL was assessed using the SF-36 questionnaire. To compare patient with population norms, raw and adjusted data were obtained and differences with population norms were analyzed by age and sex groups at the level of the 25th percentile (25% +/- CI 95%). RESULTS: Globally, differences between the patients and the general Spanish population were evident in all SF-36 dimensions except Physical Functioning, General Health and Mental Health. However, the largest differences were observed in the youngest coronary patients (<55 years old) were in all HRQL dimensions, except Vitality and Bodily Pain, the proportions of patients below the 25th percentile of the general population exceeded 25%. CONCLUSION: The comparison between HRQL in coronary patients and that in the general population confirms the impact of the disease especially in the youngest patients, and allows intervention to be directed towards the more vulnerable groups.