Validation of the Italian version of the Cystic Fibrosis Quality of Life Questionnaire (CFQoL), a disease specific measure for adults and adolescents with cystic fibrosis.

BACKGROUND: Disease specific, health-related quality of life (HRQoL) measurement is important in cystic fibrosis (CF). This work aimed to translate the original English Cystic Fibrosis Quality of Life Questionnaire (CFQoL) into Italian, evaluate the linguistic translation and to psychometrically evaluate the Italian version of the CFQoL. METHODS: The linguistic translation followed the international guidelines of forward and backward translation. Psychometric evaluation of the Italian CFQoL involved the assessment of construct validity, internal reliability, concurrent validity, known groups validity and test-retest reliability. RESULTS: The instrument was acceptable to adolescents and adults with CF and demonstrated robust psychometric properties. Principle components analysis indicated that the factorial structure was essentially similar to the original, and the internal reliability of each domain was good (Cronbach alpha coefficients 0.73 to 0.91). Appropriate domains of the CFQoL and SF-36 correlated well indicating good concurrent validity (r=0.68-0.80). Consistent with theoretical expectations some domains were able to discriminate between disease severity groups. Test-retest reliability, assessed by intraclass correlation coefficients, was found to be excellent (ICC 0.83 to 0.98). CONCLUSIONS: The Italian CFQoL is a valid and reliable measure. Its use in individual patient monitoring and research should complement traditional clinical outcome measures.     

Quality of life in cystic fibrosis: the impact of gender, general health perceptions and disease severity

BACKGROUND: Disease progression in cystic fibrosis (CF) is marked by deterioration across a number of physiological systems. In addition, there is evidence that females have a worse prognosis than males. The current work assesses the impact of both these factors on health related quality of life (HRQoL). METHODS: Two hundred and twenty-three adolescents and adults completed the cystic fibrosis quality of life (CFQoL) questionnaire with a further 185 approached and not responding by non-completion of the questionnaire. The CFQoL is divided into nine domains: physical, social, treatment, chest symptoms, emotional functioning, concerns for the future, relationships, body image, and career. Measurement of objective clinical status included, body mass index (BMI), and percentage of predicted forced expiratory volume in one second (FEV1). General health perceptions (GHP) were also measured. RESULTS: Patients were sub-divided by gender and disease severity (mild > 70% FEV1, moderate 40-69% and severe < 40%). Factorial analysis of variance indicated significant main effects for FEV1 (F = 587.98, P < or = 0.001) and BMI (F = 17.29, P < or = 0.001) as a function of disease severity. Post hoc tests revealed significant two-group differences for FEV1 and BMI between disease severity groups. No differences were observed for gender across FEV1 or BMI. Differences emerged across most CFQoL domains for disease severity, with the exception of concerns for the future, which was consistently low throughout. Gender differences emerged for chest symptoms, emotional functioning, concerns for the future, body image and career. With the exception of body image, females exhibited poorer HRQoL. Pearson correlations indicated that females' perception of health was more closely related to clinical status than males. CONCLUSIONS: Disease severity has an impact on HRQoL in adolescents and adults with CF. Some differences emerged between males and females, with females generally reporting poorer HRQoL. Evidence indicated that males and females perceived their health status differently, with females having a more accurate perception of objective clinical health status.     

Associations between clinical variables and quality of life in adults with cystic fibrosis.

BACKGROUND: The disease progression of cystic fibrosis (CF) is marked by an increase in clinical conditions and therapeutic interventions, which have the potential to affect health-related quality of life (HRQoL). This cross-sectional study explored associations between clinical variables and HRQoL. METHODS: HRQoL was measured using the Cystic Fibrosis Quality of Life (CFQoL) questionnaire, which consists of nine domains: physical, social, treatment, chest symptoms, emotional functioning, concerns for the future, relationships, body image, and career concerns. The CFQoL was completed by 223 adults with CF. Clinical and demographic data collected were: age, gender, FEV1% predicted, BMI, Burkholderia cepacia status, lung transplant status, diabetic status, level of nutritional intervention, and presence of an intravenous access device. Multiple regression using forward selection was used to construct models relating these variables to each HRQoL domain. RESULTS: Despite many of the variables being inter-related, some variables were associated with CFQoL domains even in the presence of other important clinical factors. FEV1% predicted was weakly positively associated with all nine domains. Strong evidence emerged that patients who had received a lung transplant reported a higher HRQoL in physical and social functioning, chest symptoms, and treatment issues. Females tended to report a lower quality of life for chest symptoms and career issues, but higher values for body image. Patients with an access device expressed more career concerns. There was no evidence of an association between B. cepacia and any of the nine CFQoL domains. The model for the body image domain explained a high percentage of the variance (R2=30%): negative body image was associated with lower BMI, having an access device, diabetes, and enteral feeding. CONCLUSIONS: While important associations were identified, much of the variance in HRQoL remains unexplained. Other clinical and psychosocial variables merit investigation. A longitudinal study is required to investigate how the disease trajectory and associated treatments affect an individual's quality of life.     

Validation of the Dutch cystic fibrosis questionnaire (CFQ) in adolescents and adults.

BACKGROUND: This study assesses the reliability and validity of the Dutch version of a disease-specific measure of health-related quality of life (HRQOL) for adolescents and adults with CF (CFQ-14+). The 47-item CFQ-14+ covers nine domains, three symptom scales and one health perception scale. METHODS: To assess psychometric characteristics of the CFQ-14+, cross-sectional (homogeneity, discriminative and construct validity) and test-retest designs were used. Eighty-four adolescents and adults with CF (mean age: 21.4 years, range 14.0-46.5 years) and a wide range of lung function (mean FEV1: 59.9% predicted, range 15-121%) completed the questionnaire during a routine visit. RESULTS: Internal consistency was acceptable for most domains of the CFQ-14+ (alpha = 0.43-0.92) and test-retest reliability was high for all domain scores (0.72-0.98). Several domains of the CFQ-14+ were able to differentiate between individuals with varying disease severity and between nourished and malnourished patients. Construct validity of the questionnaire was fair, with moderate to strong correlation between physically orientated domains and pulmonary function (rs = 0.36-0.62). CONCLUSION: The results demonstrate that the CFQ-14+ questionnaire is a well-validated measure of HRQOL assessment in adolescents and adults with CF.     

Validation of the SF-36 for the assessment of quality of life in adolescents and adults with cystic fibrosis.

BACKGROUND: Generic health-related quality of life measures are often applied to disease groups without assessment of their psychometric properties. The current work assesses the properties of the Short Form 36-item (SF-36) questionnaire in a British sample of adolescents and adults with cystic fibrosis (CF). METHODS: Two hundred and twenty-three adolescents and adults with CF completed the SF-36 with a further 185 approached and not responding by non-completion of the questionnaire. The structure and internal reliability of the instrument was assessed by principal components analysis, Cronbach alpha coefficients and item to domain correlations. Differences between disease severity groups were assessed by analysis of variance. RESULTS: Factor analysis of the SF-36 scores broadly confirmed domain structures for the SF-36. Cronbach alpha coefficients were high (range 0.82-0.91) and item-to-same domain correlations were stronger than item-to-unrelated domain correlations. Examination of differences between mild, moderate and severe disease states revealed four significant main effects for: physical functioning, role limitation due to physical functioning, general health perceptions and energy and vitality. The analysis also revealed the presence of numerous ceiling effects across domains. CONCLUSIONS: The domain structure of the SF-36 was demonstrated to be robust. However, the discriminatory ability of the measure was disappointing. The presence of ceiling effects and the low frequency of differences between intermediate disease severity groups indicated that the SF-36 was not discriminatory with respect to mild disease states or progression of illness.     

Reliability of a multidimensional questionnaire for adults with treated complete cleft lip and palate.

The purpose of this study was to evaluate the reliability of a multidimensional questionnaire for Swedish adults with treated complete unilateral or bilateral cleft lip and palate (CLP). The questionnaire was designed to be used in the evaluation of adults with treated CLP after treatment. Before any conclusions were drawn from the results of the study we assessed the test-retest reliability of the questionnaire. The questionnaire included 168 questions and assessed the following domains: aesthetics, functions associated with CLP, satisfaction with treatment and perceived need for treatment, quality of life, depression and non-specific physical symptoms, body image, and jaw function. The subjects answered the questionnaire twice at a 2-3-week interval. Sixty-one adults (38 men, 23 women) mean age 24 years (range 20-29) participated in the study. The response rate for the questionnaire was acceptable at 75%. The test-retest reliability varied among the different domains. The reliability of questions regarding aesthetics, functions associated with CLP, and treatment satisfaction was good to excellent (intraclass correlation coefficient (ICC) = 0.51 to 0.89). Good to excellent (ICC = 0.61 to 1.0) reliability was also found for the quality of life in various life domains and the wellbeing scales. The reliability of the body image scale was moderate (kappa = 0.43-0.60) for most items and lower than that of other scales used in this study. The reliability of the mean depression symptom score (ICC = 0.93) and the mean non-specific physical symptoms score (ICC = 0.85) were excellent. The reliability of the mandibular function impairment was good (ICC = 0.67). The conclusion of the study is that an overall reliability was good for the multidimensional questionnaire.     

Reliability of a multidimensional questionnaire for adults with treated complete cleft lip and palate

The purpose of this study was to evaluate the reliability of a multidimensional questionnaire for Swedish adults with treated complete unilateral or bilateral cleft lip and palate (CLP). The questionnaire was designed to be used in the evaluation of adults with treated CLP after treatment. Before any conclusions were drawn from the results of the study we assessed the test-retest reliability of the questionnaire. The questionnaire included 168 questions and assessed the following domains: aesthetics, functions associated with CLP, satisfaction with treatment and perceived need for treatment, quality of life, depression and non-specific physical symptoms, body image, and jaw function. The subjects answered the questionnaire twice at a 2-3-week interval. Sixty-one adults (38 men, 23 women) mean age 24 years (range 20-29) participated in the study. The response rate for the questionnaire was acceptable at 75%. The test-retest reliability varied among the different domains. The reliability of questions regarding aesthetics, functions associated with CLP, and treatment satisfaction was good to excellent (intraclass correlation coefficient (ICC) = 0.51 to 0.89). Good to excellent (ICC = 0.61 to 1.0) reliability was also found for the quality of life in various life domains and the wellbeing scales. The reliability of the body image scale was moderate (kappa = 0.43-0.60) for most items and lower than that of other scales used in this study. The reliability of the mean depression symptom score (ICC = 0.93) and the mean non-specific physical symptoms score (ICC = 0.85) were excellent. The reliability of the mandibular function impairment was good (ICC = 0.67). The conclusion of the study is that an overall reliability was good for the multidimensional questionnaire.     

The Scoliosis Research Society-22 questionnaire adapted for adolescent idiopathic scoliosis patients in China: reliability and validity analysis

Study design Outcome investigation to verify the internal consistency, reproducibility and validity of the adapted Chinese version of the Scoliosis Research Society-22 (SRS-22) questionnaire for measuring health-related quality of life (HRQoL) in children with idiopathic scoliosis. Objective To develop this questionnaire for the outcome measurement in treating Chinese adolescents with idiopathic scoliosis and evaluate its metric qualities. Summary of background data The SRS-22 questionnaire has proven to be a valid instrument for clinical assessment of patients with idiopathic scoliosis and has been successfully translated into Spanish and Turkish. In most developing countries, however, quality of life and psychological health have been poorly described when treating children with idiopathic scoliosis. Methods Trans-cultural adaptation of the SRS-22 questionnaire was carried out according to the International Quality of Life Assessment Project guidelines. The final version was approved by a committee of experts. The questionnaire was completed by 86 adolescents with idiopathic scoliosis who had been treated with a brace; this included 11 males and 75 females, aged from 10 to 18 years (mean 13.9 years). Curve magnitude ranged from 25° to 45° (mean 35.6°). A subgroup of 30 patients completed the questionnaire again in 3 or 4 weeks. Results Five common factors were acquired from factorial analysis, and the cumulative contribution ratio was 67.66%. The overall alpha coefficient of the questionnaire was 0.88. Coefficients for individual domains were as follows: function/activity, 0.70; pain, 0.80; self-image, 0.80; mental health, 0.88; and satisfaction, 0.81. The questionnaire as a whole had a test–retest correlation coefficient of 0.97. Test–retest correlation coefficients for individual domains were as follows: function, 0.85; pain, 0.96; self-image, 0.96; mental health, 0.95; and satisfaction, 0.91. Conclusion The Chinese version of the SRS-22 questionnaire is eligible in terms of reliability and validity, and can be used to measure HRQoL for adolescent idiopathic scoliosis patients in Mainland China. Electronic supplementary material The online version of this article (doi:) contains supplementary material, which is available to authorized users.     

The Brisbane Burn Scar Impact Profile (child and young person version) for measuring health-related quality of life in children with burn scars: A longitudinal cohort study of reliability,validity and responsiveness

BackgroundClinical practice benefits from the measurement of health-related quality of life (HRQoL) to reflect the impact of the disease and treatments from the patient’s lived experience. The Brisbane Burn Scar Impact Profile (child and young person version, BBSIP^8?18), developed in 2013, is a self-report measure of burn scar-specific HRQoL. The purpose of the study was to test reliability, validity and responsiveness of this measure for an evaluative purpose.MethodsYoung people aged 8–18 years with burn scarring or at probable risk of burn scarring (defined as 14 days or longer to re-epithelialize) were included in a prospective, longitudinal cohort study. Data was collected at a paediatric burn centre at baseline (when ≥85% of the total body surface area re- epithelialized), then 1–2 weeks and 1-month post-baseline. Participants completed measures of HRQoL (BBSIP^8?18, Pediatric Quality of Life Inventory) and scar characteristics (Patient Observer Scar Assessment Scale) at each time-point.ResultsSixty-five participants completed the baseline testing. Forty-nine participants completed testing at 1–2 weeks post-baseline and thirty-two at 1-month post-baseline. Internal consistency of item groups ranged from Cronbach’s α 0.60 (frequency of sensory symptoms) to 0.90 (emotional reactions). All item groups expected to be stable had acceptable test-retest reliability (ICC = 0.71–0.83), except ‘mobility’ and ‘friendships and social interaction’ (ICC = 0.52 and 0.45). Construct validity was supported with 10 of 13 (77%) hypothesised correlations of change in the BBSIP^8?18 items corresponding with changes in external criterion measures. The responsiveness of 8 out of 10 item groups tested against an external criterion was supported (AUC = 0.71–0.92).ConclusionThe BBSIP^8?18 has acceptable reliability, validity and responsiveness supporting its use as an evaluative self-report measure of burn scar-specific HRQoL in the early post-acute phase after burn injury.     

Translation, cultural adaptation, initial reliability, and validation of the Kidney Disease and Quality of Life-Short Form (KDQOL-SF 1.3) in Turkey

Health-related quality of life (HRQoL) is an important factor that can interfere with treatment outcomes. The aim of the present study was cultural adaptation, validation, and translation of the Kidney Disease Quality of Life-Short Form (KDQoL-SF 1.3) questionnaire into Turkish for the Turkish population. The KDQOL-SF was translated into Turkish and back-translated into English. Patient difficulties in understanding the questionnaire were evaluated and solved by a panel of experts. Measurement properties such as reliability and validity were determined by applying the questionnaire to 82 patients on dialysis, who were randomly selected from the dialysis units of 3 educational and research hospitals in Istanbul: 65% were females; mean patient age was 51 +/- 12 years. The most common primary causes of renal failure were glomerulonephritis (47%), hypertension (31%), and diabetes (7%). The median time on dialysis among the patients was 3 years. Test and retest methods were used for reliability. The total test-retest reliability Cronbach alpha coefficient of the Turkish KDQOL-SF questionnaire was 0.84 to 0.91. These coefficients were statistically significant (P < .05) for 19 dimensions of the KDQOL-SF that ranged from 0.75 to 0.91. The Cronbach alpha coefficient was higher than 0.80 for most components. To evaluate its construct validity, the KDQOL-SF was compared with the Turkish version of the 15D, an instrument for global assessment that contains 15 items divided into 5 dimensions. The scores range from 0 to 1 (0 = worse health status, 1 = better health status). Significant correlations were observed between the scores of the similar domains of the 15D and the KDQOL-SF. The best correlations were observed between physical functioning (KDQOL-SF) and mobility (15D; r = -.810) and between emotional well-being of (KDQOL-SF), and with the mental functions of 15D; (r = -.784), sexual function (KDQOL-SF) and sexual activity (15D; r = -.781), and patient satisfaction and distress (r = -.801). These findings support the construct validity of the new Turkish adapted KDQOL-SF. This study is reporting the complete process of translation and validation of the KDQOL-SF in the literature. These results demonstrate the high reliability and validity of this questionnaire for Turkish patients on dialysis.     

The Knee Injury and Osteoarthritis Outcome Score--a multifunctional questionnaire to measure outcome in knee arthroplasty

AIM: It was the purpose of this investigation to create a German version of the Knee Injury and Osteoarthritis Outcome Score (KOOS) and to test its appropriateness in patients with advanced gonarthritis. METHOD: Reliability (test-retest reliability, internal consistency), validity (convergent construct validity and divergent construct validity), sensitivity to change as well as practicability and acceptance of this questionnaire were tested in 90 patients. RESULTS: The test-retest reliability was acceptably high for all subscales, it ranged between r = 0.65 and 0.78 and the questionnaire showed a high internal consistency in almost all of the subscales. The comparison to the results of the questionnaire "Short Form-12" (SF-12) as well as to the patients self-assessment of health status showed high concordance in nearly all subscales, however it was only moderate for the symptom scale. Furthermore the KOOS was able to show significant differences between patients and healthy controls. When testing the sensitivity to change, the KOOS could demonstrate significant improvements within 3 months and the instrument has shown to be practicable with a high acceptance by the patients. CONCLUSION: With the German version of the Knee Injury and Osteoarthritis Outcome Score a multidimensional instrument is available now to measure health status as well as therapeutic effects in patients with knee problems. Modifying the subscale "symptoms" could further optimize this questionnaire in patients with advanced gonarthritis.     

Validation assessment of the Chinese (Taiwan) version of the Gastrointestinal Quality of Life Index for patients with symptomatic gallstone disease

BACKGROUND: Symptomatic gallstone is one of the most common diseases in Taiwan. The aim of this study was to develop a Mandarin Chinese outcomes measure for the assessment on quality of life among gallstone patients. MATERIALS AND METHODS: The Gastrointestinal Quality of Life Index (GIQLI) is a valid, disease-specific measure for the evaluation of health status and treatment effectiveness for adults with chronic gastrointestinal condition. The GIQLI was translated into Mandarin Chinese using a parallel model. The Chinese (Taiwan) version of the GIQLI (CGIQLI) was administered to 102 patients with symptomatic gallstone disease in a prospective manner; the CGIQLI then was validated according to established criteria for reliability, validity, and longitudinal sensitivity. RESULTS: The CGIQLI demonstrates good test-retest reliability (r = 0.92, P = 0.001) and internal consistency (Cronbach's alpha = 0.92). The CGIQLI significantly correlates with the Mandarin Chinese (Taiwan) version of the generic 36-Item Short-Form Health Survey (SF-36). The standardized response mean for the CGIQLI total score is 0.96, indicating excellent sensitivity to clinical change in the study group. CONCLUSION: This validation study demonstrated that the performance characteristics of the CGIQLI are equivalent to the English version, the GIQLI. This study demonstrates that the CGIQLI is a valid tool to evaluate adults with chronic gastrointestinal problems among the Chinese-speaking population.     

简明烧伤健康量表中文版的信效度初步研究

目的 评价简明烧伤健康量表(BSHS-A)中文版的信度和效度. 方法 将BSHS-A翻译、修订为中文,采用简单随机抽样法,对曾存笔者单位治疗的82例烧伤康复期患者进行调查,分析其内部一致性、重测信度、内容效度和区分效度. 结果 对受试者共发放且收同量表167份,剔除不可靠量表3份,量表合格率达98.2%.量表总得分Crobach α系数为0.97,各领域、次领域Crobach α系数为0.83～0.96.20例受试者1周内重复测评结果 屁示,2次测评均有相关性(r=0.74～0.98,P<0.05或P<0.01).将其中48例伤后6个月以内接受测评的受试者分为轻中度烧伤、重度以上烧伤两部分,测评结果 显示重度以上烧伤患者总量表得分及各领域、次领域得分均低于轻中度烧伤患者(P<0.05或P<0.01). 结论 BSHS-A中文版具有良好的信效度,可以用于中国烧伤康复期患者生存质量的研究.     

The negative impact of chronic rhinosinusitis on the health-related quality of life among adult patients with cystic fibrosis

BackgroundWith improved survival in cystic fibrosis (CF) patients, it is crucial to evaluate the impact of chronic co-morbidities such as chronic rhinosinusitis (CRS). The objectives were 1) To determine the prevalence of CRS with a large series of CF patients 2) To evaluate the impact of CRS on the Health-Related Quality of Life (HRQoL) of CF patients and 3) To compare CRS-specific, CF-specific and general HRQoL instruments.MethodsConsecutive CF patients from the Toronto Adult Cystic Fibrosis Centre were recruited between March 2018 and January 2020. Participants completed the 22-Item Nasal Outcome Test (SNOT-22), Cystic Fibrosis Questionnaire-Revised for adolescents and adults over 14 years of age (CFQ-R), Cystic Fibrosis Quality of Life Evaluative Self-administered Test (CF-QUEST) and the 36-Item Short Form Survey (SF-36). HRQoL scores were correlated using Spearman's correlation coefficients.ResultsOut of 195 patients eligible for analysis, the prevalence of CRS with positive endoscopic findings was 42.6% (95% confidence interval: 35.5–49.8%). CRS patients reported significantly lower HRQoL with higher SNOT-22 scores and lower scores in the respiratory domain of CFQ-R and physical health domains of CF-QUEST and SF-36. The physical (ρ= ?0.63) and mental (ρ= ?0.66) domains of SF-36 and CF-QUEST (ρ= ?0.76) had a strong correlation with SNOT-22. Higher scores of SNOT-22 nasal subdomains correlated with lower scores of SF-36, CFQ-R and CF-QUEST.ConclusionCRS is a prevalent co-morbidity of CF patients, which significantly reduces HRQoL. SNOT-22, CFQ-R, CF-QUEST and SF-36 were strongly correlated. Severity of sinonasal symptoms have a strong correlation with HRQoL in CF patients.     

Measuring perceived communicative ability after traumatic brain injury: reliability and validity of the La Trobe Communication Questionnaire

OBJECTIVE: Further psychometric evaluation of a measure designed to assess communication ability after traumatic brain injury (TBI). DESIGN: Internal consistency, test-retest reliability, and validity for self-report and close-other versions of the tool were evaluated. PARTICIPANTS: Eighty-eight adults with severe TBI (mean posttraumatic amnesia 53.12 days) and 71 close others (relatives or friends). MEASURE: The La Trobe Communication Questionnaire (LCQ), a 30-item questionnaire that measures cognitive-communication ability from multiple perspectives. RESULTS: Internal consistency coefficients were above 0.9 and test-retest reliability exceeded 0.80. The questionnaire was sensitive to the effect of severity of injury. CONCLUSION: The La Trobe Communication Questionnaire is a promising tool for measuring perceived communication ability in adults with severe TBI.     

Quality of life for children with persistent sinonasal symptoms.

OBJECTIVE: The goal was to validate the SN-5 survey as a measure of longitudinal change in health-related quality of life (HRQoL) for children with persistent sinonasal symptoms. DESIGN AND SETTING: We conducted a before and after study of 85 children aged 2 to 12 years in a metropolitan pediatric otolaryngology practice. Caregivers completed the SN-5 survey at entry and at least 4 weeks later. The survey included 5 symptom-cluster items covering the domains of sinus infection, nasal obstruction, allergy symptoms, emotional distress, and activity limitations. RESULTS: Good test-retest reliability (R = 0.70) was obtained for the overall SN-5 score and the individual survey items (R >/= 0.58). The mean baseline SN-5 score was 3.8 (SD, 1.0) of a maximum of 7.0, with higher scores indicating poorer HRQoL. All SN-5 items had adequate correlation (R >/= 0.36) with external constructs. The mean change in SN-5 score after routine clinical care was 0.88 (SD, 1.19) with an effect size of 0.74 indicating good responsiveness to longitudinal change. The change scores correlated appropriately with changes in related external constructs (R >/= 0.42). CONCLUSIONS: The SN-5 is a valid, reliable, and responsive measure of HRQoL for children with persistent sinonasal symptoms, suitable for use in outcomes studies and routine clinical care.     

中文版欧洲五维健康量表在慢性肾脏病患者中的信效度研究

目的:评价中文版欧洲五维量表(the euroqol group’s 5-domain 3 level questionnaire,EQ-5D-3L)应用于成年慢性肾脏病患者的信度和效度。方法:应用EQ-5D-3L量表对450例慢性肾脏病(chronic kidney disease,CKD)患者进行面对面访谈,2月后随机抽取45例患者进行重测。结果:信度检验显示健康描述系统内部一致性信度Cronbach’α系数为0.815,五维度及可视化评分(visual analogue scale,VAS)的重测信度在0.150～0.450之间;效度检验结果显示健康描述系统中的行动能力、自我照顾、日常活动三个维度分别解释总变异方差的20.846%、20.526%、20.367%,其累计贡献率为61.758%,且量表内部健康描述系统中五维度与VAS的相关系数r依次为:-0.475、-0.415、-0.517、-0.494和-0.444。结论:中文版EQ-5D-3L具有较好的信度和效度,可用于评价慢性肾脏病患者的生活质量。     

Measuring physical functioning in children with spinal impairments with computerized adaptive testing

BACKGROUND: The purpose of this study was to assess the utility of measuring current physical functioning status of children with scoliosis and kyphosis by applying computerized adaptive testing (CAT) methods. Computerized adaptive testing uses a computer interface to administer the most optimal items based on previous responses, reducing the number of items needed to obtain a scoring estimate. METHODS: This was a prospective study of 77 subjects (0.6-19.8 years) who were seen by a spine surgeon during a routine clinic visit for progress spine deformity. Using a multidimensional version of the Pediatric Evaluation of Disability Inventory CAT program (PEDI-MCAT), we evaluated content range, accuracy and efficiency, known-group validity, concurrent validity with the Pediatric Outcomes Data Collection Instrument, and test-retest reliability in a subsample (n = 16) within a 2-week interval. RESULTS: We found the PEDI-MCAT to have sufficient item coverage in both self-care and mobility content for this sample, although most patients tended to score at the higher ends of both scales. Both the accuracy of PEDI-MCAT scores as compared with a fixed format of the PEDI (r = 0.98 for both mobility and self-care) and test-retest reliability were very high [self-care: intraclass correlation (3,1) = 0.98, mobility: intraclass correlation (3,1) = 0.99]. The PEDI-MCAT took an average of 2.9 minutes for the parents to complete. The PEDI-MCAT detected expected differences between patient groups, and scores on the PEDI-MCAT correlated in expected directions with scores from the Pediatric Outcomes Data Collection Instrument domains. CONCLUSIONS: Use of the PEDI-MCAT to assess the physical functioning status, as perceived by parents of children with complex spinal impairments, seems to be feasible and achieves accurate and efficient estimates of self-care and mobility function. Additional item development will be needed at the higher functioning end of the scale to avoid ceiling effects for older children. LEVEL OF EVIDENCE: This is a level II prospective study designed to establish the utility of computer adaptive testing as an evaluation method in a busy pediatric spine practice.     

Validation of the Spanish Version of the Revised Cystic Fibrosis Quality of Life Questionnaire in Adolescents and Adults (CFQR 14+ Spain)

BackgroundThe aim of this study was to assess the validity and reliability of the Spanish version of the revised disease-specific health related quality of life questionnaire for adolescents and adults with cystic fibrosis (CFQR 14+ Spain).Patients and methodsA total of 43 cystic fibrosis (CF) patients completed the CFQR 14+ Spain. Forced expiratory volume in 1 second, in percentage of predicted - FEV₁ (%) -, number of respiratory exacerbations, 6-minute walk test, Bhalla score (based on computerized tomography of the chest), fat-free mass index, body mass index (BMI), faecal fat and St George's Respiratory Questionnaire were included as measurements of health status.ResultsTen out of the twelve scales had alpha coefficients above 0.70. Test-retest correlations (Spearman) ranged from 0.49 to 0.95 and they were significant in all scales. Intraclass correlations ranged from 0.47 to 0.95 (ten out of the twelve scales were >0.70) forty out of the fifty items have correlations between items and scale above 0.70. All the CFQR 14+ scales, except the digestive symptoms scale, discriminated significantly between patients with mild, moderate and severe disease (according to FEV₁ [%]). Other respiratory parameters also discriminated significantly between patients with mild-moderate and severe disease. Only some scales discriminated significantly between nourished and malnourished patients. All of the scales met standards for floor effects (<15% of the responders with the lowest score) but not for ceiling effects (only five out of the twelve).ConclusionThe Spanish CFQR 14+ (Spain) is a reliable and valid instrument for measuring the health-related quality of life in Spanish adolescents and adults with CF, though with the exception of a few of its subscales.     

Test-retest reliability,minimal detectable change and minimal clinically important differences in modified shuttle walk test in children and adolescents with cystic fibrosis

BackgroundIn youths with cystic fibrosis (CF) the modified shuttle walk test (MSWT) has been shown to be useful for assessing exercise tolerance; however, no studies to date have evaluated the reliability of MSWT, the minimal detectable change (MDC) and the minimal clinically important differences (MCID) for the MSWT distance for children and adolescents with CF.MethodsTest-retest reliability: 35 CF patients and 34 healthy controls performed two MSWTs (separated by 2–4 days). MCID: 33 patients were invited to participate in a 6-week home-based exercise program consisting of 30–60-min sessions, 5 days a week.ResultsThe test-retest reliability of the MSWT distance for children and adolescents with CF was excellent, obtaining a MDC₉₀ and MDC₉₅ of 97.08 m and 115.32 m, respectively. The test-retest reliability also was excellent in healthy controls, founding a MDC₉₀ and MDC₉₅ of 69.12 m and 82.11 m, respectively. The ROC curve analysis established (with a sensitivity of 82% and specificity of 76%) that a change of 60 m represented MCID.ConclusionsThe MSWT is a reliable tool to measure of exercise tolerance in children/adolescents with CF and those without CF. We propose a change in the score of at least 97.08 m (MDC₉₀) as the most appropriate value for assessing the exercise response of children and adolescents with CF, given that this value exceeds the MCID based on the children's perception.