Validation of the Brazilian version of Chronic Liver Disease Questionnaire

Purpose

The aim of this study was to validate the Chronic Liver Disease Questionnaire (CLDQ) for use in Brazilian population.

Method

A total of 200 patients with chronic liver disease and varying disease severity answered a socio-demographic questionnaire, t CLDQ, and the Medical Outcome Study Short Form 36 (SF-36). Patients returned in 1–15 days to answer CLDQ again. The Cronbach’s alpha of the total CLDQ score was 0.95 and fluctuated between 0.69 and 0.83 in its six domains.

Results

The intra-class correlation between total CLDQ scores in two evaluations was 0.97 and in all domains was >0.93. CLDQ was moderately correlated with the SF-36, 0.63 (total CLDQ vs. vitality, SF-36), 0.62 (CLDQ and mental health, SF-36), 0.62 (preoccupation, CLDQ, vs. General Health, SF-36), 0.59 (fatigue, CLDQ, vs. vitality, SF-36), 0.59 (activity, CLDQ, vs. vitality, SF-36), and 0.59 (fatigue, CLDQ, vs. mental health, SF-36). The highest scores were found in non-cirrhotic group. Child A patients had higher average scores than Child B and C groups in all domains, while patients with MELD <15 scored higher than patients with MELD ≥15.

Conclusion

CLDQ-BR was validated in Brazilian population and was appropriate for use in patients with liver disease of different etiologies and degrees of severity.     

Mapping chronic liver disease questionnaire scores onto SF-6D utility values in patients with primary sclerosing cholangitis

Purpose

The chronic liver disease questionnaire (CLDQ) is a frequently used liver-specific quality of life instrument, but it does not provide information on preference-adjusted health status, which is essential for cost-utility analysis. We aimed to develop a mapping function deriving utilities from the CLDQ in primary sclerosing cholangitis (PSC).

Methods

Short form-6D (SF-6D) utilities were calculated from SF-36 data collected in a recent prospective study in which unselected patients with PSC also completed the CLDQ. Ordinary least squares (OLS), generalized linear, median, and kernel regression analyses were employed to devise a mapping function predicting utilities. This was validated in three random subsamples of the cohort and in a separate sample of PSC patients following liver transplantation. Adjusted R ² and root-mean-square error (RMSE) as well as Pearson’s r coefficients and mean absolute errors between predicted and observed values were used to determine model performance.

Results

Decompensated liver disease and fatigue, systemic symptoms, and emotional distress, assessed with the CLDQ, were related to worse SF-6D utilities. The final OLS prediction model explained 66.3 % of the variance in the derivation sample. Predicted and observed utilities were strongly correlated (r = 0.807, p < 0.001), but the mean absolute error (0.0604) and adjusted RMSE (10.6 %) were of intermediate size. Similar model characteristics were observed after employment of generalized linear and median regression models and at validation.

Conclusions

A model has been constructed, showing good validity predicting SF-6D utilities from CLDQ scores at the group level in PSC. Further testing is required to externally validate the model.

     

Preliminary reliability and validity of Persian version of the Family Dermatology Life Quality Index (FDLQI)

Purpose

Family Dermatology Life Quality Index (FDLQI) is an instrument for assessing the quality of life of family members of dermatologic patients. The aim of this study was to describe the cultural adaptation of this questionnaire and to assess psychometric properties of the Persian version.

Methods

At first, the questionnaire was translated into Persian, and then back-translation was performed. The whole cycle was repeated until a consensus was reached about the optimal translation. In the next step, cognitive debriefing was performed, and after approval of the Persian version by FDLQI developers, it was distributed among 100 family members of dermatological patients in order to evaluate its validity and reliability.

Results

Mean age of participants was 37.1 years (±12.3). Mean score of FDLQI was 15.4 (±5.5) with maximum and minimum scores of 30 and 6, respectively. The quality of life of studied participants showed no significant difference based on age-group, sex, educational level and the family relationship. Cronbach’s alpha was calculated as 0.87. Exploratory factor analysis revealed a one-factor solution that accounted for 40.7 % of the variance. The unidimensional model was supported by confirmatory factor analysis.

Conclusions

The results of the present study showed that the Persian version of FDLQI has acceptable factorial validity and internal consistency reliability.     

Reliability and validity of the English (Singapore) and Chinese (Singapore) versions of the Short-Form 36 version 2 in a multi-ethnic Urban Asian population in Singapore

Purpose

We aimed to evaluate the measurement properties of the Singapore English and Chinese versions of the Short-Form 36 version 2 (SF-36v2) Questionnaire, an improved version of the widely used SF-36, for assessing health-related quality of life (HRQoL) in a multi-ethnic urban Asian population in Singapore.

Methods

SF-36v2 scores and data on medical history, demographic and lifestyle factors from the Singapore Prospective Study Programme were analyzed. Convergent and divergent validity, internal consistency, floor and ceiling effects, known group validity and factor structure of the SF-36v2 were assessed for the English and Chinese versions, respectively.

Results

Complete data for 4,917 participants (45.8 %) out of 10,747 eligible individuals were analyzed (survey language: 4,115 English and 802 Chinese). Item-scale correlations exceeded 0.4 for all items of the English SF-36v2 and for all except one item of the Chinese SF-36v2 (bathe and dress: item-scale correlation: 0.36). In the English SF-36v2, Cronbach’s alpha exceeded 0.70 for all scales. In the Chinese SF-36v2, Cronbach’s alpha exceeded 0.7 on all scales except social functioning (Cronbach’s alpha: 0.68). For known groups validity, respondents with chronic medical conditions expectedly reported lower SF-36v2 score on most English and Chinese SF-36v2 scales. In confirmatory factor analysis, the Singapore three-component model was favored over the United States two-component and Japan three-component models.

Conclusions

The English and Chinese SF-36v2 are valid and reliable for assessing HRQoL among English and Chinese-speaking Singaporeans. Test–retest reliability and responsiveness of the English and Chinese SF-36v2 in Singapore remain to be evaluated.     

Validation of the International Prostate Symptom Score in Chinese males and females with lower urinary tract symptoms

Objectives

To evaluate the translation of the IPSS (Hong Kong Chinese version 1) and to assess the applicability, validity, reliability and sensitivity of the instrument in both males and females with LUTS in Chinese population.

Methods

The translation of the IPSS (Hong Kong Chinese version 1) was reviewed through back translation. Modifications were made, resulting in the development of The IPSS (Hong Kong Chinese version 2). The content validity was assessed by contend validity index. 233 subjects with LUTS were recruited in Hong Kong primary care settings for pilot psychometric testing. The construct validity was assessed by corrected item-total correlation and Pearson’s correlation test against ICIQ-UI SF, IIQ-7 and SF-12 v2. The reliability was assessed by the internal consistency (Cronbach’s Alpha coefficient) and test –retest reliability (Intraclass correlation coefficient). The Sensitivity was determined by performing known group comparisons by independent T-test.

Results

The content validity index for all items could reach 1. Corrected item-total correlation scores were ≥0.4 for four symptom questions (feeling of incomplete bladder emptying, intermittency, weak stream and straining). Overall, the total symptom score moderately correlated with ICIQ-UI SF. The quality of life score moderately correlated with the IIQ-7 but weakly correlated with SF-12 v2. Overall, the reliability of the IPSS (Hong Kong Chinese version 2) was acceptable (Cronbach’s Alpha coefficient?=?0.71, ICC of the symptom questions =0.8, ICC of the quality of life question =0.7). The symptoms questions and quality of life questions of the IPSS (Hong Kong Chinese versions 2) were sensitive in detecting differences between groups.

Conclusions

The IPSS (Hong Kong Chinese version 2) is a valid, reliable and sensitive measure to assess Chinese females and males with lower urinary tract symptoms. The IPSS quality of life question is more sensitive than the generic quality of life measure to differentiate subgroups.     

Psychometric properties of KIDSCREEN health-related quality of life questionnaire in Iranian adolescents

Introduction

Health-related quality of life (HRQOL), which is receiving increasing attention, is a multidimensional concept that encompasses different areas including the physiological, psychological, social, and spiritual aspects of life. The KIDSCREEN-52 questionnaire is designed to measure the HRQOL of 8–18-year-old children and adolescents. The aim of this study was to develop a Persian version of KIDSCREEN-52 and analyze the validity and reliability of the translated version.

Method

The KIDSCREEN-52 was translated into Persian in keeping with the international cross-cultural translation guidelines. A cross-sectional study was performed in the city of Tehran during 2012–2013. 328 students ranging in age from 8 to 18 years were enrolled in the study. The reliability for each dimension was estimated using Cronbach’s alpha coefficient. To examine the validity of the questionnaire, a confirmatory factor analysis (CFA) was conducted.

Results

The Cronbach’s alpha coefficient was higher than 0.7 in all ten dimensions except self-perception. Validity of this questionnaire was confirmed by CFA. (Relative chi square (χ ²/df) = 1.73; root-mean-square error of approximation = 0.047; normed fit index = 0.93; Tucker–Lewis index = 0.97; comparative fit index = 0.97; and relative fit index = 0.92.)

Conclusion

The Persian version of KIDSCREEN-52 is reliable and valid and can be used as a self-administered instrument for measuring HRQOL in children and adolescents in Iran.     

Psychometric properties of the Chinese quality of life instrument (HK version) in Chinese and Western medicine primary care settings

Background

The Chinese Quality of Life Measure (ChQOL) had only been validated on a small number of selected subjects in Hong Kong and had never been tested in the Western medicine (WM) primary care setting.

Aims and objectives

To test the psychometrics properties of ChQOL(HK version) in both TCM and WM general outpatient clinics.

Methods

Three samples of Chinese adult patients [(1) 569 consulting TCM clinics for episodic illnesses; (2) 524 consulting WM clinics for episodic illnesses; (3) 205 consulting WM clinics for chronic disease follow-up] in Hong Kong were invited to complete the ChQOL(HK version) and the SF-36 Health Survey during their consultations and 2 weeks after consultations. The scaling assumptions, factor structure, convergent construct validity, reliability, responsiveness, and discriminatory power of the ChQOL were evaluated.

Results

Majority of items satisfied the scaling assumptions. A two instead of 3-factor structure was found with physical form and emotion facets loading on one factor. Convergent construct validity was confirmed with moderate correlations with SF-36 scores. Internal consistency and test?Cretest reliability were satisfactory. The ChQOL(HK version) was able to detect significant improvements 2?weeks after consultations, and it was able to discriminate between groups with different illness severity, age, and sex.

Conclusion

The ChQOL(HK version) was shown to have satisfactory validity, reliability, discriminatory power, and responsiveness in both TCM and Western medicine primary care settings. The validity of the 3-domain scaling structure needs further evaluation.     

Cross-cultural evaluation of the French version of the LEIPAD, a health-related quality of life instrument for use in the elderly living at home

Purpose

To cross-culturally adapt a French version of the LEIPAD, a self-administered questionnaire assessing the health-related quality of life (HRQoL) in adults aged 65 years and over living at home, and to evaluate its psychometric properties.

Methods

After having translated LEIPAD in accordance with guidelines, we studied psychometric properties: reliability and construct validity—factor analysis, relationships between items and scales, internal consistency, concurrent validity with the Medical Outcome Study Short-Form 36 and known-groups validity.

Results

The results obtained in a sample of 195 elderly from the general population showed very good acceptability, with response rates superior to 93 %. Exploratory factor analysis extracted eight factors providing a multidimensionality structure with five misclassifications of items in the seven theoretical scales. Good internal consistency (Cronbach’s alpha ranging from 0.73 and 0.86) and strong test–retest reliability (ICCs higher than 0.80 for six scales and 0.70 for one) were demonstrated. Concurrent validity with the SF-36 showed small to strong expected correlations.

Conclusion

This first evaluation of the French version of LEIPAD’s psychometric properties provides evidence in construct validity and reliability. It would allow HRQoL assessment in clinical and common practice, and investigators would be able to take part in national and international research projects.     

Demonstration of two types of fatigue in subjects with chronic liver disease using factor analysis

Purpose

The purpose of this investigation was to determine if it was possible to separate fatigue self-reports into two distinct types of fatigue symptom clusters in research subjects with chronic liver disease (CLD). It was hypothesized that when items from the Medical Outcomes Study Short-Form (SF-36v2) are combined with items from the Fatigue Severity Scale (FSS), these distinct factors will emerge.

Methods

Confirmatory and exploratory factor analyses from data collected in a prospective, natural history study of CLD patients were conducted. Items were selected from the SF-36v2 and the FSS for entry into the factor analyses. In order to establish convergent and discriminant validity, derived factor scores were correlated with subscale scores of the Human Activity Profile (HAP), Mental Component Score (MCS) from the SF-36v2, and the Emotional Functioning Subscale of the Chronic Liver Disease Questionnaire (CLDQ-EF).

Results

106 participants with CLD were included (50% female; age: 51?±?10). Two factors were identified. The factors included one that clustered around questions addressing fatigue related to physical activity (peripheral fatigue) and the other to the questions addressing generalized fatigue that did not require physical tasks to produce the fatigue (central fatigue). The standardized factor loadings of all items were greater than 0.6 on their underlying constructs. Moreover, all factor loadings are significant at p?<?0.01. Peripheral fatigue was related to HAP (r?=?0.26, r?=?0.24, p?<?0.01), as was central fatigue (r?=??0.34, r?=??0.33, p?<?0.01). Central fatigue was related to MCS and CLDQ-EF (r?=??0.60; r?=??0.63, p?<?0.01), whereas peripheral fatigue was not (r?=?0.07, p?>?0.40). We then tested the original scales to determine if the newly created factors correlated better with the validity measures. The full FSS did not correlate as well as the newly created central fatigue scale, while the original peripheral fatigue scale (the SF-36v2 physical functioning) was more related to HAP than the newly created scale.

Conclusions

In individuals with CLD, two separate factors pertaining to fatigue were identified. This recognition of the multifaceted nature of fatigue may help increase the specificity of self-reports of fatigue and lead to treatments that can specifically address the underlying factors contributing to fatigue.

     

Measuring health-related quality of life: psychometric evaluation of the Tunisian version of the SF-12 health survey

Background

The 12-item short-form health survey (SF-12) was developed as a shorter alternative to the SF-36 for use in large-scale studies as an applicable instrument for measuring health-related quality of life. The main purpose of this study was to evaluate the psychometric properties of the Tunisian version of the SF-12.

Methods

A stratified representative sample (N = 3,582) of the general Tunisian population aged 18 years and over was interviewed. SF-12 summary scores were derived using the standard US algorithm. Factor analysis was used to confirm the hypothesized component structure of the SF-12 items. Reliability was estimated using internal consistency, and construct validity was investigated with “known groups” validity testing and via convergent and divergent validity.

Results

SF-12 summary scores distinguished well, and in the expected manner, between groups of respondents on the basis of gender, age, education and socioeconomic status, thus providing evidence of construct validity. Mean scores in the total sample were 50.11 (SD 8.53) for the physical component summary (PCS) score and 47.96 (SD 9.82) for the mental component summary (MCS) score. The results showed satisfactory internal consistency and acceptable convergent validity for both summary scores. Cronbach’s α coefficient for PCS-12 and MCS-12 was 0.73 and 0.72, respectively. Known groups comparison showed that the SF-12 discriminated well between groups of respondents on the basis of gender, age, education and socioeconomic status. In addition, no floor or ceiling effects at baseline were observed. The PCA confirmed the two-factor structure of the SF-12 items. Items belonging to the physical component correlated more strongly with the PCS-12 than those with the MCS-12. Similarly, items belonging to the mental component correlated more strongly with the MCS-12 than those with the PCS-12.

Conclusion

The findings suggest that the SF-12 appears to be a valid and reliable measure that can be used for measuring of population health status. However, for optimal measurement, modifications to traditional scoring methods for the SF-12 should be considered.     

Spanish validation of the "Kidney Transplant Questionnaire": a useful instrument for assessing health related quality of life in kidney transplant patients

Background

There is a growing interest in the evaluation of Health Related Quality of Life (HRQoL) among patients undergoing Renal Replacement Therapy. In Spain, no specific questionnaire exists for kidney transplant patients. Here we present the Spanish validation of the first specific HRQoL assessment tool: the kidney transplant questionnaire (KTQ).

Methods

Prospective study of 31 patients on transplant waiting list who received the first kidney. Patients were evaluated before transplant and after 1, 3, 6 and 12 months, using the KTQ and the SF-36 Health Survey. Feasibility, validity, reliability, and sensibility to change were evaluated.

Results

Mean time of administration of the KTQ was 12 minutes. Correlation coefficients among KTQ dimensions range between 0.32 and 0.72. Correlation coefficients of KTQ dimensions with SF-36 PCS were low (r<0.4), and with SF-36 MCS were moderate-high (r>0.4) except for Physical Symptom dimension (r = 0.33). Cronbach's Alpha was satisfactory for all KTQ dimensions (Physical Symptoms = 0.80; Fatigue = 0.93; Uncertainty/Fear = 0.81; Emotional= 0.90) except Appearance (0.69). Intraclass correlation coefficients ranged between 0.63 and 0.85, similar to those of the original KTQ version.

Conclusions

Results of validation study show that feasibility, validity, reliability and sensibility to change of the Spanish version of the KTQ are similar to those of the original version.     

Reliability and validity of the Spanish version of the Child Health and Illness Profile Child-Edition/Child Report Form (CHIP-CE/CRF)

Objectives

To assess the reliability and validity of the Spanish version of the CHIP-CE/CRF.

Methods

Cross-sectional study was conducted in a representative sample of primary school children in Spain. Children were administered the Spanish version of the CHIP-CE/CRF. The Achenbach Child Behavioral Checklist was given to parents.

Results

The overall response rate was 75% (n?=?979). Internal consistency was >0.70 for 3 out of 5 domains, and the intraclass correlation coefficient for test?Cretest stability ranged from 0.69 to 0.80. Confirmatory factor analysis replicated the original model. Younger children scored higher in Satisfaction than older children. Girls scored lower in Comfort but higher in Risk Avoidance than boys.

Conclusions

The Spanish version of the CHIP-CE/CRF has shown acceptable reliability and validity, similar to the properties of the original US version. Future studies should analyze the instrument??s sensitivity to change.     

Validity of the Thai EQ-5D in an occupational population in Thailand

Purpose

To assess the construct validity of the Thai EuroQoL (EQ-5D) among an occupational population in Thailand.

Methods

Data were derived from a large cohort study among employees of the Electricity Generating Authority of Thailand. In 2008 and 2009, 4,850 participants completed the Thai EQ-5D and Short-Form 36 version 2 (SF-36v2). Thai preferences weights were used to convert EQ-5D health states into EQ-5D index scores. Construct validity of the Thai EQ-5D was examined by specifying and testing hypotheses about the relationships between the EQ-5D, SF-36v2, and participants’ demographic and medical characteristics.

Results

Construct validity of the Thai EQ-5D was supported by expected relationships with SF-36v2 scale and summary scores. For example, SF-36v2 scores on the mental health scale were much lower for participants who reported having problems on the EQ-5D anxiety/depression dimension compared to those reporting no problems (mean norm-based SF-36v2 scores: 52.9 vs. 41.8, p < 0.001). Additionally, reporting a problem in a given EQ-5D dimension was generally associated with lower SF-36v2 summary scores. The EQ-5D index score distinguished between groups of participants in the expected manner, on the basis of sex, age, education and self-reported health, thus providing evidence of known-groups validity.

Conclusion

The study demonstrated good construct validity of the Thai EQ-5D in a large occupational population in Thailand.     

Exploring psychometric properties of the SF-6D,a preference-based health-related quality of life measure,in the context of spinal cord injury

Purpose

The validity of the SF-6D, a preference-based measure of health-related quality of life, is not well explored in the context of spinal cord injury (SCI). The aim of this analysis was to assess appropriate measurement properties of the SF-6D in a sample of individuals living with SCI.

Methods

Longitudinal data from the Rick Hansen Spinal Cord Injury Registry were used. Responses to the 36-item short-form health survey were transformed into SF-6D utility scores. We investigated practicality, floor and ceiling effects, and responsiveness to change. Responsiveness to change was explored using three different anchors that reflected changes in self-reported health, functional independence, and life satisfaction. Discriminative validity was assessed by ten a priori defined hypotheses, with a distinction made between ‘strong’ and ‘weak’ hypotheses.

Results

Three hundred and fifty-eight individuals with SCI were included in this analysis. Practicality was deemed acceptable based on a completion rate of 94 %. The SF-6D showed low responsiveness to detect important health changes over time, and differences in responsiveness were found between individuals with paraplegia and tetraplegia. All five strong hypotheses and three weak hypotheses were confirmed.

Conclusion

The SF-6D demonstrated good practicality and discriminative validity in this sample. The failure to detect self-reported and clinically important health changes requires further consideration. Comparative performance of the SF-6D (i.e., how the SF-6D performs against other preference-based measures) is unknown in the SCI context and requires further research.     

Adaptation and validation of the Spanish version of the Patient-Oriented Prostate Utility Scale (PORPUS)

Objective

The Patient-Oriented Prostate Utility Scale (PORPUS) is a combined profile and utility-based quality of life measure for prostate cancer patients. Our objectives were to adapt the PORPUS into Spanish and to assess its acceptability, reliability, and validity.

Methods

The PORPUS was adapted into Spanish using forward and back translations and cognitive debriefing. PORPUS was administered jointly with the SF-36 and the Expanded Prostate Index Composite (EPIC) to 480 Spanish prostate cancer patients treated with radical prostatectomy or radiotherapy. The Spanish PORPUS scores’ distribution and reliability were examined and compared with the original instrument. To evaluate construct validity, relationships were assessed between PORPUS and other instruments (testing hypotheses of the original PORPUS study), and among known groups defined by side effect severity.

Results

Reliability coefficient was 0.76 (similar to the original PORPUS’ 0.81). Spanish PORPUS items presented correlations ranging 0.57–0.88 with the corresponding EPIC domains, as in the original PORPUS study (0.60–0.83). Both PORPUS-P and PORPUS-U showed significant differences and large effect sizes (0.94–1.90) when comparing severe versus no problem groups on urinary, bowel, sexual and hormonal side effects defined by EPIC.

Conclusions

A conceptually equivalent Spanish version was obtained, with high reliability and good construct validity, similar to the original Canadian PORPUS version. It can therefore be used to measure health-related quality of life and utilities in Spanish prostate cancer patients.     

Validation of the Dutch version of the VascuQol questionnaire and the Amsterdam linear disability score in patients with intermittent claudication

Purpose

To assess the reliability and validity of the Dutch version of the vascular quality of life questionnaire (VascuQol) and the AMC Linear Disability Score (ALDS) in patients with stable intermittent claudication (IC).

Methods

During a 5-month period we performed a prospective study in which we included every patient with stable IC, who visited our vascular surgery outpatient clinic and consented to participate. Forty consecutive patients filled in the Dutch VascuQol, the ALDS, and Short Form-36 (SF-36). Twenty patients filled in the same questionnaires after 4?weeks. Internal reliability consistencies were expressed as Cronbach??s ??. Test?Cretest reliability was expressed as intraclass correlation coefficients (ICC). Construct validity was expressed as Spearman rho correlations between SF-36 and relevant domains of Dutch VascuQol and the ALDS.

Results

Internal reliability consistencies were, respectively, good and excellent for the total scores of VascuQol, SF-36, and ALDS (Cronbach??s ??. 0.87, 0.89, and 0.92). Test?Cretest reliability was excellent for the total VascuQol scores [ICC 0.91 (95% CI, 0.78?C0.96)], and for the ALDS [ICC 0.90 (95% CI, 0.76?C0.96)]. Spearman correlations between VascuQol, ALDS, and SF-36 domains varied from r?=?0.34?C0.79.

Conclusion

The Dutch VascuQol is a valid and reliable questionnaire for assessment of Qol in patients with IC. This study confirms the good clinimetric properties of the ALDS for assessing disability in patients with IC.     

Single-item electronic administration of the SF-36v2 Health Survey

Purpose

To evaluate the psychometric properties and factor structure of a computerized electronic version of the SF-36v2 Health Survey (SF-36v2) with items administered one-per-page versus the traditional grid format used in the paper-and-pencil version in a sample of physician-diagnosed headache patients.

Methods

Patients (N = 180) completed the SF-36v2 administered as part of a broader study of health outcomes. Scaling assumptions, reliability, factor structure, and the tool’s ability to discriminate between headache pain severity groups were examined.

Results

Frequency distributions showed notable ceiling effects for the role emotional, social functioning, physical functioning, and role physical scales, but negligible (<1.2%) floor effects for any of the scales. Internal consistency reliability coefficients ranged from 0.81 to 0.95 for the eight health domains. Items passed tests of internal consistency and discriminant validity. Principal components’ analyses confirmed the 2-factor structure; the pattern of correlations across scales was consistent with expectations for the physical and mental health components. As expected, patients with severe headache pain had lower mean SF-36v2 scores than those with mild or moderate pain. No significant score differences were observed between mild and moderate pain severity groups.

Conclusions

Single-item electronic administration of the SF-36v2 is reliable and valid for use with headache patients.     

Gastrointestinal (GI)-Specific patient reported outcomes instruments differentiate between renal transplant patients with or without GI symptoms: results from a South American cohort

Background

The objective of this study was to validate the Impact of a Child with Congenital Anomalies on Parents (ICCAP) questionnaire. ICCAP was newly designed to assess the impact of giving birth to a child with severe anatomical congenital anomalies (CA) on parental quality of life as a result of early stress.

Methods

At 6 weeks and 6 months after birth, mothers and fathers of 100 children with severe CA were asked to complete the ICCAP questionnaire and the SF36. The ICCAP questionnaire measures six domains: contact with caregivers, social network, partner relationship, state of mind, child acceptance, and fears and anxiety. Reliability (i.e. internal consistency and test-retest) and validity were tested and the ICCAP was compared to the SF-36.

Results

Confirmatory factor analysis resulted in 6 six a priori constructed subscales covering different psychological and social domains of parental quality of life as a result of early stress. Reliability estimates (congeneric approach) ranged from .49 to .92. Positive correlations with SF-36 scales ranging from .34 to .77 confirmed congruent validity. Correlations between ICCAP subscales and children's biographic characteristics, primary CA, and medical care as well as parental biographic and demographic variables ranged from -.23 to .58 and thus indicated known-group validity of the instrument. Over time both mothers and fathers showed changes on subscales (Cohen's d varied from .07 to .49), while the test-retest reliability estimates varied from .42 to .91.

Conclusion

The ICCAP is a reliable and valid instrument for clinical practice. It enables early signaling of parental quality of life as a result of early stress, and thus early intervention.     

Impaired renal function is associated with worse self-reported outcomes after kidney transplantation

Purpose

We sought to determine the association between health-related quality of life (HRQOL) and graft function in renal transplant recipients.

Design and Methods

We enrolled 577 kidney transplant recipients aged 18–74 years (response rate 87%). Recipients with multiple or multi-organ transplantation, creatine kinase >200 U/L, acute renal failure or cellular rejection (n = 64), and without creatinine assessments in 3 months pre-enrollment (n = 127) were excluded. The questionnaire included Euro QOL 5 Dimensions (EQ-5D), Health Utility Index III (HUI-III), Kidney Disease Quality of Life-36 (KDQOL36) which include a generic section (RAND SF-12). Data on medical conditions, therapy regimens, and biochemistry results were extracted from clinical charts. We used general linear models adjusted for demographic, socioeconomic, and clinical characteristics to assess the association between HRQOL and severity of chronic kidney disease (CKD).

Results

Patients with more advanced CKD were more likely to be African-American, covered by public insurance, more likely to have shorter time after transplantation, higher phosphorus and lower hemoglobin, serum albumin, and calcium levels. All HRQOL scales were inversely associated with CKD severity. All associations were robust to adjustment for possible confounders.

Conclusions

Several health-related quality of life dimensions may be affected by poor renal function after transplantation.     

Quality-of-life loss of people admitted to burn centers, United States

Purpose

To estimate quality-of-life loss per serious burn survivor in a large U.S. cohort.

Methods

Longitudinal functional assessments of all 1,587 people receiving primary treatment in 5 burn centers between 2000 and 2009 included pre-burn (retrospective), at time of discharge, and 6, 12, and 24 months post-injury. We assessed adults with RAND Short Form (SF) 12 and children with SF-10 or Child Health Questionnaire, the child surveys scored using standard norms-based scoring. A literature review identified 20 quality-adjusted life year utility scorings for SF-12 and 27 scorings for EQ-5d response distributions predicted from SF-12 scores. We computed composite scores for each patient and time period by applying 32 scorings that met quality/non-duplication criteria.

Results

Mean quality-of-life scores were 0.805 4 weeks pre-burn, 0.562 at discharge, rebounded through 1 year, and stabilized at 0.735 (0.750 for TBSA burned below 25 %, 0.722 for TBSA burned of 25–50 %, and 0.695 for larger burns). As a percentage of initial levels, burns reduced short-term quality of life by 30 %. Long-term loss averaged 11 %, ranging from 9 % for TBSA burned below 25–13 % for TBSA burned above 50 %. Children recovered faster and more fully.

Conclusion

Burns cause substantial losses in quality of life, with long-term losses comparable to traumatic brain injury.