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1.  Validation of a French Version of the Quality of Life “Celiac Disease Questionnaire” 
PLoS ONE  2014;9(5):e96346.
Background and Objective
Celiac disease (CD) is a common chronic autoimmune disorder. Both the manifestations of the disease and the burden of the compulsory life-long gluten-free diet (GFD) have been shown to be associated with impairment of health-related quality of life. The objectives of this study were to provide a cross-cultural adaptation of the specific quality of life “Celiac Disease Questionnaire” (CDQ) and to analyze its psychometric properties.
Materials and Methods
A cross-cultural French adaptation of the CDQ (F-CDQ) was obtained according to the revised international guidelines. The questionnaire was administered at baseline to 211 patients with biopsy proven CD followed-up in a single tertiary referral centre. The questionnaire was also administered after 7 days and 6 months. Reliability (intraclass correlation coefficients (ICC), Cronbach's alpha and Bland and Altman graphical analysis), validity (factorial structure and Rasch analysis, convergent validity), and responsiveness (effect size) of the F-CDQ were studied.
Results
The reliability of the F-CDQ was excellent with ICC and Cronbach's alpha coefficients being between 0.79 and 0.94 for the four subscales and the total score. The factorial structure and the Rasch analysis showed that the four dimensions of the original instrument were retained. Correlations with external measures (a generic measure of quality of life, an anxiety and depression instrument, a self-assessed disease severity, and clinical manifestations) were all in the expected direction confirming the validity of the instrument. Responsiveness was studied and effect sizes ≥0.20 were demonstrated for most of the subscales for patients who reported improvement or deterioration after 6 months.
Conclusion
The F-CDQ retains the psychometric properties of the original instrument and should be useful in cross-national surveys and to assess outcome in clinical trials involving patients with CD.
doi:10.1371/journal.pone.0096346
PMCID: PMC4008531  PMID: 24788794
2.  Non response, incomplete and inconsistent responses to self-administered health-related quality of life measures in the general population: patterns, determinants and impact on the validity of estimates — a population-based study in France using the MOS SF-36 
Background
Health-related quality of life (HRQoL) measures are increasingly used in the general population. However, little is known about patterns and determinants of unanswered or unusable questionnaires and their consequences on estimates of HRQoL.
Methods
The 2003 Decennial Health Survey collected socio-demographic and health information, including HRQoL, for 30,782 adults representative of the French population. The pattern, determinants and impact on estimate validity of non, incomplete and inconsistent responses to the SF-36 questionnaire were determined. For this, phi coefficients, polytomous logistic regression models and multiple imputation methods were used.
Results
Only 48% of the subjects eligible for the HRQoL measurement provided a complete and consistent SF-36 questionnaire. Three patterns of non-response and five of partial (incomplete or inconsistent) response were identified, sharing largely similar socio-demographic profiles (higher age, lower educational level and economic status, foreign background, and isolated). The consequences of non and partial responses on HRQoL estimates were large in several groups of subjects although these biases ran in opposite directions and partially neutralized each other.
Conclusions
When measuring HRQoL in the general population, missing and inconsistent data are frequent, especially in elderly, educationally and socio-economically deprived, foreign and isolated groups. Methods for handling missing data are required to correct for potentially the associated and serious selection and non-differential information biases in studies targeting or investigating these groups.
doi:10.1186/1477-7525-11-44
PMCID: PMC3606448  PMID: 23497315
Quality of life; SF-36; Missing items; Missing forms; Determinants; Bias; Imputation
3.  A preliminary score for the assessment of disease activity in hereditary recurrent fevers: results from the AIDAI (Auto-Inflammatory Diseases Activity Index) Consensus Conference 
Annals of the rheumatic diseases  2010;70(2):309-314.
Background
The systemic autoinflammatory disorders (SAID) share many clinical manifestations, albeit with variable patterns, intensity and frequency. A common definition of disease activity would be rational and useful in the management of these lifelong diseases. Moreover, standardised disease activity scores are required for the assessment of new therapies in constant development. The aim of this study was to develop preliminary activity scores for familial Mediterranean fever, mevalonate kinase deficiency, tumour necrosis factor receptor-1-associated periodic syndrome and cryopyrin-associated periodic syndromes (CAPS).
Methods
The study was conducted using two well-recognised consensus formation methods: the Delphi technique and the nominal group technique. The results from a two-step survey and data from parent/patient interviews were used as preliminary data to develop the agenda for a consensus conference to build a provisional scoring system.
Results
24 of 65 experts in SAID from 20 countries answered the web questionnaire and 16 attended the consensus conference. There was consensus agreement to develop separate activity scores for each disease but with a common format based on patient diaries. Fever and disease-specific clinical variables were scored according to their severity. A final score was generated by summing the score of all the variables divided by the number of days over which the diary was completed. Scores varied from 0 to 16 (0–13 in CAPS). These scores were developed for the purpose of clinical studies but could be used in clinical practice.
Conclusion
Using widely recognised consensus formation techniques, preliminary scores were obtained to measure disease activity in four main SAID. Further prospective validation study of this instrument will follow.
doi:10.1136/ard.2010.132613
PMCID: PMC3463866  PMID: 21081528
4.  Determination of the best method to estimate glomerular filtration rate from serum creatinine in adult patients with sickle cell disease: a prospective observational cohort study 
BMC Nephrology  2012;13:83.
Background
Sickle cell disease (SCD) leads to tissue hypoxia resulting in chronic organ dysfunction including SCD associated nephropathy. The goal of our study was to determine the best equation to estimate glomerular filtration rate (GFR) in SCD adult patients.
Methods
We conducted a prospective observational cohort study. Since 2007, all adult SCD patients in steady state, followed in two medical departments, have had their GFR measured using iohexol plasma clearance (gold standard). The Cockcroft-Gault, MDRD-v4, CKP-EPI and finally, MDRD and CKD-EPI equations without adjustment for ethnicity were tested to estimate GFR from serum creatinine. Estimated GFRs were compared to measured GFRs according to the graphical Bland and Altman method.
Results
Sixty-four SCD patients (16 men, median age 27.5 years [range 18.0-67.5], 41 with SS-genotype were studied. They were Sub-Saharan Africa and French West Indies natives and predominantly lean (median body mass index: 22 kg/m2 [16-33]). Hyperfiltration (defined as measured GFR >110 mL/min/1.73 m2) was detected in 53.1% of patients. Urinary albumin/creatinine ratio was higher in patients with hyperfiltration than in patients with normal GFR (4.05 mg/mmol [0.14-60] versus 0.4 mg/mmol [0.7-81], p = 0.01). The CKD-EPI equation without adjustment for ethnicity had both the lowest bias and the greatest precision. Differences between estimated GFRs using the CKP-EPI equation and measured GFRs decreased with increasing GFR values, whereas it increased with the Cockcroft-Gault and MDRD-v4 equations.
Conclusions
We confirm that SCD patients have a high rate of glomerular hyperfiltration, which is frequently associated with microalbuminuria or macroalbuminuria. In non-Afro-American SCD patients, the best method for estimating GFR from serum creatinine is the CKD-EPI equation without adjustment for ethnicity. This equation is particularly accurate to estimate high GFR values, including glomerular hyperfiltration, and thus should be recommended to screen SCD adult patients at high risk for SCD nephropathy.
doi:10.1186/1471-2369-13-83
PMCID: PMC3465224  PMID: 22866669
Sickle cell disease; Glomerular hyperfiltration; Albuminuria; Glomerular filtration rate; CKD-EPI equation; Iohexol plasma clearance; Ethnicity
5.  Impact of Chikungunya Virus Infection on Health Status and Quality of Life: A Retrospective Cohort Study 
PLoS ONE  2009;4(11):e7800.
Background
Persistent symptoms, mainly joint and muscular pain and depression, have been reported several months after Chikungunya virus (CHIKV) infection. Their frequency and their impact on quality of life have not been compared with those of an unexposed population. In the present study, we aimed to describe the frequency of prolonged clinical manifestations of CHIKV infection and to measure the impact on quality of life and health care consumption in comparison with that of an unexposed population, more than one year after infection.
Methodology/Principal Findings
In a retrospective cohort study, 199 subjects who had serologically confirmed CHIKV infection (CHIK+) were compared with 199 sero-negative subjects (CHIK–) matched for age, gender and area of residence in La Réunion Island. Following an average time of 17 months from the acute phase of infection, participants were interviewed by telephone about current symptoms, medical consumption during the last 12 months and quality of life assessed by the 12-items Short-Form Health Survey (SF-12) scale. At the time of study, 112 (56%) CHIK+ persons reported they were fully recovered. CHIK+ complained more frequently than CHIK– of arthralgia (relative risk = 1.9; 95% confidence interval: 1.6–2.2), myalgia (1.9; 1.5–2.3), fatigue (2.3; 1.8–3), depression (2.5; 1.5–4.1) and hair loss (3.8; 1.9–7.6). There was no significant difference between CHIK+ and CHIK– subjects regarding medical consumption in the past year. The mean (SD) score of the SF-12 Physical Component Summary was 46.4 (10.8) in CHIK+ versus 49.1 (9.3) in CHIK– (p = 0.04). There was no significant difference between the two groups for the Mental Component Summary.
Conclusions/Significance
More than one year following the acute phase of infection, CHIK+ subjects reported more disabilities than those who were CHIK–. These persistent disabilities, however, have no significant influence on medical consumption, and the impact on quality of life is moderate.
doi:10.1371/journal.pone.0007800
PMCID: PMC2771894  PMID: 19911058
6.  Determination of the minimal clinically important difference for seven fatigue measures in rheumatoid arthritis 
Journal of clinical epidemiology  2008;61(7):705-713.
Objective
To estimate the minimal clinically important difference (MCID) of seven measures of fatigue in rheumatoid arthritis.
Study Design and Setting
A cross-sectional study design based on inter-individual comparisons was used. Six to eight subjects participated in a single meeting and completed seven fatigue questionnaires (nine sessions were organized and 61 subjects participated). After completion of the questionnaires, the subjects had five one-on-one 10-minute conversations with different people in the group to discuss their fatigue. After each conversation, each patient compared their fatigue to their conversational partner’s on a global rating. Ratings were compared to the scores of the fatigue measures to estimate the MCID. Both non-parametric and linear regression analyses were used.
Results
Non-parametric estimates for the MCID relative to “little more fatigue” tended to be smaller than those for “little less fatigue”. The global MCIDs estimated by linear regression were: FSS 20.2, VT 14.8, MAF 18.7, MFI 16.6, FACIT–F 15.9, CFS 9.9, RS 19.7, for normalized scores (0 to 100). The standardized MCIDs for the seven measures were roughly similar (0.67 to 0.76).
Conclusion
These estimates of MCID will help to interpret changes observed in a fatigue score and will be critical in estimating sample size requirements.
doi:10.1016/j.jclinepi.2007.08.016
PMCID: PMC2486378  PMID: 18359189
minimal clinically important difference; sample size requirement; fatigue; rheumatoid arthritis; health status; interpretation

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