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This study assessed the psychometric properties of a recently developed health-related quality of life (HRQOL) instrument (Vecu et Sante Percue de l'Adolescent -Malade, VSP-AM) in 172 adolescents receiving growth hormone. The VSP-AM was cross-culturally adapted into English and tested for internal consistency (@a=0.78-0.89 subscales, 0.74 Summary Score), construct and criterion validity, and responsiveness. Correlations with other scales demonstrated convergent validity. Adolescents who reported HRQOL as high or low had significantly different scores (all p<0.001). Adolescents receiving growth hormone therapy differed significantly from adolescents with medical, surgical or psychiatric disorders. The VSP-AM shows reliability and validity for HRQOL measurement in adolescents with growth disorders.

During the last two decades, quality of life (QOL) has been perceived as an innovative indicator of patients’ self-perceived health status, allowing integration of a qualitative approach in medical decision-making. This is evident from the number of publications related to this topic: during the three decades between 1973 and 2002, 1124 papers dealing with QOL in asthma were cited in Medline, 85% having been published during the last 15 years and 65% during the last 5 years. A number of reasons can be given for the interest in this subject: the limitations of traditional indicators of health outcomes, the evolution of the relationship between patients and physicians, the rationalisation of health care expenditures, the increasing importance of health care interventions, and also the desire to keep up with the fashion. The medical community at large has been trying to define QOL, how to measure it, looking at the available instruments and how to use them; this is also true for allergy. Of the 1124 publications cited above, only 41 (3.5%) were written in French. We point out that QOL is a measurable concept, that it is based on a subjective approach and that it has numerous applications. Nevertheless, for a wider use in France, especially in allergy, decision makers must make it a key issue before clinicians are going to understand QOL and make full use of questionnaires used to measure it. [Copyright &y& Elsevier]

We developed an instrument to assess feelings about self-injection of growth hormone (GH) in adolescents with growth disorders. Summary scores did not differ significantly by cohort, age, gender, or diagnosis. Adolescents who were more comfortable with GH injections had higher health-related quality of life, functional capacity, and self-control. [ABSTRACT FROM AUTHOR]

Background: Health-related quality of life (HRQoL) assessment, encompassing the adolescents' perceptions of their mental, physical, and social health and well-being is increasingly considered an important outcome to be used to identify population health needs and to provide targeted medical care. Although validated instruments are essential for accurately assessing HRQoL outcomes, there are few cross-culturally adapted tools for use in Brazil, and none designed exclusively for use among adolescents. The Vécu et Santé Perçue de l'Adolescent (VSP-A) is a generic, multidimensional self-reported instrument originally developed and validated in France that evaluates HRQoL of ill and healthy adolescents., Purpose: To cross-culturally adapt and validate the Brazilian-Portuguese version of the VSP-A, a generic HRQoL measure for adolescents originally developed in France., Methods: The VSP-A was translated following a well-validated forward-backward process leading to the Brazilian version. The psychometric evaluation was conducted in a sample of 446 adolescents (14-18 years) attending 2 public high schools of São Gonçalo City. The adolescents self-reported the Brazilian VSP-A, the validated Psychosomatic Symptom Checklist and socio-demographic information. A retest evaluation was carried out on a sub-sample (n = 195) at a two-week interval. The internal construct validity was assessed through confirmatory factor analysis (CFA), multi-trait scaling analyses, Rasch analysis evaluating unidimensionality of each scale and Cronbach's alpha coefficients. The reproducibility was evaluated by intra-class correlation coefficients (ICC). Zumbo's ordinal logistic regression analysis was used to detect differential item functioning (DIF) between the Brazilian and the French items. External construct validity was investigated testing expected differences between groups using one-way analysis of variance (ANOVA), Mann-Whitney tests and the univariate general regression linear model., Results: CFA showed an acceptable fit (RMSEA=0.05; CFI=0.93); 94% of scaling success was found for item-internal consistency and 98% for item discriminant validity. The items showed good fit to the Rasch model except 3 items with an INFIT at the upper threshold. Cronbach's Alpha ranged from 0.60 to 0.85. Test-retest reliability was moderate to good (ICC=0.55-0.82). DIF was evidenced in 4 out of 36 items. Expected patterns of differences were confirmed with significantly lower physical, psychological well being and vitality reported by symptomatic adolescents., Conclusions: Although DIF in few items and responsiveness must be further explored, the Brazilian version of VSP-A demonstrated an acceptable validity and reliability in adolescents attending school and might serve as a starting point for more specific clinical investigations.

This study aims to validate the Multiple Sclerosis (MS) International Quality of Life (MusiQoL) questionnaire, a multi-dimensional, self-administered questionnaire, available in 14 languages, as a disease-specific quality of life scale that can be applied internationally. A total of 1992 patients with different types and severities of MS from 15 countries were recruited. At baseline and day 21 +/- 7, each patient completed the MusiQoL, a symptom checklist and the short-form (SF)-36 QoL questionnaire. Neurologists also collected socio-demographic, MS history and outcome data. The database was randomly divided into two subgroups and analysed according to different patient characteristics. For each model, psychometric properties were tested and the number of items was reduced by various statistical methods. Construct validity, internal consistency, reproducibility and external consistency were also tested. Nine dimensions, explaining 71% of the total variance, were isolated. Internal consistency and reproducibility were satisfactory for all the dimensions. External validity testing revealed that dimension scores correlated significantly with all SF-36 scores, but showed discriminant validity by gender, socio-economic and health status. Significant correlations were found between activity in daily life scores and clinical indices. These results demonstrate the validity and reliability of the MusiQoL as an international scale to evaluate QoL in patients with MS.

Objectives: The aim of this study is to assess the structural and cross-cultural validity of the KIDSCREEN-27 questionnaire., Methods: The 27-item version of the KIDSCREEN instrument was derived from a longer 52-item version and was administered to young people aged 8-18 years in 13 European countries in a cross-sectional survey. Structural and cross-cultural validity were tested using multitrait multi-item analysis, exploratory and confirmatory factor analysis, and Rasch analyses. Zumbo's logistic regression method was applied to assess differential item functioning (DIF) across countries. Reliability was assessed using Cronbach's alpha., Results: Responses were obtained from n = 22,827 respondents (response rate 68.9%). For the combined sample from all countries, exploratory factor analysis with procrustean rotations revealed a five-factor structure which explained 56.9% of the variance. Confirmatory factor analysis indicated an acceptable model fit (RMSEA = 0.068, CFI = 0.960). The unidimensionality of all dimensions was confirmed (INFIT: 0.81-1.15). Differential item functioning (DIF) results across the 13 countries showed that 5 items presented uniform DIF whereas 10 displayed non-uniform DIF. Reliability was acceptable (Cronbach's alpha = 0.78-0.84 for individual dimensions)., Conclusions: There was substantial evidence for the cross-cultural equivalence of the KIDSCREEN-27 across the countries studied and the factor structure was highly replicable in individual countries. Further research is needed to correct scores based on DIF results. The KIDSCREEN-27 is a new short and promising tool for use in clinical and epidemiological studies.

Objective: The aims of this study were to assess the level of agreement and the magnitude of discrepancies between children and their parents, and whether these levels of agreement/discrepancy depend on the country of living, the domains of quality of life assessed, the age and gender of the children, and other background variables., Study Design and Setting: The KIDSCREEN pilot study involved 2,526 youth-proxy pairs in seven European countries. The health-related quality of life (HRQoL) of children and their parents as proxy has been assessed in parallel using a 10-dimension KIDSCREEN-52 Pilot test questionnaire., Results: For the 10 dimensions, the mean difference between proxy and youth score decreases as the HRQoL level increases. Physical and cognitive domains showed the major agreement between youth and proxy measure. Social and psychological domains presented the main discrepancies. Linear regression models highlighted that the agreement was depending on the country for the 10 dimensions. Impact of age and gender on agreement were not consistent across the 10 dimensions., Conclusion: Agreement is higher for the girls than for the boys and for the adolescents than for children. To further explore the country effect on agreement, results need replication in representative studies.

Purpose: The KIDSCREEN project aims to develop a European cross-cultural generic self-administered Health-Related Quality of Life (HRQoL) instrument for children and adolescents. Proxy measures HRQoL should be a useful and practical alternative to assess children's HRQoL. The KIDSCREEN pilot study involved 3988 children and 2526 child-proxy pairs in seven European countries (Austria, Switzerland, Germany, Spain, France, United Kingdom, and The Netherlands). The proxy instrument is based on the model developed from the children and adolescents reports. The aim of this study is to assess the psychometric properties of the proxy measure in terms of reliability and construct and external validity., Methods: Confirmatory factor analysis (CFA) of the parent's data allows testing of the multidimensional structure of the proxy measure. Rasch analysis evaluates the scalability of each dimension. The mutltitrait-multimethod (MTMM) model assesses the trait validity through CFA. The agreement between children and proxies reports has been assessed using the Intraclass Correlation Coefficient (ICC)., Results: CFA indicates that the children's model is adequate to the parents' data. Reliability is satisfactory for every dimension (CFI = .957). For every dimension, Rasch analysis indicates that items form a unidimensional continuum. MTMM results confirm the trait validity of the instrument. Higher agreement was found for the physical well being dimension (ICC=.52) and school/cognitive functioning (ICC=.52). Adolescents showed higher agreement than the children, and girls higher than boys. Children with physical chronic health conditions showed higher agreement for several domains: physical and psychological well-being, social support, and school environment., Conclusions: Exploring different facets of validity showed satisfactory results. This new instrument provides a promising measure to further assess the relationships between youth and proxy reports.

Background: Pancreaticoduodenectomy (PD) is the standard surgical treatment for malignant ampullomas but is still associated with a mortality and morbidity still ranging from 0 to 10% and from 15 to 40%, respectively. Ampullectomy is an alternative to PD for benign ampulloma or, in high-risk patients, for invasive carcinoma. The aim of this study was to report early and long term results of surgical ampullectomy for presumed benign ampullomas., Patients and Methods: From 1981 to 2004, 26 patients from two institutions underwent surgical ampullectomy. Of the 26 patients, 8 had familial adenomatous polyposis (FAP). Surgical ampullectomy was indicated on a multisciplinary basis., Results: Final pathological examination revealed 15 adenomas, 4 in situ adenocarcinomas, 2 endocrine tumors, and 5 other benign lesions. There was no postoperative mortality. Specific morbidity was 8% (N=2). Mean follow-up was 86+/-70 months (range: 3-204). Actuarial overall 5-year survival was 92%. There were 4 local recurrences (none in patients with FAP). Four patients died during follow-up (including 3 from initial disease)., Conclusion: Ampullectomy is a good alternative to PD in case of benign or non-invasive malignant ampullary lesion, including in selected cases of FAP.

During 20 last years, there has been an exponential growth in the literature related to quality of life (QoL). The usual indicators of results are not always responsive to new strategies or new systems of care organization. While assessment of QoL by patients and by the medical community is an old concern, the issue of standardized instruments is more recent. Despite the need, the use of QoL questionnaires remains rare because of the lack of sufficiently dedicated tools. In the specific field of motoneuron diseases, a search of the literature should be helpful to clarify the definition of quality of life. It should also be helpful in determining the limits of the debate on quantification of an impression considered to be subjective. The goal is to clarify methods for standardizing QoL evaluation, to specify nosographic notions affecting the choice of measuring instruments, to recall the prerequisite of validation before use, and finally to specify the fields of application of such tools. Thus in the field of motoneuron diseases, recognizing the limitations of QoL instruments should enable a more enlightened approach to overall assessment of the burden of these diseases.

Objective: To assess the psychometric properties of the Spanish version of the Vecú et Santé Perçue de l'Adolescent (VSP-A) in terms of reliability and validity., Design: Cross-sectional study., Setting: Pilot study parallel to the European Kidscreen project. Two secondary schools, one public and one private, were selected for their suitability in Barcelona and Gerona (Catalonia, Spain). The sample unit was the classroom., Participants: A sample of 354 adolescents aged 12 to 18 years old was selected., Main Measurements: The Spanish VSP-A questionnaire was administered, and again a week later to check its test-retest stability. The KINDL questionnaire was administered in parallel., Results: The response rate was 82% (n=291). The Spanish version of the VSP-A showed good internal consistency and acceptable test-retest reliability (Cronbach's alpha: 0.69-0.92, intraclass correlation coefficient [ICC]: 0.69-0.74) in most domains. Domains measuring a similar concept in the VSP-A and KINDL had closer correlation coefficients than those measuring different constructs (P<.05), which demonstrates its convergent validity. Girls had worse self-perceived health than boys (lower vitality, physical and emotional well-being and self-esteem, and a lower general score on the VSP-A; p<.01). These differences were more obvious in older teens (16-18 years old)., Conclusions: The Spanish VSP-A showed good psychometric properties and results were consistent with the original French version. The results mean we have an adequate HRQL instrument for teens and for use in primary care and public health.

Purpose: Up to 90 percent of patients with familial adenomatous polyposis develop adenomas in the upper gastrointestinal tract. Besides pancreaticoduodenectomy, which remains indicated in duodenal and ampullary cancer, less aggressive surgical procedure (such as ampullectomy) must be evaluated in selected patients with familial adenomatous polyposis patients presenting low-risk benign duodenal adenomas., Methods: From 1995 to 2000, we performed a retrospective, observational study, which included eight patients (5 females) with familial adenomatous polyposis underwent ampullectomy (with frozen sections) for presumed benign polyposis lesions. Six patients had an ileal pouch-anal anastomosis performed 2 to 27 years before ampullectomy. The remaining two patients had ampullectomy during the same operation than ileal pouch-anal anastomosis., Results: No patient died postoperatively. Mean hospital stay was 15 +/- 6.5 (range, 10-21) days. There was one major complication (pancreatic fistula), which was treated conservatively. Final pathologic examination of the specimens revealed that three patients had a severe dysplasia. Mean follow-up of the patients was 58 +/- 37 (range, 24-119) months. During endoscopic follow-up, although all the patients underwent endoscopic resection of duodenal polyps, none presented recurrence at the ampullectomy site., Conclusions: Ampullectomy could be safely proposed in selected familial adenomatous polyposis patients. Our low morbidity and the absence of recurrence after almost five years of follow-up suggests that such conservative treatment could be proposed before pancreaticoduodenectomy in patients with high-risk ampullary adenomas without invasive carcinoma.

Hemophagocytic syndrome (HPS) is characterized by an uncontrolled and poorly understood activation of T-helper 1 (Th-1) lymphocytes and macrophages. We studied 20 patients with HPS secondary to infections, autoimmune disease, lymphoma, or cancer and observed that the concentrations of serum interleukin 18 (IL-18), a strong inducer of Th-1 responses, interferon gamma (IFN-gamma) production, and stimulation of macrophages and natural killer (NK) cells were highly increased in HPS but not in control patients. In contrast, concentrations of its natural inhibitor, the IL-18 binding protein (IL-18BP), were only moderately elevated, resulting in a high level of biologically active free IL-18 in HPS (4.6-fold increase compared with controls; P < .001). Free IL-18 but not IL-12 concentrations significantly correlated with clinical status and the biologic markers of HPS such as anemia (P < .001), hypertriglyceridemia, and hyperferritinemia (P < .01) and also with markers of Th-1 lymphocyte or macrophage activation, such as elevated concentrations of IFN-gamma and soluble IL-2 and tumor necrosis factor alpha (TNF-alpha) receptor concentrations. Despite high IL-18 elevation, in vitro NK-cell cytotoxicity was severely impaired in HPS patients, in part due to NK-cell lymphopenia that was observed in a majority of patients but also secondary to an intrinsic NK-cell functional deficiency. We concluded that a severe IL-18/IL-18BP imbalance results in Th-1 lymphocyte and macrophage activation, which escapes control by NK-cell cytotoxicity and may allow for secondary HPS in patients with underlying diseases.

Background: Social network analysis is a method for describing and contextualising the structural relationships amongst social entities. The aim of this study was to assess the relationships between hospitals through the use of an example of a hospital that takes care of myocardial infarction in the region of Provence Alpes Côte d'Azur (PACA)., Method: This retrospective study included all patients hospitalised for acute coronary syndrome in the PACA region between January and June 2000. The description analysis consisted of making a graph describing the transfer of patients between hospitals to calculate indicators for the centrality of the hospital and its prestige. The graph was also used to determine and measure the sub-group cohesion (cliques) and the density of the hospital network., Results: A total of 2049 patients suffering from myocardial infarction were admitted to 78 hospitals during the study period. There were 867 transfers from one hospital to another. 51 cliques were highlighted; 29 hospitals do not belong to a clique. Among the 49 hospitals who do belong to sub-groups, 50% are linked to two cliques. Eight hospitals belong to more than 8 sub-groups, and the maximum number of sub-groups to which a hospital is linked is 12. The density of the hospital network is 0.12., Conclusions: Social network analysis is a field of research open and adaptable to the public health scene. This method could be applied to the evaluation of health and hospital administration and management networks.

Objective: We sought to assess postoperative outcome after pneumonectomy after neoadjuvant therapy in patients with non-small cell lung cancer., Methods: This retrospective study included 100 patients treated from January 1989 through December 2003 for a primary lung cancer in whom pneumonectomy had been performed after an induction treatment. Surgical intervention had not been considered initially for the following reasons: N2 disease (stage IIIA, n = 79), doubtful resectability (stage IIIB [T4, N0], n = 19), and M1 disease (stage IV [T2, N0, M1, solitary brain metastasis], n = 2). All patients received a 2-drug platinum-based regimen with a median of 2.5 cycles (range, 2-4 cycles), and 30 had associated radiotherapy (30-45 Gy)., Results: There were 55 right and 45 left resections. Overall 30-day and 90-day mortality rates were 12% and 21%, respectively. At multivariate analysis, one independent prognostic factor entered the model to predict 30-day mortality: postoperative cardiovascular event (relative risk, 45.7; 95% confidence interval, 3.7-226.7; P = .001). Four variables predicted 90-day mortality: age of more than 60 years (relative risk, 5.06; 95% confidence interval, 1.47-17.48; P = .01), male sex (relative risk, 8.25; 95% confidence interval, 1.01-67.34; P = .049), postoperative respiratory event (relative risk, 3.64; 95% confidence interval, 1.14-9.37; P = .007), and postoperative cardiovascular event (relative risk, 7.84; 95% confidence interval, 3.12-19.71; P < .001). Estimated overall survivals in 90-day survivors were 35% (range, 29%-41%) and 25% (range, 19.3%-30.7%) at 3 and 5 years, respectively. At multivariate analysis, one independent prognostic factor entered the model: pathologic stage III-IV residual disease (relative risk, 1.89; 95% confidence interval, 1.09-3.26; P = .022)., Conclusions: Pneumonectomy after induction therapy is a high-risk procedure, the survival benefit of which appears uncertain.

This study assessed the psychometric properties of a recently developed health-related quality of life (HRQOL) instrument (Vécu et Santé Perçue de l'Adolescent -Malade, VSP-AM) in 172 adolescents receiving growth hormone. The VSP-AM was cross-culturally adapted into English and tested for internal consistency (alpha=0.78-0.89 subscales, 0.74 Summary Score), construct and criterion validity, and responsiveness. Correlations with other scales demonstrated convergent validity. Adolescents who reported HRQOL as high or low had significantly different scores (all p<0.001). Adolescents receiving growth hormone therapy differed significantly from adolescents with medical, surgical or psychiatric disorders. The VSP-AM shows reliability and validity for HRQOL measurement in adolescents with growth disorders.

Introduction: The treatment of bone metastasis from lung cancer is palliative in nature with elimination of pain being the primary goal. Management is based on pharmacologicalmethods (steroids, morphine, and pamidronate) and radiotherapy. However, other treatments have been developed including the systemic radiopharmaceutical 153Sm-EDTMP., Case Reports: We report data from 6 lung cancer patients with bone metastases treated with 153Sm-EDTMP. Demographic and therapeutic data, pain evaluation by visual analogue scale (VAS) and change in opioid analgesia requirements (expressed as intravenous morphine equivalent) as well as survival were studied. Pain associated with bone metastasis (median VAS = 8 [7-9], median morphine dose = 167 mg [100-800 mg]) did not significantly improve (median VAS after 153Sm-EDTMP = 8.5 [5-10], median morphine dose after 153Sm-EDTMP = 185 mg [30-2 200 mg]) in this group of patients., Conclusion: Our results combined with current data in the literature concerning the use of this treatment in the treatment of bone pain associated with metastatic lung cancer suggest that at present its use cannot be recommended outside the context of clinical of clinical trials.