Outcome evaluation in pediatric orthopedics.

Outcome evaluation is an objective procedure to determine the impact and success of a therapeutic program, focusing on the patient's well being in daily life. It is important not to confuse the different concepts found in the health status classification and quality of life evaluation. Both are suitable for outcome evaluation and may be used according to the principles of evidence-based medicine. Outcome evaluation of a therapeutic program may be compared to a search in the literature and the level of evidence. The goal is to achieve direct benefits for the patient and society. Strategies to improve daily practice may be developed. Scientific societies can create database for outcome evaluation and develop standardized protocols for longitudinal outcome follow-up, as well as proposing this type of study to health authorities. Based on these results, a global view of the patient can be taken into consideration to influence medical, socioeconomic and health management patient care.

[Suicide attempts by young adolescents: epidemiological characteristics of 517 15-year-old or younger adolescents admitted in French emergency departments]. / Tentatives de suicide: étude descriptive d'une cohorte de 517 adolescents de moins de 15 ans et 3 mois.

Adolescents who attempt suicide are a major concern. A growing body of literature seeks to explain this phenomenon and to identify its predictive factors, but relatively little information is available and children and adolescents under 15 years of age who present to general hospitals because of a suicide attempt. This study aimed to describe the demographic, social, medical, and psychological characteristics of a large sample of 517 French adolescents aged not more than 15 years 3 months. A second purpose was to measure observance of psychological care in a 1-year follow-up. Third, we aimed to document the reattempt rate during the follow-up in this population of young adolescents. Following the French official recommendations, a systematic 72-h hospitalization as well as a somatic, social, and psychological assessment was proposed to every suicide attempter after his or her admission to the emergency department. The adolescent was followed for 1 year after the suicide attempt, called the index episode. This follow-up was organized by two physicians, one of whom was not associated with the care of any of the patients. It consisted in seeking regular information as well as organization and/or optimization of the patient's psychological care, which was delivered in dedicated structures for adolescents, in outpatient care by a psychiatrist, or in an adolescent psychiatric inpatient care unit. In case of a repeated suicide attempt or persistence of alarming symptoms, this follow-up was prolonged for 1 more year. Patient data were compiled by experienced clinicians during initial assessment and alongside the 1-year follow-up through patient self-reports, but also through interviews with informants (family members, social professionals) and clinical sources (general practitioner, psychiatrist, etc.). The areas covered were the characteristics of the index episode, those of the population at the time of the index episode, as well as those of the 1-year follow-up including observance to the care and potential repetition of the suicide attempt. The mean age was 14 years with a minimum of 7 years 9 months. The vast majority of the population was female (86.1%), less than one-third lived with both parents, and 27% had academic problems. The most frequent means of suicide attempt was medication (83.9%), 92.6% of adolescents were hospitalized following the index episode, only 7.5% of them were admitted to adolescent psychiatric unit inpatient care following the initial care. Psychiatric evaluation was documented for 93.3% of the adolescents. Half (n=222) had at least one symptom of a psychiatric disorder. One-year follow-up data were available for 394 adolescents: 40 had not yet completed the year and 83 were lost to follow-up. Among the analyzable population of 391 adolescents, 35.3% were optimally observant of the care proposed and 21.4% did not observe treatment. Fifty-nine youths (15%) were referred to the hospital because of a repeated suicide attempt. Two of the patients who repeated the suicide attempt within the year had died. The findings from this study are informative with regard to prevention and intervention efforts with suicidal young and very young adolescents. First, repetition of the suicide attempt in young adolescents is not rare since nearly 15% of the cohort were repeaters within the year following the index episode. Nevertheless, intensive care and follow-up resulting in good attendance appeared to have a positive impact on the repetition of the suicide attempt.

[Children and air travel: national survey results]. / L'enfant et l'avion : résultats d'une enquête nationale.

Airplanes are widely used by families and their children and pediatricians are increasingly asked to answer questions on this subject. The main purpose of this study was to evaluate the knowledge of pediatricians in this field except for medical transportation. Pediatricians belonging to the AFPA, the SFP, the SNPEH, or the SP2A were emailed a questionnaire on the physiological particularities of airborne transportation, contraindications to flight related to diseases (infections, diabetes, sickle-cell anemia, respiratory diseases, etc.) and the possible medication intake on board. Among the 232 responders, 82.3% had an exclusive hospital practice and 65% were specialized in more than one area of medicine. Regarding contraindications to flying, the rate of correct answers varied from 14 to 84% with divided opinions regarding respiratory and hematological pathologies. However, contraindications related to infections were well known. Items related to oxygen therapy raised questions as 35-68% of pediatricians stated that they could not answer. On the whole, this work demonstrated very fragmented knowledge on this topic.

Validation of the multiple sclerosis international quality of life (MusiQoL) questionnaire in Norwegian patients.

OBJECTIVES: To assess the validity and reliability of the multidimensional, self-administered Multiple Sclerosis International Quality of Life (MusiQoL) questionnaire, previously validated in a large international sample, in Norwegian patients. PATIENTS AND METHODS: Patients with different types and severities of multiple sclerosis (MS) were recruited from a single MS centre in Norway. All patients completed the MusiQoL and Short Form-36 (SF-36) QoL questionnaires at baseline and a mean of 21 (SD 7) days later. A neurologist collected sociodemographic, MS history and outcome data. Construct validity, internal consistency, reproducibility and external consistency were tested. RESULTS: One hundred and four patients were evaluated. Construct validity was confirmed in terms of satisfactory item internal consistency correlations in eight of nine MusiQoL dimensions (Spearman's correlation: 0.34-0.79) and scaling success of item discriminant validity (75.0-100%). All dimensions of the MusiQoL questionnaire exhibited satisfactory internal consistency (Cronbach's alpha: 0.44-0.87) and reproducibility (intraclass correlation coefficients: 0.36-0.86). External validity testing showed that the global MusiQoL score correlated significantly with all but one individual SF-36 dimension score (Spearman's correlation: 0.29-0.56). CONCLUSIONS: These results demonstrate that the Norwegian-language version of the MusiQoL questionnaire is a valid and reliable instrument for assessing health-related QoL in Norwegian patients with MS.

[A preliminary validation of a new French instrument to assess quality of life for caregivers of patients suffering from schizophrenia]. / Validation française d'un questionnaire de qualité de vie des aidants naturels de patients schizophrènes.

INTRODUCTION: Since psychiatric institutions began discharging mentally ill patients into the community, family of patients suffering from schizophrenia are more and more involved in the therapeutic process. The adverse consequences of having a patient suffering from schizophrenia at home are called "burden of care" and have been studied by numerous authors. We were interested in the quality of life of caregivers and its evaluation. This concept represents a more complex, multidimensional approach in which many variables are taken into account. We propose the development of a French self-administered instrument of quality of life for caregivers of individuals with schizophrenia, the caregiver schizophrenia quality of life questionnaire (S-CGQoL). METHODS: Data were collected through the departments of six psychiatric hospitals in France (n=246). The item reduction and validation processes were based on both item response theory and classical test theory. The study of external validity used the generic Short Form 36 questionnaire. Scores of isolated dimensions were also confronted with caregivers' and patients' demographic data and with patients' clinical data. RESULTS: The S-CGQoL contains 25 items describing seven dimensions (psychological and physical well-being; burden and daily routine; relationships with spouse; relationships with psychiatric team; relationships with family; relationships with friends; and material burden). The seven-factor structure accounted for 74.4% of the total variance. Internal consistency was satisfactory; Cronbach's alpha coefficients ranged from 0.79 to 0.92 in the whole sample. The scalability was satisfactory, with INFIT statistics within an acceptable range. In addition, the results confirmed the absence of DIF and supported the invariance of the item calibrations. Acceptability was good. The study of external validity found significant correlation between S-CGQoL index and all SF-36 dimension scores. Certain dimensions of the S-CGQoL are associated with caregivers' characteristics (age, sex, number of children, living situation, and employment status). Moreover, some domains of caregiver's quality of life are dependant on subtype of schizophrenia (paranoid) and symptomatology (positive factor and general psychopathology). We did not find any correlation with negative factor. DISCUSSION: The content of the S-CGQoL encompasses experiences of great importance to patients and is substantially different from other generic quality of life or burden instruments. In our questionnaire, the focus on the different aspect of the social life permits a precise analytical description of the social dimension that is not assessed as much in other questionnaires. LIMITATIONS: The psychometric properties need to be studied in a wider population. Some parameters of internal validity are missing, such as reproductibility (test-retest reliability) and sensibility to change. The external validity needs to study relationships between S-CGQoL and burden. CONCLUSION: The S-CGQoL is the first self-administered quality of life questionnaire for caregivers of patients suffering from schizophrenia. It presents satisfactory psychometric properties, which can be completed in five minutes and, therefore, fulfils the goal of brevity sought in research and clinical practice.

[French validation of the Multiple Sclerosis International Quality of Life Questionnaire]. / Validation Française du Multiple Sclerosis International Quality of Life Questionnaire (MusiQoL).

INTRODUCTION: Health-related quality of life (HRQL) measurements have become an important outcome both for population health assessment and for evaluating treatments and care management. HRQL indicators require completion of a well-validated questionnaire. Few specific questionnaires are available for French multiple sclerosis (MS) patients. The Multiple Sclerosis International Quality of Life questionnaire (MusiQoL), a self-administered and multidimensional questionnaire, was co-developed and validated in 17 countries, including France. We report the main results of the French clinical validity of this instrument. METHODS: The French patients were recruited between January 2004 and February 2005. The main inclusion criteria were: diagnosis of MS according to McDonald criteria, age over 18 years, having given informed consent. The self-administered survey materials that were completed by the patients included the MusiQoL, the generic HRQL questionnaire SF36, and one checklist of 14 MS-specific symptoms reported by the patients. MusiQoL comprises 31 items describing nine dimensions: activity of daily living (eight items), psychological well-being (four), symptoms (three), friends relationships (four), family relationships (three), satisfaction with health care (three), sentimental and sexual life (two), coping (two), and rejection (two). A global index score is computed. Patients were evaluated at inclusion (T0), and retested 21±7 days later (T1). At T0, an experienced neurologist collected sociodemographic data, clinical history related or unrelated to the MS condition, treatments. At T1, change in the patient's health status from T0 was reported. RESULTS: The analyses were performed with data from 179 subjects. The mean patient age was 44.1 years (SD: 11.5); there were 120 women and 59 men, 58.1% were unemployed, 13.6% had a tertiary educational level. MS clinical forms were 69 relapsing-remitting, 47 secondary-progressive, 37 primary-progressive, and nine clinically isolated syndrome. The EDSS median was 4.5 (25-75(th) percentiles: 2.5-6.0). The final French version showed satisfactory psychometric properties (external validity, internal consistency, reliability, reproducibility, and acceptability). CONCLUSION: The availability of a reliable and valid French version of MusiQoL, a self-administered and multidimensional questionnaire, co-developed in different countries, enables evaluation of QoL in French MS patients that are eligible for international multicenter studies.

Quality of life in a heterogeneous sample of caregivers of cancer patients: an in-depth interview study.

To establish the best approach to develop a quality of life (QoL) questionnaire for cancer-patient caregivers, this study attempts to identify primary domains of QoL in terms of their impact on a purposive sample of caregivers. Seventy-seven informal adult caregivers of cancer patients (breast cancer, paediatric haematological malignancies or melanoma) with different relationships with the patients (parents, children, spouses, siblings, and friends) were recruited at three specialised French centres and extensively interviewed. Caregivers' lives were altered in several domains: psychological well-being, leisure and everyday activities, relationships with institutional caregivers, occupation and finances, relationships with family and friends, physical well-being, and relationship with the patient. The relative importance of these domains varied mainly in association with the caregiver-patient relationship. Multiple correspondence analysis identified two isolated clusters: children, and, most significantly, friends and siblings. The latter groups emphasised the repercussions on their psychological well-being and their relationship with the patient, but were less willing to discuss the impact on their relationship with caregivers and on occupation, finances, leisure, and everyday activities. This study focuses on the caregiver's perspective and advocates the development of a short QoL core questionnaire. Additional modules should be cancer-specific or dedicated to specifics of the caregiver-patient relationship.

Influence of clinical and gait analysis experience on reliability of observational gait analysis (Edinburgh Gait Score Reliability).

OBJECTIVES: Treatment complexity of cerebral palsy (CP) patients imposes outcome evaluation studies, which may include objective technical analysis and more subjective functional evaluation. The Edinburgh Gait Score (EGS) was proposed as an additive or alternative when complex instrumented three-dimensional gait analysis is not available. Our purposes were to apply a translated EGS to standard video recordings of independent walking spastic diplegic CP patients, to evaluate its intraobserver and interobserver reliability with respect to gait analysis familiar and not familiar observers. METHODS: Ten standard video recordings acquired during routine clinical gait analysis were examined by eight observers gait analysis interpretation experienced or not, out of various specialities, two times with a two weeks interval. Kappa statistics and intraclass correlation coefficient were calculated. RESULTS: Better reliability was observed for foot and knee scores than in proximal segments with significant differences between stance and swing phase. Significantly better results in gait analysis trained observers underlines the importance to either be used to clinical gait analysis interpretation, or to benefit of video analysis training before observational scoring. CONCLUSION: Visual evaluation may be used for outcome studies to explore clinical changes in CP patients over time and may be associated to other validated evaluation tools.

[Validation study of the BDI/TDI scores in chronic obstructive pulmonary disease]. / Etude de validation de l'échelle BDI/TDI dans la bronchopneumopathie chronique obstructive.

BACKGROUND: The Baseline and Transition Dyspnoea Indices (BDI/TDI) provide measurements of breathlessness and of its impact on activities of daily living. OBJECTIVES: To assess, in France, the measurement characteristics of the BDI/TDI scores. METHOD: A multicentric cohort of 103 patients with mild to severe COPD was questioned by both a medical and a paramedical investigator at enrollment and again 6 months later. RESULTS: Concordance between investigators was good for all the sub-scores of the BDI, but less satisfactory for the TDI score. The BDI score was significantly correlated with all spirometric data. Conversely, the TDI score only correlated significantly with change in the FEV1. Both scores correlated highly with the modified Medical Research Council score, the St George Respiratory Questionnaire and with their evolution. The average TDI score was close to 0 in stable patients indicating good reproducibility of this Index. Changes in the TDI score were closely associated with changes in global health assessment by physicians, less so when assessed by patients. CONCLUSION: The BDI-TDI scores appear to be valid instruments for the measurement of dyspnoea in COPD patients and, less significantly, for measurement of its change over time.

Height growth during adolescence and final height after haematopoietic SCT for childhood acute leukaemia: the impact of a conditioning regimen with BU or TBI.

We compared the impact of a conditioning regimen with BU (n=16) or fractionated TBI (n=42) on height growth during adolescence and final height (FH), in 58 adults transplanted for acute leukaemia before adolescence (younger than 9 for girls and 11 for boys, and prepubertal). Heights were measured at three key periods, that is, transplantation, before adolescence, and FH, and compared using height standard deviation score (SDS) and cumulative change in SDS. The influence of the conditioning regimen was assessed using multiple linear regression and adjusting for gender, central nervous system irradiation, age and leukaemia status at transplant and type of transplantation. Overall mean height SDS was near normal at transplantation and before adolescence (0.2+/-0.1 and -0.2+/-0.1, respectively), but decreased to -1.6+/-0.1 at FH. There were significant differences between the TBI and BU groups when comparing FH SDS (-1.8+/-0.2 vs -0.8+/-0.2, P=0.001), mean change in height SDS from transplantation to FH (-2+/-0.1 vs -1.1+/-0.2, P=0.002) and mean change in height SDS during adolescence (-1.6+/-0.1 vs -0.7+/-0.2, P=0.003). We conclude that preparations involving BU, although less toxic than TBI-containing regimens, also have adverse effects on growth, predominantly during adolescence.

Impact of neurofibromatosis 1 upon quality of life in childhood: a cross-sectional study of 79 cases.

BACKGROUND: Neurofibromatosis 1 (NF1) has a significant impact on quality of life (QoL). OBJECTIVES: To evaluate QoL in NF1 according to phenotype from the viewpoint of children and proxy. METHODS: One hundred and forty families with a child aged between 8 and 16 years, seen consecutively at the National Academic Paediatric Referral Centre for NF1 for a phenotype evaluation, were contacted by mail. Families agreeing to participate were sent two questionnaires, the DISABKIDS for children and proxy and the cartoon version of the Children's Dermatology Life Quality Index (CDLQI). QoL scores were compared with those in other major diseases and were analysed according to age, gender and phenotype. RESULTS: Eighty families agreed to participate, and 79 returned the questionnaires. Using DISABKIDS, NF1 had a higher impact on health-related QoL than asthma (mean+/-SD 75.18+/-18.22 vs. 79.78+/-13.41; P=0.005). The total score was more altered when assessed by proxy than by children (71.20+/-17.94 vs. 75.18+/-18.22; P=0.002). Orthopaedic manifestations, learning disabilities and presence of at least two plexiform neurofibromas were independently associated with a higher impact (P<0.01). The CDLQI score was slightly altered (11.3%). Dermatological signs, such as café-au-lait spots and freckling, did not have a significant impact. CONCLUSIONS: Orthopaedic manifestations, learning disabilities and plexiform neurofibromas are the main complications impacting on QoL during childhood NF1. QoL could be considered as an endpoint for intervention studies in this context.

[Ankle injury without fracture in children: cast immobilization versus symptomatic treatment. Impact on absenteeism and quality of life]. / Traumatisme de la cheville sans fracture chez l'enfant : immobilisation plâtrée versus traitement symptomatique. Impact sur l'absentéisme et la qualité de vie.

UNLABELLED: Treatment methods for ankle injury in children are numerous and have comparable results. The impact on absenteeism and quality of life is an interesting criterion to consider in order to help doctors in their initial treatment choice. OBJECTIVE: The objective of this study was to compare two therapeutic strategies for ankle injury without fracture in children in terms of the impact on school absenteeism, parents' professional absenteeism, and quality of life. The strategies compared were cast immobilization of the ankle and a purely symptomatic treatment with no immobilization. MATERIALS AND METHOD: We conducted a prospective, comparative, and randomized study. The population comprised children between 8 and 15 years of age, consulting for a first episode of ankle injury in a pediatric-emergency department of a hospital center in Marseille, France. A clinical and radiographical report was systematically done. Children were seen after 1 week to provide the clinical monitoring, assess the child's and parents' absenteeism, and assess the quality of life. RESULTS: Sixty-two patients were studied. There was no difference in clinical progression after 7 days between the two treatment groups. Quality of life was also comparable. However, the children's absenteeism and the parents' absenteeism were higher in the casted group.

Validation of the Multiple Sclerosis International Quality of Life questionnaire.

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.

Abnormal melatonin synthesis in autism spectrum disorders.

Melatonin is produced in the dark by the pineal gland and is a key regulator of circadian and seasonal rhythms. A low melatonin level has been reported in individuals with autism spectrum disorders (ASD), but the underlying cause of this deficit was unknown. The ASMT gene, encoding the last enzyme of melatonin synthesis, is located on the pseudo-autosomal region 1 of the sex chromosomes, deleted in several individuals with ASD. In this study, we sequenced all ASMT exons and promoters in individuals with ASD (n=250) and compared the allelic frequencies with controls (n=255). Non-conservative variations of ASMT were identified, including a splicing mutation present in two families with ASD, but not in controls. Two polymorphisms located in the promoter (rs4446909 and rs5989681) were more frequent in ASD compared to controls (P=0.0006) and were associated with a dramatic decrease in ASMT transcripts in blood cell lines (P=2 x 10(-10)). Biochemical analyses performed on blood platelets and/or cultured cells revealed a highly significant decrease in ASMT activity (P=2 x 10(-12)) and melatonin level (P=3 x 10(-11)) in individuals with ASD. These results indicate that a low melatonin level, caused by a primary deficit in ASMT activity, is a risk factor for ASD. They also support ASMT as a susceptibility gene for ASD and highlight the crucial role of melatonin in human cognition and behavior.

[Dimensional approach of social behaviour deficits in children. Preliminary validation study of the French version of the Children's Social Behaviour Questionnaire (CSBQ)]. / Approche dimensionnelle des troubles des comportements sociaux chez l'enfant. Etude préliminaire de validation de la version française du Children's Social Behavior Questionnaire (CSBQ).

UNLABELLED: Social deficit is the core symptom of pervasive developmental disorder. In other child psychiatric disorders, social problems are also described but mainly as a result of the disease symptomatology. However, some recent studies suspect that in several disorders such as attention deficit hyperactive disorder, patients have an endogenous social disturbance. The aim of our research was to study abnormal child social behaviour in several disorders, using a dimensional approach. It is a preliminary validation study of the French version of the Children's Social Behaviour Questionnaire, a dimensional instrument constructed by Luteijn, Minderaa et al. METHODOLOGY: Five clinical groups, according to the DSM IV criteria, formed a population of 103 children aged 6 to 16 years old: autistic disorder, attention deficit hyperactive disorder (ADHD), emotional disorder (anxious, depressed), mental retardation and normal children. Parents completed the Child Behaviour Checklist (CBCL) and the Children's Social Behaviour Questionnaire (CSBQ). The research worker and the child's physician completed a data form. The data form included information about medical history, development and socio-demographic criteria. The CBCL explored children's behaviours and general psychopathology, and included social dimensions (withdrawn, social problems, aggressive/delinquent behaviours, thought problems). The CSBQ, a dimensional questionnaire, explored children's social behaviours and included five dimensions: <>, <>, <>, <>, <>. The English version of the CSBQ, validated with in the Netherlands Dutch population was translated into French and the translation was validated (double back translation). As the CBCL and CSBQ questionnaires are both dimensional instruments, dimensions have been compared. All instrument results were analysed separately; correlations and comparisons were made between groups. RESULTS: Correlations between CSBQ and CBCL dimensions are consistent. Positive correlations exist for: <> dimension with <>, <> and <>; <> with <> and <>; <> with <> and <>; <> with <>, <> and <>; social stereotypes>> with <>. Mean CSBQ results are as follows: 1. autistic group has the highest score for the <> dimension, ADHD group has the highest score for the <> dimension, mental retardation group has the highest score for the <> dimension. 2. comparisons between groups shows: significant difference between the autistic and ADHD groups for <> and <> but not for <> and <>; between the autistic and mental retardation groups, there is a significant difference for <> but not for the other dimensions; between the ADHD and mental retardation groups, there is a significant difference only for <>; there is no significant difference between the ADHD and emotional groups; control group has very low scores. CBCL results are: abnormal scores in all groups except normal control group, for <> and <>; abnormal scores in the autistic and emotional groups for <>, <> and <>; abnormal scores in the ADHD group for <>, <> and <>; the <> score is borderline. DISCUSSION: Social behaviour profiles are different and characteristic for each disorder. However, social symptoms are not specific for one disorder and common social signs do exist between different disorders. Our results are concordant with the Luteijn study and literature data. The results support the hypothesis of a dimensional pathogenesis in social behaviour disturbance. We discuss the benefit of a dimensional approach to complete the categorical one. The Children's Social Behaviour Questionnaire seems to be an interesting instrument to explore social behaviour disturbances in several child disorders.

Health status and quality of life in long-term survivors of childhood leukaemia: the impact of haematopoietic stem cell transplantation.

We compared late side effects and quality of life (QoL) in 430 survivors of childhood acute leukaemia based on whether they had undergone haematopoietic cell transplantation (n=142) or not (n=288). Mean age was 18.2 years and mean follow-up duration was 11.9 years. Multivariate logistic regression analyses were performed to compare the risk of each type of late effect in the two groups. Based on age, VSP-A or SF36 questionnaires were used to assess QoL. For each QoL dimension, multiple linear regression was done to construct models of association with the treatment group. Transplanted patients experienced more side effects, including height growth failure, gonadal dysfunction, hypothyroidism and cataract. Children and adolescents in the two treatment groups reported similar QoL levels for almost all dimensions except a better perception of school work by young transplanted children and more difficulties in relating to the medical staff for transplanted adolescents. In adults, two differences in physical domain of QoL were detected but the calculated effect sizes were less than 0.2 in each case, suggesting an uncertain clinical significance. In spite of a higher risk of physical adverse events in the transplanted group, very few clinically significant differences in QoL are detectable.

[Development and validation of a self rating quality of life scale: the S-QoL]. / Développement et validation d'un instrument d'auto-évaluation de la qualité de vie des patients souffrant de schizophrénie: la S-QoL.

INTRODUCTION: Evaluation of subjective quality of life in schizophrenia is a recent phenomenon. Few subjective quality of life questionnaires are available and validated, especially in French. Most of the available scales are hetero questionnaires based on experts' opinion. We describe the development and the validation of a new self-rating questionnaire of quality of life for schizophrenic patients, the S-QoL. The S-QoL was based on Calman's approach to the subject's point of view. The S-QoL is a multidimensional instrument. Generation of the items was based on three series of semi-directive interviews with patients' various types (hospitalized, ambulatory, acute phase, stabilized...). Synthesis of the interviews permitted the elaboration of a pre-questionnaire of 97 items. SETTING: A first version of the questionnaire (V0) was used in a sub-group of 141 schizophrenic patients. After a preliminary study of the psychometric properties a first questionnaire (V1) of 53 items was elaborated. A second experimental study was performed in a group of 207 patients. A shorter version (41 items) was developed and a validation study was conducted. Eight dimensions were isolated. METHODS: Nomological validity was studied with clinical parameters (clinical severity, psychotic symptomatology, global functioning) correlated with the S-QoL. The trait validity was estimated by measuring the correlation of the S-QoL with two other instruments: the QoLi and the SF 36. The test-retest reliability was estimated on a subgroup of 53 patients stabilized in a 30-day period. RESULTS: The coefficients of correlation were from 0.64 to 0.79. The acceptability of the S-QoL was good (missing rate of data lower than 10% for all the scores and the rate of spontaneous refusal between 8 and 12%). The average time of completion was 13.6 +/- 10.8 minutes. Sensitivity to change was studied in a population of 46 patients between day 0 and day 30. The S-QoL was also sensitive to the change. The S-QoL measures the impact of schizophrenia on quality of life of the individuals suffering from the disease. CONCLUSION: The S-Qol is a new self-administered questionnaire able to follow the evolution of the disease. S-Qol covers domains that differ from areas tapped in other measures of quality of life. The use of the S-QoL in the assessment of the efficacy of the clinical programme will be evaluated.

[Testing range of motion in cerebral palsy]. / Bilan articulaire des membres inférieurs d'un enfant atteint d'une infirmité motrice cérébrale.

OBJECTIVES: To propose a standardized test of joint range of motion in paediatric patients with cerebral palsy, based on the opinion of a cerebral palsy specialist group (physicians, physiotherapists and surgeons) and literature review. MATERIALS AND METHODS: A Delphi process was adapted to elaborate a complete test of lower-limb-joint range of motion. During the preparation phase, a pilot committee selected a list of items compiled from literature search and personal experience. A first questionnaire was proposed to 16 experts, then six discussion meetings followed. From the results, the pilot committee prepared a second questionnaire for the experts and finalized the complete test of joint range of motion. RESULTS: The complete test includes 24 items related to goniometric measurements in supine and prone positions. Principal conditions necessary for an accurate exam are included. Further, a testing guide with visuals of the proposed exam techniques was developed. CONCLUSIONS: The standardized testing of lower-limb-joint range of motion will allow for better communication between clinicians and will facilitate the development of a database. Care should be taken in the interpretation of the joint range-of-motion test results and realized only after reliability analysis of the test, especially interobserver reliability. A further step would be to develop an outpatient booklet for cerebral palsy that shows growth and weight curves, joint range-of-motion curves and curves of the principal radiographic measurements during growth.

[Validation of the French version of the Princess Margaret Hospital Patient Satisfaction with their Doctor Questionnaire]. / Validation de la version française du Princess Margaret Hospital Patient Satisfaction with Doctor Questionnaire (PMH/PSQ-MD): le F-PMH/PSQ MD.

BACKGROUND: The evaluation of patient satisfaction receives increasing attention partly due to pressure from state agencies involved in the administration of health care. Outpatients' satisfaction with their doctor is a major component of total patient satisfaction. However, a validated instrument for assessing this has not previously been available in French. PATIENTS AND METHODS: The Princess Margaret Hospital Patient Satisfaction with Doctor Questionnaire (PMH/PSQ-MD) is a recently validated tool available in English for this purpose. A three-step procedure was conducted to obtain a validated French translation of the PMH/PSQ-MD. Subsequently, outpatients receiving chemotherapy, symptomatic treatment or attending a follow-up clinic were approached to participate in the study and complete the questionnaire. Acceptability and reliability (Cronbach's alpha score), as well as internal and external (Pearson correlation coefficient with the Patient Satisfaction Questionnaire IV) validities were studied. RESULTS: 137 patients were approached and 116 fully completed the study. The PMH/PSQ-MD's acceptability was high (<10% of non-responders). Internal validity was also high (Cronbach's alpha score > 0.7 for each dimension). External validity in comparison with the PSQ IV was high as well. Women demonstrated higher satisfaction scores, while age had no influence on patient satisfaction. CONCLUSIONS: The F-PMH/PSQ-MD is a questionnaire which addresses outpatients' satisfaction with their doctor, and is now available for research purpose as well as for daily practice.