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BACKGROUND: Increasing numbers of programs are addressing the specific needs of homeless people with schizophrenia in terms of access to housing, healthcare, basic human rights and other domains. Although quality of life scales are being used to evaluate such programs, few instruments have been validated for people with schizophrenia and none for people with schizophrenia who experience major social problems such as homelessness. The aim of the present study was to validate the French version of the S-QoL a self-administered, subjective quality of life questionnaire specific to schizophrenia for people with schizophrenia who are homeless. METHODS: In a two-step process, the S-QoL was first administered to two independent convenience samples of long-term homeless people with schizophrenia in Marseille, France. The objective of the first step was to analyse the psychometric properties of the S-QoL. The objective of the second step was to examine, through qualitative interviews with members of the population in question, the relevance and acceptability of the principle quality of life indicators used in the S-QoL instrument. RESULTS: Although the psychometric characteristics of the S-QoL were found to be globally satisfactory, from the point of view of the people being interviewed, acceptability was poor. Respondents frequently interrupted participation complaining that questionnaire items did not take into account the specific context of life on the streets. CONCLUSIONS: Less intrusive questions, more readily understandable vocabulary and greater relevance to subjects' living conditions are needed to improve the S-QoL questionnaire for this population. A modular questionnaire with context specific sections or specific quality of life instruments for socially excluded populations may well be the way forward.
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Personas con Mala Vivienda/psicología , Calidad de Vida , Psicología del Esquizofrénico , Encuestas y Cuestionarios , Adulto , Femenino , Francia , Humanos , Masculino , Persona de Mediana Edad , Satisfacción del Paciente , Psicometría , Adulto JovenRESUMEN
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.
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Encuestas Epidemiológicas/normas , Esclerosis Múltiple/diagnóstico , Esclerosis Múltiple/psicología , Calidad de Vida/psicología , Encuestas y Cuestionarios/normas , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad , NoruegaRESUMEN
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.
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Cuidadores/psicología , Neoplasias/enfermería , Calidad de Vida , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Neoplasias de la Mama/enfermería , Neoplasias de la Mama/psicología , Femenino , Francia , Neoplasias Hematológicas/enfermería , Neoplasias Hematológicas/psicología , Humanos , Relaciones Interpersonales , Masculino , Melanoma/enfermería , Melanoma/psicología , Persona de Mediana Edad , Neoplasias/psicología , Psicometría/métodos , Encuestas y Cuestionarios , Adulto JovenRESUMEN
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.
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Esclerosis Múltiple/psicología , Calidad de Vida/psicología , Encuestas y Cuestionarios , Actividades Cotidianas , Adaptación Psicológica , Adulto , Evaluación de la Discapacidad , Relaciones Familiares , Femenino , Francia , Humanos , Lenguaje , Masculino , Persona de Mediana Edad , Actividad Motora , Esclerosis Múltiple/complicaciones , Dolor/etiología , Dolor/psicología , Reproducibilidad de los Resultados , Conducta SexualRESUMEN
BACKGROUND: The existing health-related quality of life questionnaires on multiple sclerosis (MS) only partially reflect the patient's point of view on the reduction of activities of daily living. Their development and validation was not performed in different languages. That is what prompted the development of the Multiple Sclerosis International Quality of Life (MusiQoL) Questionnaire as an international multidimensional measurement instrument. This paper presents this new development and the results of the German subgroup versus the total international sample. PATIENTS AND METHODS: A total of 1,992 MS patients from 15 countries, including 209 German patients, took part in the study between January 2004 and February 2005. The patients took the MusiQoL survey at baseline and at 21±7 days as well as completing a symptom-related checklist and the SF-36 short form survey. Demographics, history and MS classification data were also generated. Reproducibility, sensitivity, convergent and discriminant validity were analysed. RESULTS: Convergent and discriminant validity and reproducibility were satisfactory for all dimensions of the MusiQoL. The dimensional scores correlated moderately but significantly with the SF-36 scores, but showed a discriminant validity in terms of gender, socioeconomic status and health status that was more pronounced in the overall population than in the German subpopulation. The highest correlations were observed between the MusiQoL dimension of activities of daily living and the Expanded Disability Status Scale (EDSS). CONCLUSION: The results of this study confirm the validity and reliability of MusiQoL as an instrument for measuring the quality of life of German and international MS patients.
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Comparación Transcultural , Esclerosis Múltiple Crónica Progresiva/psicología , Esclerosis Múltiple Recurrente-Remitente/psicología , Calidad de Vida/psicología , Encuestas y Cuestionarios , Actividades Cotidianas/psicología , Adulto , Lista de Verificación , Femenino , Alemania , Humanos , Masculino , Persona de Mediana Edad , Psicometría/estadística & datos numéricosRESUMEN
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.
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Cuidadores/psicología , Costo de Enfermedad , Calidad de Vida/psicología , Esquizofrenia/terapia , Psicología del Esquizofrénico , Encuestas y Cuestionarios , Anciano , Femenino , Francia , Hospitales Psiquiátricos , Humanos , Masculino , Persona de Mediana Edad , Psicometría/estadística & datos numéricos , Reproducibilidad de los ResultadosRESUMEN
BACKGROUND: Since the law of February 11, 2005, in France, the number of children with disabilities enrolled in ordinary schools has increased steadily. As a result, the amount of personal support provided by a special needs assistant (personal support) is also increasing. The aim of the study was to describe the diseases and impairments of disabled children aged 2-6, enrolled in mainstream schools and benefiting from personal support for schooling by special needs assistants in the Bouches-du-Rhône (France) in 2014. METHODS: A cross-sectional descriptive study was performed. Children included were benefiting from either an individual or shared personal support. Physicians from the territorial organization in charge of disability coded diseases and deficiencies using the International Classification of Diseases, 10th revision, and nomenclature inspired by the International Classification of Functioning, Disability and Health. RESULTS: Medical data were coded for 990 children out of 1260 of the total population. These young disabled children were most frequently children with pervasive developmental disorders (23.3%), lack of expected normal physiological development (19.9%), or mixed specific developmental disorders (13.5%), and most often had behavioral, personality, and relational skills disorders (61.8%), psychomotor function impairments (51.9%), or written or oral language learning impairment (43.2%). Finally, the two main types of impairments most represented among these children were psychological impairments (86.7%) and language and speech impairments (79.8%). The children were most often supported by an individual personal support (for one child only) than by a shared personal support (60% vs. 40%). They were mainly boys (almost 75%). CONCLUSION: This study provides working guidelines for the management of health policies relating to disability at the territorial or even national level.
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Niños con Discapacidad/educación , Trastornos del Lenguaje/rehabilitación , Integración Escolar/estadística & datos numéricos , Trastornos del Neurodesarrollo/rehabilitación , Distribución por Edad , Niño , Preescolar , Estudios Transversales , Niños con Discapacidad/psicología , Niños con Discapacidad/rehabilitación , Niños con Discapacidad/estadística & datos numéricos , Femenino , Francia/epidemiología , Política de Salud , Humanos , Trastornos del Lenguaje/epidemiología , Trastornos del Lenguaje/psicología , Integración Escolar/métodos , Masculino , Trastornos del Neurodesarrollo/epidemiología , Trastornos del Neurodesarrollo/psicología , Prevalencia , Instituciones Académicas , Distribución por SexoRESUMEN
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.
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Enfermedades del Desarrollo Óseo/etiología , Discapacidades para el Aprendizaje/etiología , Neurofibroma Plexiforme/etiología , Neurofibromatosis 1/psicología , Glioma del Nervio Óptico/etiología , Calidad de Vida/psicología , Adolescente , Enfermedades del Desarrollo Óseo/psicología , Niño , Estudios Transversales , Femenino , Humanos , Discapacidades para el Aprendizaje/psicología , Masculino , Neurofibroma Plexiforme/psicología , Glioma del Nervio Óptico/psicología , Paris/epidemiología , Fenotipo , Índice de Severidad de la Enfermedad , Encuestas y CuestionariosRESUMEN
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.
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Disnea/diagnóstico , Enfermedad Pulmonar Obstructiva Crónica/diagnóstico , Actividades Cotidianas , Adulto , Interpretación Estadística de Datos , Disnea/fisiopatología , Humanos , Selección de Paciente , Estudios Prospectivos , Enfermedad Pulmonar Obstructiva Crónica/fisiopatología , Pruebas de Función Respiratoria , Fumar , Encuestas y CuestionariosRESUMEN
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.
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Absentismo , Traumatismos del Tobillo/terapia , Moldes Quirúrgicos , Inmovilización , Calidad de Vida , Adolescente , Vendajes , Niño , Interpretación Estadística de Datos , Estudios de Seguimiento , Humanos , Estudios Prospectivos , Factores de Tiempo , Resultado del TratamientoRESUMEN
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.
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Estado de Salud , Trasplante de Células Madre Hematopoyéticas/efectos adversos , Leucemia/complicaciones , Leucemia/terapia , Sobrevivientes , Adolescente , Catarata/etiología , Niño , Estudios de Seguimiento , Trastornos Gonadales/etiología , Trastornos del Crecimiento/etiología , Humanos , Hipotiroidismo/etiología , Modelos Lineales , Encuestas y CuestionariosRESUMEN
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.
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Calidad de Vida/psicología , Esquizofrenia/epidemiología , Psicología del Esquizofrénico , Encuestas y Cuestionarios , Adulto , Femenino , Humanos , Masculino , Reproducibilidad de los Resultados , Factores de TiempoRESUMEN
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: <
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Lenguaje , Conducta Social , Encuestas y Cuestionarios , Niño , Francia , Humanos , Reproducibilidad de los ResultadosRESUMEN
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.
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Parálisis Cerebral/fisiopatología , Extremidad Inferior/fisiopatología , Rango del Movimiento Articular/fisiología , Adolescente , Adulto , Artrometría Articular , Niño , Preescolar , Técnica Delphi , Humanos , Proyectos PilotoRESUMEN
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.
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Calidad de Vida , Adolescente , Adulto , Actitud Frente a la Salud , Niño , Preescolar , Humanos , Enfermedad de la Neurona Motora/fisiopatología , Enfermedad de la Neurona Motora/psicología , Pacientes/psicología , Calidad de Vida/psicología , Reproducibilidad de los Resultados , Índice de Severidad de la Enfermedad , Encuestas y CuestionariosRESUMEN
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.
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Satisfacción del Paciente , Relaciones Médico-Paciente , Encuestas y Cuestionarios , Anciano , Anciano de 80 o más Años , Femenino , Francia , Humanos , Estudios del Lenguaje , Neoplasias Pulmonares/tratamiento farmacológico , Masculino , Persona de Mediana Edad , Factores SexualesRESUMEN
In obsessive-compulsive disorder (OCD), clinical, neurobiological and genetic differences have been reported according to age at onset (AAO). Given the importance of identifying homogeneous subtypes in complex hete-rogeneous disorders such as OCD, it would be particularly useful to identify a specific cognitive profile associated with early-onset OCD. Although impaired cognition has repea-tedly been demonstrated in OCD patients, discrepancies between studies have hampered the identification of a precise cognitive dysfunction. Executive dysfunction has often been reported, but findings have not always been replicated. The aim of this study was to assess executive functions in 30 patients according to their AAO. The sample consisted of 15 early-onset and 15 late-onset OCD patients and 22 normal controls, matched for age, sex and socio-economic status. Various aspects of executive function were assessed with five neuropsychological tests: Tower of London, Trail Making Test, Verbal Fluency, Design Fluency and Association Fluen-cy. The 30 OCD patients obtained lower total scores than the controls in the Tower of London test and association fluen-cy task (p<0.05 and p<0.001, respectively). Impairments were more marked for the early-onset group, with no effect of gender or age at interview. Deficits in specific aspects of frontal lobe function were found in the OCD group and were particularly pronounced within the early-onset group. These findings confirm clinical data suggesting that OCD patients can be subtyped according to age at onset and that OCD patients present unusual cognitive characteristics. They also support the hypothesis that early-onset OCD might be a rele-vant subgroup characterised both by a particular clinical profile and by specific cognitive characteristics.
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Trastornos del Conocimiento/epidemiología , Cultura , Trastorno Obsesivo Compulsivo/epidemiología , Trastorno Obsesivo Compulsivo/psicología , Adolescente , Factores de Edad , Edad de Inicio , Niño , Trastornos del Conocimiento/diagnóstico , Femenino , Humanos , Masculino , Pruebas NeuropsicológicasRESUMEN
BACKGROUND: Evidence from family and twin studies suggests a genetic contribution to the etiology of anorexia nervosa. Different genes could contribute to the vulnerability to anorexia nervosa, but dopamine could be more specifically implicated in anorexia nervosa because of pharmacologic, endocrine, and neurobiological specificities. The dopamine receptor D3 (DRD3) may be of additional interest, since it is specifically located in the limbic area, an area implicated in reward and reinforcement behavior. METHODS: We performed an association study between 39 patients with severe (requiring hospitalization and with young age at onset) anorexia nervosa (DSM-III-R), and 42 controls, with the Bal I polymorphism in exon I of the DRD3 gene. RESULTS: There was no significant difference between patients with anorexia nervosa and controls in allele frequencies or genotype count. The association was still negative between subgroups separated according to family history of anorexia nervosa or comorbid mood disorders. CONCLUSIONS: Despite the fact that the number of patients tested is small, there is good evidence that the Bal I DRD3 polymorphism does not play a major role in the genetic component of anorexia nervosa. It would be useful to test polymorphisms of the other genes coding for dopamine receptors.
Asunto(s)
Anorexia Nerviosa/genética , Receptores de Dopamina D2/genética , Adolescente , Adulto , Alelos , Niño , ADN/análisis , ADN/genética , Femenino , Genotipo , Humanos , Reacción en Cadena de la Polimerasa , Polimorfismo Genético , Receptores de Dopamina D3RESUMEN
BACKGROUND: Whole blood serotonin (5-HT) and C-terminally directed beta-endorphin protein immunoreactivity (C-ter-beta-EP-ir) are known to be elevated in autistic subjects and might be possible markers of genetic liability to autism. This study thus investigates the familial aggregation of 5-HT and of C-ter-beta-EP-ir levels in first degree relatives of autistic probands. METHODS: In a sample of 62 autistic subjects and 122 of their first-degree relatives, compared to age and sex-matched controls, we measured 5-HT by radioenzymology and C-ter-beta-EP-ir by radioimmunoassay. RESULTS: We confirm the previously reported familiality of hyperserotoninemia in autism as mothers (51%), fathers (45%) and siblings (87%) have elevated levels of 5-HT, and we reveal presence of elevated levels of C-ter-beta-EP-ir in mothers (53%) of autistic subjects. CONCLUSIONS: Familial aggregation of quantitative variables, such as concentration of neurotransmitters, within unaffected relative could serve as an intermediate phenotype and might thus help the search of genetic susceptibility factors in autism.
Asunto(s)
Trastorno Autístico/sangre , Trastorno Autístico/genética , Serotonina/sangre , betaendorfina/sangre , Adolescente , Adulto , Niño , Preescolar , Femenino , Humanos , Pruebas de Inteligencia , Masculino , Radioinmunoensayo/métodos , Estudios Retrospectivos , Serotonina/genética , Estadísticas no Paramétricas , betaendorfina/genéticaRESUMEN
We developed a self-administered instrument to assess health-related quality of life (HRQL) among people with schizophrenia. The S-QoL, based on Calman's approach to the subject's point of view, is a multidimensional instrument that is sensitive to change. The scale is a 41-item questionnaire with eight subscales (psychological well-being, self-esteem, family relationships, relationships with friends, resilience, physical well-being, autonomy and sentimental life) and a total score. In-depth interviews with patients determined the pertinent issues for item development. The validation study, performed with 207 patients, showed high internal consistency reliability, reproducibility and responsiveness. Construct validity was confirmed using established clinical and HRQL measures. S-QoL covers domains that differ from areas tapped in other measures, with greater responsiveness. The S-QoL is an efficient instrument for the measurement of the impact of schizophrenia on individuals' lives.