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1.
Arch Pediatr ; 28(1): 39-46, 2021 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-33309119

RESUMO

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.


Assuntos
Crianças com Deficiência/educação , Transtornos da Linguagem/reabilitação , Inclusão Escolar/estatística & dados numéricos , Transtornos do Neurodesenvolvimento/reabilitação , Distribuição por Idade , Criança , Pré-Escolar , Estudos Transversais , Crianças com Deficiência/psicologia , Crianças com Deficiência/reabilitação , Crianças com Deficiência/estatística & dados numéricos , Feminino , França/epidemiologia , Política de Saúde , Humanos , Transtornos da Linguagem/epidemiologia , Transtornos da Linguagem/psicologia , Inclusão Escolar/métodos , Masculino , Transtornos do Neurodesenvolvimento/epidemiologia , Transtornos do Neurodesenvolvimento/psicologia , Prevalência , Instituições Acadêmicas , Distribuição por Sexo
2.
BMC Psychiatry ; 17(1): 72, 2017 02 17.
Artigo em Inglês | MEDLINE | ID: mdl-28212630

RESUMO

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.


Assuntos
Pessoas Mal Alojadas/psicologia , Qualidade de Vida , Psicologia do Esquizofrênico , Inquéritos e Questionários , Adulto , Feminino , França , Humanos , Masculino , Pessoa de Meia-Idade , Satisfação do Paciente , Psicometria , Adulto Jovem
3.
Int J Law Psychiatry ; 37(4): 376-82, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-24746286

RESUMO

CONTEXT: Marseille, the second largest city in France, has a large population of homeless persons. A mental health outreach team was created in 2005 as a response to high rates of mental illness among this group. In a national political context where security is a government priority, a new central police station was created in Marseille in 2006 to address robberies, violence and illegal traffic in the downtown area of the city. While not directly related to such crimes, police also are responsible for public safety or behavioral issues related to the presence of individuals who are homeless in this area. OBJECTIVE: This report on a two-year pilot study (2009-2011) addresses collaborative work between a mental health outreach team and the police department responding to the clinical needs of persons who are homeless with serious psychiatric disorders. It also describes the homeless persons' interactions with, and perceptions of the presence of, police and mental health professionals on the streets. METHODS: Investigators adopted a mixed-methods approach. Data were collected on 40 interactions using brief standardized report for each interaction. Focus groups were conducted with police officers, outreach team members, peer workers, and service users. Minutes of partnership meetings between police officers and outreach workers also served as a source of qualitative data. RESULTS: Outreach workers initiated just over half (n=21) of the encounters (n=40) between police and outreach workers. Interactions mainly involved persons with psychosis (77%), the vast majority (80%) of which involved persons in an acute phase of psychosis. Two key themes that emerged from data analysis included the violent nature of life on the streets and the high percentage of ethnic minorities among subjects of the interactions. In addition, it was found that the practices of the outreach workers are sometimes similar to those of the police, especially when outreach workers use coercive methods. "Users" (homeless persons) described police as sometimes using less coercion than the outreach team, and noted that they were more fearful of psychiatrists than police. CONCLUSION: Formal initiatives between mental health outreach teams and police departments involve some common street practices. This study demonstrates the potential for closer working relationships between the two parties to help persons who are homeless with mental illnesses receive needed care, and to reduce inappropriate coercion including involuntary hospitalization and arrests.


Assuntos
Intervenção em Crise/métodos , Pessoas Mal Alojadas/psicologia , Pessoas Mentalmente Doentes , Equipe de Assistência ao Paciente/organização & administração , Adulto , Coerção , Feminino , Grupos Focais , França , Humanos , Masculino , Projetos Piloto , População Urbana
4.
Orthop Traumatol Surg Res ; 100(1 Suppl): S113-23, 2014 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-24461234

RESUMO

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.


Assuntos
Atividades Cotidianas/classificação , Procedimentos Ortopédicos , Avaliação de Resultados em Cuidados de Saúde , Qualidade de Vida , Criança , Medicina Baseada em Evidências , França , Humanos , Estudos Longitudinais
5.
Arch Pediatr ; 20(6): 608-15, 2013 Jun.
Artigo em Francês | MEDLINE | ID: mdl-23628122

RESUMO

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.


Assuntos
Tentativa de Suicídio/estatística & dados numéricos , Adolescente , Criança , Depressão/epidemiologia , Overdose de Drogas/epidemiologia , Serviço Hospitalar de Emergência/estatística & dados numéricos , Estudos Epidemiológicos , Família , Feminino , Seguimentos , França/epidemiologia , Pessoal de Saúde , Hospitalização/estatística & dados numéricos , Humanos , Entrevista Psicológica , Entrevistas como Assunto , Tempo de Internação/estatística & dados numéricos , Perda de Seguimento , Masculino , Transtornos Mentais/epidemiologia , Transtornos Neuróticos/epidemiologia , Admissão do Paciente/estatística & dados numéricos , Cooperação do Paciente/estatística & dados numéricos , Unidade Hospitalar de Psiquiatria/estatística & dados numéricos , Recidiva , Autorrelato , Tentativa de Suicídio/prevenção & controle , Tentativa de Suicídio/psicologia
6.
Arch Pediatr ; 19(11): 1148-56, 2012 Nov.
Artigo em Francês | MEDLINE | ID: mdl-23083685

RESUMO

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.


Assuntos
Atitude do Pessoal de Saúde , Coleta de Dados , Pediatria , Viagem , Adulto , Idoso , Criança , Competência Clínica , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Especialização , Inquéritos e Questionários
7.
Eur J Obstet Gynecol Reprod Biol ; 162(1): 38-44, 2012 May.
Artigo em Inglês | MEDLINE | ID: mdl-22424585

RESUMO

OBJECTIVES: To describe the health-related quality of life (HRQL) of a cohort of children aged 6-10 years who were born preterm; and to determine whether sociodemographic factors, neonatal features and neurocognitive status were affecting their HRQL. STUDY DESIGN: All singleton infants born between 24 and 32 weeks of gestation between January 1997 and December 2001 at the study hospital, who were still alive in 2007 (age 6-10 years), and who had undergone complete clinical paediatric follow-up were included in the study. Maternal and perinatal data were obtained by chart review and regular clinical examination. The 'Battery for Rapid Evaluation of Cognitive Functions' (BREV) was used for cognitive evaluation when children were aged 4-8 years. HRQL data were collected in 2007 using the 'Vécu et Santé Perçue de l'Adolescent et de l'Enfant' (VSP-A) questionnaire (parent version). The HRQL of the preterm children was compared with that of a French reference population. RESULTS: Of 202 children who fulfilled the inclusion criteria, 82 children participated in the study. Their mean age was 7.9 years [standard deviation (SD) 1.4], mean birth weight was 1130.0 g (SD 361.4), 23 children were born before 28 weeks of gestation, 46 were female and 11 had major neurocognitive disorders. These data were not significantly different for the non-respondents (n=120). Parents of preterm children reported a significantly lower perception of HRQL of their child compared with parents of children in the reference population, as reflected by VSP-A global index scores and scores for the 'body image', 'vitality', 'psychological well-being' and 'school performance' dimensions. In multivariate analyses, three factors were found to be significantly associated with at least one dimension in the VSP-A scale in the preterm children: presence of major neurocognitive disorders, negatively correlated with 'vitality', 'relationships with friends', 'physical well-being' and 'school performance' dimensions; maternal parity, positively correlated with the 'psychological well-being' dimension; and socio-economic status of family, positively correlated with the 'relationships with friends' dimension. The maximum R(2) was 15%. CONCLUSION: In addition to neurocognitive disorders, other variables such as socio-economic status of the family have a significant impact on the HRQL of preterm children at 6-10 years of age. Given the low proportion of variability in HRQL explained by the models, there is a need to explore other factors (e.g. environmental).


Assuntos
Transtornos Cognitivos/diagnóstico , Recém-Nascido Prematuro/psicologia , Qualidade de Vida/psicologia , Criança , Transtornos Cognitivos/psicologia , Estudos de Coortes , Feminino , Seguimentos , França , Nível de Saúde , Humanos , Recém-Nascido , Masculino , Testes Neuropsicológicos , Instituições Acadêmicas , Classe Social , Fatores Socioeconômicos , Inquéritos e Questionários
8.
Bone Marrow Transplant ; 47(5): 684-93, 2012 May.
Artigo em Inglês | MEDLINE | ID: mdl-21725370

RESUMO

The literature contains a substantial amount of information about factors that adversely influence the linear growth in up to 85% of patients undergoing haematopoietic SCT (HSCT) with TBI and/or cranial irradiation (CI) for acute leukaemia (AL). By contrast, only a few studies have evaluated the impact of growth hormone (GH) therapy on growth rate and final height (FH) in these children. We evaluated growth rates during the pre- and post-transplant periods to FH in a group of 25 children treated with HSCT (n=22), TBI (n=21) or/and CI (n=8) for AL and receiving GH therapy. At the start of GH treatment, the median height Z-score was -2.19 (-3.95 to 0.02), significantly lower than at AL diagnosis (P<0.001). Overall height gain from start of GH treatment to FH was 0.59Z (-2.72 to 2.93) with a median height Z-score at FH of -1.35 (-5.35 to 0.27). This overall height gain effect was greater in girls than in boys (P=0.04). The number of children with heights in the reference population range was greater after than before GH therapy (P=0.07). At FH the GVHD and GH treatments lasting <2 years were associated with shorter FH (P=0.02 and 0.05). We found a measurable beneficial effect of GH treatment on growth up to FH.


Assuntos
Estatura/efeitos dos fármacos , Estatura/efeitos da radiação , Irradiação Craniana/efeitos adversos , Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Hormônio do Crescimento Humano/administração & dosagem , Leucemia Mieloide Aguda/terapia , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Irradiação Corporal Total/efeitos adversos , Criança , Pré-Escolar , Feminino , Seguimentos , Hormônio do Crescimento Humano/deficiência , Humanos , Lactente , Masculino , Estudos Retrospectivos
9.
Acta Neurol Scand ; 125(3): 171-9, 2012 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-21470195

RESUMO

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.


Assuntos
Inquéritos Epidemiológicos/normas , Esclerose Múltipla/diagnóstico , Esclerose Múltipla/psicologia , Qualidade de Vida/psicologia , Inquéritos e Questionários/normas , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Noruega
10.
Prog Neuropsychopharmacol Biol Psychiatry ; 36(2): 271-6, 2012 Mar 30.
Artigo em Inglês | MEDLINE | ID: mdl-22019603

RESUMO

OBJECTIVE: The aim of this study was to assess the impact of insight into illness on self-reported quality of life (QoL) for patients with schizophrenia. METHODS: This cross-sectional study was conducted in the psychiatric department of a French public university teaching hospital. The data collected included socio-demographic information, clinical characteristics, medications, cognitive performance assessments, insight into illness, and the S-QoL 18. A multivariate analysis using multiple linear regressions was performed to determine variables potentially associated with QoL levels. RESULTS: One hundred and thirteen outpatients with stable schizophrenia were enrolled in our study. Significant associations were found between QoL and socio-demographic characteristics: a higher QoL was associated with marital status (in couple) and employment. Concerning insight into illness, lower QoL levels were associated with better awareness of the mental disorder, whereas higher QoL levels were associated with better awareness of positive and negative symptoms. Elementary neuropsychological measures were not statistically associated with QoL. CONCLUSION: Insight into illness, marital status and employment were the most important features associated with QoL, whereas there was no evidence that elementary neurocognition directly influenced QoL. The different facets of insight into illness should be considered to guide the development of specific interventions intended to improve QoL. Moreover, this study highlights the need for clinicians to pay more attention to the personal impact of schizophrenia, especially upon family life and work.


Assuntos
Atitude Frente a Saúde , Conscientização , Transtornos Cognitivos/psicologia , Qualidade de Vida/psicologia , Esquizofrenia/diagnóstico , Psicologia do Esquizofrênico , Adulto , Transtornos Cognitivos/complicações , Estudos Transversais , Demografia/estatística & dados numéricos , Feminino , Humanos , Masculino , Testes Neuropsicológicos/estatística & dados numéricos , Esquizofrenia/complicações , Esquizofrenia/tratamento farmacológico , Autorrelato
11.
Encephale ; 37(6): 425-32, 2011 Dec.
Artigo em Francês | MEDLINE | ID: mdl-22137214

RESUMO

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.


Assuntos
Cuidadores/psicologia , Efeitos Psicossociais da Doença , Qualidade de Vida/psicologia , Esquizofrenia/terapia , Psicologia do Esquizofrênico , Inquéritos e Questionários , Idoso , Feminino , França , Hospitais Psiquiátricos , Humanos , Masculino , Pessoa de Meia-Idade , Psicometria/estatística & dados numéricos , Reprodutibilidade dos Testes
12.
Nervenarzt ; 82(10): 1281-9, 2011 Oct.
Artigo em Alemão | MEDLINE | ID: mdl-21472450

RESUMO

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.


Assuntos
Comparação Transcultural , Esclerose Múltipla Crônica Progressiva/psicologia , Esclerose Múltipla Recidivante-Remitente/psicologia , Qualidade de Vida/psicologia , Inquéritos e Questionários , Atividades Cotidianas/psicologia , Adulto , Lista de Checagem , Feminino , Alemanha , Humanos , Masculino , Pessoa de Meia-Idade , Psicometria/estatística & dados numéricos
13.
Rev Neurol (Paris) ; 167(6-7): 511-21, 2011.
Artigo em Francês | MEDLINE | ID: mdl-21420136

RESUMO

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.


Assuntos
Esclerose Múltipla/psicologia , Qualidade de Vida/psicologia , Inquéritos e Questionários , Atividades Cotidianas , Adaptação Psicológica , Adulto , Avaliação da Deficiência , Relações Familiares , Feminino , França , Humanos , Idioma , Masculino , Pessoa de Meia-Idade , Atividade Motora , Esclerose Múltipla/complicações , Dor/etiologia , Dor/psicologia , Reprodutibilidade dos Testes , Comportamento Sexual
14.
Schizophr Res ; 126(1-3): 192-201, 2011 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-20850951

RESUMO

OBJECTIVE: This study aims to validate a self-administered, multidimensional QoL instrument based on the point of view of caregivers of individuals with schizophrenia. 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. RESULTS: The S-CGQoL contains 25 items describing seven dimensions (Psychological and Physical Well-Being; Psychological Burden and Daily Life; 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 falling within an acceptable range. In addition, the results confirmed the absence of DIF and supported the invariance of the item calibrations. CONCLUSION: The S-CGQoL is a self-administered QoL instrument that presents satisfactory psychometric properties and can be completed in 5 min, thereby fulfilling the goal of brevity sought in research and clinical practice.


Assuntos
Cuidadores/psicologia , Qualidade de Vida , Esquizofrenia/enfermagem , Psicologia do Esquizofrênico , Inquéritos e Questionários , Idoso , Análise Fatorial , Feminino , França/epidemiologia , Humanos , Masculino , Pessoa de Meia-Idade , Satisfação Pessoal , Psicometria , Reprodutibilidade dos Testes
15.
Eur J Cancer Care (Engl) ; 20(4): 483-92, 2011 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-20825458

RESUMO

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.


Assuntos
Cuidadores/psicologia , Neoplasias/enfermagem , Qualidade de Vida , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Neoplasias da Mama/enfermagem , Neoplasias da Mama/psicologia , Feminino , França , Neoplasias Hematológicas/enfermagem , Neoplasias Hematológicas/psicologia , Humanos , Relações Interpessoais , Masculino , Melanoma/enfermagem , Melanoma/psicologia , Pessoa de Meia-Idade , Neoplasias/psicologia , Psicometria/métodos , Inquéritos e Questionários , Adulto Jovem
16.
Ann Phys Rehabil Med ; 53(9): 535-46, 2010 Nov.
Artigo em Inglês, Francês | MEDLINE | ID: mdl-20952267

RESUMO

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.


Assuntos
Marcha , Índice de Gravidade de Doença , Adolescente , Paralisia Cerebral/complicações , Criança , Transtornos Neurológicos da Marcha/diagnóstico , Transtornos Neurológicos da Marcha/etiologia , Humanos , Extremidade Inferior , Variações Dependentes do Observador , Pelve , Postura , Estudos de Amostragem , Método Simples-Cego , Gravação em Vídeo
17.
Rev Mal Respir ; 26(7): 735-43, 2009 Sep.
Artigo em Francês | MEDLINE | ID: mdl-19953015

RESUMO

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.


Assuntos
Dispneia/diagnóstico , Doença Pulmonar Obstrutiva Crônica/diagnóstico , Atividades Cotidianas , Adulto , Interpretação Estatística de Dados , Dispneia/fisiopatologia , Humanos , Seleção de Pacientes , Estudos Prospectivos , Doença Pulmonar Obstrutiva Crônica/fisiopatologia , Testes de Função Respiratória , Fumar , Inquéritos e Questionários
18.
Bone Marrow Transplant ; 43(8): 637-42, 2009 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-19011662

RESUMO

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.


Assuntos
Transplante de Células-Tronco Hematopoéticas/métodos , Leucemia Mieloide Aguda/fisiopatologia , Leucemia Mieloide Aguda/terapia , Leucemia-Linfoma Linfoblástico de Células Precursoras/fisiopatologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Condicionamento Pré-Transplante/métodos , Adolescente , Estatura , Criança , Feminino , Transtornos do Crescimento/etiologia , Humanos , Masculino , Indução de Remissão , Fatores de Tempo , Resultado do Tratamento , Irradiação Corporal Total
19.
Br J Dermatol ; 160(4): 844-8, 2009 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-19067713

RESUMO

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.


Assuntos
Doenças do Desenvolvimento Ósseo/etiologia , Deficiências da Aprendizagem/etiologia , Neurofibroma Plexiforme/etiologia , Neurofibromatose 1/psicologia , Glioma do Nervo Óptico/etiologia , Qualidade de Vida/psicologia , Adolescente , Doenças do Desenvolvimento Ósseo/psicologia , Criança , Estudos Transversais , Feminino , Humanos , Deficiências da Aprendizagem/psicologia , Masculino , Neurofibroma Plexiforme/psicologia , Glioma do Nervo Óptico/psicologia , Paris/epidemiologia , Fenótipo , Índice de Gravidade de Doença , Inquéritos e Questionários
20.
Arch Pediatr ; 15(12): 1749-55, 2008 Dec.
Artigo em Francês | MEDLINE | ID: mdl-18976892

RESUMO

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.


Assuntos
Absenteísmo , Traumatismos do Tornozelo/terapia , Moldes Cirúrgicos , Imobilização , Qualidade de Vida , Adolescente , Bandagens , Criança , Interpretação Estatística de Dados , Seguimentos , Humanos , Estudos Prospectivos , Fatores de Tempo , Resultado do Tratamento
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