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OBJECTIVE: Chronic kidney disease (CKD) and ocular disease share several cardiovascular risk factors as well as pathogenetic mechanisms having Renin-Angiotensin-Aldosterone System (RAAS) as main actor. Moreover, kidney and eyes have common genetic and embryonic origin. In this literature review, we present main evidence supporting this association for early identifying diseases affecting both systems and evaluating potential multi-target therapeutic strategies. MATERIALS AND METHODS: We performed a literature review of the current peer-reviewed English-language randomized controlled studies (RCTs), reference lists of nephrology or ophthalmology textbooks, review articles and relevant studies with ocular or eye and kidney or renal diseases as keywords until March 2020. Prospective and retrospective studies as well as meta-analyses and latest systematic reviews were included. RESULTS: We evaluated a total of 683 records, finally selecting 119 articles related to ocular and renal diseases. Records were divided into two areas: chronic and acute kidney disease and ocular or eye diseases. Some of the examined studies were discarded for population biases/intervention or deemed unfit. CONCLUSIONS: Based on our results, we conclude that there is evidence of a clear association between kidney and eye diseases, being this cross-link mainly based on RAAS dysregulation. Our review suggests that it may be useful to screen CKD patients for associated ocular diseases, such as cataract, glaucoma, diabetic retinopathy and age-related macular degeneration. A comprehensive study of CKD and proteinuric patients should include careful eye examination. Renal impairment in young patients should prompt a search for ocular disease, such as TUNA syndrome or oculo-renal syndrome, in particular if family history of concurrent ocular and renal disease is present. Anti-RAAS agents are mostly recommended in patients with renal and ocular impairment.
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Retinopatia Diabética , Glaucoma , Degeneração Macular , Insuficiência Renal Crônica , Humanos , Sistema Renina-Angiotensina/fisiologiaAssuntos
Angioplastia com Balão , Stents Farmacológicos , Displasia Fibromuscular , Hipertensão , Preparações Farmacêuticas , Obstrução da Artéria Renal , Displasia Fibromuscular/complicações , Displasia Fibromuscular/diagnóstico por imagem , Displasia Fibromuscular/terapia , Humanos , Obstrução da Artéria Renal/diagnóstico por imagem , Obstrução da Artéria Renal/etiologia , Obstrução da Artéria Renal/cirurgiaRESUMO
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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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 SexoRESUMO
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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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 JovemRESUMO
BACKGROUND: In the context of the Official Medicines Control Laboratories plasma pool testing for Parvovirus B19 DNA, we use the cobas TaqScreen DPX test. When we re-evaluated this method using the 3rd B19 DNA WHO IS at the final concentration of 4 log IU/mL, we observed a titre lower than expected, i.e. 3.79 log IU/mL. Therefore, we further investigated the accuracy of the DPX test. MATERIALS & METHODS: The following B19V DNA materials were tested by using both the DPX test and an in-house real-time PCR: The 1st, 2nd and 3rd WHO ISs for B19V DNA The Non WHO B19V DNA Reference Material for NAT The Biological Reference Preparation B19 virus DNA for NAT testing, batch 1 . RESULTS: The DPX test showed a good accuracy for all B19V DNA materials with the exception of the 3rd WHO IS for B19V DNA. In fact, an underestimation of about 38% was observed for all dilutions of this standard with respect to the nominal titre. With the B19V in-house real-time PCR, all four materials proved to be well calibrated against the 1(st) WHO IS for B19V DNA, used as external standard curve. CONCLUSION: In this study, we demonstrated that the DPX test underestimates the B19V DNA content of the 3rd WHO IS for B19V DNA and that this is not due to an incorrect potency assigned to the standard but, most probably, to a mismatch between the primers/probe and the sequence of the target region in the 3rd WHO IS for B19V DNA.
Assuntos
DNA Viral/sangue , Infecções por Parvoviridae/diagnóstico , Parvovirus B19 Humano/genética , Reação em Cadeia da Polimerase em Tempo Real , Sondas de DNA/química , Sondas de DNA/metabolismo , DNA Viral/normas , Humanos , Infecções por Parvoviridae/virologia , Parvovirus B19 Humano/isolamento & purificação , Reação em Cadeia da Polimerase em Tempo Real/métodos , Reação em Cadeia da Polimerase em Tempo Real/normas , Padrões de Referência , Organização Mundial da SaúdeRESUMO
BACKGROUND: GSK2586184 is a selective oral Janus kinase (JAK)1 inhibitor being evaluated as a treatment for moderate-to-severe plaque-type psoriasis. OBJECTIVES: To assess the relationship between dose of GSK2586184 and clinical response, primarily by the Psoriasis Area Severity Index (PASI). METHODS: Sixty patients with moderate-to-severe plaque psoriasis were randomized to cohort A: 100 mg, 200 mg or 400 mg GSK2586184 twice daily or placebo; and eight were randomized to open-label cohort B, a small exploratory cohort treated with 400 mg GSK2586184 twice daily, to explore differential gene expression. RESULTS: At week 12, a 75% reduction in PASI (PASI 75) response rates in the intent-to-treat population were 0% in the placebo group compared with 13%, 25% and 57% in the 100 mg, 200 mg and 400 mg GSK2586184 twice-daily groups, respectively. Increases in the proportion of PASI 75 responses were seen across all dose levels by week 4. Improvement in itch and quality of life were observed at all doses relative to placebo with the greatest improvement seen in the 400-mg dose group. Overall, the incidence of adverse events (AEs) was similar across treatment groups, and no relationship between frequency of AE and GSK2586184 dose was identified. Differential gene expression was observed in involved and uninvolved skin at baseline and in involved skin after 2 weeks of treatment with GSK2586184. CONCLUSIONS: Our study demonstrates that 12 weeks of treatment with GSK2586184 resulted in clinical improvement and was generally well tolerated in patients with moderate-to-severe plaque-type psoriasis.
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Azetidinas/administração & dosagem , Fármacos Dermatológicos/administração & dosagem , Psoríase/tratamento farmacológico , Triazóis/administração & dosagem , Adolescente , Adulto , Idoso , Azetidinas/farmacocinética , Fármacos Dermatológicos/farmacocinética , Relação Dose-Resposta a Droga , Método Duplo-Cego , Esquema de Medicação , Feminino , Expressão Gênica , Humanos , Janus Quinase 1/antagonistas & inibidores , Masculino , Pessoa de Meia-Idade , Psoríase/genética , Qualidade de Vida , Resultado do Tratamento , Triazóis/farmacocinética , Adulto JovemAssuntos
Albuminas/administração & dosagem , Diuréticos/administração & dosagem , Furosemida/administração & dosagem , Glomerulonefrite Membranosa/tratamento farmacológico , Síndrome Nefrótica/tratamento farmacológico , Insuficiência Renal Crônica/tratamento farmacológico , Idoso , Albuminas/efeitos adversos , Quimioterapia Combinada , Feminino , Humanos , Infusões Intravenosas , Masculino , Readmissão do Paciente , Recidiva , Resultado do Tratamento , Redução de PesoRESUMO
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.
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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 UrbanaRESUMO
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.
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Atividades Cotidianas/classificação , Procedimentos Ortopédicos , Avaliação de Resultados em Cuidados de Saúde , Qualidade de Vida , Criança , Medicina Baseada em Evidências , França , Humanos , Estudos LongitudinaisRESUMO
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.
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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/psicologiaRESUMO
GSK249320, a monoclonal antibody directed against myelin-associated glycoprotein (MAG), is being developed for the enhancement of recovery of function poststroke. Potential safety concerns of adverse effects on myelin led to the inclusion of pharmacodynamic measures of peripheral and central neuronal function in this first-time-in-human (FTIH) study. The study also evaluated general safety, pharmacokinetics, and immunogenicity of GSK249320. Single intravenous infusions of GSK249320 (0.04, 0.4, 1.2, 3.5, 10, and 25 mg/kg) or placebo were administered to 47 healthy subjects aged 18-60 years. GSK249320 was well tolerated at all doses. No clinically significant abnormalities were observed in neurological examinations, nerve conduction tests (NCTs), quantitative sensory tests (QSTs), clinical laboratory tests, or electrocardiograms. There were no severe or serious adverse events. GSK249320 had a half-life (HL) of 21 days and a volume of distribution at steady state of 45.8 ml/kg, with AUC showing dose linearity. GSK249320 did not induce antidrug antibodies.
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Anticorpos Monoclonais Humanizados/farmacocinética , Anticorpos Monoclonais/farmacocinética , Glicoproteína Associada a Mielina/antagonistas & inibidores , Adolescente , Adulto , Anticorpos Monoclonais/efeitos adversos , Anticorpos Monoclonais/farmacologia , Anticorpos Monoclonais Humanizados/efeitos adversos , Anticorpos Monoclonais Humanizados/farmacologia , Relação Dose-Resposta a Droga , Eletrocardiografia , Feminino , Meia-Vida , Humanos , Infusões Intravenosas , Masculino , Pessoa de Meia-Idade , Glicoproteína Associada a Mielina/imunologia , Condução Nervosa , Limiar Sensorial , Método Simples-Cego , Adulto JovemRESUMO
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.
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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 QuestionáriosRESUMO
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).
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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 QuestionáriosRESUMO
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.
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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 RetrospectivosRESUMO
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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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 , NoruegaRESUMO
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 , AutorrelatoRESUMO
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 TestesRESUMO
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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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 numéricosRESUMO
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.