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1.
Compr Psychiatry ; 80: 109-115, 2018 01.
Artículo en Inglés | MEDLINE | ID: mdl-29091776

RESUMEN

BACKGROUND: According to the Self-Regulation Model, illness perceptions influence an individual's coping (such as the taking of treatment) and emotional response to their illness. Emerging research suggests that this model could be used to explore illness perceptions in mental health. The aim of this exploratory study is, firstly, to measure and describe illness perception in French patients with a bipolar diagnosis and, secondly, to explore associations between illness perceptions and adherence in this population. METHOD: Thirty-eight French patients with bipolar disorder completed the Illness Perception Questionnaire for Schizophrenia (except the identity dimension). We measured medication adherence with the Medication Adherence Rating Scale. RESULTS: Our results showed that patients with high perceptions concerning treatment control, low perceptions of negative emotions of their mental illness, low perception of consequences and high comprehension of their disorder had a better adherence. CONCLUSIONS: Illness perceptions can provide a framework for understanding adherence in bipolar disorder, and the findings could have important clinical and research implications.


Asunto(s)
Adaptación Psicológica , Trastorno Bipolar/diagnóstico , Trastorno Bipolar/psicología , Percepción , Encuestas y Cuestionarios , Adulto , Anciano , Trastorno Bipolar/tratamiento farmacológico , Comprensión , Femenino , Humanos , Masculino , Cumplimiento de la Medicación/psicología , Persona de Mediana Edad , Educación del Paciente como Asunto/métodos , Esquizofrenia/tratamiento farmacológico , Encuestas y Cuestionarios/normas
2.
Psychol Health Med ; 21(3): 295-308, 2016.
Artículo en Inglés | MEDLINE | ID: mdl-26153853

RESUMEN

Time perspective (TP) is a fundamental dimension of the psychological construction of time. It refers to a subjective experience and can be defined as the relationship that individuals and groups have with the present, past, and future. Studies have shown that it is interesting to take into account TP in the field of health, especially for the study of the psychological distress (PD) of individuals faced with aversive situations. We conducted a research, which aimed to explore the relationship between TP and PD in patients with chronic pain. A total of 264 first-time patients (72.3% women; mean age = 49 years) at CHU Timone (Marseille) pain center answered a questionnaire included TP, socioeconomic status, pain beliefs (PB), pain characteristics, and sociodemographic characteristics. Using hierarchical regression analyses adjusted to the characteristics of pain, sociodemographic characteristics, and PB, we can observe significant relationships between different components of TP, socioeconomic status, and PD. These results emphasize the importance of TP as psychosocial variable in the analysis of PD in patients with chronic pain. These results also lead us to point out the role of the socioeconomic status that predicts levels of PD.


Asunto(s)
Dolor Crónico/psicología , Clase Social , Estrés Psicológico/psicología , Percepción del Tiempo , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Actitud Frente a la Salud , Femenino , Humanos , Masculino , Persona de Mediana Edad , Pobreza , Análisis de Regresión , Estrés Psicológico/epidemiología , Encuestas y Cuestionarios , Adulto Joven
3.
Rech Soins Infirm ; (127): 16-27, 2016 Dec.
Artículo en Francés | MEDLINE | ID: mdl-28186479

RESUMEN

Introduction : many structured educational programs, using the concept of self-efficacy, have been studied in English-speaking countries. Background : tools were developed in English to assess this concept along with treatment adherence. However, there seems to be no French version of these tools in scientific literature. Aim : to adapt the tools to the French language and to test the psychometric properties of the Self-Efficacy for Diabetes Self-Management (SEDM) and the Diabetes Self-Management Profile (DSMP). Methods : a cross-cultural adaptation of the SEDM and DSMP in French was performed. The psychometric properties were tested in a pilot study that took place between January 1st and December 31st, 2015. Results : Cronbach's alpha coefficient of SEDM in French was 0.84, test-retest reliability 0.80 and sensitivity to change was moderate. The Cronbach's alpha and sensitivity to change of the French DSMP were low, and the test-retest was 0.71. Discussion and conclusions : the first results of the psychometric properties of French SEDM were rather encouraging. The use of the French version of DSMP seems compromised in terms of psychometric properties and the opinion of the participants.


Asunto(s)
Comparación Transcultural , Diabetes Mellitus Tipo 1/terapia , Cooperación del Paciente , Psicometría , Adaptación Psicológica , Adolescente , Conducta del Adolescente/etnología , Conducta del Adolescente/fisiología , Conducta del Adolescente/psicología , Niño , Femenino , Francia/epidemiología , Humanos , Lenguaje , Masculino , Cooperación del Paciente/etnología , Cooperación del Paciente/psicología , Cooperación del Paciente/estadística & datos numéricos , Proyectos Piloto , Psicometría/métodos , Psicometría/normas , Autocuidado , Autoeficacia , Cambio Social , Encuestas y Cuestionarios/normas
4.
Sante Publique ; 26(6): 763-77, 2014.
Artículo en Francés | MEDLINE | ID: mdl-25629670

RESUMEN

INTRODUCTION: It has been established that the psychosocial skills of patients need to be strengthened in the context of therapeutic patient education, to help them to more effectively manage their disease and the associated treatments. This intervention is barely feasible at the present time because of unresolved conceptual, methodological and operational problems, particularly problems concerning the identification and evaluation of the psychosocial skills to be developed. OBJECTIVES: This study established an inventory of psychosocial skills targeted by educational intervention, and identified the criteria used to demonstrate acquisition of these skills. METHOD: A systematic review of the literature was performed on 60 articles dealing with evaluation of educational intervention in patients with diabetes. RESULTS: Skills were identified in one quarter of these articles. They referred to communication and interpersonal relations, decision-making and critical thinking, and also to coping and self-management. These articles used more often used medical endpoints than psychosocial endpoints. DISCUSSION: Psychosocial skills are poorly explained and poorly evaluated. Interventions, often based on a biomedical approach, focus more on self-care skills. The paper concludes on the importance of developing a psychosocial approach to provide a better conceptualization of the notion of social skills.


Asunto(s)
Diabetes Mellitus Tipo 1/terapia , Educación del Paciente como Asunto/métodos , Autocuidado/métodos , Adaptación Psicológica , Comunicación , Toma de Decisiones , Diabetes Mellitus Tipo 1/psicología , Humanos , Relaciones Interpersonales , Habilidades Sociales
5.
Sante Publique ; 26(3): 283-95, 2014.
Artículo en Francés | MEDLINE | ID: mdl-25291876

RESUMEN

BACKGROUND: The general concept of therapeutic patient education (TPE), defined by the European Office of the World Health Organization (WHO) in 1998, could be questionable when applied to children due to the many specificities of this population in the field of health and education. AIM: To identify the specificities of therapeutic patient education applied to the paediatric population. METHODS: Concept analysis is based on Rodgers' 5-activities method: 1) Identifying the concept 2) selecting the appropriate realm of literature 3) collecting data from selected publications 4) analysing the results to determine the characteristics of the concept studied 5) discussion of the implications and prospects for development of the concept. RESULTS: Thirty-five publications were included in this concept clarification. Five attributes emerged: relational triad, collaborative partnership, adaptation of learning, gradual and progressive acquisition of skills, and creativity. DISCUSSION: The results of this first concept analysis shed light on the process of knowledge transfer over time. The five characteristics, consistent with the field of health promotion, could be strengthened by a grounded theory.


Asunto(s)
Educación del Paciente como Asunto , Pediatría , Niño , Humanos , Factores de Tiempo
6.
Blood ; 117(17): 4442-8, 2011 Apr 28.
Artículo en Inglés | MEDLINE | ID: mdl-21278355

RESUMEN

We evaluate the prevalence and risk factors of the metabolic syndrome (MS) in young adults surviving childhood leukemia. During the years 2007 to 2008, assessment of MS was proposed to all adults included in the Leucémie de l'Enfant et de l'Adolescent program, a French prospective multicentric cohort of leukemia survivors. Among 220 eligible patients, 184 (83.6%) had complete evaluation. Median age at evaluation and follow-up duration were 21.2 and 15.4 years. Overall prevalence of MS was 9.2% (95% confidence interval, 5.5-14.4). There was no association of MS with sex, age at diagnosis, leukemia subtype, steroid therapy, and central nervous system irradiation. Patients were stratified according to 4 therapeutic modalities: chemotherapy alone (n = 97), chemotherapy and central nervous system irradiation (n = 27), hematopoietic stem cell transplantation (HSCT) without (n = 17) or with (n = 43) total body irradiation (TBI). MS occurred in 5.2%, 11.1%, 5.9%, and 18.6% of them, respectively. The higher risk observed in the HSCT-TBI group was significant in univariate and in multivariate analysis (odds ratio [OR] = 3.9, P = .03). HSCT with TBI was associated with a higher rate of hypertriglyceridemia (OR = 4.5, P = .004), low level of high-density lipoprotein cholesterol (OR = 2.5, P = .02), and elevated fasting glucose (OR = 6.1, P = .04) So, TBI is a major risk factor for MS. Further studies are warranted to explain this feature.


Asunto(s)
Síndrome Metabólico/epidemiología , Leucemia-Linfoma Linfoblástico de Células Precursoras/epidemiología , Adolescente , Adulto , Antineoplásicos/uso terapéutico , Glucemia/metabolismo , Niño , HDL-Colesterol/sangre , Terapia Combinada , Femenino , Estudios de Seguimiento , Trasplante de Células Madre Hematopoyéticas , Humanos , Hipertrigliceridemia/epidemiología , Masculino , Síndrome Metabólico/metabolismo , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamiento farmacológico , Prevalencia , Estudios Prospectivos , Factores de Riesgo , Esteroides/uso terapéutico , Adulto Joven
7.
Blood ; 118(6): 1481-9, 2011 Aug 11.
Artículo en Inglés | MEDLINE | ID: mdl-21596857

RESUMEN

Femoral and lumbar bone mineral densities (BMDs) were measured in 159 adults enrolled in the Leucémies de l'Enfant et de l'Adolescent program, a French prospective multicentric cohort of childhood leukemia survivors. BMDs were expressed as Z-scores, and multivariate linear regression analyses were used to construct association models with potential risk factors. Mean age at evaluation and follow-up was 23 and 14.7 years, respectively. In the whole cohort, mean femoral Z-score was -0.19 ± 0.08. Two factors were associated with lower femoral BMD transplantation (-0.49 ± 0.15 vs -0.04 ± 0.10 in the chemotherapy group; P = .006) and female sex (-0.34 ± 0.10 vs -0.03 ± 0.13; P = .03). Among patients who received a transplant, the only significant risk factor was hypogonadism (-0.88 ± 0.16 vs -0.10 ± 0.23; P = .04). A slight reduction in lumbar BMD (mean Z-score, -0.37 ± 0.08) was detected in the whole cohort without difference between the transplantation and chemotherapy groups. Among patients who received a transplant, younger age at transplantation was correlated with a low lumbar BMD (P = .03). We conclude that adults who had received only chemotherapy for childhood leukemia have a slight reduction in their lumbar BMD and a normal femoral BMD. Patients who received a transplant with gonadal deficiency have a reduced femoral BMD which might increase the fracture risk later in life.


Asunto(s)
Densidad Ósea , Leucemia Mieloide/metabolismo , Leucemia-Linfoma Linfoblástico de Células Precursoras/metabolismo , Sobrevivientes , Absorciometría de Fotón , Enfermedad Aguda , Adolescente , Protocolos de Quimioterapia Combinada Antineoplásica/uso terapéutico , Niño , Dexametasona/administración & dosificación , Dexametasona/efectos adversos , Femenino , Estudios de Seguimiento , Trasplante de Células Madre Hematopoyéticas , Humanos , Leucemia Mieloide/terapia , Modelos Lineales , Masculino , Análisis Multivariante , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Prednisona/administración & dosificación , Prednisona/efectos adversos , Estudios Prospectivos , Adulto Joven
8.
Qual Life Res ; 22(10): 2721-36, 2013 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-23563703

RESUMEN

PURPOSE: Numerous studies have shown the impact of inflammatory bowel disease (IBD) on patient quality of life (QoL), but no research has yet examined the impact of time's experience in the assessment of QoL in IBD. Our goal is to explore the links between QoL and time perspective (TP) and the role of TP as a determinant of QoL. METHODS: Data were collected from 156 patients who completed a questionnaire comprising a generic measure (SF-12) and a specific measure (Inflammatory Bowel Disease Questionnaire) of QoL, a measure of TP (ZTPI) and a collection of socio-demographic and medical data. RESULTS: Correlational analyses illustrated the links between TP and QoL. Regression analyses revealed that records of Past-negative and Present-hedonistic perspectives predicted QoL. Past-negative time perspective seemed to have a deleterious impact, while a Present-hedonistic time perspective predicted a better QoL, and this was irrespective of the level of severity of the disease. CONCLUSIONS: These results suggest the importance of considering TP as a determinant of psychological QoL. They corroborate earlier findings on the relationship between TP and QoL associated with other pathologies. The past-negative register, which indicates rumination, tells us about the importance of considering the psychological experience of time in order to improve the QoL of patients.


Asunto(s)
Enfermedades Inflamatorias del Intestino/psicología , Calidad de Vida , Autoimagen , Adulto , Femenino , Humanos , Enfermedades Inflamatorias del Intestino/complicaciones , Enfermedades Inflamatorias del Intestino/terapia , Masculino , Persona de Mediana Edad , Escalas de Valoración Psiquiátrica , Análisis de Regresión , Perfil de Impacto de Enfermedad , Factores Socioeconómicos , Encuestas y Cuestionarios , Factores de Tiempo
9.
Child Welfare ; 92(3): 47-71, 2013.
Artículo en Inglés | MEDLINE | ID: mdl-24818430

RESUMEN

Here, the quality of life (QoL) of adolescents living in residential group homes (RGHs), is compared to QoL of a general adolescent population, and links between QoL and the presence of mental disorders are examined. Adolescents living in RGHs reported a significantly lower perception of their overall QoL compared to the general adolescent population. The presence of mental disorders was significantly and negatively associated with QoL scores. Some indices of QoL (physical and psychological well-being, relationship with teachers) did not show differences with the general population, indicating that mental health needs or lack of wellbeing are expressed in unusual ways.


Asunto(s)
Hogares para Grupos/estadística & datos numéricos , Trastornos Mentales/epidemiología , Calidad de Vida , Adolescente , Femenino , Francia/epidemiología , Humanos , Masculino , Psicología del Adolescente , Bienestar Social
10.
Health Qual Life Outcomes ; 10: 122, 2012 Sep 28.
Artículo en Inglés | MEDLINE | ID: mdl-23017005

RESUMEN

BACKGROUND: While data for preterm children health-related quality of life are available, there are little data on the perception of health-related quality of life evaluation by physicians who manage preterm children, or its use in real life and decision making. The aim of this qualitative study is to highlight among physicians, themes of reflection about health-related quality of life in extremely preterm children (less than 28 weeks' gestation). METHODS: Focus groups at a French University Hospital with physicians who manage extremely preterm children: obstetricians, intensive care physicians, neonatal physicians and paediatric neurologists. The focus groups allowed the participants to discuss (drawing on their personal experience), three principal topics regarding the health-related quality of life of preterm children: representation, expectations in daily practice and evaluation method. RESULTS: We included fourteen participants in the three focus groups. Many themes emerged from the focus groups: approaches for defining health-related quality of life and difficulties of utilization, the role that health-related quality of life should have in the system of care, the problem of standards and evidence-based decision making. Physicians had difficulties with taking positions regarding this concept. There were no differences by gender, age or seniority, but points of view varied by specialty and type of practice. Physicians who had longer specialized care for extremely preterm children were more sensitive to the impact of preterm complications on health-related quality of life. CONCLUSIONS: This study provides preliminary results about physicians' perspective on the health-related quality of life of extremely preterm children. The themes emerged from the focus groups are classically described in other domains but not all in so clear a way (definition, interests and limits, ethical reflection). This approach was never developed in the field of prematurity with well-knowed consequences on quality of life. These results require to be confirmed on a larger representative sample. The themes and questions of this broad opinion survey will rest on the information issued from our preliminary interviews.


Asunto(s)
Indicadores de Salud , Evaluación de Procesos y Resultados en Atención de Salud/métodos , Pediatría , Médicos de Familia/psicología , Nacimiento Prematuro/terapia , Calidad de Vida , Adulto , Niño , Femenino , Grupos Focales , Francia , Humanos , Masculino , Neurología , Evaluación de Procesos y Resultados en Atención de Salud/normas , Relaciones Médico-Paciente , Médicos de Familia/estadística & datos numéricos , Investigación Cualitativa , Especialización
11.
Pediatr Hematol Oncol ; 29(5): 428-39, 2012 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-22712832

RESUMEN

This study describes patient adherence to leukemia maintenance therapy and the factors associated with nonadherence, with a particular focus on the different age groups concerned. Sixty-four in-depth interviews were performed in three centers among 31 parents of children, 12 parents of adolescents, 12 adolescents, and 9 adult patients. Adherence was determined through a multimethod approach based on patient and/or parent responses to three self-administered questions and patient and/or parent interviews. The results were compared with physician evaluation of adherence. Factors explaining nonadherence were investigated in the in-depth interviews and by statistical analysis of self-administered questionnaires. Intentional nonadherence occurred rarely (4/52 patients, 8%) following poor tolerance of the maintenance therapy. Despite a high motivation to follow the maintenance therapy, repeated forgetfulness (8/52, 15%) was not rare and rarely detected by physicians. Nonadherence increased with age, but also existed among children. Outings, the administration of therapy at bedtime, the lack of monitoring, a low socioeconomic status, and the hepatic side effects of the treatment were also associated with nonadherence. Declared nonadherence of leukemia maintenance therapy is not negligible and should be screened at follow-up consultations using three simple questions.


Asunto(s)
Leucemia/psicología , Leucemia/terapia , Cooperación del Paciente/psicología , Encuestas y Cuestionarios , Adolescente , Adulto , Factores de Edad , Niño , Preescolar , Femenino , Humanos , Masculino
12.
Glob Health Promot ; 29(1): 119-129, 2022 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-33938297

RESUMEN

OBJECTIF: Le Programme de Développement Affectif et Social (PRODAS) est un programme de développement des compétences psychosociales des enfants ou adolescents mis en œuvre depuis 2005 en milieu scolaire par une association française (le Planning familial). L'objectif de cet article était de synthétiser les connaissances sur les effets de ce programme, afin de contribuer à l'étude de sa transférabilité. MÉTHODES: La revue de littérature réalisée a porté sur des études datant de 1970 à 2017. Ont été interrogées les bases de données : ScienceDirect, PsycNET, ERIC, PsycINFO, erudit, ISIDOR, Cochrane. Les mots clés utilisés étaient « Human Development Program ¼ ou « PRODAS ¼. RÉSULTATS: Une amélioration, le plus souvent significative, des compétences émotionnelles et sociales des enfants et des adolescents était rapportée. Une relation de type dose-effet était également suggérée par certains résultats. Peu de données étaient disponibles chez les jeunes enfants (école maternelle) et aucune étude n'explorait les effets du programme à long terme. CONCLUSION: Cette synthèse a permis de mettre en lumière les principaux effets du PRODAS. Toutefois, considérant que ce programme est un des seuls à s'adresser aux enfants dès 4 ans en France, de futures études portant sur des enfants d'écoles maternelles, avec un suivi à long terme, seraient utiles pour compléter les données sur l'efficacité d'un tel programme.

13.
Haematologica ; 96(11): 1712-4, 2011 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-21791466

RESUMEN

A cohort of 106 patients included in the French National Registry for Thalassemia were genotyped for 5 genetic modifiers of severity: i) ß-thalassemia mutations; (ii) the XmnI SNP; (iii) the -3.7 kb α-thal deletion; (iv) the tag-SNP rs 11886868 in BCL11A exon 2; and (v) the tag-SNP rs9399137 in the HBSB1L-cMYB inter-region. Multivariate analysis was performed to study the risk of thalassemia Intermedia phenotype associated with the different combinations of alleles. The presence or absence of the favorable alleles could accurately predict the type of thalassemia in 83.2% of the cases. The percentage of correct predictions made from the ß-thalassemia mutations and the XmnI SNP alone were significantly improved by the adjustment with the 3 other modifiers; from 73.6% to 83.2% (P<0.001). In this study, we showed that predictions based on genetic modifiers can foresee the Major or Intermedia type of ß-thalassemia, even in cohorts of patients with various ß-globin genotypes.


Asunto(s)
Proteínas Portadoras/genética , Mutación , Proteínas Nucleares/genética , Polimorfismo de Nucleótido Simple , Proteínas Proto-Oncogénicas c-myb/genética , Sistema de Registros , Talasemia beta/clasificación , Talasemia beta/genética , Adolescente , Adulto , Niño , Estudios de Cohortes , Femenino , Francia , Humanos , Masculino , Persona de Mediana Edad , Proteínas Represoras
14.
Mult Scler ; 17(10): 1238-49, 2011 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-21669936

RESUMEN

BACKGROUND: Multiple sclerosis (MS) can have psychological and socioeconomic consequences that affect patients' health-related quality of life (HRQoL) as much as physical disability. OBJECTIVE: To determine the clinical and sociodemographic factors affecting HRQoL in a large international study using the MS International QoL (MusiQoL) questionnaire. METHODS: Patients aged >18 years with a diagnosis of MS for >6 months or clinically isolated syndrome (CIS) were enrolled. Sociodemographic and clinical data were recorded, and patients completed the MusiQoL and 36-item short form (SF-36) health survey questionnaires. RESULTS: In total, 1992 patients from 15 countries were enrolled (mean [standard deviation] age: 42.3 [12.5] years; 70.5% women; 70.4% with relapsing-remitting MS). Multivariate multiple regression analyses identified lower educational level, higher Expanded Disability Status Scale (EDSS) score, cognitive impairment, being single and shorter time since last relapse as significant predictors of lower MusiQoL global index scores (p < 0.05). Older age, female sex, higher EDSS score, shorter time since last relapse and receiving current MS treatment were significant predictors of lower SF-36 physical component summary scores (p < 0.05). The SF-36 mental component summary score was linked to occupational status, inpatient/outpatient status, time since last relapse, and whether the patient was receiving MS treatment (p < 0.05). CONCLUSION: Sociodemographic and clinical factors are linked to HRQoL in patients with MS. Interventions that affect these factors might be expected to influence HRQoL.


Asunto(s)
Estado de Salud , Esclerosis Múltiple/complicaciones , Esclerosis Múltiple/epidemiología , Esclerosis Múltiple/psicología , Calidad de Vida , Adulto , Anciano , Anciano de 80 o más Años , Estudios Transversales , Evaluación de la Discapacidad , Femenino , Humanos , Masculino , Persona de Mediana Edad , Análisis Multivariante , Factores Socioeconómicos , Encuestas y Cuestionarios , Adulto Joven
15.
BMC Neurol ; 11: 17, 2011 Feb 02.
Artículo en Inglés | MEDLINE | ID: mdl-21288343

RESUMEN

BACKGROUND: Nearly half of all patients diagnosed with multiple sclerosis (MS) will develop cognitive dysfunction. Studies highlighted from no/weak impact to a strong impact of cognitive impairment on quality of life (QoL). The aim of this study was to assess the impact of cognitive dysfunction on self-reported QoL in MS patients while considering key confounding factors. DESIGN: cross-sectional study. INCLUSION CRITERIA: MS patients of any disease subtype. DATA COLLECTION: sociodemographic (age, gender, marital status, education level, and occupational activity) and clinical data (MS subtype, disease duration); MS disability (Expanded Disability Status Scale, EDSS); depression (Beck Depression Inventory); fatigue (Modified Fatigue Impact Scale); QoL (SF36 and MusiQoL); and neuropsychological performance (Brief Repeatable Battery of Neuropsychological Tests, BRB-N). STATISTICAL ANALYSIS: multiple linear regressions (forward-stepwise selection). RESULTS: One hundred and twenty-four patients were enrolled. Performance on BRB-N subtests varied widely (6% to 70% abnormal). The BRB-N classified 37-78% of the patients as cognitively impaired, depending on the definition of cognitive impairment. No links were found between the MusiQoL index and cognitive subtests, whereas marital status, EDSS, and depression were found to be independent predictive factors. CONCLUSIONS: The present study demonstrated the weak and scarce association between cognitive impairment and QoL, when the key confounding factors were considered. These results need to be confirmed with larger samples and more accurate tests of cognitive function.


Asunto(s)
Trastornos del Conocimiento/psicología , Esclerosis Múltiple/psicología , Calidad de Vida/psicología , Trastornos del Conocimiento/complicaciones , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Esclerosis Múltiple/complicaciones , Esclerosis Múltiple/diagnóstico , Pruebas Neuropsicológicas , Escalas de Valoración Psiquiátrica , Factores de Riesgo , Autoinforme , Índice de Severidad de la Enfermedad
16.
BMC Pediatr ; 11: 8, 2011 Jan 27.
Artículo en Inglés | MEDLINE | ID: mdl-21272317

RESUMEN

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


Asunto(s)
Salud , Psicología del Adolescente , Calidad de Vida , Encuestas y Cuestionarios , Adolescente , Brasil/epidemiología , Cultura , Emociones , Familia , Femenino , Humanos , Lenguaje , Masculino , Salud Mental , Morbilidad , Psicometría , Reproducibilidad de los Resultados , Autoimagen , Ajuste Social , Factores Socioeconómicos
17.
J Health Psychol ; 26(2): 270-282, 2021 02.
Artículo en Inglés | MEDLINE | ID: mdl-30426776

RESUMEN

A total of 10 focus groups were held with adolescents living with diabetes, their parents and health professionals in order to explore their needs in therapeutic education. The analysis showed that the relationship of trust was a central concern for a number of participants. Several adults were divided between a feeling of confidence inspired by the need to empower adolescents to cope with the chronic condition and a sense of distrust inspired by the idea of carelessness and irresponsibility thought to characterize adolescence. Adolescents, for their part, seemed relatively clear-sighted about how they can be perceived, and blamed adults for not trusting them. These findings emphasize the importance of considering the representations at stake in the dynamics of the therapeutic relationship in order to better understand the construction of the relational climate.


Asunto(s)
Padres , Confianza , Adaptación Psicológica , Adolescente , Adulto , Niño , Enfermedad Crónica , Grupos Focales , Humanos , Investigación Cualitativa
18.
Haematologica ; 95(5): 724-9, 2010 May.
Artículo en Inglés | MEDLINE | ID: mdl-20007138

RESUMEN

BACKGROUND: beta-thalassemia is a rare disease in France, encountered mainly in patients originating from Italy and North Africa. In the setting of the recent French plan for rare diseases, a National Registry for thalassemia has been developed since 2005. Epidemiological and clinical data have been collected on living patients with beta-thalassemia major or intermedia, including those who underwent hematopoietic stem cell transplantation. DESIGN AND METHODS: A standardized questionnaire was sent to clinicians throughout the national professional networks involved in the management of thalassemic patients and data were updated every 18 months. A cross-sectional study was performed in February 2009. RESULTS: Data on 378 patients (267 with thalassemia major) with a median age of 20 were recorded. Hematopoietic stem cell transplantation was performed in 52 patients. Stature, rates of parenthood, splenectomy, and cholecystectomy were no different between non-transplanted thalassemia major and thalassemia intermedia patients, after adjustment for age. Among the 215 non-transplanted thalassemia major patients, the median serum ferritin level was 1240 ng/mL and the rates of iron-related complications were 10%, 6%, 10% and 48% for cardiac failure, diabetes, hypothyroidism, and hypogonadism, respectively. From 2005 to 2008, a dramatic switch in chelation treatment, from deferoxamine to deferasirox, was observed. CONCLUSIONS: The rates of complications of iron overload in French thalassemia major patients appeared similar to those reported in other developed countries in which this condition is not endemic. There were no significant differences in height and parenthood rates between patients with the major and the intermedia forms of the disease, underlining the progress in clinical care. Future developments will focus on mortality and morbidity under oral chelation treatment.


Asunto(s)
Sistema de Registros , Talasemia beta/complicaciones , Talasemia beta/terapia , Adolescente , Adulto , Enfermedades Cardiovasculares/complicaciones , Enfermedades Cardiovasculares/epidemiología , Enfermedades Cardiovasculares/terapia , Niño , Preescolar , Estudios de Cohortes , Estudios Transversales , Complicaciones de la Diabetes/complicaciones , Complicaciones de la Diabetes/epidemiología , Complicaciones de la Diabetes/terapia , Femenino , Estudios de Seguimiento , Francia/epidemiología , Humanos , Lactante , Sobrecarga de Hierro/complicaciones , Sobrecarga de Hierro/epidemiología , Sobrecarga de Hierro/terapia , Masculino , Persona de Mediana Edad , Resultado del Tratamiento , Adulto Joven , Talasemia beta/epidemiología
19.
Health Qual Life Outcomes ; 7: 35, 2009 Apr 21.
Artículo en Inglés | MEDLINE | ID: mdl-19383145

RESUMEN

BACKGROUND: Health-related quality of life (HRQL) outcome measures are complex and for further application in clinical practice and health service research the meaning of their scorings should be studied in depth. The aim of this study was to increase the interpretability of the Spanish VSP-A and KINDL-R scores. METHODS: A representative sample of adolescents aged 12 to 18 years old was selected in Spain. The Spanish VSP-A and KINDL-R, two generic HRQL measures (range: 0-100), were self-administered along with other external anchor measures (Strengths and Difficulties Questionnaire, Oslo Social Support Scale and self-declaration of chronic conditions) and sent by post. Percentiles of both HRQL questionnaires were obtained by gender, and age group and effect sizes (ES) were calculated. Receiver Operating Characteristic curves and related sensitivity (SE) and specificity (SP) values were also computed. RESULTS: The Spanish VSP-A and KINDL-R were completed by 555 adolescents. A moderate ES was shown in Psychological well-being between younger and older girls (ES: 0.77) in the VSP-A and small ES in the KINDL (ES: 0.41) between these groups. A SE and SP value close to 0.70 was associated to a global HRQL score of 65 in the VSP-A and 70 in the KINDL-R, when compared to anchors measuring mental and psychosocial health. Adolescents with scores bellow these cut-off points showed a moderate probability of presenting more impairment in their HRQL. CONCLUSION: The results of this study will be of help to interpret the VSP-A AND KINDL-R questionnaires by comparing with the general population and also provide cut-off points to define adolescents with health problems.


Asunto(s)
Estado de Salud , Calidad de Vida , Encuestas y Cuestionarios/normas , Adolescente , Niño , Estudios Transversales , Femenino , Humanos , Masculino , España
20.
Int J Qual Health Care ; 21(4): 243-52, 2009 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-19549673

RESUMEN

OBJECTIVE: To develop a generic French self-administered instrument for measuring hospitalized patients' satisfaction based on the patient's point of view: the questionnaire for satisfaction of hospitalized (QSH) patients. DESIGN: The development was supervised by a steering committee and undertaken through three standard steps. Item generation was derived from 95 face-to-face interviews, performed in hospitalized patients and in patients scheduled to be admitted. The item reduction led to a 69-item questionnaire. The validation process was based on validity, reliability and some aspects of external validity. SETTING: Medical, surgical and obstetrical departments (n = 187) of public hospitals (n = 11) from different French regions (n = 3). PARTICIPANTS: Eligible patients were adult subjects hospitalized for at least 24 h. MAIN OUTCOME MEASURES: QSH, sociodemographic data, hospitalization department, visual analogue scales of satisfaction. RESULTS: The final version of QSH contained 45 items describing 9 dimensions, leading to 2 composite scores (staff and structure index). The factor structure accounted for 71% of the total variance. Internal consistency was satisfactory (item-internal consistency over 0.40; Cronbach's alpha coefficients ranged from 0.76 to 0.96). The scalability was satisfactory with inlier-sensitive fit (INFIT) statistics inside an acceptable range. Scores of dimensions were strongly positively correlated with visual analogue scale scores (all P < 0.001). External validity showed statistical associations between QSH scores and age or department. Participation rate was 91%. CONCLUSIONS: The availability of a reliable and valid French questionnaire concerning hospitalized patients' satisfaction, exclusively generated from patients' interviews, enables patient feedback to be incorporated in a continuous quality health-care improvement strategy.


Asunto(s)
Hospitalización , Satisfacción del Paciente , Encuestas y Cuestionarios , Adulto , Anciano , Femenino , Francia , Departamentos de Hospitales , Humanos , Masculino , Persona de Mediana Edad , Psicometría , Garantía de la Calidad de Atención de Salud , Reproducibilidad de los Resultados , Factores Socioeconómicos
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