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1.
Clin Exp Allergy ; 49(8): 1095-1106, 2019 08.
Artículo en Inglés | MEDLINE | ID: mdl-31317599

RESUMEN

BACKGROUND: Atopic dermatitis (AD) needs intensive treatment and has a negative impact on quality of life. Shared medical appointments (SMAs) showed to be effective in clinical outcomes of chronic diseases, but little is known about the effects on children and families. OBJECTIVE: To evaluate the effects of SMAs compared to individual appointments (IA) for children with AD and their parents on coping and clinical outcomes. METHODS: In a pragmatic randomized controlled trial, new patients in UMC Utrecht with AD, younger than 18 years, and their parents were assigned to the SMA group or the IA group using a covariate adaptive randomization method, controlled for age. Before the intervention, 2 months (primary time-point) and 6 months thereafter, we assessed parental emotional coping (primary outcome), quality of life, anxiety about corticosteroids and patient disease activity. Patients, parents and healthcare professionals could not be blinded to group assignment. RESULTS: Of 140 patients, enrolled in the trial, 69 patients were assigned to the SMA and 71 to the IA intervention of whom 114 completed the intervention (SMA: 49; IA: 65). After 2 months, there were no differences between SMAs and IAs in effects on emotional coping: b 0.66, 95% CI -0.7 to 2.03; P = 0.33 (mean difference: 0.30; 95% CI -1.56 to 2.16; N SMA: 11; IA: 24), quality of life, anxiety about corticosteroids and disease activity. From the initial appointment to long-term follow-up, both groups showed substantial improvements, but not significant in disease activity and significant reduction in anxiety about corticosteroids. This study is limited by a low response rate; therefore, linear mixed models and dropout analyses were performed. No serious adverse events were reported. CONCLUSION AND CLINICAL RELEVANCE: For children with AD and their parents, there were no additional benefits of GMAs in parental emotional coping, anxiety about corticosteroids, quality of life and disease activity. TRIAL REGISTRATION: www.ISRCTN.org, ISRCTN08506572.


Asunto(s)
Dermatitis Atópica/terapia , Calidad de Vida , Citas Médicas Compartidas , Niño , Enfermedad Crónica , Femenino , Humanos , Masculino
2.
Am J Med Genet B Neuropsychiatr Genet ; 171(6): 790-6, 2016 09.
Artículo en Inglés | MEDLINE | ID: mdl-26953189

RESUMEN

The role of rare genetic variants, in particular copy number variants (CNVs), in the etiology of neurodevelopmental disorders is becoming increasingly clear. While the list of these disorder-related CNVs continues to lengthen, it has also become clear that in nearly all genetic variants the proportion of carriers who express the associated phenotype is far from 100%. To understand this variable penetrance of CNVs it is important to realize that even the largest CNVs represent only a tiny fraction of the entire genome. Therefore, part of the mechanism underlying the variable penetrance of CNVs is likely the modulatory impact of the rest of the genome. In the present study we used the 22q11DS as a model to examine whether the observed penetrance of intellectual impairment-one of the main phenotypes associated with 22q11DS-is modulated by the intellectual level of their parents, for which we used the parents' highest level of education as a proxy. Our results, based on data observed in 171 children with 22q11DS in the age range of 5-15 years, showed a significant association between estimated parental cognitive level and intelligence in offspring (full scale, verbal and performance IQ), with the largest effect size for verbal IQ. These results suggest that possible mechanisms involved in the variable penetrance observed in CNVs include the impact of genetic background and/or environmental influences. © 2016 Wiley Periodicals, Inc.


Asunto(s)
Anomalías Múltiples/genética , Variaciones en el Número de Copia de ADN/fisiología , Síndrome de DiGeorge/genética , Inteligencia/genética , Adolescente , Niño , Preescolar , Deleción Cromosómica , Cromosomas Humanos Par 22/genética , Variaciones en el Número de Copia de ADN/genética , Femenino , Humanos , Masculino , Trastornos Mentales/genética , Países Bajos , Padres , Penetrancia , Eliminación de Secuencia/genética
3.
J Pediatr ; 164(2): 398-401, 2014 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-24238861

RESUMEN

OBJECTIVE: To examine cognitive functioning in patients with tyrosinemia type I treated with nitisinone and a protein-restricted diet. STUDY DESIGN: We performed a cross-sectional study to establish cognitive functioning in children with tyrosinemia type I compared with their unaffected siblings. Intelligence was measured using age-appropriate Wechsler Scales. To assess cognitive development over time, we retrieved sequential IQ scores in a single-center subset of patients. We also evaluated whether plasma phenylalanine and tyrosine levels during treatment was correlated with cognitive development. RESULTS: Average total IQ score in 10 patients with tyrosinemia type I receiving nitisinone was significantly lower compared with their unaffected siblings (71 ± 13 vs 91 ± 13; P = .008). Both verbal and performance IQ subscores differed (77 ± 14 vs 95 ± 11; P < .05 and 70 ± 11 vs 87 ± 15; P < .05, respectively). Repeated IQ measurements in a single-center subset of 5 patients revealed a decline in average IQ score over time, from 96 ± 15 to 69 ± 11 (P < .001). No significant association was found between IQ score and either plasma tyrosine or phenylalanine concentration. CONCLUSION: Patients with tyrosinemia type I treated with nitisinone are at risk for impaired cognitive function despite a protein-restricted diet.


Asunto(s)
Cognición/fisiología , Disfunción Cognitiva/etiología , Ciclohexanonas/uso terapéutico , Nitrobenzoatos/uso terapéutico , Tirosinemias/complicaciones , 4-Hidroxifenilpiruvato Dioxigenasa/antagonistas & inhibidores , Adolescente , Niño , Desarrollo Infantil , Preescolar , Disfunción Cognitiva/epidemiología , Disfunción Cognitiva/fisiopatología , Estudios Transversales , Progresión de la Enfermedad , Inhibidores Enzimáticos/uso terapéutico , Femenino , Humanos , Incidencia , Masculino , Países Bajos/epidemiología , Pronóstico , Factores de Riesgo , Tirosinemias/tratamiento farmacológico , Adulto Joven
4.
Am J Med Genet A ; 161A(1): 94-101, 2013 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-23239609

RESUMEN

Children with the 22q11.2 deletion syndrome (22q11DS) are at an increased risk of psychiatric problems from pre-adolescence; little is known, however, about behavioral problems at a preschool age and the relationship between speech and behavior in this group. Parents of 90 children (aged 1.42-5.99 years) with 22q11DS filled out the Child Behavior Checklist, documenting behaviors including speech problems. Their profiles were compared with those of a comparison group consisting of 33 children with nonsyndromic orofacial clefts without 22q11DS, since both children with 22q11DS and children with clefts are expected to have speech problems. In the 22q11DS group, data on intelligence was acquired by means of formal tests. Parents of children with 22q11DS reported significantly higher mean scores on withdrawn behavior, affective problems and pervasive developmental problems compared to children with nonsyndromic clefts. Approximately 30% of children with 22q11DS had a score above the 97th percentile on at least one of the behavior subscales, indicating psychopathology. In children with 22q11DS, the reported behavioral problems were not associated with speech problems. Behavioral problems were found in 30% of young children with 22q11DS and were unlikely to be caused by speech problems. Within the 22q11DS group, behavioral problems were not related to the degree of cognitive impairment. This shows that many children with 22q11DS, known to be at an increased risk of psychiatric problems from pre-adolescence, already show behavioral problems before the age of 6 years.


Asunto(s)
Trastornos de la Conducta Infantil/diagnóstico , Síndrome de DiGeorge/genética , Síndrome de DiGeorge/psicología , Trastornos de la Conducta Infantil/genética , Preescolar , Síndrome de DiGeorge/complicaciones , Femenino , Humanos , Lactante , Masculino , Trastornos Mentales/complicaciones , Trastornos Mentales/genética , Trastornos Mentales/psicología , Estudios Prospectivos , Factores de Riesgo , Trastornos del Habla/complicaciones , Trastornos del Habla/genética , Trastornos del Habla/psicología , Encuestas y Cuestionarios
5.
Br J Psychiatry ; 200(6): 462-8, 2012 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-22661678

RESUMEN

BACKGROUND: People with 22q11.2 deletion syndrome (velo-cardio-facial syndrome) have a 30-fold risk of developing schizophrenia. In the general population the schizophrenia phenotype includes a cognitive deficit and a decline in academic performance preceding the first episode of psychosis in a subgroup of patients. Findings of cross-sectional studies suggest that cognitive abilities may decline over time in some children with 22q11.2 deletion syndrome. If confirmed longitudinally, this could indicate that one or more genes within 22q11.2 are involved in cognitive decline. AIMS: To assess longitudinally the change in IQ scores in children with 22q11.2 deletion syndrome. METHOD: Sixty-nine children with the syndrome were cognitively assessed two or three times at set ages 5.5 years, 7.5 years and 9.5 years. RESULTS: A mean significant decline of 9.7 Full Scale IQ points was found between ages 5.5 years and 9.5 years. In addition to the overall relative decline that occurred when results were scored according to age-specific IQ norms, in 10 out of a group of 29 children an absolute decrease in cognitive raw scores was found between ages 7.5 years and 9.5 years. The decline was not associated with a change in behavioural measures. CONCLUSIONS: The finding of cognitive decline can be only partly explained as the result of 'growing into deficit'; about a third of 29 children showed an absolute loss of cognitive faculties. The results underline the importance of early psychiatric screening in this population and indicate that further study of the genes at the 22q11.2 locus may be relevant to understanding the genetic basis of early cognitive deterioration.


Asunto(s)
Trastornos del Conocimiento/genética , Discapacidades del Desarrollo/genética , Síndrome de DiGeorge/psicología , Inteligencia/genética , Niño , Preescolar , Estudios Transversales , Escolaridad , Femenino , Humanos , Pruebas de Inteligencia , Masculino , Variaciones Dependientes del Observador , Estudios Prospectivos
6.
Arthritis Rheum ; 63(7): 2007-13, 2011 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-21437879

RESUMEN

OBJECTIVE: To design and validate a new questionnaire for identifying patients with methotrexate (MTX) intolerance, and to determine the prevalence of MTX intolerance in patients with juvenile idiopathic arthritis (JIA) using this questionnaire. METHODS: The MTX Intolerance Severity Score (MISS) questionnaire was constructed, consisting of 5 domains: stomach ache, nausea, vomiting, sore mouth, and behavioral symptoms. The domains each consisted of 3 questions pertaining to the presence of a symptom upon, prior to (anticipatory), and when thinking of (associative) MTX intake. The MISS questionnaire was validated in 86 patients by determining its discriminative power between patients with and those without MTX intolerance, identified as such by a gold standard (physician's opinion). Using the MISS questionnaire, the prevalence of MTX intolerance was determined in 297 JIA patients. RESULTS: The MISS questionnaire discriminated well between MTX-intolerant and MTX-tolerant patients. A cutoff score of 6 yielded the best sensitivity (88%) and specificity (80%). MTX intolerance was found in 150 (50.5%) of 297 patients. Of 220 patients receiving oral MTX, 98 (44.5%) experienced MTX intolerance, whereas 67.5% of 77 patients receiving parenteral MTX experienced intolerance to the drug (P = 0.001). CONCLUSION: Our findings indicate that the MISS questionnaire is a highly sensitive and specific tool for the diagnosis of MTX intolerance, and that there is a high prevalence of MTX intolerance among JIA patients. The prevalence of intolerance in patients receiving parenteral MTX exceeds that in patients receiving oral MTX. The frequent occurrence of anticipatory and associative symptoms suggests that classic conditioning plays an important role in MTX intolerance.


Asunto(s)
Antirreumáticos/efectos adversos , Artritis Juvenil/tratamiento farmacológico , Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos/diagnóstico , Metotrexato/efectos adversos , Adolescente , Antirreumáticos/uso terapéutico , Niño , Preescolar , Estudios Transversales , Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos/etiología , Femenino , Humanos , Masculino , Metotrexato/uso terapéutico , Curva ROC , Sensibilidad y Especificidad , Encuestas y Cuestionarios
7.
BMC Cancer ; 10: 624, 2010 Nov 11.
Artículo en Inglés | MEDLINE | ID: mdl-21070639

RESUMEN

BACKGROUND: Childhood cancer and its treatment have considerable impact on a child's physical and mental wellbeing. Especially long-term administration of chemotherapy and/or radiotherapy impairs physical fitness both during and after therapy, when children often present with muscle weakness and/or low cardiorespiratory fitness. Physical exercise can improve these two elements of physical fitness, but the positive effects of physical exercise might be further increased when a child's wellbeing is simultaneously enhanced by psychosocial training. Feeling better may increase the willingness and motivation to engage in sports activities. Therefore, this multi-centre study evaluates the short and long-term changes in physical fitness of a child with a childhood malignancy, using a combined physical exercise and psychosocial intervention program, implemented during or shortly after treatment. Also examined is whether positive effects on physical fitness reduce inactivity-related adverse health problems, improve quality of life, and are cost-effective. METHODS: This multi-centre randomized controlled trial compares a combined physical and psychosocial intervention program for children with cancer, with care as usual (controls). Children with cancer (aged 8-18 years) treated with chemotherapy and/or radiotherapy, and who are no longer than 1 year post-treatment, are eligible for participation. A total of 100 children are being recruited from the paediatric oncology/haematology departments of three Dutch university medical centres. Patients are stratified according to pubertal stage (girls: age ≤10 or >10 years; boys: ≤11 or >11 years), type of malignancy (haematological or solid tumour), and moment of inclusion into the study (during or after treatment), and are randomly assigned to the intervention or control group. DISCUSSION: Childhood cancer patients undergoing long-term cancer therapy may benefit from a combined physical exercise and psychosocial intervention program since it may maintain or enhance their physical fitness and increase their quality of life. However, the feasibility, patient need, and effectiveness of such a program should be established before the program can be implemented as part of standard care. TRIAL REGISTRATION NUMBER: NTR1531 (The Netherlands National Trial Register).


Asunto(s)
Terapia por Ejercicio/economía , Neoplasias/terapia , Calidad de Vida , Adolescente , Niño , Análisis Costo-Beneficio , Ejercicio Físico/fisiología , Terapia por Ejercicio/métodos , Femenino , Humanos , Masculino , Neoplasias/psicología , Aptitud Física/fisiología , Análisis de Regresión , Resultado del Tratamiento
8.
Pediatr Allergy Immunol ; 21(2 Pt 2): e439-45, 2010 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-19694978

RESUMEN

As ingestion of peanut and hazelnut by allergic children is potentially life threatening, parents of these children need to be vigilant about their child's dietary intake. This may cause high levels of anxiety. To assess parental anxiety about food-allergic reaction in their child (state anxiety) and their personal disposition to anxiety (trait anxiety). Parental anxiety was investigated again after food challenges. Fifty-seven children (3-16 yr, mean age 7.2) with suspected peanut or hazelnut allergy (mean specific IgE 20.9) were evaluated by double-blind, placebo-controlled food challenge (DBPCFC). Thirty-two children (56%) developed an allergic reaction. All parents completed the Spielberger State-Trait Anxiety Inventory (STAI) prior to DBPCFC and 2 wk, 3 months and 1 yr thereafter. The mean anxiety scores on these moments were compared with each other and with general Dutch norms. The STAI was also investigated in a group that refused DBPCFC. Prior to DBPCFC, parents had high levels of state anxiety in contrast to a lower trait anxiety compared to the norm group. After DBPCFC, the state anxiety was significantly lower, regardless of a positive or negative outcome (p

Asunto(s)
Ansiedad , Arachis , Corylus , Hipersensibilidad a los Alimentos/diagnóstico , Hipersensibilidad Inmediata/diagnóstico , Padres/psicología , Hipersensibilidad al Cacahuete/diagnóstico , Adolescente , Adulto , Alérgenos/administración & dosificación , Alérgenos/inmunología , Arachis/efectos adversos , Arachis/inmunología , Niño , Preescolar , Corylus/efectos adversos , Corylus/inmunología , Método Doble Ciego , Femenino , Hipersensibilidad a los Alimentos/etiología , Humanos , Hipersensibilidad Inmediata/etiología , Masculino , Hipersensibilidad al Cacahuete/etiología , Valor Predictivo de las Pruebas , Pruebas Cutáneas/métodos , Encuestas y Cuestionarios
9.
Anesthesiology ; 110(4): 805-12, 2009 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-19293699

RESUMEN

BACKGROUND: Several experimental studies have suggested that early exposure to anesthetic agents, i.e., before completion of synaptogenesis, can result in widespread apoptotic neuronal degeneration and late cognitive impairment, but human data are lacking. The authors performed a retrospective pilot study to test the feasibility and calculate sample sizes for a larger epidemiologic study of disturbed neurobehavioral development as a function of age at the time of first anesthetic exposure. Pediatric urological procedures were selected because the timing of surgery depends mainly on the age at which a diagnosis is made. METHODS: Neurobehavioral development was assessed using the validated 120-item parental Child Behavior CheckList/4-18 in 314 children who were operated for pediatric urological procedures between the ages of 0 and 6 yr. RESULTS: Of 243 questionnaires returned, the total problem score was clinically deviant in 41 (23%) of children aged less than 24 months at the time of first surgery and 13 (20%) aged greater than 24 months. Crude and adjusted odds ratios for a clinically deviant Child Behavior CheckList/4-18 score increased with younger age at the time of surgery, but the confidence intervals were very wide. Adjusted odds ratio was 1.38 (0.59-3.22) when operated at age less than 6 months, 1.19 (0.45-3.18) when operated between 6 and 12 months of age, and 1.20 (0.45-3.20) when operated between 12 and 24 months (using operated at greater than 24 months of age as reference category). A properly powered cohort study would require at least 2,268 children. CONCLUSIONS: Children undergoing urologic surgery at age less than 24 months showed more behavioral disturbances than children in whom surgery was performed after age 2 yr, although the results were not statistically significant. To confirm or refute an effect of anesthesia on cognitive development, at least 2,268 children need to be studied. With retrospective study designs, residual confounding remains an issue that can only be solved in prospective randomized studies.


Asunto(s)
Anestesia General/efectos adversos , Anestésicos Generales/efectos adversos , Trastornos de la Conducta Infantil/inducido químicamente , Procedimientos Quirúrgicos Urológicos , Adolescente , Factores de Edad , Niño , Trastornos de la Conducta Infantil/diagnóstico , Trastornos de la Conducta Infantil/epidemiología , Estudios de Factibilidad , Femenino , Humanos , Masculino , Oportunidad Relativa , Proyectos Piloto , Estudios Retrospectivos , Tamaño de la Muestra , Encuestas y Cuestionarios , Resultado del Tratamiento
10.
Acta Orthop ; 80(6): 704-10, 2009 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-19995320

RESUMEN

BACKGROUND AND PURPOSE: Few studies have been concerned with the patient's perception of the outcome of limb lengthening. We describe the psychological and social functioning after at least 2 years of follow-up in patients who had had a leg length discrepancy and who had undergone an Ilizarov limb lengthening procedure. PATIENTS AND METHODS: Self-esteem and perceived competence were measured in 37 patients (aged 17-30 years) both preoperatively and at a mean follow-up of 7 (2-14) years. At follow-up, health-related quality of life, functioning at school, daily activities, and treatment-related experiences were measured, and also retrospectively for the preoperative period. RESULTS: Preoperative and follow-up scores for self-esteem were similar. Overall perceived competence scores at follow-up were comparable to that of a healthy normal population. Patients' perceived athletic competence was lower and their perceived level of behavioral conduct was higher. At follow-up, patients had more positive appraisal of their physical appearance. Most health-related quality of life scores were not significantly different to those of the healthy normal population, apart from a reduced gross motor function, less vitality, and more pain. Patients with a remaining leg length inequality (LLI) of more than 2 cm had lower quality of life scores for gross motor function, sleep, pain, vitality, and depressive feelings. INTERPRETATION: At an average of 7 years after an Ilizarov limb lengthening procedure, patients still have physical restraints, but they appear to have normal psychosocial functioning, self-esteem, and perceived competence. These patients have quality of life scores comparable to those of norm groups, apart from a reduced gross motor function, less vitality and more pain. Residual LLI of more than 2 cm remains important even after long-term follow-up; these patients report lower quality of life.


Asunto(s)
Técnica de Ilizarov/psicología , Actividades Cotidianas , Adolescente , Adulto , Niño , Preescolar , Estudios de Seguimiento , Humanos , Técnica de Ilizarov/rehabilitación , Diferencia de Longitud de las Piernas/fisiopatología , Diferencia de Longitud de las Piernas/psicología , Diferencia de Longitud de las Piernas/cirugía , Actividad Motora , Satisfacción del Paciente , Calidad de Vida , Estudios Retrospectivos , Autoimagen , Factores de Tiempo , Resultado del Tratamiento , Adulto Joven
11.
Horm Res ; 69(3): 172-9, 2008.
Artículo en Inglés | MEDLINE | ID: mdl-18219221

RESUMEN

AIM: To examine the view of young adults and their parents on growth hormone (GH) and gonadotropin-releasing hormone agonist (GnRHa) treatment in adolescence for idiopathic short stature (ISS) or short stature born small for gestational age (SGA). METHODS: Thirty young adults with ISS or SGA (18 treated, 12 untreated; age 17-23 years; 5.5 years after treatment) completed questionnaires and they and their parents were interviewed. RESULTS: Self-perceived current psychosocial functioning did not differ between the treated and untreated young adults, but several treated participants perceived psychosocial problems during adolescence. Most treated participants would have chosen again to receive hormone treatment, but they mentioned disadvantages of the treatment and were, as well as untreated participants, reticent upon recommending hormone treatment to others. CONCLUSION: GH/GnRHa treatment did not appear to have adverse long-term psychosocial consequences and the participants were glad to have taken the opportunity to receive hormone treatment. However, the treated group mentioned several disadvantages of the treatment and perceived some height-related psychosocial problems during adolescence. In considering hormone treatment, the positive as well as the negative aspects of the treatment as perceived by the participants are to be taken into consideration.


Asunto(s)
Trastornos del Crecimiento/tratamiento farmacológico , Trastornos del Crecimiento/psicología , Terapia de Reemplazo de Hormonas/psicología , Padres/psicología , Percepción , Adolescente , Adulto , Afecto , Estatura , Niño , Femenino , Estudios de Seguimiento , Humanos , Masculino , Autoimagen , Autoeficacia , Encuestas y Cuestionarios
12.
Patient Educ Couns ; 72(1): 163-7, 2008 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-18395394

RESUMEN

OBJECTIVE: To gain insight into the personal experience and feelings of an adolescent with a chronic disease. METHODS: We report on the application of the self-confrontation method (SCM), illustrated by a case-example of an adolescent with juvenile idiopathic arthritis. RESULTS: Although taken at face value she was not impeded by the arthritis, through self-assessment with the SCM this adolescent acknowledged and addressed the emotional struggle to keep the arthritis secret and to constantly test the physical limits of her body. After the process of self-reflection, the adolescent showed a better integration of her arthritis experiences into her life story. CONCLUSION: With the SCM the adolescent could explore her own functioning and well-being on a manifest, as well as on an emotional and motivational level. PRACTICE IMPLICATIONS: In future research, by studying the self-investigations of a group of adolescents with chronic diseases, common risk factors for the development of a stable identity during adolescence might be identified. In clinical care, the SCM promotes self-knowledge, allowing for an intrinsic motivation to deal with the emotional impact of the disease.


Asunto(s)
Adaptación Psicológica , Artritis Juvenil/psicología , Actitud Frente a la Salud , Costo de Enfermedad , Psicología del Adolescente , Autoevaluación (Psicología) , Actividades Cotidianas , Adolescente , Artritis Juvenil/prevención & control , Emociones , Femenino , Libertad , Felicidad , Humanos , Relaciones Interpersonales , Motivación , Narración , Satisfacción Personal , Calidad de Vida/psicología , Autoimagen , Perfil de Impacto de Enfermedad , Encuestas y Cuestionarios , Confianza
13.
Clin Psychol Rev ; 27(8): 885-903, 2007 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-17350740

RESUMEN

Among clinical psychologists, consulting physicians, scientific researchers and society in general an image has emerged of patients with chronic fatigue syndrome (CFS) as perfectionist, conscientious, hardworking, somewhat neurotic and introverted individuals with high personal standards, a great desire to be socially accepted and with a history of continuously pushing themselves past their limits. The aim of this article is to (a) give a concise review of the main recent studies on personality and CFS, (b) address the major methodological problems in the study of personality in CFS and (c) discuss some of the conceptual assumptions that seem to limit the research on personality and CFS. The results of the reviewed studies range from no evidence of major differences between the personalities of patients with CFS and controls, to evidence of severe psychopathology and personality disorder in patients with CFS. Although personality seems to play a role in CFS, it is difficult to draw general conclusions on the relation between personality and CFS. It is argued that this is partially due to the diversity and heterogeneity in study methods, patient populations, control groups and CFS case definitions. Personality should be regarded as an important factor to be studied in CFS. However, additional studies are needed, not focusing exclusively on personality disorder, or personality considered on a general trait level. In recent developments in personality research, the continually evolving life narrative that makes sense of, and gives direction to, an individual's life is also regarded as an important aspect of personality. New insights into personality and CFS might be gained by systematically studying the self-narratives of patients with the syndrome.


Asunto(s)
Síndrome de Fatiga Crónica/diagnóstico , Síndrome de Fatiga Crónica/psicología , Personalidad/clasificación , Cultura , Síndrome de Fatiga Crónica/epidemiología , Humanos , Acontecimientos que Cambian la Vida , Modelos Psicológicos , Narración , Determinación de la Personalidad , Trastornos de la Personalidad/diagnóstico , Trastornos de la Personalidad/epidemiología , Trastornos de la Personalidad/psicología , Escalas de Valoración Psiquiátrica , Psicometría , Investigación , Proyectos de Investigación/normas , Cambio Social
14.
BMC Pediatr ; 5(1): 15, 2005 Jun 08.
Artículo en Inglés | MEDLINE | ID: mdl-15943869

RESUMEN

BACKGROUND: Growth-enhancing hormone treatment is considered a possible intervention in short but otherwise healthy adolescents. Although height gain is an obvious measure for evaluating hormone treatment, this may not be the ultimate goal for the person, but rather a means to reach other goals such as the amelioration of current height-related psychosocial problems or the enhancement of future prospects in life and society. The aim of our study was to clarify the motives of adolescents and their parents when choosing to participate in a growth-enhancing trial combining growth hormone and puberty-delaying hormone treatment. METHODS: Participants were early pubertal adolescents (25 girls, 13 boys) aged from 11 to 13 years (mean age 11.5 years) with a height standard deviation score (SDS) ranging from -1.03 to -3.43. All had been classified as idiopathic short stature or persistent short stature born small for the gestational age (intrauterine growth retardation) on the basis of a height SDS below -2, or had a height SDS between -1 and -2 and a predicted adult height SDS below -2. The adolescents and their parents completed questionnaires and a structured interview on the presence of height-related stressors, parental worries about their child's behavior and future prospects, problems in psychosocial functioning, and treatment expectations. Questionnaire scores were compared to norms of the general Dutch population. RESULTS: The adolescents reported normal psychosocial functioning and highly positive expectations of the treatment in terms of height gain, whereas the parents reported that their children encountered some behavioral problems (being anxious/depressed, and social and attention problems) and height-related stressors (being teased and juvenilized). About 40% of the parents were worried about their children's future prospects for finding a spouse or job. The motives of the adolescents and their parents exhibited rather different profiles. The most prevalent parental worries related to the current or future functioning of their children, while a few cases were characterized by no observed motives or by psychosocial problems only reported by the adolescents themselves. CONCLUSION: The motives for participating in a growth-enhancing hormone trial are more obvious in the parents than in the adolescents themselves. Two out of three parents report worries about the future opportunities or observe modest current psychosocial problems in their children. The adolescents want to gain height, but the motivation underlying this remains unclear. Few of the adolescents experience psychosocial problems. Our analyses revealed differences among individuals in terms of motives, which implies that in an evaluation of hormone treatment, the importance of divergent outcome variables will also differ among individuals. Effectiveness evaluations of hormone treatment to increase height and the consequential fulfillment of other goals must be awaited.


Asunto(s)
Estatura , Trastornos del Crecimiento/psicología , Hormona de Crecimiento Humana/uso terapéutico , Motivación , Padres/psicología , Psicología del Adolescente , Autoimagen , Adolescente , Estatura/efectos de los fármacos , Femenino , Trastornos del Crecimiento/tratamiento farmacológico , Humanos , Inteligencia , Masculino
15.
Psychol Assess ; 27(1): 272-9, 2015 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-25436664

RESUMEN

Patients with the 22q11-deletion syndrome (22q11DS) are at an increased risk of developing schizophrenia. Besides the effects of genetic variation, environmental factors could also be important in modifying the risk of schizophrenia in 22q11DS patients. In particular, previous studies have shown the importance of stress as a precipitating factor of psychosis. An incongruence between the perceived and actual severity of behavioral and cognitive domains could lead caregivers, and even the children themselves, to make demands that are insufficiently adapted to the child's abilities, causing stress and anxiety. Here, we investigate whether such diagnostic discrepancies are indeed present by comparing parent and teacher reports on behavioral concerns in children with 22q11DS. Behavioral questionnaires (CBCL and TRF) were prepared for both parents and teachers of 146 children with 22q11DS. We found that in line with previous reports, internalizing behavior was more frequently reported than externalizing behavior. While the behavioral profiles reported by parents and teachers were remarkably similar, the teachers' ratings were significantly lower (Total problem score p = .002). Age and IQ were not significantly associated with the severity of reported concerns. Our results indicate that indeed a disparity often exists between parents' and teachers' perceptions of the severity of a child's behavioral deficits. This may result in (substantially) different demands and expectations being placed on the child from the two fronts. We speculate that the stress resulting from this lack of cohesion between parents and teachers could precipitate, at least in some 22q11DS children, the emergence of psychosis.


Asunto(s)
Síndrome de Deleción 22q11/fisiopatología , Trastornos de la Conducta Infantil/fisiopatología , Padres , Fenotipo , Maestros , Índice de Severidad de la Enfermedad , Síndrome de Deleción 22q11/complicaciones , Síndrome de Deleción 22q11/diagnóstico , Adolescente , Niño , Trastornos de la Conducta Infantil/diagnóstico , Trastornos de la Conducta Infantil/etiología , Preescolar , Femenino , Humanos , Masculino
16.
Soc Sci Med ; 54(9): 1453-61, 2002 May.
Artículo en Inglés | MEDLINE | ID: mdl-12058860

RESUMEN

This study examines the way coping styles and locus of control contribute to the prediction of psychosocial adjustment in adolescents with a chronic illness. Psychosocial adjustment of 84 adolescents aged 13-16 years with a chronic illness was assessed with measures of social adjustment, global self-esteem and behavior problems. Linear regressions were performed with demographic factors (age and gender) and stress-processing factors (coping style and locus of control) as predictor variables. Results indicated that coping styles were related to most aspects of social adjustment. The coping styles 'seeking social support' and 'confrontation' were important predictors for positive social adjustment; the coping style 'depression' was a predictor for poor adjustment, viz, low social self-esteem and high social anxiety. Avoidance and locus of control were not strongly associated with psychosocial adjustment. Clinical implications of these findings were discussed in terms of preventive interventions for adolescents with a chronic illness.


Asunto(s)
Adaptación Psicológica , Conducta del Adolescente/psicología , Enfermedad Crónica/psicología , Niños con Discapacidad/psicología , Control Interno-Externo , Ajuste Social , Adolescente , Trastornos de la Conducta Infantil/diagnóstico , Femenino , Hospitales Pediátricos , Humanos , Relaciones Interpersonales , Masculino , Países Bajos , Análisis de Regresión , Autoimagen , Estrés Psicológico
17.
Artículo en Inglés | MEDLINE | ID: mdl-24936285

RESUMEN

BACKGROUND: Efficacy studies on treatment in adolescent victims of single rape are lacking, even though sexual victimization is most likely to occur during adolescence and despite the fact that adolescents are at risk to develop subsequent posttraumatic stress disorder. AIM: The aim of this prospective observational study was to evaluate the short- and long-term outcomes of a nine-session cognitive behavior group therapy (STEPS), including a parallel six-session parents' group on rape-related symptomatology in female adolescents (13-18 years). STEPS includes psychoeducation, exposure in sensu as well as in vivo, cognitive restructuring, and relapse prevention. METHODS: Fifty-five female adolescents with mental health problems due to single rape, but without prior sexual trauma, received STEPS while their parents participated in a support group. Subjects were assessed on posttraumatic stress (PTS) and comorbid symptoms using self-report questionnaires prior to and directly after treatment, and at 6 and 12 months follow-up. RESULTS: Repeated measures analysis showed a significant and large decrease in symptoms of PTS, anxiety, depression, anger, dissociation, sexual concerns, and behavior problems directly after treatment, which maintained at 12 months follow-up. Time since trauma did not influence the results. Dropout during STEPS was 1.8%. CONCLUSIONS: The results potentially suggest that the positive treatment outcomes at short- and long-term may be caused by STEPS. The encouraging findings need confirmation in future controlled studies on the effectiveness of STEPS because it may be possible that the treatment works especially well for more chronic symptoms, while the less chronic part of the sample showed considerable improvement on its own.

18.
Psychoneuroendocrinology ; 38(3): 408-15, 2013 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-22867760

RESUMEN

BACKGROUND: In chronic sexual abuse victims with post traumatic stress disorder (PTSD), the hypothalamic pituitary adrenal (HPA) axis can be dysregulated. In single rape victims, PTSD symptoms are hypothesized to function as a chronic stressor leading to similar HPA-axis dysregulation. The objective of the current study was to assess HPA-axis functioning in female adolescents with rape-related PTSD, but no prior sexual trauma, in comparison to non-victimized controls. METHOD: Salivary cortisol and dehydroepiandrosterone sulfate (DHEAS) were measured in 52 female adolescent rape victims with PTSD and 37 healthy adolescents at 0, 15, 30, 45 and 60 min after awakening, both under basal conditions and after 0.5 mg dexamethasone administration. RESULTS: Compared to age-matched controls, adolescent rape victims with PTSD showed significantly reduced cortisol and DHEAS levels. No group differences for the effect of dexamethasone suppression were found. Both the event of rape and PTSD diagnosis, and not factors such as sleep duration, smoking, education or oral contraceptives, accounted for the neuroendocrine differences between rape victims and controls. CONCLUSIONS: The results show evidence for a dysregulated HPA-axis in female adolescent victims of single sexual trauma with PTSD. The finding of hypocortisolism is consistent with endocrine dysfunctioning in chronic sexual abuse victims and may have clinical implications with regard to treatment possibilities.


Asunto(s)
Víctimas de Crimen/psicología , Deshidroepiandrosterona/metabolismo , Hidrocortisona/metabolismo , Violación/psicología , Saliva/metabolismo , Trastornos por Estrés Postraumático/metabolismo , Trastornos por Estrés Postraumático/psicología , Adolescente , Conducta del Adolescente/psicología , Estudios de Casos y Controles , Depresión/complicaciones , Depresión/metabolismo , Depresión/psicología , Dexametasona , Femenino , Humanos , Pruebas de Función Adreno-Hipofisaria/métodos , Trastornos por Estrés Postraumático/complicaciones
19.
Clin Child Psychol Psychiatry ; 18(3): 383-97, 2013 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-23060600

RESUMEN

The aim of this study is to gain more insight into basic aspects of identity, in relation to adolescent chronic fatigue syndrome (CFS) and juvenile idiopathic arthritis (JIA). In dialogical self theory, identity is regarded as incorporating multiple self-positions, such as 'I as tired', 'I as pessimistic', or 'I as decisive'. Physical and psychosocial impairment might alter the organization of these self-positions. The Personal Position Repertoire procedure, a quantitative method to analyse the prominence of self-positions, the Child Health Questionnaire, assessing health-related functioning, and the Checklist Individual Strength, measuring fatigue, were completed by 42 adolescents with CFS, 37 adolescents with JIA and 23 healthy teenagers. Adolescents with JIA report impaired physical functioning and general health. However, they position themselves very similar to healthy teenagers - i.e. as strong and healthy. While this self-positioning approach might be adequate and sustainable in adolescence, it could prove too strenuous to maintain throughout adult life. Adolescents with CFS, besides indicating severe physical difficulties, also report more psychosocial problems. They position themselves as significantly less strong and more unwell. With this emphasis on positions relating to their illness, there seems to be little room left for stronger positions. It is regarded of clinical importance to address these issues in this crucial developmental period.


Asunto(s)
Adaptación Psicológica , Artritis Juvenil/psicología , Síndrome de Fatiga Crónica/psicología , Autoimagen , Ajuste Social , Adolescente , Femenino , Humanos , Masculino , Calidad de Vida , Índice de Severidad de la Enfermedad , Encuestas y Cuestionarios
20.
J Rheumatol ; 40(4): 528-34, 2013 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-23418381

RESUMEN

OBJECTIVE: To study which adolescents with juvenile idiopathic arthritis (JIA) benefit from psychological intervention, and what is the best moment for it. METHODS: In 3 months, 28 adolescents with JIA and 14 healthy adolescents as a control group received psychological intervention with the Self-confrontation Method (SCM), which combines the personal narrative with its affective structure. The adolescents with JIA were split into groups with low health-related quality of life (HRQOL) and high HRQOL. The Child Health Questionnaire, Checklist Individual Strength, and Childhood Health Assessment Questionnaire were used to measure fatigue and physical and psychosocial functioning at baseline, and at 3 months and 9 months after baseline. RESULTS: Adolescents with JIA and low HRQOL at baseline reported less fatigue and better HRQOL after psychological intervention. These changes could not be explained by changes in disease activity. Low HRQOL at baseline was associated with a more recent onset of JIA, higher levels of pain, more severe physical disability, and higher levels of fatigue. CONCLUSION: Two-thirds of adolescents with JIA function well before and after psychological intervention. One-third of adolescents with JIA reporting low HRQOL at baseline benefit from guided self-reflections and should be the focus of psychological intervention. The most effective moment for this psychological intervention is when the adolescent reports difficulties in HRQOL.


Asunto(s)
Artritis Juvenil/psicología , Fatiga/terapia , Psicoterapia , Calidad de Vida/psicología , Adolescente , Artritis Juvenil/complicaciones , Fatiga/complicaciones , Fatiga/psicología , Femenino , Encuestas Epidemiológicas , Humanos , Masculino , Salud Mental , Dolor/complicaciones , Índice de Severidad de la Enfermedad , Resultado del Tratamiento
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