RESUMO
Doctors and especially paediatricians in clinics and private practices are often the first professionals to be confronted with the suspicion of a child endangerment (sexual abuse, physical abuse, neglect, Munchausen-by-proxy syndrome). They thus play a key role in the early assessment and clarification of suspicion and setting the course for the further interdisciplinary procedure.The clinical investigation of a suspicion is a diagnostic and communicative challenge. The procedure includes biomedical diagnostics, structured medical history based on standardized questionnaires and a forensic (investigative) interview of caregivers and especially of the affected child.The child's statements are subject to various risks of bias. The mental processing of events can modulate and distort the scope and quality of the report in many ways. Expectations on how the professionals will use this information and the consequences that may arise for the family as well as the resulting conflicts of loyalty are superimposed on the child's willingness to talk and to provide valid statements. On the part of the interviewer too, motivational, affective and cognitive processes pose risks for a suggestive influence on the child as well as for the objectivity in carrying out the interview and the interpretation of the findings. Complex pitfalls endanger the validity and forensic usability of the interview results. In order to assure the quality of their findings, interviewers are therefore required to carefully register and reflect on their own motivational tendencies and implicit hypotheses, to know and avoid suggestive question formulations and to make use of standardized interview protocols whenever possible.
Assuntos
Abuso Sexual na Infância , Comunicação , Entrevista Psicológica , Médicos , Cuidadores , Criança , Abuso Sexual na Infância/diagnóstico , Alemanha , Humanos , PediatrasRESUMO
Interviewing a child of a suspected abuse (physical abuse, sexual abuse, neglect, Munchausen-by-proxy syndrome) is subject to complex risks of suggestion and distortion. The use of a standardized interview protocol as part of the investigation can significantly increase the scope and validity of the child's report in different settings (for example, pediatrics, child welfare services, court).In this paper, the interview protocol provided by the National Institute of Child Health and Human Development (NICHD) in its revised and complete version is presented in German and made available for free clinical use in the Appendix. The NICHD interview protocol is the most prominent and most carefully evaluated tool. It is currently considered as a reference for the assessment of child abuse. The protocol follows certain guiding principles. At the beginning of the interview, basic rules are explained to the child (e.â¯g. telling the truth, correct the interviewer if necessary). The focus is placed on detailed exploration of critical abusive episodes. Open questions are asked instead of closed questions. A good rapport has to be established before moving to the actual interview topic.In addition to a technically correct application of the protocol, further competencies of the interviewer are essential to ensure the validity of the findings, such as: sensitive contact with the child; knowledge of the typical sources of bias and suggestion; awareness and control of personal impulses, motives and implicit assumptions; a hypothesis-led approach; and developmentally appropriate interpretation and evaluation of the child's report.
Assuntos
Abuso Sexual na Infância , Maus-Tratos Infantis , Entrevista Psicológica , Criança , Maus-Tratos Infantis/diagnóstico , Abuso Sexual na Infância/diagnóstico , Alemanha , Humanos , National Institute of Child Health and Human Development (U.S.) , Estados UnidosRESUMO
Psychodynamic findings based on the Operationalized Psychodynamic Diagnostics in Childhood and Adolescence (OPD-CA) in patients with Anorectal Malformations (ARM) in comparison to psychiatric patients were presented focussing the psychic structure. Patients with ARM had significant better psychic structure especially with regard to coping with conflicts and communication of affects. Furthermore typical findings were generated: Patients with ARM had better treatment conditions and more positive relationships. Still they had fewer hypotheses about their disease and greater living burden. Structural strengthes facilitate acceptance and integration of the disease. Nonetheless more attention should be paid to child-oriented psychoeducation for development of age-appropriate hypotheses about the disease. Facing living burden, psychological-psychiatric support should be offered to patients with ARM.
Assuntos
Canal Anal/anormalidades , Transtornos Mentais/psicologia , Doenças Retais/psicologia , Reto/anormalidades , Adolescente , Criança , Pré-Escolar , Efeitos Psicossociais da Doença , Feminino , Humanos , Masculino , Transtornos Mentais/diagnóstico , Testes Neuropsicológicos , Educação de Pacientes como Assunto , Doenças Retais/diagnóstico , Doenças Retais/etiologia , Adulto JovemRESUMO
BACKGROUND/PURPOSE: Following a recent classification of the VATER Association provided by the CURE-Net consortium (submitted), we investigate medical predictors of psychological stress and anxieties in this particular condition. METHODS: We developed a new set of questionnaires measuring psychological adjustment and quality of life outcome in conditions associated with anorectal and/or urogenital malformation (one self- report form to be completed by patients 7-17 years of age, two parent report forms with one relating to patients with an age range of 0-6 years, resp. 7-17 years of age). The questionnaire "Malformation-related Stress and Anxieties" comprises 26 items belonging to five subscales (I. Functional and cosmetic impairment, II. Intimacy and relationship, III. Social inclusion, IV. Psychological functioning, V. Family functioning). Every item can be responded to with respect to both actual, present problems already experienced as well as to future anxieties anticipating future development and adjustment (a perspective which especially applies in younger patients). Internal consistencies of the scales are good, resp. very good (Cronbach's α = .85 concerning present sources of anxiety scale, resp., .94 concerning future anxieties scale). The items are supplied with a Likert-type 5-point scale. We administered the questionnaire in N = 17 children and adolescents suffering from VATER via parental (proxy) report. RESULTS: As most medical risk factors affected nearly the entire sample, statistical analysis excluded investigation of differential impact on psychological stress experience and anxieties in subjects exposed versus not exposed. Special attention, therefore, was paid to those medical parameters with the best statistical power to differentiate between individuals of high versus low psychological outcome. Medical predictors differentiating between individuals with high versus low adjustment comprise post-operative infections of the urinary tract (t[15] = -3.78, p = .09), wound infections (t[15] = -3.04, p < .01), stoma complications (t[15] = -2.11, p = .08) (e.g., prolapsed (t[13] = -2.37, p = .05), other treatment complications (t[15] = -2.59, p < .05) and presence of a megacolon (t[13] = -2.44, p = .06). DISCUSSION AND CONCLUSIONS: From the perspective of stress psychology, the findings may indicate that particular medical characteristics of a malformation may operate via two different pathways: (a) pathway of severity of a particular medical risk factor: the presence of a megacolon, for example, may restrict quality of life and successful adjustment via multiple and long term functional impairments associated and (b) pathway of subjective predictability and controllability of treatment course. In accordance with theoretical models from stress psychology, the psychological impact of complicating factors such as wound-healing infections is not operating via severity of impairment, but via implicit messages they convey, indicating a low predictability and controllability of course of disease and treatment. As a result, they may increase intensity of worry and anxieties upon further difficulties still to come during future development. As a conclusion, psychological counseling may not only address concrete functional impairments and stressors, but also basic feelings of insecurity, controllability and self-efficacy.
Assuntos
Anormalidades Múltiplas/psicologia , Anus Imperfurado/psicologia , Cardiopatias Congênitas/psicologia , Estresse Psicológico/prevenção & controle , Anormalidades Múltiplas/cirurgia , Adolescente , Anus Imperfurado/cirurgia , Criança , Pré-Escolar , Colostomia/psicologia , Esôfago/anormalidades , Esôfago/cirurgia , Feminino , Alemanha , Cardiopatias Congênitas/cirurgia , Humanos , Lactente , Recém-Nascido , Masculino , Complicações Pós-Operatórias/psicologia , Rádio (Anatomia)/anormalidades , Rádio (Anatomia)/cirurgia , Fatores de Risco , Coluna Vertebral/anormalidades , Coluna Vertebral/cirurgia , Estresse Psicológico/diagnóstico , Estresse Psicológico/etiologia , Infecção da Ferida Cirúrgica/psicologia , Inquéritos e Questionários , Síndrome , Traqueia/anormalidades , Traqueia/cirurgiaRESUMO
OBJECTIVE: To review the extant literature on functional abdominal pain in childhood through the lens of the developmental psychopathology perspective and to systematize research results by means of a two-stage pathway model in which the emergence of functional abdominal pain and its potential transition into a somatoform adjustment disorder is outlined. METHODS: Using electronic searches for published studies and previous reviews about functional abdominal pain. RESULTS: An association of functional abdominal pain with internalizing symptoms, poor well-being of family members, major life events and daily stressors is found. The impact of stress on pain seems to be moderated by the children's coping style and their perceived competence and self-efficacy to manage the pain experience. There is evidence for the influence of modeling and operant mechanisms on pain experiences. A new term, 'somatoform adjustment disorder', and its relation to functional abdominal pain is discussed. CONCLUSIONS: It seems that those children with functional abdominal pain who cannot adapt to the pain indeed run the risk of developing a somatoform adjustment disorder.
Assuntos
Dor Abdominal/psicologia , Adaptação Psicológica , Transtornos Somatoformes/psicologia , Transtornos de Adaptação/psicologia , Criança , Conflito Familiar/psicologia , Humanos , Controle Interno-Externo , Fatores de Risco , Autoeficácia , Estresse Psicológico/complicaçõesRESUMO
Anorectal malformations are inborn developmental defects that are associated with multiple functional Impairments (especially incontinence) and psychosocial burden with a major impact on body schema and self-esteem. Child psychology and psychiatry research begin to identify disorder-dependent and -independent risk and protective factors that predict the outcome of psychological adaptation and quality of life. The present paper analyses the interference of structural and functional disease parameters with the achievement of regular developmental tasks, presents a hypothetical conceptual framework concerning the development of psychological adaptation and quality of life in ARM, integrates findings from empirical research with the framework presented and outlines strategies of psychological support from a cognitive-behavioural perspective within a multidisciplinary treatment approach to enhance medical, functional, and psychosocial quality of life.
Assuntos
Adaptação Psicológica , Anus Imperfurado/psicologia , Terapia Cognitivo-Comportamental/métodos , Determinação da Personalidade/estatística & dados numéricos , Qualidade de Vida/psicologia , Anormalidades Múltiplas/psicologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Criança , Pré-Escolar , Constipação Intestinal/psicologia , Incontinência Fecal/psicologia , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Pessoa de Meia-Idade , Resiliência Psicológica , Autoimagem , Papel do Doente , Adulto JovemRESUMO
BACKGROUND: In 2007, a Conference on Idiopathic Short Stature (ISS) endorsed the definition of ISS as a statistical (auxologic) rather than a medical (pathologic) deviation from the norm. Consequently, the ultimate criteria for evaluation of treatment in ISS shift from medical to psychological endpoints. OBJECTIVE: This review synthesizes empirical evidence of psychological outcomes in treated and untreated subjects with ISS, recommendations from the recent ISS Consensus Conference, theoretical concepts from pediatric psychology and rationales used for various intervention strategies to better evaluate and manage psychological endpoints in ISS in accordance with the Consensus Conference definition. METHODS: Different measures of psychological outcome in ISS are reviewed to explain apparent heterogeneity among empirical study findings. Key issues include: (1) adaptation to major stressors associated with short stature (e.g., bullying, peer relations) and the correlation of adaptation failure with low socioeconomic status and impaired quality of life in adulthood; (2) development of valid and sensitive assessment tools; (3) clinical decision-making based on psychological assessment, ethical principles concerning informed consent and expectation of benefit from psychological treatment and (4) intervention approaches including counselling, cognitive-behavioral therapy, assertiveness training and growth hormone therapy. CONCLUSIONS: There are different but complementary strategies for medical and psychological enhancement of psychosocial outcome in subjects with ISS.
Assuntos
Biomarcadores/análise , Terapia Cognitivo-Comportamental/métodos , Determinação de Ponto Final/métodos , Transtornos do Crescimento/psicologia , Transtornos do Crescimento/terapia , Algoritmos , Viés , Transtornos do Crescimento/epidemiologia , Hormônio do Crescimento Humano/uso terapêutico , Humanos , Seleção de Pacientes , Testes Psicológicos , Resultado do TratamentoRESUMO
The concept of health-related quality of life (HrQoL) reflects the subjective perception of health and includes aspects of well-being and functioning in physical, emotional, mental and social life domains. Nowadays, HrQoL has become a relevant treatment outcome from epidemiological and clinical perspectives and is also broadly employed in health economic analyses. To assess HrQoL generic as well as condition-specific instruments are used. The former are applicable to a wide range of health conditions and aim at measuring HrQoL across different conditions. The latter focus on capturing the impact of a specific disease. Although HrQoL research in adults is now well-advanced, there are still open questions regarding how to assess HrQoL in pediatric conditions, such as short stature. Eight generic (one chronic-generic) and seven condition-specific (one treatment-specific) instruments used in HrQoL research in short stature of youth are described. Additionally, this mini review identifies a need for further research and indicates potential directions.
Assuntos
Nanismo , Hormônio do Crescimento Humano/deficiência , Qualidade de Vida/psicologia , Adolescente , Adulto , Nanismo/epidemiologia , Nanismo/psicologia , Nanismo/terapia , Feminino , Humanos , MasculinoRESUMO
Research on the health-related quality of life (HrQoL) impact of short stature and its treatment in children and adolescents has developed recently. Based on a PubMed literature search, studies addressing this issue were identified and considerable methodological problems mainly related to the HrQoL instruments used and conflicting results are discussed in this mini review. Additionally, this mini review identifies a need for further research and indicates potential directions.
Assuntos
Nanismo , Hormônio do Crescimento Humano/deficiência , Qualidade de Vida/psicologia , Adolescente , Criança , Pré-Escolar , Nanismo/epidemiologia , Nanismo/psicologia , Nanismo/terapia , Feminino , Humanos , MasculinoRESUMO
A marked prevalence of mental health dysfunction in childhood epilepsy has been documented in the literature. While several individual risk factors have been identified, which are statistically associated with an impaired mental health outcome, there is a lack of knowledge on the pathways taken by these risk factors on disease development and treatment. The relevant literature of the last decade will be reviewed in this paper to provide evidence for the conceptual framework presented here. Thus, the emergence of mental health dysfunction in childhood epilepsy is analyzed under three levels. Pathogenetic causes: These involve both the underlying CNS pathology and the associated epilepsy disorder characterized by specific time of onset duration type and severity. Mediators and moderators connecting causes to outcomes: These comprise, firstly, the differentiation between the intervening role of anti-epileptic drugs and their positive psychotropic impact via suppression of seizure activity and transient cognitive impairments, as against their negative psychotropic side-effects; secondly, the psychological processes of adaptation which entail responding to three major demands (adherence to treatment requirements, exercising self-control and lifestyle modification to reduce seizure activity, and coping with the psychosocial stressors secondary to living with epilepsy); thirdly, the age-dependent level of neurocognitive and behavioral functioning; and, fourthly, contextual risks and protective factors within the family and social environment. Mental health outcome: This encompasses three major domains: risks for learning disability, for impairments of health-related quality of life, and for psychopathology. The proposed framework serves the development and validation of hypotheses and can be applied to testing procedures aimed at investigating the emergence of mental health dysfunction in childhood epilepsy. On the scientific level, it provides an appropriate tool to approach childhood epilepsy in general, whereas on the clinical level, it facilitates the assessment and management of individual patients.
Assuntos
Anticonvulsivantes/efeitos adversos , Epilepsia/complicações , Epilepsia/psicologia , Transtornos Mentais/etiologia , Transtornos Mentais/psicologia , Adaptação Psicológica , Encéfalo/efeitos dos fármacos , Encéfalo/fisiopatologia , Criança , Epilepsia/tratamento farmacológico , Humanos , Transtornos Mentais/fisiopatologia , Modelos Neurológicos , Cooperação do Paciente/psicologia , Apoio Social , Estresse Psicológico/complicações , Estresse Psicológico/psicologiaRESUMO
BACKGROUND: The bladder exstrophy-epispadias complex (BEEC) comprises a spectrum of congenital anomalies that represents the severe end of urorectal malformations, and has a profound impact on continence as well as sexual and renal functions. OBJECTIVE: The relation between severity of BEEC and its associated functional impairments, on one hand, and the resulting restrictions in quality of life and potential psychopathology determine the patients' outcome. It is important for improving further outcome to identify BEEC-related sources of distress in the long term. Genital function and sexuality becomes an important issue for adolescent and adult BEEC individuals. Hence, the present study focused on sexual function and psychological adaption in patients with BEEC. STUDY DESIGN: In a multicenter study 52 patients (13 females, 39 males) with classic bladder exstrophy (BE) with their bladders in use were assessed by a self-developed questionnaire about sexual function, and psychosexual and psychosocial outcome. The patients were born between 1948 and 1994 (median age 31 years). RESULTS: Twelve of 13 (92%) females and 25 of 39 (64%) males with classic BE had answered the questions on sexual function. Of these, 50% females and 92% males answered that they masturbated. Females had sexual intercourse more frequently. Six (50%) females affirmed dyspareunia whereas only two (8%) males reported pain during erection. Eight (67%) females specified having orgasms. Eighteen (72%) males were able to ejaculate. Two males and none of the females lived in a committed partnership (Figure). Two (15%) females and 13 (33%) males answered all psychosocial questions. The majority of these patients had concerns about satisfactory sexuality and lasting, happy partnerships. A minority of patients of both sexes were willing to answer psychosocial questions. Sexual activity and relationships of many adult BE patients seems to be impaired. Not surprisingly, sexual activity and awareness were different in males and females even in a multi-organ anomaly. DISCUSSION: To date, one of the main goals of the medical treatment of BEEC/BE patients is to enable normal sexual life and fertility. However, only a few outcome studies have focused on these issues with contradicting results, most of them not using standardized outcome measures. In accordance with other studies, our female BE patients have dyspareunia and most of our male BE patients were able to ejaculate. But the question of normal force of ejaculation, ejaculated volume, or semen analysis remains unanswered. Despite partial confirmation of previous findings, there is inconsistency referring to the outcome measured by the available studies. This might in part be explained by the fact that, other than this study, most previous studies are the result of single-institution experience. Thus, selection bias in the patient sampling due to different a clinical collective in different hospitals may be the consequence. Furthermore, patients' honesty and self-reflection in answering difficult questions regarding their sexual and cosmetic impairments is questionable. In addition, studies include a wide range of age groups and are connected with this life period. Fears and condition-specific anxieties might change over time. Hence, the strengths of this study are the nationwide and treating physician-independent data acquisition as well as the large sample size of adult patients with a very rare congenital malformation. Unfortunately, more detailed analyses on sexual function and current psychosocial situation, for example correlation of data with clinical symptoms such as continence status, was not possible as data were mainly not answered by patients. CONCLUSION: To improve the quality of life of patients with BEEC/BE, treatment and follow-up should emphasize physical but also psychological care in these patients. Physicians should further re-evaluate their preconceptions and should take care of the patients throughout their lives.
Assuntos
Extrofia Vesical/complicações , Extrofia Vesical/psicologia , Comportamento Sexual/fisiologia , Comportamento Sexual/psicologia , Adolescente , Adulto , Dispareunia/complicações , Dispareunia/psicologia , Ejaculação , Epispadia/complicações , Epispadia/psicologia , Feminino , Alemanha , Humanos , Masculino , Pessoa de Meia-Idade , Orgasmo , Qualidade de Vida , Inquéritos e Questionários , Adulto JovemRESUMO
The interindividual varying cognitive performance in female patients with Turner's syndrome has usually been attributed to the interindividual varying mosaicism with a consecutive variable loss of X-chromosome DNA or to secondary risk factors such as estrogen deficiency owing to ovarian failure. The aim of our study was to determine the specific impact of X chromosome-related features and associated risk factors, on the one hand and familial influences, on the other hand on the interindividual variation in the cognitive phenotype. One hundred and one subjects with Turner's syndrome and 53 sisters as controls for familial influences were examined by comparing the cognitive information processing abilities (Kaufmann Assessment Battery for Children [K-ABC]). Subjects with Turner's syndrome performed at a significantly lower level than sisters on all subscales (eg, Mental Processing Composite: Turner's syndrome 86.4 [SD 15.0] versus sisters 99.3 [SD 10.6]; P < .001). For the neurocognitive phenotype in subjects with Turner's syndrome, a significant correlation was found only with the sisters' cognitive abilities (Mental Processing Composite: r = .38, P < .05). In contrast, neither the individual mosaic status nor the known associated risk factors predicted the neurocognitive phenotype in Turner's syndrome. These results are corroborated in the regression analyses in those subjects with Turner's syndrome with a sister (Simultaneous Processing(sister) for Simultaneous Processing(Turner's syndrome): beta = .346, P < .05, corrected R2 = .049; and Mental Processing Composite(sister) for Mental Processing Composite(Turner's syndrome): beta = .354, P < .05, corrected R2 = .033). The interindividual variation of intellectual abilities in Turner's syndrome seems to be primarily related to familial coinfluences and not to the interindividual varying loss of X-chromosome DNA in terms of hidden mosaicism or potential associated risk factors.
Assuntos
Transtornos Cognitivos/genética , Família/psicologia , Meio Social , Criança , Pré-Escolar , Deleção Cromossômica , Cromossomos Humanos X , Transtornos Cognitivos/diagnóstico , Transtornos Cognitivos/psicologia , Análise Mutacional de DNA , Feminino , Variação Genética/genética , Haplótipos , Humanos , Inteligência/genética , Mosaicismo , Testes Neuropsicológicos/estatística & dados numéricos , Psicometria , Análise de Regressão , Fatores de Risco , Estatística como AssuntoRESUMO
Starting from Cunningham et al.'s [Seizure 11 (2002) 500] attempt to develop a guideline for giving the diagnosis of childhood epilepsy, the paper discusses the specific difficulties emerging on the way towards a standardisation and development of guidelines for the disclosure of diagnosis. The major objective of disclosure is to enhance positive adaptation towards epilepsy and its associated stressors and treatment demands. Adaptation to a chronic disease, however, depends on subjective processes of stress appraisal and coping response. Supporting adaptation by favourable strategies of disclosure therefore requires to explore and respond to the very personal perception of the medical and psychosocial consequences of the disorder. The broad interindividual variation of subjective anxieties therefore entails the necessity to individualise the procedure of telling the diagnosis in order to maximise its goodness of fit to patient and family characteristics. A procedure is suggested that integrates the individualisation of information provision and counselling, on the one side, and the efforts of standardisation and guideline development, on the other side, in order to improve resulting disclosure practice.
Assuntos
Revelação , Epilepsia/diagnóstico , Adaptação Psicológica , Medicina Baseada em Evidências , Humanos , Entrevistas como Assunto , Relações Profissional-PacienteRESUMO
Similar to the adult patient, a child or adolescent may actively feign or produce artificial symptoms (synonymous: Munchausen syndrome). The more frequent case is that the child suffers from being an object of symptom fabrication induced by a close person caring for the child, regularly the mother (Munchausen syndrome by proxy). This review focuses on psychopathological aspects of the clinically more relevant factitious disorder by proxy. Typical behaviour and personality characteristics are presented that can be taken as clinical warning signs. Doctor-mother-interaction is affectively challenging due to conflicting tasks imposed on the physician. Complementary to pediatric exclusion of genuine disease, psychopathological assessment is required to exclude other sources of deviant illness behaviour. Factious disorder shares particular features (active violation of the child, false report of history, aggravated symptom presentation and increased doctor-hopping, difficulties in conforming maternal report in biomedical data) with other psychopathological entities (child abuse, simulation, dissociative disorders, somatoform disorders including hypochondria, variants of maternal overprotection and infantilization, psychosis or delusion in the mother). Criteria for differentiation are presented. Three concepts on the psychopathological etiology of factitious disorder by proxy are relevant: In some cases, it may be conceived as secondary manifestation of a primary psychopathological entity or personality disorder. Learning theory emphasises operant rewards received from vicarious sick role. Attachment theory provides possible explanations concerning the traumatic impact on the child, early sources of psychopathology in the fabricating mother and risks for intergenerational transmission of factitious disorders.
Assuntos
Transtornos Autoinduzidos/diagnóstico , Síndrome de Munchausen Causada por Terceiro/diagnóstico , Síndrome de Munchausen/diagnóstico , Adolescente , Adulto , Criança , Diagnóstico Diferencial , Transtornos Autoinduzidos/psicologia , Feminino , Humanos , Masculino , Mães/psicologia , Síndrome de Munchausen/psicologia , Síndrome de Munchausen Causada por Terceiro/psicologia , Apego ao Objeto , Determinação da Personalidade , Transtornos da Personalidade/diagnóstico , Transtornos da Personalidade/psicologia , Relações Profissional-Família , Fatores de Risco , Papel do DoenteRESUMO
Living with idiopathic short stature (ISS) may entail significant risks to psychological functioning and quality of life. Apparent inconsistency among study findings can be resolved if methodological differences among study designs are taken into account (i.e., definition of particular endpoints, sample selection from clinic or population, source of report, specific or generic assessment instruments, statistical control of confounders). Some individuals fail and others succeed in mastering the challenges of ISS. The principles of multifinality and equifinality may explain the emergence of a broad variation of individuals with ISS as a result of an interaction of the individual medical and auxological features on the one side, and psychosocial risk and protective factors on the other. As a result, patients may show heterogeneous developmental outcomes ranging from clinical psychopathology to development of resilience. A taxonomy of four distinct pathways of adaptation to ISS is delineated as a basis for case formulation and treatment planning. Psychological intervention in ISS includes counseling, cognitive-behavioral therapy and assertiveness training to improve psychological functioning via enhancement of target coping behaviors for critical situations.
Assuntos
Transtornos do Crescimento/psicologia , Adaptação Psicológica , Adolescente , Adulto , Criança , Terapia Cognitivo-Comportamental , Fatores de Confusão Epidemiológicos , Transtornos do Crescimento/tratamento farmacológico , Humanos , Processos Mentais , Psicoterapia , Qualidade de Vida , Isolamento Social , Estresse PsicológicoRESUMO
OBJECTIVE: To identify problems in the long-term psychosocial and developmental outcome specific to patients with the bladder exstrophy-epispadias complex (BEEC), using a self-developed semi-structured questionnaire, as there are various techniques of reconstruction to repair BEEC but to date neither patients nor surgeons have a clear answer about which type gives the most acceptable long-term results. PATIENTS AND METHODS: Increasingly many patients with BEEC reach adulthood and wish to have sexual relationships and families. To date, no studies have used disease-specific psychological instruments to measure the psychosocial status of patients with BEEC. Thus we contacted 208 patients with BEEC, and 122 were enrolled, covering the complete spectrum of the BEEC. The data assessed included the surgical reconstruction, subjective assessment of continence, developmental milestones, school performance and career, overall satisfaction in life, disease-specific fears and partnership experiences in patients aged >18 years. We compared affected females and males to assess gender-associated differences in quality of life. RESULTS: Affected females had more close friendships, fewer disadvantages in relation to healthy female peers and more partnerships than the males. Family planning seemed to be less of a problem in affected females. There were no gender differences in the adjustments within school and professional career, which was very good in general. CONCLUSION: Future studies are needed to assess the disease-specific anxieties, considering gender-specific differences.
Assuntos
Extrofia Vesical/psicologia , Epispadia/psicologia , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Relações Interpessoais , Masculino , Satisfação Pessoal , Desenvolvimento Psicossexual , Qualidade de Vida , Caracteres Sexuais , Inquéritos e QuestionáriosRESUMO
Interest in the neurocognitive and psychosocial outcomes in children who are born small for gestational age (SGA) has increased since the recent approval of growth hormone (GH) therapy in this indication. The objective of GH treatment in SGA children is to provide a symptomatic treatment for growth retardation. From a patient perspective, the ultimate goals of GH therapy are the reduction in the present or future risk of neurocognitive, psychological, social or occupational impairment, not the accompanying improvements in growth velocity and final height per se. Therefore, from a scientific perspective, neurocognitive and psychosocial endpoints become relevant domains of assessment to determine the final treatment benefit experienced by the patient born SGA. This article reviews recent available studies on developmental risks in SGA, and then transforms the empirical findings into an integrated conceptual framework on the sources and mediators of neurocognitive and psychosocial outcomes in intrauterine growth retardation and SGA. This framework depicts two distinct therapeutic pathways by which GH therapy may improve neurocognitive and behavioural outcomes. The first ('traditional') pathway is the prevention of exposure to short-stature-related stressors via an improvement in growth velocity and final height. The second pathway refers to potential metabolic, and thus neurotropic and psychotropic, effects of GH binding at receptors in the central nervous system, thus changing neuronal activity. To date, the existence and potential mechanisms of such physiologically and not psychologically mediated effects of GH on neurocognitive functioning in SGA patients remain hypothetical.
Assuntos
Cognição/efeitos dos fármacos , Retardo do Crescimento Fetal/tratamento farmacológico , Hormônio do Crescimento Humano/uso terapêutico , Recém-Nascido Pequeno para a Idade Gestacional/crescimento & desenvolvimento , Adolescente , Criança , Pré-Escolar , Transtornos Cognitivos/tratamento farmacológico , Transtornos Cognitivos/etiologia , Feminino , Retardo do Crescimento Fetal/psicologia , Humanos , Lactente , Recém-Nascido , Recém-Nascido Pequeno para a Idade Gestacional/psicologia , Masculino , Transtornos Mentais/tratamento farmacológico , Transtornos Mentais/etiologiaRESUMO
This study examined cognitive development in Silver-Russell syndrome (SRS), a condition with intrauterine growth retardation, persisting short stature, and specific stigmata. Neuropsychological function and cognitive abilities were assessed in a sample of 36 children with SRS (21 males, 15 females; mean age 7 years 6 months, SD 2 years 8 months; age range 3 to 12 years) and 25 normally developing siblings (mean age 8 years 6 months, SD 2 years 7 months; age range 3 to 12 years) using the Kaufman Assessment Battery for Children. Special measures were taken to control for confounding factors and sample bias. Mean overall IQ score in the total SRS sample (95.7, SD 10.63), as measured by the Mental Processing Composite Scale, was significantly reduced (p=0.021) compared with test norms (IQ 100, SD 15), indicating a moderate cognitive impairment. Subscale analysis revealed some specific deficiencies. However, these cannot be attributed to an established category of specific learning disorder. The mean score in the Achievement Scale (91.25, SD 14.92), which is more sensitive to educational influences, showed stronger deficits (p=0.001). The sibling control group achieved a slightly better mean IQ score (104.20, SD 12.32) than test norms (p=0.10). Direct analysis of paired differences between the subsample of children with SRS and a sibling among the control group (n=25) revealed a significant mean difference of 8.08 IQ points (p=0.011). Risk factor analysis revealed that cognitive development is not associated with birth length (p=0.404), birthweight (p=0.820), growth hormone therapy (p=0.810), phenotypic severity (p=0.828), or sex (p=0.880). Two children with maternal uniparental disomy for the entire chromosome 7 had markedly lower IQ scores (81 and 84 respectively). In contrast to the few previous findings, children with SRS show only moderate, but significant, impairments in cognitive outcome, which are more striking in our sample when compared with siblings than with test norms.