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  • 1
    Keywords: OUTCOMES ; ANOMALIES ; RECONSTRUCTION ; CHILDHOOD ; TERM-FOLLOW-UP ; ADOLESCENCE ; FERTILITY ; EPISPADIAS COMPLEX ; SOCIAL INTEGRATION ; PATIENTS BORN
    Abstract: 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
    Type of Publication: Journal article published
    PubMed ID: 25986209
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  • 2
    Keywords: ANOMALIES ; CHILDREN ; QUALITY-OF-LIFE ; quality of life ; ADULT PATIENTS ; ADJUSTMENT ; adaptation ; SPECTRUM ; ADOLESCENTS ; HIRSCHSPRUNGS-DISEASE ; Anorectal malformation ; CONGENITAL ANORECTAL-MALFORMATIONS ; Stress and coping ; TERM ; VACTERL ; VACTERL-ASSOCIATION ; VATER
    Abstract: 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. 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 alpha = .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. 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). 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
    Type of Publication: Journal article published
    PubMed ID: 21789667
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  • 3
    ISSN: 1573-2649
    Keywords: Paediatric growth disorder ; short stature; ; psychosocial adaptation; ; physical stress; ; psychological stress; ; coping.
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Recent studies report comparable psychosocial adaptation in children with or without a growth disorder. These findings may be due to a general lack of sensitive and specific techniques for analysing and comparing their respective qualities of life. In this study we present a new questionnaire for parents of short-statured children. We suggest both a qualitative and quantitative approach providing specific information about the relative extent of individual stress factors and sources of help. The parents of 442 children with growth retardation resulting from different aetiologies completed the questionnaire. Aprincipal component analysis of the scaled items revealed four dimensions of psychosocial adaptation: suffering, future anxieties, behavioural problems and coping efforts. The index of internal consistency reliability was sufficient for all scales. The comparison of two selected growth disorder groups (achondroplasia versus growth hormone deficiency) demonstrated growth disorder-specific but not very different profiles of psychosocial adaptation. The qualitative analysis revealed a shift in the stress factor patterns (achondroplasia, more physical restrictions). These findings give evidence for both the specificity and construct validity of the new instrument. Therefore, we may conclude that this questionnaire is a helpful method in attaining growth disorder-specific information about individual stress factors, resources and psychosocial adaptation.
    Type of Medium: Electronic Resource
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  • 4
    ISSN: 1432-1076
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Type of Medium: Electronic Resource
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  • 5
    ISSN: 1433-0474
    Keywords: Schlüsselwörter Epilepsie bei Kindern ; Neuropsychologische Lateralisation ; Kognitive Informationsverarbeitung ; EEG-Fokus ; Kaufman-assessment-battery-for-children ; Key words Epilepsy in children ; Neuropsychological lateralisation ; Cognitive information processing ; Hypersynchrone electroencephalographic activity ; Kaufman-assessment-battery-for-children
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Description / Table of Contents: Summary Neuropsychological studies could demonstrate increased risk for impaired attention and short term memory as well as a general reduced information processing speed in childhood′s epilepsy. Up to now it is not totally understood if focal EEG-pathology represents a specific cognitive deficit strongly related to the corresponding hemisphere’s functions or represents a less lateralized but more general cognitive deficit of both cerebral hemispheres. In a sample of 44 pediatric patients with epilepsy we studied sequential and simultaneous cognitive information processing. As a major result a general decreased function in cognitive information processing (more sequential than simultaneous) has been found. There was no correlation with the localization of an EEG-Focus nor with the hand preference. According to previous studies patients with an increased number of medical drugs or with presence of neuroradiological lesions are at greatest risk for cognitive impairment. Our data indicate a possible affection of underlying metamemory functions.
    Notes: Zusammenfassung Neuropsychologische Studien an Kindern mit Epilepsie konnten ein erhöhtes Risiko für Störungen der Aufmerksamkeit und des Kurzzeitgedächtnisses sowie eine insgesamt verringerte Geschwindigkeit der Informationsverarbeitung nachweisen. Es ist bis heute nicht geklärt, ob eine fokale EEG-Pathologie eher zu einem lateralisierten kognitiven Defizit führt, das eng mit den Funktionen der korrespondierenden Hemisphäre verbunden ist, oder aber zu einer eher generellen Störung der Funktionen beider Hemisphären. An einer Stichprobe von 44 Kindern mit Epilepsie untersuchten wir die sequentielle und die simultane Informationsverarbeitung in Abhängigkeit von der Lokalisation des EEG-Fokus. Das wichtigste Ergebnis ist der Nachweis einer generellen Funktionsbeeinträchtigung bei der kognitiven Informationsverarbeitung; das sequentielle Denken war in stärkerem Ausmaß betroffen. Ein Zusammenhang zwischen der Lokalisation des EEG-Fokus oder der Handpräferenz und dem Ausmaß der Beeinträchtigung konnte nicht nachgewiesen werden. Wie in anderen Studien zeigte sich jedoch bei Kindern, die eine erhöhte Anzahl antikonvulsiver Medikamente benötigen, und bei Kindern mit nachgewiesener neuroanatomischer Läsion ein erhöhtes Risiko für Störungen der kognitiven Informationsverarbeitung. Die Ergebnisse deuten auf eine mögliche Beeinträchtigung zugrundeliegender Metagedächtnisfunktionen hin.
    Type of Medium: Electronic Resource
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  • 6
    ISSN: 1433-0474
    Keywords: Schlüsselwörter Chronische Erkrankungen ; Familienberatung ; Patientenschulung ; Verhaltenstraining ; Verhaltensmedizin ; Key words Typology of chronic disease ; Family counseling ; Patient education ; Behavioral training ; Behavioral medicine
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Description / Table of Contents: Summary A typology of chronic illness in childhood and adolescence is developed. Type I represents diseases with a progressive-lethal course. Here, the key psychological approach consists of family counselling in order to maintain life quality and to support the ongoing family adaptation process. Type II refers to diseases with a continuous course with acute exacerbating but medically controllable symptoms (e. g. asthma, diabetes mellitus). Corresponding key interventions are patient education and behavioral training with the focus on an improved, self-responsible disease management. Type III comprises recurrent diseases with potential psychophysiological correlates (e. g. pain syndromes) which may require a functional behavioral analysis for diagnostic reasons, and the various strategies of behavioral medicine for therapeutical reasons.
    Notes: Zusammenfassung Es wird eine Typologie chronischer Erkrankungen im Kindes- und Jugendalter entwickelt. Typ I repräsentiert progressiv-letal verlaufende Erkrankungen (z. B. neurodegenerative Krankheiten). Das psychologische Grundkonzept besteht hier in einer Familienberatung mit dem Ziel der Sicherung von Lebensqualität und der Unterstützung des familiären Adaptationsprozesses. Bei Typ II handelt es sich um stationär verlaufende Erkrankungen mit akut exazerbierender, aber medizinisch kontrollierbarer Symptomatik (z. B. Asthma, Diabetes mellitus). Indiziert sind vorrangig Patientenschulung und Verhaltenstraining mit dem Ziel eines optimierten, eigenverantwortlichen Krankheitsmanagements. Typ III umfaßt chronisch-rezidivierende Erkrankungen mit möglicher psychophysiologischer Beteiligung (z. B. chronische Zephalgien). Hier sind diagnostisch die funktionale Verhaltensanalyse und therapeutisch differenzierte Strategien aus der Verhaltensmedizin geeignet.
    Type of Medium: Electronic Resource
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  • 7
    ISSN: 1433-0474
    Keywords: Schlüsselwörter Münchhausen-by-proxy-Syndrom ; Kindesmißhandlung ; Artifizielle Krankheiten ; Rechtsmedizin ; Key words Munchausen by proxy syndrome ; Child abuse ; Artificial illness ; Legal authorities
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Description / Table of Contents: Summary The diagnosis of Munchausen by proxy syndrome, a subtle form of child abuse, is very difficult. One reason is a seemingly well caring ”ideal” mother who is mainly responsible for the fabricated illness of her child, the other biologically and technically well trained medical doctors maltreating the children unwittingly. Doctors are often separated from each other by their subspecialities but nevertheless directly approached by the mothers. The latter frequently have a medical education. A warning list of ″red flags″ of symptoms and clinical situations should sensitise the pediatrician for artificial illnesses and enable him to start diagnostic work-up early. One responsible doctor should coordinate all activities. The crucial step is a separation of mother and child, but a team approach involving child psychiatry, child wellfare organisations and legal authorities is mandatory. Therapeutic options for the perpetrators are minimal. The prognosis is poor if such a child is not separated from his family or retransferred too early. Research to understand psychopathology and to develop new therapeutic options is needed.
    Notes: Zusammenfassung Das Münchhausen-by-proxy-Syndrom ist eine subtile Form der Kindesmißhandlung. Die Diagnose ist äußerst schwierig. Das liegt zum einen an den oberflächlich betrachtet fürsorglichen Eltern und andererseits an den biologisch-technisch ausgerichteten Medizinern, die entscheidend, aber unwissentlich lange Mitmißhandler sind. Letztere verteilen sich auf viele, miteinander zu wenig kommunizierende Fachdisziplinen und werden oft direkt von den Patienten kontaktiert. Die Erfindung glaubhafter medizinischer Symptome durch die meistens verantwortlichen Mütter beruht oft auf einer eigenen „medizinischen Ausbildung” und/oder in der zunehmenden Medizinalisierung der breiten Öffentlichkeit. Eine Warnliste an Symptomen und Konstellationen sollte den Haus- oder Kinderarzt für artifizielle Krankheiten sensibilisieren, um möglichst früh erste diagnostische Schritte einzuleiten. Es ist entscheidend, daß ein verantwortlicher Kinderarzt die Initiative ergreift und die Fäden in der Hand behält. Die beweisende Diagnose ist oft nur im Team in Zusammenarbeit mit Kinderpsychiatrie, Pädagogik, Justiz und Jugendbehörden möglich und erfordert die Trennung von Mutter und Kind. Erfolgreiche therapeutische Ansätze für die Täter existieren nur vereinzelt. Bei fehlender Trennung von der Familie oder zu frühem Retransfer ist die Prognose für die mißhandelten Kinder sehr ungünstig. Ein wissenschaftstheoretischer Ansatz zum besseren Verständnis der Psychopathologie und zur Entwicklung neuer therapeutischer Alternativen ist erforderlich.
    Type of Medium: Electronic Resource
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  • 8
    Electronic Resource
    Electronic Resource
    Oxford, UK : Blackwell Publishing Ltd
    BJOG 107 (2000), S. 0 
    ISSN: 1471-0528
    Source: Blackwell Publishing Journal Backfiles 1879-2005
    Topics: Medicine
    Notes: We examined the psychomotor development of 33 of 61 surviving children, from a series of 107 consecutive live-born cases with nonimmune hydrops fetalis. The majority had a normal outcome. Three had a (simultaneous) serious underlying disease (e.g. fetal herpes infection) and had either severe psychomotor retardation or blindness. Two showed clumsiness and were considered to have minor neurological dysfunction. We conclude that survivors, especially those with transient benign intrauterine conditions, such as lymphatic aetiology have no additional risk to their psychomotor development.
    Type of Medium: Electronic Resource
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