SUMMARY The urinary and bowel control was studied of 527 children with myelomeningocele aged between four and 18 years. Information was obtained from medical records and by parent questionnaire. 44 had normal urinary control, 50 had a urinary diversion and the remaining 433 had neuropathic bladder without urinary diversion, of whom 31 per cent expressed their bladder manually and 40 per cent used clean intermittent catheterisation (CIC). 60 per cent needed assistance emptying their bladder. Children using CIC were more continent and needed less help, but were more often treated with antibiotics. Of the 527 children, 412 had disturbed bowel control. 212 evacuated their bowels manually, of whom 90 per cent needed assistance. Parents judged urinary incontinence to be very stressful for 37 per cent of the children and faecal incontinence for 33 per cent. The authors conclude that social urinary continence should be defined as the ability to keep dry for three hours or more. RÉSUMÉ Contrôle intestinal et vésical chez les enfants porteurs de spina bifida: une étude nordique Le contrôle urinaire et vésical a étéétudié chez 527 enfants avec myéloméngocèle, âgés de quartre à 18 ans. Les informations ont été obtenues à partir des dossiers médicaux et par un questionnaire proposé aux parents. 44 enfants avaient un contrôle urinaire normal, 50 présentaient une dérivation urinaire, le reste étant 433 vessies neurologiques sans dérivation urinaire; parmi ces derniers cas, la vessie était pressée manuellement dans 31 pour cent des cas et le sondage propre intermittent (CIC) était utilisé dans 40 pour cent des cas. 60 pour cent des enfants avaient besoin d'assistance pour vider leur vessie. Les enfants avec CIC étaient plus continents, demandaient moins d'aide, mais étaient plus souvent traités par antibiotiques. Parmi les 527 cas, le contrôle intestinal était perturbeé adans 412 cas. 212 enfants évacuaient leur rectum manuellement, 90 pour cent d'entre eux avaient besoin d'aide. Les parents jugeaient l'incontinence urinaire difficile à supporter chez 37 pour cent des enfants, l'incontinence rectale chez 33 pour cent. Les auteurs concluent que la continence urinaire peut être socialement définie comme une capacitéà demeurer sec trois heures ou plus. ZUSAMMENFASSUNG Darm‐ und Blasenkontrolle bei Kindern mit Myelomeningocele: eine nordeuropäische Studie Bei 527 Kindern mit Myelomeningocele im Alter zwischen vier und 18 Jahren wurden Blasen‐ und Darmkontrolle untersucht. Die Informationen wurden den Krankenakten und den Fragebögen der Eltern entnommen. 44 hatten normale Urinkontrolle, 50 hatten eine Harnableitung, und die restlichen 433 hatten eine neurogene Blase ohne Harnableitung, 31 Prozent davon drückten ihre Blase manuell aus und 40 Prozent benutzten die sterile intermittierende Katheterisierung (CIC). 60 Prozent waren bei der Blasenentleerung auf Hilfe angewiesen. Kinder, die die CIC benutzten, hatten eine bessere Kontinenz und brauchten weniger Hilfe, sie wurden aber häufiger mit Antibiotika behandelt. Von den 527 Kindern h...
This study was carried out to evaluate the medical impairments and disability among 527 children with myelomeningocele living in four Nordic countries. The information was extracted form questionnaires and data based on case records. The level of intellectual functioning was fairly high with 76% within normal range (IQ greater than 90). Shunt operations were performed in 68% of the children and 1/3 had had four or more shunt revisions. Twenty-three per cent walked without support. Bladder incontinence was found in 60% of the children whereas 4% were entirely continent. Intermittent catheterisation was used in 36% with higher frequency among girls (48%) than boys (24%). We found a higher incidence of bacteriuria among those who used catheterisation than among those who used manual compression. Bowel control was experienced by 112 (21%) of the children. The overall disability is classified according to Lorbber's 5-graded handicap scale and Lagergren's 3-graded scale. According to Lagergren's scale, 70% suffered form severe overall disability.
SUMMARY Family dynamics and social conditions were studied of 527 children with myelomeningocele aged four to 18 years from Denmark, Finland, Norway and Sweden; the control group was a representative sample of 7792 children of the same age‐range and from the same countries. Information was obtained from postal questionnaires and from patients' charts. Overall, there were more similarities than differences between index and control families, the major difference occurring in measures related to the mothers' situation. Variations within groups of index families were in many respects more important than differences between index and control families. In spite of the different welfare systems developed to support families with disabled children, this study clearly showed that the responsibility for the care of the disabled child still lies primarily with the mother. Increased efforts must be made to meet the needs of these mothers. RÉSUMÉ Enfanls spina bifida: l'impact de l'incapacité sur la dynamique familiale el les conditions sociales. line étude nordique La dynamique familiale et les conditions sociales ont étéétudies chez 527 enfants spina bifida âgés de quatre à 18 ans, venant du Danemark, de la Finlande, de la Norvége et de la Suéde. Un groupe contrôle fut constituéà partir d'un échantillon représentatif de 7792 enfants des mêmes âges et des mêmes pays. Les informations ont été obtenues par étude des dossiers et réponses à des questionnaires adressés par poste. Globalement, les ressemblances entre les families index el contrôles étaient plus marquées que les différences, la différence majeure survenant dans les items concernant la situation de la mére. Les variations entre les groupes de families index étaient sur de nombreux points plus importantes que les différences entre families index et families contrôles. En dépit d'une différence dans les systèmes de protection sociale assistant les families d'enfants handicapés, cette étude montre clairement que la responsabilité des soins à l'enfant handicapé repose avant tout sur la mère. Un effort accru doit être fait pour répondre aux besoins de ces mères. ZUSAMMENFASSUNG Kinder mit Myelomeningocele: Auswirkung der Behinderung auf das Familienleben und die sozialen Umstände. Eine skandinavische Studie In Dänemark, Finnland, Norwegen und Schweden wurden bei 527 Kindern mit Myelomeningocele im Ater von vier bis 18 Jahren Familienleben und soziales Umfeld untersucht; die Kontrollgruppe bildete eine repräsentative Anzahl von 7792 Kindern desselben Alters und aus denselben Ländern. Die Informationen wurden verschickten Fragebögen und der Patientenkartei entnommen. Im Allgemeinen bestanden mehr Übereinstimmungen als Unterschiede zwischen der Indexgruppe und den Kontrollfamilien, die deutlichsten Unterschiede fanden sich jedoch bei Parametern, die die Situation der Mutter betrafen. Unterschiede innerhalb der Gruppe der Indexfamilien waren in vieler Hinsicht wichtiger als Unterschiede zwischen Index‐ und Kontrollfamilien. Trotz verschiedener Wohlfahrtssysteme, die zur Unt...
A study was conducted on utilization of and satisfaction with the health care and medical services among 527 Scandinavian children (aged 4-18) with myelomeningocele (MMC). Data were collected from two sources: a questionnaire distributed to parents in 1984, and patients' medical records. Comparisons were made with a control group comprised of 7,792 children. Over a period of one year, 52% of the MMC group and 6% of the controls were hospitalized. Over 3 months, children with MMC had more contact with specialist care services than had the controls, while contact with primary health care was the same for both groups. Continuity of care and satisfaction with time spent with the physician were both greater among children with MMC than in the control group. Dissatisfaction with medical services was expressed by approximately 10% of the parents of both categories. Such dissatisfaction was found significantly more frequently among Danish parents and well educated mothers. Dissatisfaction with care was not related to either the child's age or the severity of its disability. Danish children with MMC received treatment relatively more frequently from primary care physicians than from specialists. In Sweden, where satisfaction was the greatest, families with children with MMC were supported by local habilitation teams.
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