The Registry covers the counties of Cork and Kerry in the SW of Ireland population-based, all mothers resident in this geographic area. In addition, there is limited secretarial support. The registry is population-based ,which includes all mothers resident in the Health Service Executive area covering the counties of Dublin, Wicklow and Kildare in the east of Ireland. Address for Further Information. The South East Ireland Congenital Anomaly Register was established in the year and data was retrospectively collected from onwards. The registry is population based and includes babies born to all mothers resident in the South East.
Welcome Logout. Skip to main content. A previous study showed that self-esteem can lead to better health and social behavior and low self-esteem can even be a risk factor for mental disorders and social problems [ 25 ]. Patients who visited the transitional outpatient clinic were satisfied overall with their consultation and the advice and treatment given to them.
Eight patients did not want to participate in the follow-up study because their problems had resolved. From this it may be concluded that the transitional clinic is valuable for a substantial proportion of patients.
Many patients in our study lived with their complaints for years before they visited our clinic. One of the limitations of this study was the small number of patients. It is questionable if this group of patients is representative of all patients operated on for ARM or HD.
Future studies should also focus on the needs and wishes of younger patients in transitional care [ 1 , 2 , 26 ]. Key points in transitional care for these patients would be disease education, sexual education and bowel management programs.
Prolonged follow-up and transition of care offer the opportunity to modify existing treatment and to diagnose new complaints that present at an older age. The use of questionnaires in the transitional outpatient clinic is of value in the evaluation of disease-specific functioning and individual facets of QoL.
It provides the healthcare professional with a helpful tool to determine the complex interrelation between physical and emotional functioning of HD and ARM patients. Self-esteem greatly affects overall QoL. This should be assessed and may be the target of the overall treatment. The study focused on evaluation of healthcare practice, specific approval of the medical ethical board was waived.
Informed consent was obtained from all individual participants included in the report. National Center for Biotechnology Information , U. Techniques in Coloproctology. Tech Coloproctol. Published online Jul 3. Witvliet , 1, 2 N. Petersen , 3 E. Ekkerman , 1 C. Sleeboom , 1 E.vmfas.com/includes/inmates/whatsapp-yazmalarn-kimler-goerebilir.html
Vascular Malformation Clinic - Pediatric | UK HealthCare
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Received Nov 28; Accepted Mar Abstract Background Hirschsprung disease HD and anorectal malformations ARM are congenital disorders with potentially lifelong consequences. Methods This study was conducted in an outpatient clinic of a pediatric surgical center in the Netherlands. Conclusions The transitional outpatient clinic provides care adapted to the needs and wishes of adult HD and ARM patients.
Keywords: Transitional health care, Hirschsprung disease, Anorectal malformation, Quality of life, Health-related quality of life. Introduction The incidence of anorectal malformations ARM and Hirschsprung disease HD is both approximately 1 in live births [ 1 , 2 ]. Materials and methods Transitional outpatient clinic The setup of this transitional outpatient clinic was based upon an earlier study performed in the Netherlands [ 5 ]. Patients To evaluate the design of our transitional outpatient clinic, we invited all adult patients born before , surgically treated for ARM or HD at our pediatric surgical center.
Questionnaires Demographics and disease-specific functioning were assessed using a questionnaire based on one designed by MacMillan et al. How often have you visited the transitional outpatient clinic? Which specialists have you visited after your visited the clinic? Where you satisfied with the consult. If not, why not? Where you on a bowel management program before you visited the clinic? Did you start or adjust your bowel management program? After starting or adjusting this bowel management. Have you experienced less complaints?
Have you started new medication after the visit to the clinic? Do you feel that this medication helps you control your bowels, and that complaints become less? Have you had any surgery as result of your visit to the clinic? Has this surgery helped reducing your complaints? Was the waiting time for the clinic long and a problem for you?
Did you feel that the specialist had enough time to talk to you and discuss all your problems during the visit? Was it possible to see all needed specialists during the first visit? If no, was this of any inconvenience? How do you want to stay in contact with the clinic? Do you have contact with other patients?
If we would organize an event to talk about specific problems you and other patients experience sexuality, bowel management, the disease itself would you be interested? You have completed several questionnaires before your visit. Were you satisfied with these questionnaires, and did it help you to define your problems? Did you miss any questions? Were you satisfied with the complete experience of the transitional outpatient clinic? What could be adjusted in the transitional outpatient clinic?
Open in a separate window. Statistical analysis Statistical analysis was performed using descriptive statistics.
Results Assessment 1 Patient characteristics A total of patients with ARM or HD, born between and , were registered in the database of our hospital. Referrals The pediatric surgeon and the colorectal nurse practitioner informed the involved adult specialists about ARM and HD including the pathology of the disease, the operations that were performed and the possible functional problems during adolescence and adulthood, e.
Specialist Number of patients referred Urologist 2 Clinical geneticist 3 Gastrointestinal surgeon 4 Sexologist 1 Psychologist 2 Gynecologist 4 Plastic surgeon 2 Gastroenterologist 2. Psychological disease-specific functioning Five patients Quality of life Compared to reference scores from a healthy population, a trend was observed in which our patients scored lower on several QoL aspects. A bold p value represents a level of significance of 0.
Disease-specific functioning physical and psychological Of the 13 patients with two evaluations, five reported full continence at assessment 2, compared to four a year earlier. Quality of life Positive changes in QoL over time were not observed in this group.
Transitional health care for patients with Hirschsprung disease and anorectal malformations
The experience of the transitional outpatient clinic Twelve of the 13 patients, who visited the clinic and participated in the second survey, found that the transitional care they had received was satisfactory. Discussion Transitional care is defined as a set of actions designed to ensure the coordination and continuity of health care and safe and timely transfer as patients transfer between different locations or different levels of care at the same or different institution [ 18 , 19 ].
Compliance with ethical standards Conflict of interest The authors declare that they have no conflict of interest. Ethical approval The study focused on evaluation of healthcare practice, specific approval of the medical ethical board was waived.
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Informed consent Informed consent was obtained from all individual participants included in the report. References 1. Chumpitazi BP, Nurko S. Defecation disorders in children after surgery for Hirschsprung disease.
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