Needs Assessment in Care of Adults With Anorectal Malformations and Exstrophy-Epispadias Complex in Germany
Introduction: Medical needs of adults with anorectal malformations (ARM) and the exstrophy-epispadias complex (EEC) are not fully understood. Therefore, the aim of the study was to evaluate how affected individuals get along with the current national medical care and what their medical or social lon...
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2018-12-01
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| Series: | Frontiers in Pediatrics |
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| Online Access: | https://www.frontiersin.org/article/10.3389/fped.2018.00392/full |
| _version_ | 1819011999018778624 |
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| author | Anne Karoline Ebert Nadine Zwink Nicole Schwarzer Lilian Brunner Heiko Reutter Heiko Reutter Ekkehart Jenetzky Ekkehart Jenetzky Johannes Huber Barbara Ludwikowski |
| author_facet | Anne Karoline Ebert Nadine Zwink Nicole Schwarzer Lilian Brunner Heiko Reutter Heiko Reutter Ekkehart Jenetzky Ekkehart Jenetzky Johannes Huber Barbara Ludwikowski |
| author_sort | Anne Karoline Ebert |
| collection | DOAJ |
| description | Introduction: Medical needs of adults with anorectal malformations (ARM) and the exstrophy-epispadias complex (EEC) are not fully understood. Therefore, the aim of the study was to evaluate how affected individuals get along with the current national medical care and what their medical or social long-term requirements are.Patients and Methods: Between 11/2014-07/2016 all adult members (≥18 years, ARM n = 113, EEC n = 126) of the German self-help organizations SoMA e.V. and Blasenekstrophie/Epispadie e.V. were contacted via email or post and asked to fill out an anonymous online questionnaire regarding medical requirements, treatment satisfaction, daily life impairment and expectations regarding physicians soft skills. The results were compared between both groups and male and female participants.Results: 56 participants with ARM (median age 26 years, IQR 19-38) and 52 participants with EEC (median age 31 years, IQR 22-37) filled in the questionnaire completely. Forty-five percent of the ARM and 67% of the EEC participants contacted an urologist. A general surgeon was visited by 23% of the ARM individuals, a peadiatric surgeon by 20%. Although 60% of the females with ARM and 82% of the females with EEC assessed gynecological counseling as helpful or neutral, a small subgroup of ARM females (n = 6, 16%; 70% non-isolated ARM or ARM with Hirschsprung disease and additional associated anomalies) were not satisfied. The majority of both groups reported no or only minor daily life impairment (p = 0.38). Professional knowledge, paying attention to patients' concerns, having empathy and taking enough time was important for over 90% of all participants. Thirty-eight percent of the ARM and 27% of the EEC individuals needed psychological support. Most medical consultations were judged to be helpful.Conclusion: Although adults with ARM and EEC being a self-help organization member and thus well informed and generally cope well, participants expressed their wish for expert counseling regarding family planning, reconstructive procedures, continence management, urological care and social welfare issues. Furthermore, specific expert consultations for gynecological issues in a subgroup of ARM females, mainly non-isolated, might be required. Actual needs of adults with rare conditions must be better clarified to improve medical care beyond childhood and adolescence. |
| first_indexed | 2024-12-21T01:37:04Z |
| format | Article |
| id | doaj.art-4cfcac4348264a7b91ae3af667a8a146 |
| institution | Directory Open Access Journal |
| issn | 2296-2360 |
| language | English |
| last_indexed | 2024-12-21T01:37:04Z |
| publishDate | 2018-12-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Pediatrics |
| spelling | doaj.art-4cfcac4348264a7b91ae3af667a8a1462022-12-21T19:20:14ZengFrontiers Media S.A.Frontiers in Pediatrics2296-23602018-12-01610.3389/fped.2018.00392417816Needs Assessment in Care of Adults With Anorectal Malformations and Exstrophy-Epispadias Complex in GermanyAnne Karoline Ebert0Nadine Zwink1Nicole Schwarzer2Lilian Brunner3Heiko Reutter4Heiko Reutter5Ekkehart Jenetzky6Ekkehart Jenetzky7Johannes Huber8Barbara Ludwikowski9Department of Pediatric Urology, University Hospital for Urology and Pediatric Urology Ulm, Ulm, GermanyDepartment of Pediatric and Adolescent Psychiatry and Psychotherapy, University Medical Centre, Johannes Gutenberg University Mainz, Mainz, GermanySoMA e.V., Self-Help Organisation for People With Anorectal Malformation, Munich, GermanySelf-Help Organisation for People With Bladder exstrophy-epispadias complex, Freital, GermanyInstitute of Human Genetics, University of Bonn, Bonn, GermanyDepartment of Neonatology and Pediatric Intensive Care, Children's Hospital, University of Bonn, Bonn, GermanyDepartment of Pediatric and Adolescent Psychiatry and Psychotherapy, University Medical Centre, Johannes Gutenberg University Mainz, Mainz, GermanyChild Center Maulbronn GmbH, Hospital for Pediatric Neurology and Social Pediatrics, Maulbronn, GermanyUniversity Hospital for Urology, University Medical Center Carl Gustav Carus, Dresden, GermanyDepartment of Pediatric Surgery and Pediatric Urology, Medical Center for Children and Adolescents AUF DER BULT, Hannover, GermanyIntroduction: Medical needs of adults with anorectal malformations (ARM) and the exstrophy-epispadias complex (EEC) are not fully understood. Therefore, the aim of the study was to evaluate how affected individuals get along with the current national medical care and what their medical or social long-term requirements are.Patients and Methods: Between 11/2014-07/2016 all adult members (≥18 years, ARM n = 113, EEC n = 126) of the German self-help organizations SoMA e.V. and Blasenekstrophie/Epispadie e.V. were contacted via email or post and asked to fill out an anonymous online questionnaire regarding medical requirements, treatment satisfaction, daily life impairment and expectations regarding physicians soft skills. The results were compared between both groups and male and female participants.Results: 56 participants with ARM (median age 26 years, IQR 19-38) and 52 participants with EEC (median age 31 years, IQR 22-37) filled in the questionnaire completely. Forty-five percent of the ARM and 67% of the EEC participants contacted an urologist. A general surgeon was visited by 23% of the ARM individuals, a peadiatric surgeon by 20%. Although 60% of the females with ARM and 82% of the females with EEC assessed gynecological counseling as helpful or neutral, a small subgroup of ARM females (n = 6, 16%; 70% non-isolated ARM or ARM with Hirschsprung disease and additional associated anomalies) were not satisfied. The majority of both groups reported no or only minor daily life impairment (p = 0.38). Professional knowledge, paying attention to patients' concerns, having empathy and taking enough time was important for over 90% of all participants. Thirty-eight percent of the ARM and 27% of the EEC individuals needed psychological support. Most medical consultations were judged to be helpful.Conclusion: Although adults with ARM and EEC being a self-help organization member and thus well informed and generally cope well, participants expressed their wish for expert counseling regarding family planning, reconstructive procedures, continence management, urological care and social welfare issues. Furthermore, specific expert consultations for gynecological issues in a subgroup of ARM females, mainly non-isolated, might be required. Actual needs of adults with rare conditions must be better clarified to improve medical care beyond childhood and adolescence.https://www.frontiersin.org/article/10.3389/fped.2018.00392/fullanorectal malformation (ARM)exstrophy-epispadias complex (EEC)health carelong-term quality of life issuesmedical aftercare |
| spellingShingle | Anne Karoline Ebert Nadine Zwink Nicole Schwarzer Lilian Brunner Heiko Reutter Heiko Reutter Ekkehart Jenetzky Ekkehart Jenetzky Johannes Huber Barbara Ludwikowski Needs Assessment in Care of Adults With Anorectal Malformations and Exstrophy-Epispadias Complex in Germany Frontiers in Pediatrics anorectal malformation (ARM) exstrophy-epispadias complex (EEC) health care long-term quality of life issues medical aftercare |
| title | Needs Assessment in Care of Adults With Anorectal Malformations and Exstrophy-Epispadias Complex in Germany |
| title_full | Needs Assessment in Care of Adults With Anorectal Malformations and Exstrophy-Epispadias Complex in Germany |
| title_fullStr | Needs Assessment in Care of Adults With Anorectal Malformations and Exstrophy-Epispadias Complex in Germany |
| title_full_unstemmed | Needs Assessment in Care of Adults With Anorectal Malformations and Exstrophy-Epispadias Complex in Germany |
| title_short | Needs Assessment in Care of Adults With Anorectal Malformations and Exstrophy-Epispadias Complex in Germany |
| title_sort | needs assessment in care of adults with anorectal malformations and exstrophy epispadias complex in germany |
| topic | anorectal malformation (ARM) exstrophy-epispadias complex (EEC) health care long-term quality of life issues medical aftercare |
| url | https://www.frontiersin.org/article/10.3389/fped.2018.00392/full |
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