Prevalence of Active Long-term Problems in Patients With Anorectal Malformations: A Systematic Review

Springford, Laurie Rigueros; Connor, Martin J.; Jones, Katie; Kapetanakis, Venediktos; Giuliani, Stefano

doi:10.1097/dcr.0000000000000576

Cited by 72 publications

(35 citation statements)

References 34 publications

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“…It is increasingly recognized that continuing follow-up and transitional care of patients with complex problems, such as ARM or HD, is an essential part of health care [ 9 ]. Many authors have reported the need for a transitional outpatient clinic, or have described the need to define patients’ problems during the transition phase to facilitate the process of starting adult care [ 9 – 12 ].…”

Section: Introductionmentioning

confidence: 99%

Transitional health care for patients with Hirschsprung disease and anorectal malformations

et al. 2017

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Background Hirschsprung disease (HD) and anorectal malformations (ARM) are congenital disorders with potentially lifelong consequences. Although follow-up is performed in most pediatric patients, transfer to adult health care is often problematic. This study assesses transitional care with the help of questionnaires in consultation with adult patients.MethodsThis study was conducted in an outpatient clinic of a pediatric surgical center in the Netherlands. All patients born and treated for ARM or HD before 1992 were invited to visit our clinic. Patients completed questionnaires concerning disease-specific functioning and quality of life at an initial visit to in response to which individual treatment plans were modified. Patients were reviewed 1 year later.Results Twenty-seven patients (17 ARM and 10 HD), mean age 27.9 years (range 17–64 years) of the 168 invited visited the transitional clinic (17%). Passive fecal incontinence was reported by 7/27, other defecatory problems, including urge incontinence and incomplete evacuation in 17/27 and anal or abdominal pain reported by 9/27. Quality of life was lower than a matched population. Only 13/27 returned for repeat assessment at 1 year; however, a further 8 reported that that their problems had resolved. In those attending follow-up, negative thoughts and feelings about their condition had decreased and one more patient was fully continent. There was no change in quality of life, bowel function or pain recorded. Twelve out of thirteen patients reported that they had found the transitional clinic satisfactory.ConclusionsThe transitional outpatient clinic provides care adapted to the needs and wishes of adult HD and ARM patients. It is a novel addition to quality of care of patients with complex congenital disorders.

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Section: Introductionmentioning

confidence: 99%

Transitional health care for patients with Hirschsprung disease and anorectal malformations

et al. 2017

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“…These diseases are, respectively, caused by the incomplete or insufficient development of the anus or rectum ( Holschneider & Puri, 2008 ) or the absence of enteric nervous system along the intestine ( Amiel et al, 2008 ). Although ARM and HD are often diagnosed and treated during the neonatal period, patients often experience long-term gastrointestinal morbidity such as chronic incontinence, constipation, or defective bowel control ( Rigueros Springford et al, 2016 ; Rintala & Pakarinen, 2012 ; Stenström et al, 2014 ). In addition, psychological problems are frequently observed, such as shame due to fecal incontinence.…”

Section: Introductionmentioning

confidence: 99%

“…Sexual impairment could also be the result of postoperative problems, such as scar tissue, or constrictions in the genital area due to urogenital anomalies ( Athanasakos et al., 2006 ; Manderson, 2005 ; Witvliet et al, 2017 ). 1 These problems can negatively affect the sexual health of these patient groups ( Kyrklund et al, 2016 ; Rigueros Springford et al, 2016 ; van den Hondel et al., 2015 ).…”

Section: Introductionmentioning

confidence: 99%

Empowering Patients and Health Professionals to Address Sexual Health in the Context of Anorectal Malformations and Hirschsprung’s Disease

et al. 2020

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The aim of this study is to develop a tool that is aligned with patients’ and health professionals’ needs to address sexual health in the context of anorectal malformations and Hirschsprung’s disease. A multiphased participatory action–research was conducted. First, an inventory of needs was made through interviews (11 patients, 11 professionals), three online focus groups (4 patients, 20 professionals), and a questionnaire (38 patients). Subsequently, four cocreation sessions with in total four patients and nine professionals were organized to translate the needs into a tool (in the form of a website). The websites’ functionality was assessed via a questionnaire ( n = 34). The website, directed to patients, their parents, and professionals, stimulates awareness, fills knowledge gaps, and shows possibilities for support. The website is expected to change restrictive attitudes toward sexual health and improve the legitimization of the topic needed for the allocation of resources and sexologists’ involvement in current care pathways.

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“…In Japan, congenital GI tract atresia was a leading cause of neonatal surgical diseases in 2013 ( 2 ) . Due to medical advances, the mortality rate of children born with GI tract atresia has decreased year by year ( 3 ) ; however, related long-term morbidities, such as feeding gastrostomy or jejunostomy, short bowel syndrome, faecal and/or urinary incontinence, and chronic constipation ( 4 – 6 ) , continue to have a significant impact on childhood quality of life. In addition, occurrence of the condition typically increases the psychological and social burden on mothers, as well as on their partners and families due to concern for the child’s health.…”

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confidence: 99%

Fish consumption in early pregnancy and congenital gastrointestinal tract atresia in the Japan Environment and Children’s Study

et al. 2018

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Current evidence suggests that the aetiology of congenital gastrointestinal (GI) tract atresia is multifactorial, and not based solely on genetic factors. However, there are no established modifiable risk factors for congenital GI tract atresia. We used data from a Japanese nationwide birth cohort study launched in 2011, and examined whether fish consumption in early pregnancy was associated with congenital GI tract atresia. We analysed data of 89 495 women (mean age at delivery=31·2 years) who delivered singleton live births without chromosomal anomalies. Based on the results of the FFQ, we estimated the daily intake of fish and n-3 PUFA consumption in early pregnancy. We defined a composite outcome (oesophageal atresia, duodenal atresia, jejunoileal atresia and/or anorectal malformation) as congenital GI tract atresia. In this population, median fish intake was 31·9 g/d, and seventy-four cases of congenital GI tract atresia were identified. Fish consumption in early pregnancy was inversely associated with the composite outcome (multivariable-adjusted OR for the high v. low consumption category=0·5, 95 % CI 0·3, 1·0). For all the specific types of atresia, decreased OR were observed in the high consumption category, although not statistically significant. Reduced atresia occurrence was observed even beyond the US Food and Drug Administration’s recommended consumption of no more than 340 g/week. Also, n-3 PUFA-rich fish and n-3 PUFA consumptions tended to be inversely associated with atresia. Fish consumption in early pregnancy may be a preventive factor for congenital GI tract atresia.

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Prevalence of Active Long-term Problems in Patients With Anorectal Malformations: A Systematic Review

Cited by 72 publications

References 34 publications

Transitional health care for patients with Hirschsprung disease and anorectal malformations

Transitional health care for patients with Hirschsprung disease and anorectal malformations

Empowering Patients and Health Professionals to Address Sexual Health in the Context of Anorectal Malformations and Hirschsprung’s Disease

Fish consumption in early pregnancy and congenital gastrointestinal tract atresia in the Japan Environment and Children’s Study

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