Challenges in Transition of Care for Patients With Anorectal Malformations: A Systematic Review and Recommendations for Comprehensive Care

Cairo, Sarah B.; Gasior, Alessandra C.; Rollins, Michael D.; Rothstein, David H.

doi:10.1097/dcr.0000000000001033

Cited by 44 publications

(21 citation statements)

References 59 publications

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“…With the awareness, that evaluation, attainment and maintenance of sexual health are especially lacking in patients with the history of a congenital ARM, the ARM-Net consortium aimed to identify current practice, as well as personal opinions of pediatric surgeons from different European renown pediatric surgical centers towards this specific issue. As demonstrated by a recent review, pediatric surgeons have by now recognized their responsibility to follow their patients with ARM into adulthood [19]. This approach coincides with the fact that more than 90% of the pediatric surgeons who participated in this study follow their ARM patients.…”

Section: Discussionsupporting

confidence: 52%

What do pediatric surgeons think about sexual issues in dealing with patients with anorectal malformations? The ARM-Net consortium members’ opinion

et al. 2019

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Purpose Since pediatric surgeons aim to follow their patients with anorectal malformations (ARM) into adulthood the aim of this study was to investigate how pediatric surgeons deal with sexual issues related to ARM. Methods In 2018, a questionnaire was developed by the working group “Follow-up and sexuality” of the ARM-Net consortium and sent to all consortium-linked pediatric surgeons from 31 European pediatric surgical centers. Obtained data were statistically analyzed. Results Twenty-eight of 37 pediatric surgeons (18 males/10 females) answered the questionnaire. The majority of pediatric surgeons (82%) think they should talk about sexual issues with their patient. More than 50% of pediatric surgeons do not feel at all or only moderately confident discussing the topic of sexuality. Most pediatric surgeons require more support (96%) and wish to be trained in sexuality and sexual issues (78%) to feel confident towards their ARM-patients/parents. For optimal care, sexual issues with ARM-patients should be managed by a multidisciplinary team. Conclusions Pediatric surgeons feel that sexuality is an important issue for their ARM-patients, which they are primarily responsible of but should be managed in concert with a multidisciplinary team. A training in sexuality is wished to feel more confident about this specific issue.

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Section: Discussionsupporting

confidence: 52%

What do pediatric surgeons think about sexual issues in dealing with patients with anorectal malformations? The ARM-Net consortium members’ opinion

et al. 2019

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“…The majority of reviews (n = 139) concerned care of common chronic conditions such as depression, anxiety, diabetes and heart failure. Three reviews concerned care for a single rare condition [37][38][39] and 12 included both rare and common chronic conditions [40][41][42][43][44][45][46][47][48][49][50][51]. Rare conditions included: Anorectal malformations, Guillain-Barré syndrome, Mayer-Rokitansky-Küster-Hauser syndrome, Sickle Cell disease, Juvenile Idiopathic Arthritis, Cystic Fibrosis, Spina bifida, Creutzfeldt-Jakob disease and Duchenne Muscular Dystrophy.…”

Section: Review Characteristicsmentioning

confidence: 99%

Defining Coordinated Care for People with Rare Conditions: A Scoping Review

et al. 2020

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Introduction: To coordinate care effectively for rare conditions, we need to understand what coordinated care means. This review aimed to define coordinated care and identify components of coordinated care within the context of rare diseases; by drawing on evidence from chronic conditions. Methods: A systematic scoping review. We included reviews that reported or defined and outlined components of coordinated care for chronic or rare conditions. Thematic analysis was used to develop a definition and identify components or care coordination. Stakeholder consultations (three focus groups with patients, carers and healthcare professionals with experience of rare conditions) were held to further explore the relevance of review findings for rare conditions. Results: We included 154 reviews (n = 139 specific to common chronic conditions, n = 3 specific to rare conditions, n = 12 both common/rare conditions). A definition of coordination was developed. Components were identified and categorised by those that: may need to be coordinated, inform how to coordinate care, have multiple roles, or that contextualise coordination. Conclusions: Coordinated care is multi-faceted and has both generic and context-specific components. Findings outline many ways in which care may be coordinated for both rare and common chronic conditions. Findings can help to develop and eventually test different ways of coordinating care for people with rare and common chronic conditions.

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“…Considering the very low incidence of this malformation and the variety of clinical presentations, the majority of published literature focus on description of the anatomical spectrum and the possible embryological etiology and less on the short-and long-term surgical planning, implementation of a structured follow-up plan, and the responsibility for transition of care into adult healthcare of these complex patients [3,4].…”

Section: Introductionmentioning

confidence: 99%

Caudal Duplication Syndrome Systematic Review—A Need for Better Multidisciplinary Surgical Approach and Follow-Up

et al. 2020

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Background and Objectives: Caudal duplication syndrome is a rare association of anatomical anomalies describing duplication of the hindgut, spine, and uro-genital structures, leading to varied clinical presentations. The current literature focuses on case reports which describe the embryological etiology and anatomical spectrum of the condition giving little attention to the surgical preparation, the need for a well-structured follow-up program, or the transition into adult healthcare of these complex patients. No reviews have been published regarding this complex pathology. Materials and Methods: A review of caudal duplication syndrome cases was done to assess the range of the clinical malformations, timing, and types of surgical interventions. Inconsistencies in multidisciplinary care, follow-up, and risk events were described. Results: Hindgut duplication always involved the anorectal region. Anorectal malformations were evenly distributed as unilateral and bilateral. Colon duplication extended from the anal region to the transverse colon or ascending colon in most of the cases and less to terminal. In females, genital duplication was present in all cases. The follow-up period varied between 3 months and 12 years. In all adult females, the motive of presentation was related to pregnancy (complications after successful delivery, fertility evaluation) or late complications (fecalith obstruction of the end-to-side colon anastomosis, repeated UTIs with renal scarring). Conclusions: Complex malformations affecting multiple caudal organs may have a strong impact in many aspects of the long-term quality of life; therefore, patients with caudal duplication syndrome need increased awareness and joined multidisciplinary treatment.

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Challenges in Transition of Care for Patients With Anorectal Malformations: A Systematic Review and Recommendations for Comprehensive Care

Cited by 44 publications

References 59 publications

What do pediatric surgeons think about sexual issues in dealing with patients with anorectal malformations? The ARM-Net consortium members’ opinion

What do pediatric surgeons think about sexual issues in dealing with patients with anorectal malformations? The ARM-Net consortium members’ opinion

Defining Coordinated Care for People with Rare Conditions: A Scoping Review

Caudal Duplication Syndrome Systematic Review—A Need for Better Multidisciplinary Surgical Approach and Follow-Up

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