Louise Tofft1, Anders Telle Hoel2, Carita Håkansson3, Antoni Zawadzki4, Helene Gjone5, Tom Øresland6, Kristin Bjørnland2, Pernilla Stenström1. 1. Department of Paediatric Surgery, Skåne University Hospital and Department of Clinical Sciences, Paediatrics, Lund University, Lund, Sweden. 2. Department of Paediatric Surgery, Oslo University Hospital and University of Oslo, Oslo, Norway. 3. Division of Occupational and Environmental Medicine, Lund University, Lund, Sweden. 4. Department of Surgery, Pelvic Floor Centre Malmö, Skåne University Hospital and Lund University, Malmö, Sweden. 5. Division of Paediatric and Adolescent Medicine, Department of Child and Adolescent Mental Health in Hospitals, Oslo University Hospital, Oslo, Norway. 6. Pelvic Floor Centre, Department of GI Surgery, Akershus University Hospital and University of Oslo, Oslo, Norway.
Abstract
OBJECTIVES: Transitional care for adolescents with congenital malformations, such as anorectal malformations (ARM), is described sparsely in the literature and referred to as being inadequate. In order to organize future successful healthcare structures, knowledge of patient-reported important aspects of transition is required. The aim of the study was therefore to explore the needs and expectations of transitional- and adult healthcare among adolescents and adults born with ARM. METHODS: Two tertiary paediatric surgical centres, in collaboration with two tertiary pelvic floor centres, in Sweden and Norway, conducted a qualitative study, involving adolescents and adults born with ARM in focus group discussions regarding transitional care. Discussions were analyzed by qualitative content analysis. Ethical approval was obtained. RESULTS: Sixteen participants (10 women) with a median age of 24 (19-47) years, born with mixed subtypes of ARM were included in gender-divided focus groups. Participants emphasized a need for improved knowledge of ARM, both among patients and adult care providers. Participants identified a need for support with coping strategies regarding challenging social- and intimate situations due to impaired bowel function. Participants pin-pointed well-functioning communication between the patient and the paediatric- and adult care providers as a key factor for a successful transitional process. Further, participants emphasized the importance of easy access to specialized adult healthcare when needed, suggested to be facilitated by appointed patient navigators. CONCLUSION: Adolescents and adults born with ARM identify improved knowledge of ARM, well-functioning communication and easy access to specialized adult care as key components of a successful transition.
OBJECTIVES: Transitional care for adolescents with congenital malformations, such as anorectal malformations (ARM), is described sparsely in the literature and referred to as being inadequate. In order to organize future successful healthcare structures, knowledge of patient-reported important aspects of transition is required. The aim of the study was therefore to explore the needs and expectations of transitional- and adult healthcare among adolescents and adults born with ARM. METHODS: Two tertiary paediatric surgical centres, in collaboration with two tertiary pelvic floor centres, in Sweden and Norway, conducted a qualitative study, involving adolescents and adults born with ARM in focus group discussions regarding transitional care. Discussions were analyzed by qualitative content analysis. Ethical approval was obtained. RESULTS: Sixteen participants (10 women) with a median age of 24 (19-47) years, born with mixed subtypes of ARM were included in gender-divided focus groups. Participants emphasized a need for improved knowledge of ARM, both among patients and adult care providers. Participants identified a need for support with coping strategies regarding challenging social- and intimate situations due to impaired bowel function. Participants pin-pointed well-functioning communication between the patient and the paediatric- and adult care providers as a key factor for a successful transitional process. Further, participants emphasized the importance of easy access to specialized adult healthcare when needed, suggested to be facilitated by appointed patient navigators. CONCLUSION: Adolescents and adults born with ARM identify improved knowledge of ARM, well-functioning communication and easy access to specialized adult care as key components of a successful transition.
Authors: M C Vargas; L A Wehrli; A Louiselle; J Ketzer; M L Reppucci; L Juddy-Glossy; V I Alaniz; D T Wilcox; D N Wood; A Peña; L De La Torre; A Bischoff Journal: Pediatr Surg Int Date: 2022-09-21 Impact factor: 2.003