Reaching adulthood with Hirschsprung's disease: Patient experiences and recommendations for transitional care

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Reaching adulthood with Hirschsprung's disease : Patient experiences and recommendations for transitional care. / Hoel, Anders T.; Tofft, Louise; Bjørnland, Kristin; Gjone, Helene; Teig, Catherine J.; Øresland, Tom; Stenström, Pernilla; Andersen, Marit H.

I: Journal of Pediatric Surgery, 2020.

Forskningsoutput: TidskriftsbidragArtikel i vetenskaplig tidskrift

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Hoel, Anders T. ; Tofft, Louise ; Bjørnland, Kristin ; Gjone, Helene ; Teig, Catherine J. ; Øresland, Tom ; Stenström, Pernilla ; Andersen, Marit H. / Reaching adulthood with Hirschsprung's disease : Patient experiences and recommendations for transitional care. I: Journal of Pediatric Surgery. 2020.

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TY - JOUR

T1 - Reaching adulthood with Hirschsprung's disease

T2 - Patient experiences and recommendations for transitional care

AU - Hoel, Anders T.

AU - Tofft, Louise

AU - Bjørnland, Kristin

AU - Gjone, Helene

AU - Teig, Catherine J.

AU - Øresland, Tom

AU - Stenström, Pernilla

AU - Andersen, Marit H.

PY - 2020

Y1 - 2020

N2 - Background/Purpose: The need for transitional care has gained increased focus in the treatment of patients with congenital colorectal disorders. We aimed to acquire in-depth knowledge about the experiences of adult patients with Hirschsprung's disease (HD) and their suggestions for transitional care. Methods: Binational study applying gender equal focus group interviews (FGI). Results: Seventeen (9 men) of 52 invited patients with median age 29 (19–43) years participated. Three themes evolved from the FGI. “Scarred body and soul” describes the somatic and psychosocial challenges the patients experienced and “limited health literacy on HD” refers to the patients' lack of HD knowledge. “Absent transition” depicts missing transitional care and the patients' inability to find adult HD specialists. The adult HD patients strongly recommended transitional care from early teens with focus on information about HD and establishment of a peer-to-peer program. They also emphasized the possibility of being referred to a pelvic floor center. Conclusions: HD negatively influences patients' somatic and psychosocial health in childhood, adolescence and adulthood. Adult HD patients strongly recommend transitional care from early teens and the possibility for referral to a center working with pelvic floor dysfunctions. Level of evidence: IV Type of research: Clinical

AB - Background/Purpose: The need for transitional care has gained increased focus in the treatment of patients with congenital colorectal disorders. We aimed to acquire in-depth knowledge about the experiences of adult patients with Hirschsprung's disease (HD) and their suggestions for transitional care. Methods: Binational study applying gender equal focus group interviews (FGI). Results: Seventeen (9 men) of 52 invited patients with median age 29 (19–43) years participated. Three themes evolved from the FGI. “Scarred body and soul” describes the somatic and psychosocial challenges the patients experienced and “limited health literacy on HD” refers to the patients' lack of HD knowledge. “Absent transition” depicts missing transitional care and the patients' inability to find adult HD specialists. The adult HD patients strongly recommended transitional care from early teens with focus on information about HD and establishment of a peer-to-peer program. They also emphasized the possibility of being referred to a pelvic floor center. Conclusions: HD negatively influences patients' somatic and psychosocial health in childhood, adolescence and adulthood. Adult HD patients strongly recommend transitional care from early teens and the possibility for referral to a center working with pelvic floor dysfunctions. Level of evidence: IV Type of research: Clinical

KW - Experiences

KW - Health literacy

KW - Hirschsprung

KW - In-depth interview

KW - Long-term results

KW - Transitional care

U2 - 10.1016/j.jpedsurg.2020.05.015

DO - 10.1016/j.jpedsurg.2020.05.015

M3 - Article

C2 - 32586610

AN - SCOPUS:85086736138

JO - Journal of Pediatric Surgery

JF - Journal of Pediatric Surgery

SN - 1531-5037

ER -