Bowel Function Score in Long-Term Follow-Up for Children with Hirschsprung Disease: OASIS-Holistic Care in Hirschsprung Disease Network Position Paper

被引:0
|
作者
Lindert, Judith [1 ,2 ]
Hoel, Anders Telle [3 ]
Schmiedeke, Eberhard [4 ]
Curry, Joe I. [2 ]
Loukogeorgakis, Stavros [2 ,5 ]
Amerstorfer, Eva [6 ]
机构
[1] Univ Hosp Rostock, Dept Paediat Surg, D-18057 Rostock, Germany
[2] Great Ormond St Hosp Sick Children, Dept Specialist Neonatal & Paediat Surg, Specialist Colorectal Serv, London WC1N 3BH, England
[3] Oslo Univ Hosp, Dept Pediat Surg, N-0372 Oslo, Norway
[4] Klinikum Bremen Mitte, Clin Paediat Surg & Paediat Urol, D-28205 Bremen, Germany
[5] UCL, UCL GOSH Inst Child Hlth, London WC1E 6BT, England
[6] Med Univ Graz, Dept Pediat & Adolescent Surg, A-8036 Graz, Austria
来源
CHILDREN-BASEL | 2024年 / 11卷 / 11期
关键词
Hirschsprung disease; continence score; scoring postoperative results; incontinence; bowel function; patient-reported outcome measurements (PROM); QUALITY-OF-LIFE; ANORECTAL MALFORMATION; PULL-THROUGH; OUTCOMES; INCONTINENCE; CONTINENCE; MANAGEMENT; CHILDHOOD; PATIENT;
D O I
10.3390/children11111284
中图分类号
R72 [儿科学];
学科分类号
100202 ;
摘要
Introduction: The assessment of bowel function in patients with Hirschsprung disease (HD) remains controversial, as several different bowel function scores are used in the literature and are therefore not suitable for reliable comparison. Conference Section: The OASIS-Holistic Care in Hirschsprung Disease Network Group addressed this issue and evaluated the most commonly used scores for their utility in HD patients. Scoping Review and Expert Group Consensus were performed. It was agreed that the ideal score for patients with Hirschsprung disease should be a comprehensive, validated score that allows reliable assessment of bowel function and continence, depicts changes according to management and natural history, and quantifies baseline parameters. This score should also enable comparisons of bowel function in patients born with HD worldwide. Concluding Remarks: The OASIS-Holistic Care in Hirschsprung Disease Network Group agreed that this ideal score does not yet exist and is therefore a future goal of the group. Meanwhile, clinicians should use a score for comparable, standardized, objective assessment, and the Rintala Score is suggested. Future developments may also lead to easily accessible patient-reported outcome measures and semi-automated dashboards that allow automated data extraction from electronic health records.
引用
收藏
页数:11
相关论文
共 50 条
  • [31] Long-term follow-up of Takayasu's disease
    Panja, M
    Kumar, S
    Sinha, DP
    Roy, S
    Kar, AK
    JOURNAL OF THE AMERICAN COLLEGE OF CARDIOLOGY, 1997, 29 (02) : 7614 - 7614
  • [32] LONG-TERM FOLLOW-UP IN CROHNS-DISEASE
    NORDGREN, SR
    FASTH, SB
    ORESLAND, TO
    HULTEN, LA
    SCANDINAVIAN JOURNAL OF GASTROENTEROLOGY, 1994, 29 (12) : 1122 - 1128
  • [33] PERTHES-DISEASE - A LONG-TERM FOLLOW-UP
    TEMPLETON, J
    GREEN, ADL
    ULSTER MEDICAL JOURNAL, 1983, 52 (02): : 125 - 130
  • [34] Long-term follow-up of patients with Kawasaki disease
    Takahashi, M
    Mason, WH
    PROGRESS IN PEDIATRIC CARDIOLOGY, 1997, 6 (03) : 227 - 236
  • [35] Long-term follow-up of inflammatory bowel disease: What do patients want?
    Thiagarajah, J. R.
    Neild, P.
    Pollock, R.
    Kang, J. Y.
    Poullis, A.
    GUT, 2008, 57 : A167 - A167
  • [36] LONG-TERM FOLLOW-UP OF CHILDREN WITH MIXED CONNECTIVE-TISSUE DISEASE
    MIER, R
    HASSON, N
    WOO, P
    ANSELL, B
    HALL, MA
    RENNEBOHM, R
    ARTHRITIS AND RHEUMATISM, 1993, 36 (09): : S260 - S260
  • [37] BEHCET DISEASE - LONG-TERM FOLLOW-UP OF 3 CHILDREN AND REVIEW OF THE LITERATURE
    RAKOVER, Y
    ADAR, H
    TAL, I
    LANG, Y
    KEDAR, A
    PEDIATRICS, 1989, 83 (06) : 986 - 992
  • [38] Long-term follow-up of 47 children with polycystic kidney disease (PKD)
    Andreeva, E.
    Savenkova, N.
    Larionova, V.
    PEDIATRIC NEPHROLOGY, 2007, 22 (09) : 1513 - 1513
  • [39] Transcranial doppler long-term follow-up in children with sickle cell disease
    Liguoro, I.
    Padayachee, S.
    Pelidis, M.
    Ndoro, S.
    Inusa, B.
    BRITISH JOURNAL OF HAEMATOLOGY, 2020, 189 : 147 - 148
  • [40] The impact of Down’s syndrome on the immediate and long-term outcomes of children with Hirschsprung’s disease
    Antonino Morabito
    Anupam Lall
    Sobbia Gull
    Amar Mohee
    Adrian Bianchi
    Pediatric Surgery International, 2006, 22 : 179 - 181