Health-Related Quality of Life in Patients with the Bladder Exstrophy-Epispadias Complex and Relationship to Incontinence and Sexual Factors: A Review of the Recent Literature

被引:4
作者
Holmdahl, Gundela [1 ,2 ]
Dellenmark-Blom, Michaela [2 ]
Nordenskjold, Agneta [1 ,3 ,4 ]
Sjostrom, Sofia [2 ]
机构
[1] Karolinska Univ Hosp, Astrid Lindgren Childrens Hosp, Dept Pediat Surg, Stockholm, Sweden
[2] Sahlgrenskas Univ Hosp, Dept Pediat Surg, Pediat Uronephrol Ctr, Queen Silvia Childrens Hosp,Inst Clin Sci, Gothenburg, Sweden
[3] Karolinska Inst, Dept Womens & Childrens Hlth, Stockholm, Sweden
[4] Karolinska Inst, Ctr Mol Med, Stockholm, Sweden
关键词
bladder exstrophy; epispadias; health-related quality of life; incontinence; sexual factors; MENTAL-HEALTH; SURVEY SF-36; URINARY; WOMEN; IMPACT; FORM; CONTINENCE; RECONSTRUCTION; INDIVIDUALS; ADOLESCENTS;
D O I
10.1055/s-0040-1713178
中图分类号
R72 [儿科学];
学科分类号
100202 ;
摘要
The bladder exstrophy-epispadia complex (BEEC) includes malformations with midline closing defects of the lower abdomen and external genitalia. Long-term consequences with urinary incontinence and sexual dysfunction, in spite of multiple surgical interventions, are common and expected to affect the patient's health-related quality of life (HRQOL). The extent and the predictive factors are, however, not known. New patient-reported outcome research is emerging, but valid and reliable condition-specific HRQOL are still missing. The aim of this review is to summarize and discuss the latest published reports (2015-2019) on HRQOL in patients with the BEEC and its relationship to incontinence and sexual factors.
引用
收藏
页码:251 / 260
页数:10
相关论文
共 54 条
  • [1] Experiences of Intimacy Among People With Bladder Exstrophy
    Anderson, Deborah L.
    Murray, Craig D.
    Hurrell, Ruth
    [J]. QUALITATIVE HEALTH RESEARCH, 2013, 23 (12) : 1600 - 1612
  • [2] ICIQ: A brief and robust measure for evaluating the symptoms and impact of urinary incontinence
    Avery, K
    Donovan, J
    Peters, TJ
    Shaw, C
    Gotoh, M
    Abrams, P
    [J]. NEUROUROLOGY AND URODYNAMICS, 2004, 23 (04) : 322 - 330
  • [3] Combined bladder neck, urethral and penile reconstruction in boys with the exstrophy-epispadias complex
    Baka-Jakubiak, M
    [J]. BJU INTERNATIONAL, 2000, 86 (04) : 513 - 518
  • [4] THE AMERICAN-UROLOGICAL-ASSOCIATION SYMPTOM INDEX FOR BENIGN PROSTATIC HYPERPLASIA
    BARRY, MJ
    FOWLER, FJ
    OLEARY, MP
    BRUSKEWITZ, RC
    HOLTGREWE, HL
    MEBUST, WK
    COCKETT, ATK
    BLAIVAS, JG
    WEIN, AJ
    [J]. JOURNAL OF UROLOGY, 1992, 148 (05) : 1549 - 1557
  • [5] Long-term sexual health outcomes in men with classic bladder exstrophy
    Baumgartner, Timothy S.
    Lue, Kathy M.
    Sirisreetreerux, Pokket
    Metzger, Sarita
    Everett, Ross G.
    Reddy, Sunil S.
    Young, Ezekiel
    Anele, Uzoma A.
    Alexander, Cameron E.
    Gandhi, Nilay M.
    Di Carlo, Heather N.
    Gearhart, John P.
    [J]. BJU INTERNATIONAL, 2017, 120 (03) : 422 - 427
  • [6] Patient-Reported Outcome and Observer-Reported Outcome Assessment in Rare Disease Clinical Trials: An ISPOR COA Emerging Good Practices Task Force Report
    Benjamin, Katy
    Vernon, Margaret K.
    Patrick, Donald L.
    Perfetto, Eleanor
    Nestler-Parr, Sandra
    Burke, Laurie
    [J]. VALUE IN HEALTH, 2017, 20 (07) : 838 - 855
  • [7] A scored form of the Bristol Female Lower Urinary Tract Symptoms questionnaire: Data from a randomized controlled trial of surgery for women with stress incontinence
    Brookes, ST
    Donovan, JL
    Wright, M
    Jackson, S
    Abrams, P
    [J]. AMERICAN JOURNAL OF OBSTETRICS AND GYNECOLOGY, 2004, 191 (01) : 73 - 82
  • [8] Quality of life in female patients with bladder exstrophy-epispadias complex: Long-term follow-up
    Bujons, Anna
    Lopategui, Diana M.
    Rodriguez, Nelly
    Centeno, Clara
    Caffaratti, Jorge
    Villavicencio, Humberto
    [J]. JOURNAL OF PEDIATRIC UROLOGY, 2016, 12 (04) : 210.e1 - 210.e6
  • [9] The concept of quality of life in medicine: its history and current relevance
    Bullinger, Monika
    [J]. ZEITSCHRIFT FUR EVIDENZ FORTBILDUNG UND QUALITAET IM GESUNDHEITSWESEN, 2014, 108 (2-3): : 97 - 103
  • [10] Cella D F, 1992, J Palliat Care, V8, P8