Health-related quality of life among children, adolescents, and adults with bladder exstrophy-epispadias complex: a systematic review of the literature and recommendations for future research.
Purpose: Bladder exstrophy-epispadias complex (BEEC) is a rare spectrum of genitourinary malformations. Children risk long-term urinary and genital dysfunctions. To achieve a comprehensive understanding, this study aimed to review the literature on generic and disease-specific health-related quality...
| Publicado en: | Quality of Life Research Vol. 28; no. 6; pp. 1389 - 1413 |
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| Autores principales: | , , , |
| Formato: | research Journal Article |
| Publicado: |
Springer Nature
Jun2019
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=136504677&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 136504677 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 09629343 GPQ jtl: Quality of Life Research issn: 09629343 maglogo: N pubinfo: dt: Jun2019 vid: 28 iid: 6 pid: 237 pub: Springer Nature place: New York, New York artinfo: ui: 136504677 136504677 NLM30725391 136504677 10.1007/s11136-019-02119-7 NLM30725391 136504677 ppf: 1389 ppct: 24 formats: fmt: – @attributes: type: T – @attributes: type: P tig: atl: Health-related quality of life among children, adolescents, and adults with bladder exstrophy-epispadias complex: a systematic review of the literature and recommendations for future research. aug: au: Dellenmark-Blom, Michaela Sjöström, Sofia Abrahamsson, Kate Holmdahl, Gundela affil: Department of Pediatric Surgery, The Queen Silvia Children's Hospital, Sahlgrenska University Hospital, 416 85, Gothenburg, Sweden sug: subj: Urinary Incontinence Psychosocial Factors Health Status Quality of Life Psychosocial Factors Bladder Exstrophy Psychosocial Factors Human Infant Child, Preschool Adolescence Middle Age Young Adult Female Mental Health Child Research Male Adult Meta Analysis Questionnaires Scales Infant: 1-23 months Child, Preschool: 2-5 years Adolescent: 13-18 years Middle Aged: 45-64 years Child: 6-12 years Adult: 19-44 years Female Male ab: Purpose: Bladder exstrophy-epispadias complex (BEEC) is a rare spectrum of genitourinary malformations. Children risk long-term urinary and genital dysfunctions. To achieve a comprehensive understanding, this study aimed to review the literature on generic and disease-specific health-related quality of life (HRQOL) in BEEC patients, and methodologies used.Methods: A literature search was conducted in Pubmed/CINAHL/Embase/PsycINFO/Cochrane, from inception to May 2018. A meta-analysis of HRQOL in BEEC patients compared to healthy references was performed.Results: Twenty-one articles (published 1994-2018), describing HRQOL of children and adolescents (n = 5) and adults only (n = 5), or integrated age populations (n = 11), were identified (median sample size 24, loss to follow-up 43%, response rate 84%). Overall HRQOL was reduced in BEEC patients compared to healthy references in 4/4 studies. Impaired physical or general health in BEEC patients has been described in 9 articles, diminished mental health in 11, restricted social health in 10, and sexual health/functioning or body perception impairments in 13 articles. Urinary incontinence was the most common factor related to worse HRQOL (12 studies). In six studies, HRQOL was better than healthy norms. In eligible studies (n = 5), the pooled estimate of the effect of BEEC indicated worse HRQOL for children and adults (0 > effect sizes < 0.5). Thirty-six HRQOL assessments were used, none developed and validated for BEEC.Conclusions: HRQOL in BEEC patients may be negatively impacted, particularly considering mental and social HRQOL. Sexual health/functioning or body perception impairments may be present in adolescents and adults. However, HRQOL is heterogeneously assessed and subsequent findings are differently reported. Additional research is warranted and can be improved. pubtype: Academic Journal doctype: research Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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