Portal de Periódicos da CAPES

BLADDER EXSTROPHY: PSYCHOLOGICAL IMPACT DURING CHILDHOOD

1999; Lippincott Williams & Wilkins; Volume: 162; Issue: 6 Linguagem: Inglês

10.1016/s0022-5347(05)68139-6

1527-3792

Karin Stjernqvist, Christina Clementson Kockum,

Pediatric Urology and Nephrology Studies

No AccessJournal of UrologyPEDIATRIC UROLOGY1 Dec 1999BLADDER EXSTROPHY: PSYCHOLOGICAL IMPACT DURING CHILDHOOD KARIN STJERNQVIST and CHRISTINA CLEMENTSON KOCKUM KARIN STJERNQVISTKARIN STJERNQVIST More articles by this author and CHRISTINA CLEMENTSON KOCKUMCHRISTINA CLEMENTSON KOCKUM More articles by this author View All Author Informationhttps://doi.org/10.1016/S0022-5347(05)68139-6AboutFull TextPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract Purpose: We describe the impact of bladder exstrophy on the behavior, self-esteem and quality of life of children as well as on the parents, and analyze the need for psychological intervention. Materials and Methods: All 7 boys and 8 girls 3 to 18 years old (median age 11) under treatment at a tertiary pediatric surgery clinic were included in our followup study. Medical and psychological evaluations were performed. Behavior was assessed using the semistructured Höök-Cederblad Child Behavior Interview and the Child Behavior Checklist questionnaire. Self-esteem was assessed by the self-rating I Think I Am questionnaire. Children and parents were interviewed separately. Quality of life was estimated using the Multiattribute Health Status Mark II classification system. Results: After repeat operations and hospitalization 10 children were dry, although 9 required catheterization. Four children had some behavioral problems, which were manifest in 2. All but 1 male adolescent had good or very good self-esteem. Quality of life was decreased in most cases due to limited self-care, although emotional problems were few. All mothers had experienced the birth as a traumatic event and 5 parents had had psychiatric symptoms. Conclusions: Self-esteem may be maintained despite multiple operations, urinary leakage and deviant genitalia but the abnormality had a great impact on children and on the lives of the families. Parents and children required individual intervention from a multidisciplinary team during different stages of childhood. References 1 : Bladder exstrophy in Sweden: a long-term follow-up study. Eur. J. Ped. Surg.1996; 6: 208. Crossref, Medline, Google Scholar 2 : Clinical approaches to families in early intervention. Sem. Perinatol.1989; 13: 513. Medline, Google Scholar 3 : Infants in Crisis: How Parents Cope With Newborn Intensive Care and its Aftermath. New York: Springer Verlag1991. Crossref, Google Scholar 4 : Stress, Appraisal and Coping. New York: Springer Verlag1984. Google Scholar 5 : Symtomlistan: en reviderad och förenklad metod för att möta problembeteenden hos barn. Forskning om barn och familj, 5. Lund. Sweden: Department of Child and Youth Psychiatry, Lund University1994. Google Scholar 6 : Östgötastudien: stressreaktioner och beteendestörningar hos barn på 80-talet i Östergötland. Rädda Barnens Rapport Serie [in Swedish]1991; . Google Scholar 7 : Intelligence and behavior in children born after in-vitro fertilization treatment. Human Repro.1996; 11: 2052. Crossref, Medline, Google Scholar 8 : Manual for the Child Behavior Check list/4-18 and 1991 Profile. Department of Psychiatry, University of Vermont Burlington, Vermont1991; . Google Scholar 9 Larsson, B.: Personal communication. 1997 Google Scholar 10 : “Jag Tycker jag är” (I Think I Am) Manual.. Stockholm: Psykologiförlaget AB1985. Google Scholar 11 : A comprehensive multiattribute system for classifying the health status of survivors of childhood cancer. J. Clin. Oncol.1992; 10: 923. Crossref, Medline, Google Scholar 12 : Self-perceived health status and health-related quality of life of extremely low-birth-weight infants at adolescence. J.A.M.A.1996; 276: 453. Crossref, Medline, Google Scholar 13 : 10-Year follow-up of very preterm infants <29 gestational weeks. Health, cognitive development, behavior and school achievement. Acta Paed.1999; 88: 557. Crossref, Medline, Google Scholar 14 : “Why me”: a depressive crisis at the age of nine in handicapped children. In: . Stockholm: Sven Jerring Foundation1983. Google Scholar 15 : Micturition habits and incontinence at age 17: reinvestigation of a cohort studied at age 7. Brit. J. Urol.1995; 76: 231. Crossref, Medline, Google Scholar 16 : Self-esteem before and after treatment in children with nocturnal enuresis and urinary incontinence. Scand. J. Urol. Nephrol.1997; 183: 79. Google Scholar 17 : Mental health and psychosocial functioning in adolescents with congenital heart disease. A comparison between adolescents born with severe heart defect and atrial septal defect. Acta Paed.1993; 82: 71. Crossref, Medline, Google Scholar 18 : Somatic function, mental health and psychosocial functioning in 22 adolescents with bladder exstrophy and epispadias. J. Urol.1998; 159: 1684. Link, Google Scholar 19 : Penile length in adulthood after exstrophy reconstruction. J. Urol.1997; 157: 999. Link, Google Scholar 20 : The outcome of patients with classic bladder exstrophy in adult life. J. Urol.1996; 155: 1251. Link, Google Scholar 21 : The long-term outcome in men with exstrophy/epispadias: sexual function and social integration. J. Urol.1996; 156: 822. Link, Google Scholar 22 : Outcome analysis of the psychosexual and socioeconomical development of adult patients born with bladder exstrophy. J. Urol.1994; 152: 1417. Link, Google Scholar 23 : The effects of peer ridicule on depression and self-image among adolescent females with Turner syndrome. J. Adolesc. Health1996; 19: 34. Crossref, Medline, Google Scholar 24 : Psychosexual adjustment of children and adolescents after different types of hypospadias surgery: a norm-related study. J. Urol.1995; 154: 1902. Link, Google Scholar 25 : Is my child normal yet? Correlates of vulnerability. Pediatrics1989; 83: 355. Medline, Google Scholar 26 : Close relationships in mothers of distressed and normal newborns: support, expectancy confirmation, and maternal well-being. J. Fam. Psychol.1991; 5: 93. Crossref, Google Scholar From the Department of Psychology, University of Lund, and Departments of Pediatrics and Pediatric Surgery, University Hospital, Lund, Sweden© 1999 by American Urological Association, Inc.FiguresReferencesRelatedDetailsCited by Mseddi M, Sellami S, Samet A, Mejdoub B, Rebai N and Hadjslimene M (2021) Mitrofanoff external continent urinary diversion in the management of bladder exstrophy-epispadias complex in adolescentsUrology Case Reports, 10.1016/j.eucr.2021.101727, VOL. 38, (101727), Online publication date: 1-Sep-2021. Raveendran L, Koyle M, Bagli D, Twardowski K, Cicci N, Ronen G, Sawin K and Szymanski K (2021) Integrative review and evaluation of quality of life related instruments in pediatric urologyJournal of Pediatric Urology, 10.1016/j.jpurol.2021.03.011, VOL. 17, NO. 4, (443.e1-443.e14), Online publication date: 1-Aug-2021. Pathak P, Ring J, Delfino K, Dynda D and Mathews R (2020) Complete primary repair of bladder exstrophy: a systematic reviewJournal of Pediatric Urology, 10.1016/j.jpurol.2020.01.004, VOL. 16, NO. 2, (149-153), Online publication date: 1-Apr-2020. Dellenmark-Blom M, Sjöström S, Abrahamsson K and Holmdahl G (2019) 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 researchQuality of Life Research, 10.1007/s11136-019-02119-7, VOL. 28, NO. 6, (1389-1412), Online publication date: 1-Jun-2019. Diseth T and Emblem R (2017) Long-term psychosocial consequences of surgical congenital malformationsSeminars in Pediatric Surgery, 10.1053/j.sempedsurg.2017.09.009, VOL. 26, NO. 5, (286-294), Online publication date: 1-Oct-2017. Giron A, Mello M, Carvalho P, Moscardi P, Lopes R and Srougi M (2017) One - staged reconstruction of bladder exstrophy in male patients: long - term follow-up outcomesInternational braz j urol, 10.1590/s1677-5538.ibju.2015.0581, VOL. 43, NO. 1, (155-162), Online publication date: 1-Feb-2017. Chen H (2017) Bladder Exstrophy Atlas of Genetic Diagnosis and Counseling, 10.1007/978-1-4939-2401-1_25, (289-294), . Chen H (2016) Bladder Exstrophy Atlas of Genetic Diagnosis and Counseling, 10.1007/978-1-4614-6430-3_25-3, (1-7), . Filce H and LaVergne L (2015) Absenteeism, Educational Plans, and Anxiety Among Children With Incontinence and Their ParentsJournal of School Health, 10.1111/josh.12245, VOL. 85, NO. 4, (241-250), Online publication date: 1-Apr-2015. Chen H (2015) Bladder Exstrophy Atlas of Genetic Diagnosis and Counseling, 10.1007/978-1-4614-6430-3_25-2, (1-7), . Filce H and LaVergne L (2013) The Impact of a 1-Week Residential Program on Anxiety in Adolescents With IncontinenceJournal of Wound, Ostomy & Continence Nursing, 10.1097/WON.0b013e31827e8465, VOL. 40, NO. 2, (185-192), Online publication date: 1-Mar-2013. (2012) Bladder Exstrophy Atlas of Genetic Diagnosis and Counseling, 10.1007/978-1-4614-1037-9_25, (227-231), . Lopes M, Ferraro A, Dória Filho U, Kuckzinski E and Koch V (2011) Quality of life of pediatric patients with lower urinary tract dysfunction and their caregiversPediatric Nephrology, 10.1007/s00467-010-1744-2, VOL. 26, NO. 4, (571-577), Online publication date: 1-Apr-2011. Wittmeyer V, Aubry E, Liard-Zmuda A, Grise P, Ravasse P, Ricard J, Biserte J and Besson R (2010) Quality of Life in Adults With Bladder Exstrophy-Epispadias ComplexJournal of Urology, VOL. 184, NO. 6, (2389-2394), Online publication date: 1-Dec-2010.Dodson J, Furth S, Yenokyan G, Alcorn K, Diener-West M, Wu A and Gearhart J (2010) Parent Perspectives of Health Related Quality of Life for Adolescents With Bladder Exstrophy-Epispadias as Measured by the Child Health Questionnaire-Parent Form 50™Journal of Urology, VOL. 184, NO. 4S, (1656-1661), Online publication date: 1-Oct-2010.Mednick L, Gargollo P, Oliva M, Grant R and Borer J (2009) Stress and Coping of Parents of Young Children Diagnosed With Bladder ExstrophyJournal of Urology, VOL. 181, NO. 3, (1312-1317), Online publication date: 1-Mar-2009.Gargollo P, Borer J, Diamond D, Hendren W, Rosoklija I, Grant R and Retik A (2008) Prospective Followup in Patients After Complete Primary Repair of Bladder ExstrophyJournal of Urology, VOL. 180, NO. 4S, (1665-1670), Online publication date: 1-Oct-2008. Schönbucher V, Landolt M, Gobet R and Weber D (2008) Health-Related Quality of Life and Psychological Adjustment of Children and Adolescents with HypospadiasThe Journal of Pediatrics, 10.1016/j.jpeds.2007.11.036, VOL. 152, NO. 6, (865-872), Online publication date: 1-Jun-2008. Wilson C, Pistrang N, Woodhouse C and Christie D (2007) The Psychosocial Impact of Bladder Exstrophy in AdolescenceJournal of Adolescent Health, 10.1016/j.jadohealth.2007.05.021, VOL. 41, NO. 5, (504-508), Online publication date: 1-Nov-2007. Gargollo P and Borer J (2007) Contemporary outcomes in bladder exstrophyCurrent Opinion in Urology, 10.1097/MOU.0b013e3281ddb32f, VOL. 17, NO. 4, (272-280), Online publication date: 1-Jul-2007. Twining P (2007) Urinary-tract abnormalities Textbook of Fetal Abnormalities, 10.1016/B978-0-443-07416-5.50018-6, (277-325), . Ludman L (2006) Psychological aspects of pediatric surgery Pediatric Surgery and Urology, 10.1017/CBO9780511545757.006, (54-64) LEE C, REUTTER H, GRAssER M, FISCH M and NOEKER M (2006) Gender-associated differences in the psychosocial and developmental outcome in patients affected with the bladder exstrophy-epispadias complexBJU International, 10.1111/j.1464-410X.2005.05910.x, VOL. 97, NO. 2, (349-353), Online publication date: 1-Feb-2006. Bladder Exstrophy Atlas of Genetic Diagnosis and Counseling, 10.1007/978-1-60327-161-5_21, (118-121) Wennström I, Berg U, Kornfält R and Rydén O (2007) Gender affects self-evaluation in children with cystic fibrosis and their healthy siblingsActa Paediatrica, 10.1111/j.1651-2227.2005.tb02094.x, VOL. 94, NO. 9, (1320-1326) EBERT A, SCHEUERING S, SCHOTT G and ROESCH W (2018) PSYCHOSOCIAL AND PSYCHOSEXUAL DEVELOPMENT IN CHILDHOOD AND ADOLESCENCE WITHIN THE EXSTROPHY-EPISPADIAS COMPLEXJournal of Urology, VOL. 174, NO. 3, (1094-1098), Online publication date: 1-Sep-2005. Meyer-Bahlburg H (2005) Gender Identity Outcome in Female-Raised 46,XY Persons with Penile Agenesis, Cloacal Exstrophy of the Bladder, or Penile AblationArchives of Sexual Behavior, 10.1007/s10508-005-4342-9, VOL. 34, NO. 4, (423-438), Online publication date: 1-Aug-2005. Reutter H, Lee C, Gr��er M and Noeker M (2005) Entwicklungsergebnis bei Blasenekstrophie und Epispadie aus PatientensichtSubjective developmental outcome in bladder exstrophy and epispadiasDer Urologe, Ausgabe A, 10.1007/s00120-004-0739-7, VOL. 44, NO. 1, (57-63), Online publication date: 1-Jan-2005. Robinson J and Abuhamad A (2000) ABDOMINAL WALL AND UMBILICAL CORD ANOMALIESClinics in Perinatology, 10.1016/S0095-5108(05)70059-2, VOL. 27, NO. 4, (947-978), Online publication date: 1-Dec-2000. Gauthier F (2000) Quoi de neuf en chirurgie infantile en 1999?Journal de Pédiatrie et de Puériculture, 10.1016/S0987-7983(00)80089-4, VOL. 13, NO. 4, (235-239), Online publication date: 1-Jun-2000. Volume 162Issue 6December 1999Page: 2125-2129 Advertisement Copyright & Permissions© 1999 by American Urological Association, Inc.Keywordsself conceptbladderoutcome assessment (health care)exstrophyMetrics Author Information KARIN STJERNQVIST More articles by this author CHRISTINA CLEMENTSON KOCKUM More articles by this author Expand All Advertisement PDF downloadLoading ...