메뉴 건너뛰기




Volumn 173, Issue 7, 2014, Pages 893-903

Health-related quality of life in children with disorders of sex development (DSD)

Author keywords

Children; Congenital adrenal hyperplasia (CAH); Disorders of sex development (DSD); Health related quality of life (HRQOL)

Indexed keywords

ARTICLE; CHILD; CHILD PARENT RELATION; CHILDHOOD DISEASE; CONGENITAL ADRENAL HYPERPLASIA; DISORDER OF SEX DEVELOPMENT; FEMALE; FEMININITY; GENDER DYSPHORIA; GENDER IDENTITY; HUMAN; KINDL R QUESTIONNAIRE; MAJOR CLINICAL STUDY; MALE; MEDICAL CARE; PRIORITY JOURNAL; PSYCHOLOGICAL WELL BEING; PSYCHOSOCIAL CARE; QUALITY OF LIFE; QUESTIONNAIRE; SELF ESTEEM; SELF REPORT; SEX ROLE; SOCIAL ENVIRONMENT; WELLBEING; AUSTRALIA; GERMANY; PARENT; PSYCHOLOGY; SWITZERLAND;

EID: 84903815617     PISSN: 03406199     EISSN: 14321076     Source Type: Journal    
DOI: 10.1007/s00431-014-2264-z     Document Type: Article
Times cited : (40)

References (60)
  • 4
    • 0037341613 scopus 로고    scopus 로고
    • Effects on gender identity of prenatal androgens and genital appearance: Evidence from girls with congenital adrenal hyperplasia
    • DOI 10.1210/jc.2002-020782
    • Berenbaum SA, Bailey JM (2003) Effects on gender identity of prenatal androgens and genital appearance: evidence from girls with congenital adrenal hyperplasia. J Clin Endocrinol Metab 88:1102-1106 (Pubitemid 36337762)
    • (2003) Journal of Clinical Endocrinology and Metabolism , vol.88 , Issue.3 , pp. 1102-1106
    • Berenbaum, S.A.1    Bailey, J.M.2
  • 5
    • 34648812992 scopus 로고    scopus 로고
    • Reliability and validity of functional health status and health-related quality of life questionnaires in children with recurrent acute otitis media
    • DOI 10.1007/s11136-007-9242-0
    • Brouwer CN, Schilder AG, van Stel HF, Rovers MM, Veenhoven RH, Grobbee DE, Sanders EA, Maillé AR (2007) Reliability and validity of functional health status and health-related quality of life questionnaires in children with recurrent acute otitis media. Qual Life Res 16:1357-1373 (Pubitemid 47459882)
    • (2007) Quality of Life Research , vol.16 , Issue.8 , pp. 1357-1373
    • Brouwer, C.N.M.1    Schilder, A.G.M.2    Van Stel, H.F.3    Rovers, M.M.4    Veenhoven, R.H.5    Grobbee, D.E.6    Sanders, E.A.M.7    Maille, A.R.8
  • 7
    • 77956633970 scopus 로고    scopus 로고
    • Psychosexual aspects of disorders of sex development
    • Cohen-Kettenis P (2010) Psychosexual aspects of disorders of sex development. Best Pract Res Clin Endocrinol Metab 24:325-334
    • (2010) Best Pract Res Clin Endocrinol Metab , vol.24 , pp. 325-334
    • Cohen-Kettenis, P.1
  • 8
    • 60149091699 scopus 로고    scopus 로고
    • Results from a pediatric surgical centre justify early intervention in disorders of sex development
    • Crawford JM, Warne G, Grover S, Southwell BR, Hutson JM (2009) Results from a pediatric surgical centre justify early intervention in disorders of sex development. J Pediatr Surg 44:413-416
    • (2009) J Pediatr Surg , vol.44 , pp. 413-416
    • Crawford, J.M.1    Warne, G.2    Grover, S.3    Southwell, B.R.4    Hutson, J.M.5
  • 10
    • 38849102551 scopus 로고    scopus 로고
    • Sexual function and genital sensitivity following feminizing genitoplasty for congenital adrenal hyperplasia
    • Crouch NS, Liao LM, Woodhouse CR, Conway GS, Creighton SM (2008) Sexual function and genital sensitivity following feminizing genitoplasty for congenital adrenal hyperplasia. J Urol 179:634-638
    • (2008) J Urol , vol.179 , pp. 634-638
    • Crouch, N.S.1    Liao, L.M.2    Woodhouse, C.R.3    Conway, G.S.4    Creighton, S.M.5
  • 12
    • 22144443443 scopus 로고    scopus 로고
    • Gender dysphoria and gender change in chromosomal females with congenital adrenal hyperplasia
    • DOI 10.1007/s10508-005-4338-5
    • Dessens AB, Slijper FM, Drop SL (2005) Gender dysphoria and gender change in chromosomal females with congenital adrenal hyperplasia. Arch Sex Behav 34:389-397 (Pubitemid 40980272)
    • (2005) Archives of Sexual Behavior , vol.34 , Issue.4 , pp. 389-397
    • Dessens, A.B.1    Slijper, F.M.E.2    Drop, S.L.S.3
  • 13
    • 84906791391 scopus 로고    scopus 로고
    • Accessed 1 May 1012
    • Deutscher Ethikrat (2012) Stellungnahme Intersexualität. http://www.ethikrat.org/dateien/pdf/stellungnahme-intersexualitaet.pdf. Accessed 1 May 1012
    • (2012) Stellungnahme Intersexualität
  • 22
    • 18644377699 scopus 로고    scopus 로고
    • Consensus statement on 21-hydroxylase deficiency from The European Society for Paediatric Endocrinology and The Lawson Wilkins Pediatric Endocrine Society
    • Joint ESPE/LWPES CAH working group
    • Joint ESPE/LWPES CAH working group (2002) Consensus statement on 21-hydroxylase deficiency from The European Society for Paediatric Endocrinology and The Lawson Wilkins Pediatric Endocrine Society. Horm Res 58:188-195
    • (2002) Horm Res , vol.58 , pp. 188-195
  • 23
    • 70350509374 scopus 로고    scopus 로고
    • Early hypospadias surgery may lead to a better long-term psychosexual outcome
    • Jones BC, O'Brien M, Chase J, Southwell BR, Hutson JM (2009) Early hypospadias surgery may lead to a better long-term psychosexual outcome. J Urol 182:1744-1749
    • (2009) J Urol , vol.182 , pp. 1744-1749
    • Jones, B.C.1    O'Brien, M.2    Chase, J.3    Southwell, B.R.4    Hutson, J.M.5
  • 24
    • 33745952804 scopus 로고    scopus 로고
    • "Any decision is better than none" decision-making about sex of rearing for siblings with 17ß-hydroxysteroid-dehydrogenase-3 deficiency
    • Jürgensen M, Hampel E, Hiort O, Thyen U (2006) "Any decision is better than none" decision-making about sex of rearing for siblings with 17ß-hydroxysteroid-dehydrogenase-3 deficiency. Arch Sex Behav 35:358-370
    • (2006) Arch Sex Behav , vol.35 , pp. 358-370
    • Jürgensen, M.1    Hampel, E.2    Hiort, O.3    Thyen, U.4
  • 25
    • 77954530672 scopus 로고    scopus 로고
    • Psychosexual development in children with disorder of sex development (DSD) - results from the German clinical evaluation study
    • DSD Network Working Group
    • Jürgensen M, Kleinemeier E, Lux A, Steensma TD, Cohen-Kettenis PT, Hiort O, Thyen U, DSD Network Working Group (2010) Psychosexual development in children with disorder of sex development (DSD) - results from the German clinical evaluation study. J Pediatr Endocrinol Metab 23:565-578
    • (2010) J Pediatr Endocrinol Metab , vol.23 , pp. 565-578
    • Jürgensen, M.1    Kleinemeier, E.2    Lux, A.3    Steensma, T.D.4    Cohen-Kettenis, P.T.5    Hiort, O.6    Thyen, U.7
  • 26
    • 84887084974 scopus 로고    scopus 로고
    • Psychosexual development in adolescents and adults with disorders of sex development-results from the German clinical evaluation study
    • The DSD Network Working Group doi:10.1111/j.1743-6109.2012.02751
    • Jürgensen M, Kleinemeier E, Lux A, Steensma TD, Cohen-Kettenis PT, Hiort O, Thyen U, Köhler B, The DSD Network Working Group (2012) Psychosexual development in adolescents and adults with disorders of sex development-results from the German clinical evaluation study. J Sex Med. doi:10.1111/j.1743-6109.2012.02751
    • (2012) J Sex Med
    • Jürgensen, M.1    Kleinemeier, E.2    Lux, A.3    Steensma, T.D.4    Cohen-Kettenis, P.T.5    Hiort, O.6    Thyen, U.7    Köhler, B.8
  • 27
    • 78049251776 scopus 로고    scopus 로고
    • Psychological adjustment and sexual development of adolescents with disorders of sex development
    • Disorders of Sex Development Network Working Group
    • Kleinemeier E, Jürgensen M, Lux A, Widenka PM, Thyen U, Disorders of Sex Development Network Working Group (2010) Psychological adjustment and sexual development of adolescents with disorders of sex development. J Adolesc Health 47:463-471
    • (2010) J Adolesc Health , vol.47 , pp. 463-471
    • Kleinemeier, E.1    Jürgensen, M.2    Lux, A.3    Widenka, P.M.4    Thyen, U.5
  • 29
    • 0029153911 scopus 로고
    • The quality of life in adult female patients with congenital adrenal hyperplasia: A comprehensive study of the impact of genital malformations and chronic disease on female patient's life
    • Kuhnle U, Bullinger M, Schwarz HP (1995) The quality of life in adult female patients with congenital adrenal hyperplasia: a comprehensive study of the impact of genital malformations and chronic disease on female patient's life. Eur J Pediatr 154:708-716
    • (1995) Eur J Pediatr , vol.154 , pp. 708-716
    • Kuhnle, U.1    Bullinger, M.2    Schwarz, H.P.3
  • 30
    • 33748439007 scopus 로고    scopus 로고
    • Consensus statement on management of intersex disorders. International consensus conference on intersex
    • Lee P, Houk C, Ahmed S, Hughes I (2006) Consensus statement on management of intersex disorders. International consensus conference on intersex. Pediatrics 118:488-500
    • (2006) Pediatrics , vol.118 , pp. 488-500
    • Lee, P.1    Houk, C.2    Ahmed, S.3    Hughes, I.4
  • 31
    • 65549123691 scopus 로고    scopus 로고
    • Clinical evaluation study of the German network of disorders of sex development (DSD)/intersexuality: Study design, description of the study population, and data quality
    • DSD Network Working Group
    • Lux A, Kropf S, Kleinemeier E, Jürgensen M, Thyen U, DSD Network Working Group (2009) Clinical evaluation study of the German network of disorders of sex development (DSD)/intersexuality: study design, description of the study population, and data quality. BMC Public Health 9:110
    • (2009) BMC Public Health , vol.9 , pp. 110
    • Lux, A.1    Kropf, S.2    Kleinemeier, E.3    Jürgensen, M.4    Thyen, U.5
  • 32
    • 84903817552 scopus 로고
    • Gender-related assessment of childhood play
    • Meyer-Bahlburg HF (1994) Gender-related assessment of childhood play. J Abnorm Child Psych 33:97-104
    • (1994) J Abnorm Child Psych , vol.33 , pp. 97-104
    • Meyer-Bahlburg, H.F.1
  • 33
    • 84883494692 scopus 로고    scopus 로고
    • Sex steroids and variants of gender identity
    • Meyer-Bahlburg HF (2013) Sex steroids and variants of gender identity. Endocrionol Metab Clin Am 42:435-452
    • (2013) Endocrionol Metab Clin Am , vol.42 , pp. 435-452
    • Meyer-Bahlburg, H.F.1
  • 35
    • 38349175985 scopus 로고    scopus 로고
    • Sexual orientation in women with classical or non-classical congenital adrenal hyperplasia as a function of degree of prenatal androgen excess
    • Meyer-Bahlburg HF, Dolezal C, Baker SW, New MI (2008) Sexual orientation in women with classical or non-classical congenital adrenal hyperplasia as a function of degree of prenatal androgen excess. Arch Sex Behav 37:85-99
    • (2008) Arch Sex Behav , vol.37 , pp. 85-99
    • Meyer-Bahlburg, H.F.1    Dolezal, C.2    Baker, S.W.3    New, M.I.4
  • 36
    • 84864936859 scopus 로고    scopus 로고
    • Developing a multidisciplinary team for disorders of sex development: Planning, implementation, and operation
    • doi:10.1155/2012/604135
    • Moran ME, Karkazis K (2012) Developing a multidisciplinary team for disorders of sex development: planning, implementation, and operation. Adv Urol. doi:10.1155/2012/604135
    • (2012) Adv Urol
    • Moran, M.E.1    Karkazis, K.2
  • 37
    • 77956272026 scopus 로고    scopus 로고
    • Subjective health status in men and women with congenital adrenal hyperplasia: A population-based survey in Norway
    • Nermoen I, Husebye ES, Svartberg J, Løvås K (2010) Subjective health status in men and women with congenital adrenal hyperplasia: a population-based survey in Norway. Eur J Endocrinol 163:453-459
    • (2010) Eur J Endocrinol , vol.163 , pp. 453-459
    • Nermoen, I.1    Husebye, E.S.2    Svartberg, J.3    Løvås, K.4
  • 39
    • 79960840960 scopus 로고    scopus 로고
    • Adult women with 21-hydroxylase deficient congenital adrenal hyperplasia, surgical and psychological aspects
    • Nordenström A (2011) Adult women with 21-hydroxylase deficient congenital adrenal hyperplasia, surgical and psychological aspects. Curr Opin Pediatr 23:436-442
    • (2011) Curr Opin Pediatr , vol.23 , pp. 436-442
    • Nordenström, A.1
  • 40
    • 80052910861 scopus 로고    scopus 로고
    • Current concepts in disorders of sexual development
    • Öçal G (2011) Current concepts in disorders of sexual development. J Clin Res Ped Endo 3:105-114
    • (2011) J Clin Res Ped Endo , vol.3 , pp. 105-114
    • Öçal, G.1
  • 41
    • 52449096172 scopus 로고    scopus 로고
    • Evidence-based assessment of health-related quality of life and functional impairment in pediatric psychology
    • Palermo TM, Long AC, Lewandowski AS, Drotar D, Quittner AL, Walker LS (2008) Evidence-based assessment of health-related quality of life and functional impairment in pediatric psychology. J Pediatr Psychol 33:983-996
    • (2008) J Pediatr Psychol , vol.33 , pp. 983-996
    • Palermo, T.M.1    Long, A.C.2    Lewandowski, A.S.3    Drotar, D.4    Quittner, A.L.5    Walker, L.S.6
  • 42
    • 33645031998 scopus 로고    scopus 로고
    • The revised KINDL-R: Final results on reliability, validity and responsiveness of a modular HRQOL instrument for children and adolescents
    • Ravens-Sieberer U (2001) The revised KINDL-R: final results on reliability, validity and responsiveness of a modular HRQOL instrument for children and adolescents. Qual Life Res 10:199
    • (2001) Qual Life Res , vol.10 , pp. 199
    • Ravens-Sieberer, U.1
  • 43
    • 33845418975 scopus 로고    scopus 로고
    • Generic health-related quality-of-life assessment in children and adolescents: Methodological considerations
    • DOI 10.2165/00019053-200624120-00005
    • Ravens-Sieberer U, Erhart M, Wille N, Wetzel R, Nickel J, Bullinger M (2006) Generic health-related quality-of-life assessment in children and adolescents. Pharmacoeconomics 24:1199-1220 (Pubitemid 44901676)
    • (2006) PharmacoEconomics , vol.24 , Issue.12 , pp. 1199-1220
    • Ravens-Sieberer, U.1    Erhart, M.2    Wille, N.3    Wetzel, R.4    Nickel, J.5    Bullinger, M.6
  • 45
    • 34250209169 scopus 로고    scopus 로고
    • Health-related quality of life of children and adolescents in Germany. Norm data from the German health interview and examination survey (KiGGS)
    • Ravens-Sieberer U, Ellert U, Erhart M (2007) Health-related quality of life of children and adolescents in Germany. Norm data from the German health interview and examination survey (KiGGS). Bundesgesundheitsblatt 50:810-818
    • (2007) Bundesgesundheitsblatt , vol.50 , pp. 810-818
    • Ravens-Sieberer, U.1    Ellert, U.2    Erhart, M.3
  • 46
  • 47
    • 84888395932 scopus 로고    scopus 로고
    • Physical, social and societal functioning of children with congenital adrenal hyperplasia (CAH) and their parents, in a Dutch population
    • Accessed 30 Jul 2013
    • Sanches SA, Wiegers TA, Otten BJ, Claahsen-van der Grinten HL (2012) Physical, social and societal functioning of children with congenital adrenal hyperplasia (CAH) and their parents, in a Dutch population. Int J Pediatr Endocrinol 2. http://www.ijpeonline.com/content/2012/1/2. Accessed 30 Jul 2013
    • (2012) Int J Pediatr Endocrinol , vol.2
    • Sanches, S.A.1    Wiegers, T.A.2    Otten, B.J.3    Claahsen-Van Der Grinten, H.L.4
  • 48
    • 84867001695 scopus 로고    scopus 로고
    • Psychological aspects of the treatment of patients with disorders of sex development
    • Sandberg DE, Gardner M, Cohen-Kettenis PT (2012) Psychological aspects of the treatment of patients with disorders of sex development. Semin Reprod Med 30:443-452
    • (2012) Semin Reprod Med , vol.30 , pp. 443-452
    • Sandberg, D.E.1    Gardner, M.2    Cohen-Kettenis, P.T.3
  • 49
    • 84903819017 scopus 로고    scopus 로고
    • A noncategorical approach to the psychosocial care of persons with DSD and their families
    • Kreukels BP, Steensma TD, de Vries AL (eds) Springer, Dodrecht
    • Sandberg DE, Mazur M (2014) A noncategorical approach to the psychosocial care of persons with DSD and their families. In: Kreukels BP, Steensma TD, de Vries AL (eds) Gender dysphoria and disorders of sex development. Progress in care and knowledge, 1st edn. Springer, Dodrecht, pp 93-114
    • (2014) Gender Dysphoria and Disorders of Sex Development. Progress in Care and Knowledge, 1st Edn. , pp. 93-114
    • Sandberg, D.E.1    Mazur, M.2
  • 50
    • 43549115041 scopus 로고    scopus 로고
    • Health-related quality of life and psychological adjustment of children and adolescents with hypospadias
    • Schönbucher VB, Landolt MA, Gobet R, Weber DM (2008) Health-related quality of life and psychological adjustment of children and adolescents with hypospadias. Pediatrics 152:865-872
    • (2008) Pediatrics , vol.152 , pp. 865-872
    • Schönbucher, V.B.1    Landolt, M.A.2    Gobet, R.3    Weber, D.M.4
  • 51
    • 77951891305 scopus 로고    scopus 로고
    • Sexual quality of life of individuals with disorders of sex development and a 46, XY karyotype: A review of international research
    • Schönbucher V, Schweizer K, Richter-Appelt H (2010) Sexual quality of life of individuals with disorders of sex development and a 46, XY karyotype: a review of international research. J Sex Marital Ther 36:193-215
    • (2010) J Sex Marital Ther , vol.36 , pp. 193-215
    • Schönbucher, V.1    Schweizer, K.2    Richter-Appelt, H.3
  • 53
    • 84864414518 scopus 로고    scopus 로고
    • Congenital adrenal hyperplasia: Classification of studies employing psychological endpoints
    • Stout SA, Litvak M, Robbins NM, Sandberg DE (2010) Congenital adrenal hyperplasia: classification of studies employing psychological endpoints. Int J Pediatr Endocrinol 2010:191520
    • (2010) Int J Pediatr Endocrinol , vol.2010 , pp. 191520
    • Stout, S.A.1    Litvak, M.2    Robbins, N.M.3    Sandberg, D.E.4
  • 54
    • 84864931484 scopus 로고    scopus 로고
    • DSD and professionalism from a multilateral view: Supplementing the consensus statement on the basis of a qualitative survey
    • doi:10.1155/2012/185787
    • Streuli JC, Köhler B, Werner-Rosen K, Mitchell C (2012) DSD and professionalism from a multilateral view: supplementing the consensus statement on the basis of a qualitative survey. Adv Urol 12: 185787. doi:10.1155/2012/ 185787
    • (2012) Adv Urol , vol.12 , pp. 185787
    • Streuli, J.C.1    Köhler, B.2    Werner-Rosen, K.3    Mitchell, C.4
  • 57
    • 77952095552 scopus 로고    scopus 로고
    • Ethical principles and recommendations for the medical management of differences of sex development (DSD)/intersex in children and adolescents
    • Wiesemann C, Ude-Koeller S, Sinnecker GH, Thyen U (2010) Ethical principles and recommendations for the medical management of differences of sex development (DSD)/intersex in children and adolescents. Eur J Pediatr 169:671-679
    • (2010) Eur J Pediatr , vol.169 , pp. 671-679
    • Wiesemann, C.1    Ude-Koeller, S.2    Sinnecker, G.H.3    Thyen, U.4
  • 58
    • 77956646380 scopus 로고    scopus 로고
    • 46, XY DSD with female or ambiguous external genitalia at birth due to androgen insensitivity syndrome, 5α-reductase-2 deficiency, or 17β-hydroxysteroid dehydrogenase deficiency: A review of quality of life outcomes
    • doi:10.1155/2009/567430
    • Wisniewski AB, Mazur T (2009) 46, XY DSD with female or ambiguous external genitalia at birth due to androgen insensitivity syndrome, 5α-reductase-2 deficiency, or 17β-hydroxysteroid dehydrogenase deficiency: a review of quality of life outcomes. Int J Pediatr Endocrinol. doi:10.1155/2009/567430
    • (2009) Int J Pediatr Endocrinol
    • Wisniewski, A.B.1    Mazur, T.2
  • 59
    • 84903819266 scopus 로고    scopus 로고
    • Gender development in 46,XY DSD: Influences of chromosomes, hormones, and interactions with parents and healthcare professionals
    • doi:10.6064/2012/834967
    • Wisniewski AB (2012) Gender development in 46,XY DSD: influences of chromosomes, hormones, and interactions with parents and healthcare professionals. Scientifica. doi:10.6064/2012/834967
    • (2012) Scientifica
    • Wisniewski, A.B.1


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.