Health related quality of life of children and adolescents with congenital adrenal hyperplasia in Brazil

Health and Quality of Life Outcomes

Volumn 12, Issue 1, 2014, Pages

  Gilban, Daniel L S ^a,b   Alves Junior, Paulo A G ^a,b   Beserra, Izabel C R ^a,b  

^a FEDERAL UNIVERSITY OF RIO DE JANEIRO   (Brazil)

^b Rua Tenente Marones de Gusmao 23/205 Copacabana ^*  (Brazil)

Author keywords

Children and adolescents; Congenital adrenal hyperplasia; Glucocorticoid; Quality of life

Indexed keywords

DEXAMETHASONE; HYDROCORTISONE; PREDNISOLONE; PREDNISONE;

ADOLESCENT; ARTICLE; BRAZIL; CHILD; CLINICAL ARTICLE; CONGENITAL ADRENAL HYPERPLASIA; CONTROLLED STUDY; FEMALE; HUMAN; MALE; PARENTAL ATTITUDE; QUALITY OF LIFE; REARING; SALT WASTING; SELF EVALUATION; STEROID 21 MONOOXYGENASE DEFICIENCY; CASE CONTROL STUDY; CROSS-SECTIONAL STUDY; HEALTH STATUS INDICATOR; PARENT; PATHOPHYSIOLOGY; PRESCHOOL CHILD; PSYCHOLOGY; QUESTIONNAIRE; SELF REPORT;

ADOLESCENT; ADRENAL HYPERPLASIA, CONGENITAL; BRAZIL; CASE-CONTROL STUDIES; CHILD; CHILD, PRESCHOOL; CROSS-SECTIONAL STUDIES; FEMALE; HEALTH STATUS INDICATORS; HUMANS; MALE; PARENTS; QUALITY OF LIFE; QUESTIONNAIRES; SELF REPORT;

EID: 84908176892     PISSN: None     EISSN: 14777525     Source Type: Journal    
DOI: 10.1186/s12955-014-0107-2     Document Type: Article

References (32)

1. Speiser PW, White PC. Congenital adrenal hyperplasia. N Engl J Med 2003, 349(8):776-788. 10.1056/NEJMra021561, 12930931.
2. Mnif MK, Kamoun M, Mnif F, Charfi N, Kallel N, Naceur BB, Rekik N, Mnif Z, Sfar MH, Sfar MT, Hachicha M, Keskes LA, Abib M. Long-term outcome of patients with congenital adrenal hyperplasia due to 21-hydroxylase deficiency. Am J Med Sci 2012, 344(5):363-373. 22270393.
3. Nordenstrom A. Adult women with 21- hydroxylase deficiency congenital adrenal hyperplasia, surgical and psychological aspects. Curr Opin Pediatr 2011, 23(4):436-442. 10.1097/MOP.0b013e32834810a4, 21670684.
4. Speiser PW, Azziz R, Baskin LS, Ghizzoni L, Hensle TW, Merke DP, Meyer-Bahlburg HF, Miller WL, Montori VM, Oberfield SE, Ritzen M, White PC. Congenital adrenal hyperplasia due to steroid 21-hydroxylase deficiency: an endocrine society clinical practice guideline. J Clin Endocrinol Metab 2010, 95(9):4133-4160. 10.1210/jc.2009-2631, 20823466.
5. Arlt W, Willis DS, Wild SH, Krone N, Doherty EJ, Hahner S, Han TS, Carroll PV, Conway GS, Rees DA, Stimson RH, Walker BR, Connell JMC, Ross MJ. Health status of adults with congenital adrenal hyperplasia: a cohort study of 203 patients. J Clin Endocrinol Metab 2010, 95(11):5110-5121. 10.1210/jc.2010-0917, 20719839.
6. Dauber A, Kellogg M, Majzoub JA. Monitoring of therapy in congenital adrenal hyperplasia. Clin Chem 2010, 56(8):1245-1251. 10.1373/clinchem.2010.146035, 20558634.
7. Wisniewski AB, Mazur T: 46XY 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 2009,. 567430. doi:10.1155/2009/567430.
8. Felce D, Perry J. Quality of life: it's definition and measurement. Res Dev Disabil 1995, 16(1):51-74. 10.1016/0891-4222(94)00028-8, 7701092.
9. Assumpção JR, F B, Kuczynski E. Qualidade de vida na infância e na adolescência. Qualidade de vida na infância e na adolescência: orientações para pediatras e profissionais da saúde mental 2010, 43-57. Artmed, Porto Alegre.
10. Clarke S, Eiser C: The measurement of health-related quality of life (QOL) in paediatric clinical trials: a systematic review.Health and Quality of Life Outcomes 2004, 66(2). doi:10.1186/1477-7525-2-66.
11. Turkel S, Pao M. Late consequences of pediatric chronic illness. Psychiatry Clinics of North America 2007, 30(4):819-835. 10.1016/j.psc.2007.07.009.
12. Prebianchi HB. Medidas de qualidade de vida para crianças: aspectos conceituais e metodológicos. Psicologia: Teoria e Prática 2003, 5(1):57-69.
13. Klatchoian DA, Len CA, Terreri MTRA, Silva M, Itamoto C, Ciconelli RM, Varni JW, Hilário MOE. Quality of life of children and adolescents from São Paulo: reliability and validity of the Brazilian version of the pediatric quality of life inventory version 4.0 generic core scales. Jornal de Pediatria (Rio de Janeiro) 2008, 84(8):308-315.
14. Machado CSM, Ruperto N, Silva CHM, Ferriani VPL, Roscoe I, Campos LMA, Oliveira SKF, Kiss MHB, Bica BERG, Sztajnbok F, Len CA, Melo-Gomes JA. The Brazilian version of the childhood health assessment questionnaire (CHAQ) and the child health questionnaire (CHQ). Clin Exp Rheumatol 2001, 19(s23):25-29.
15. Cohen-Kettenis PT. Psychosocial and psychosexual aspects of disorders of sex development. Best Practice and Research Clinical Endocrinology and Metabolism 2010, 24(2):325-334. 20541155.
16. Zainuddin AA, Grover SR, Shamsuddin K, Mahdy ZA: Research on quality of life in female patients with congenital adrenal hyperplasia and issues in developing nations.J Pediatr Adolesc Gynecol 2013. doi:10.1016/j.jpag.2012.08.004.
17. Bachelot A, Plu-Bureau G, Thibaud E, Laborde K, Pinto G, Samara D, Nihoul-Feketé C, Kuttenn F, Polak M, Touraine P. Long term outcome of patients with congenital adrenal hyperplasia due to 21-hydrxylase deficiency. Hormone Research in Pediatrics 2007, 67:268-276. 10.1159/000098017.
18. Finkielstain GP, Kim MS, Sinaii N, Nishitani M, Van Ryzin C, Hill SC, Reynolds JC, Hanna RM, Merke DP. Clinical characteristics of a cohort of 244 patients with congenital adrenal hyperplasia. J Clin Endocrinol Metab 2012, 97(12):4429-4438. 10.1210/jc.2012-2102, 22990093.
19. Berembaum SA, Korman BK, Duck SC, Resnick SM. Psychological adjustment in children and adults with congenital adrenal hyperplasia. J Pediatr 2004, 144(6):741-746.
20. Warne G, Grover S, Hutson J, Sinclair A, Metcalfe S, Northam E, Freeman J. A long term outcome study of intersex conditions. J Pediatr Endocrinol Metab 2005, 18(6):555-567. 10.1515/JPEM.2005.18.6.555, 16042323.
21. Frisén L, Nordenstrom A, Falhammar H, Filipsson H, Holmdahl G, Janson PO, Thorén M, Hagenfeldt K, Moller A, Nordenskjold A. Gender role behaviour, sexuality, and psychosocial adaptation in women with congenital adrenal hyperplasia due to CYP21A2 deficiency. J Clin Endocrinol Metab 2009, 94(9):3432-3439. 10.1210/jc.2009-0636, 19567521.
22. Johannsen TH, Ripa CPL, Mortensen EL, Main KM. Quality of life in 70 women with disorders of sex development. Eur J Endocrinol 2006, 155(6):877-885. 10.1530/eje.1.02294, 17132758.
23. Strandqvist A, Falhammar H, Lichtenstein P, Hirschberg AL, Wedell A, Norrby C, Nordenskjold A, Frisen L, Nordenstrom A. Suboptimal psychosocial outcomes in patients with congenital adrenal hyperplasia: epidemiological studies in a nonbiased national cohort in Sweden. Journal of Clinical Endocrinology and Mebology 2014, 99:1425-1432. 10.1210/jc.2013-3326.
24. Nermoen I, Husebye ES, Svartberg J, Lovas K. Subjective health status in men and women with congenital adrenal hyperplasia: a population- based survey in Norway. Eur J Endocrinol 2010, 163(3):453-459. 10.1530/EJE-10-0284, 20551222.
25. Reisch N, Hahner S, Bleicken B, Flade L, Gil FP, Loeffler M, Ventz M, Hinz A, Beuschlein F, Allolio B, Reincke M, Quinkler M. Quality of life is less impaired in adults with congenital adrenal hyperplasia because of 21-hydroxylase deficiency than in patients with primary adrenal insufficiency. Clin Endocrinol 2011, 74(2):166-173. 10.1111/j.1365-2265.2010.03920.x.
26. Falhammar H, Thorén M. Clinical outcomes in the management of congenital adrenal hyperplasia. Endocrine 2012, 41:355-373. 10.1007/s12020-011-9591-x, 22228497.
27. Reisch N, Arlt W, Krone N. Health problems in congenital adrenal hyperplasia due to 21-hydroxylase deficiency. Hormone Research in Pediatrics 2011, 76:73-85. 10.1159/000327794, 21597280.
28. Sanches SA, Wiegers TA, Otten BJ, Claahsen-Van Der Grinten HL: Physical, social and societal functioning of children with congenital adrenal hyperplasia (CAH) and their parents, in a Dutch population.Int J Pediatr Endocrinol 2012. doi:10.1186/1687-9856-2012-2.
29. Kirk KD, Fedele DA, Wolfe-Christensen C, Philips TM, Mazur T, Mullins LL, Chernausek SD, Wisniewski AB. Parenting characteristics of female caregivers of children affected by chronic endocrine conditions: a comparison between disorders of sex development and type 1 diabetes mellitus. J Pediatr Nurs 2011, 26(6):29-36. 10.1016/j.pedn.2010.10.005.
30. Pinhas-Hamiel O, Singer S, Pilpel N, Fradkin A, Modan D, Reichman B. Health-related quality of life among children and adolescents: associations with obesity. Int J Obes 2006, 30(2):267-272. 10.1038/sj.ijo.0803107.
31. Falhammar H, Nystrom HF, Thorén M: Quality of life, social situation, and sexual satisfaction, in adult males with congenital adrenal hyperplasia.Endocrine 2014. advance online publication. doi:10.1007/s12020-013-0161-2.
32. Jurgensen M, Lux A, Wien SB, Kleinemeier E, Hiort O, Thyen U: Health-related quality of life of children with disorders of sex development (DSD).European Journal of Pediatrics, advance online publication 2014. advance online publication. doi:10.1007/s00431-014-2264-z.