Long term psychological outcome for women with congenital adrenal hyperplasia: cross sectional survey
1 Department of Mental Health, St George's Hospital Medical School, University of London, London SW17 0RE,2 Department of Endocrinology, The Middlesex Hospital, London W1T 3AA
Introduction
Management of conditions associated with intersex, such as congenital adrenal hyperplasia, is controversial. A recent editorial in the BMJ called for long term studies of outcome.1 Females (genotype XX) with congenital adrenal hyperplasia are born with ambiguous genitalia, have feminising genitoplasty soon after birth, and often have repeated genital surgery and genital examinations in adolescence. This has raised fears that the condition and its management adversely affect psychosexual development or psychosocial adjustment.2 The "serious deficiency of any evidence base" on long term outcome prompted us to investigate the hypothesis that psychiatric morbidity is increased and that social and psychological adjustment is impaired in women with congenital adrenal hyperplasia.1
, 百拇医药
Participants, methods, and results
We did a cross sectional study of a clinic based sample of women with congenital adrenal hyperplasia. All were genetically female, some had feminising genitoplasty soon after birth, and all were raised as female. We recruited 18 sequential female patients (aged 18-36) with congenital adrenal hyperplasia from an endocrinology clinic at the Middlesex Hospital, London, in 1997-8. We assessed participants with validated structured interviews (the Eating Disorder Examination, 12th edition, and the Structured Clinical Interview for DMS-IV-R (Diagnostic and Statistical Manual of Mental Disorders, fourth edition, revised)) and questionnaires (the General Health Questionnaire 30, the modified Social Adjustment Scale,3 and Rosenberg's Self Esteem Inventory). All patients approached agreed to participate (table).4
, http://www.100md.com
Psychiatric morbidity as defined in DSM-IV and psychosocial function in 18 women with congenital adrenal hyperplasia compared with normative data
Two participants met diagnostic criteria for past mood disorder, five for past anxiety disorder, and one for past alcohol misuse. General health questionnaire scores were consistent with these findings, with a sensitivity of 100% and specificity of 88% for detection of depression. Social adjustment scores fell within the normal range for all role areas examined (table), and self esteem scores (mean 4.83, standard deviation 4.57) were above average (possible range -15 to +15).
, 百拇医药
No women met DSM-IV criteria for an eating disorder. Reflecting eating behaviours and attitudes, Eating Disorder Examination scores were comparable to normative data on subscales of restraint (0.70, 0.87 v 0.79, 0.97), shape concern (1.17, 0.96 v 1.14, 0.98), and weight concern (1.02, 1.28 v 1.00, 0.87), but eating concern was raised (0.72, 0.60 v 0.20, 0.51).
Only four participants rated themselves as sexually active, of whom two rated nil sexual enjoyment. Two participants categorised themselves as homosexual and two as bisexual, and sexual orientation was not associated with differences in any measure of psychosocial adjustment.
, 百拇医药
Comment
Women with congenital adrenal hyperplasia are psychologically well adjusted and do not show substantially increased psychiatric disorder or deficits of social adjustment compared with population data. Low levels of sexual activity and higher levels of non-heterosexual orientation are indicated, although legitimate normative data is lacking. Levels of disordered eating are not significantly different from population norms, despite increased exposure to sociocultural risk factors for eating disorders, though this may reflect a type II error.
, 百拇医药
Limitations of the study include the small sample size and the lack of a control group, which would have the same stresses as the congenital adrenal hyperplasia group but lack the stigmata of the illness. As such a control group does not exist, a descriptive comparison was made with the general population.
Although a previous study of childhood psychiatric morbidity in intersex people found increased prevalence of mental disorder,5 and accepting that some individuals with congenital adrenal hyperplasia may struggle to adapt, we conclude that the women with congenital adrenal hyperplasia in our small study are psychologically robust. Future studies must consider factors contributing to good psychological outcome, including timing of surgery and communication with parents and patients.
, http://www.100md.com
What is already known on this topic
Intersex children may have increased prevalence of psychiatric morbidity; research on adult psychological outcomes is limited despite fears that the condition may adversely affect psychosocial adjustment
What this study adds
Most women with congenital adrenal hyperplasia have good long term psychological outcome, with no dramatic increase in psychological morbidity, good social adjustment, and no deficit in self esteem
, http://www.100md.com
This article was posted on bmj.com on 26 January 2005: http://bmj.com/cgi/doi/10.1136/bmj.38334.427361.D3
Contributors: JFM, JHL, and GC originated and designed the study. JFM collected the data. JFM and HM analysed and interpreted the data and drafted the manuscript. GC, JHL, and JFM critically revised the manuscript. JHL supervised the study. JFM is guarantor.
Funding: No additional funding.
, 百拇医药 Ethical approval: Research ethics committee for the Central Middlesex Hospital.
References
Creighton S, Minto C. Managing intersex. BMJ 2001;323: 1264-5.
Meyer-Bahlburg HFL. Gender and sexuality in classic congenital adrenal hyperplasia. Endocrinol Metab Clin North Am 2001;30: 155-71,VIII.
Cooper P, Osborn M, Gath D, Feggetter G. Evaluation of a modified selfreport measure of social adjustment. BJPsych 1992;141: 68-75.
, 百拇医药
Kessler RC, McGonagle KA, Zhao S, Nelson CB, Hughes M, Eshleman S, et al. Lifetime and 12-month prevalence of DSM-III-R psychiatric disorders in the United States: results from the national comorbidity survey. Arch Gen Psychiatry 1994;51: 8-19.
Slijper FME, Drop SL, Molenaar JC, de Muinck Keizer-Schrama MD. Long term psychological evaluation of intersex children. Arch Sex Behav 1998;27: 125-45., 百拇医药(John F Morgan, Helen Murp)
Introduction
Management of conditions associated with intersex, such as congenital adrenal hyperplasia, is controversial. A recent editorial in the BMJ called for long term studies of outcome.1 Females (genotype XX) with congenital adrenal hyperplasia are born with ambiguous genitalia, have feminising genitoplasty soon after birth, and often have repeated genital surgery and genital examinations in adolescence. This has raised fears that the condition and its management adversely affect psychosexual development or psychosocial adjustment.2 The "serious deficiency of any evidence base" on long term outcome prompted us to investigate the hypothesis that psychiatric morbidity is increased and that social and psychological adjustment is impaired in women with congenital adrenal hyperplasia.1
, 百拇医药
Participants, methods, and results
We did a cross sectional study of a clinic based sample of women with congenital adrenal hyperplasia. All were genetically female, some had feminising genitoplasty soon after birth, and all were raised as female. We recruited 18 sequential female patients (aged 18-36) with congenital adrenal hyperplasia from an endocrinology clinic at the Middlesex Hospital, London, in 1997-8. We assessed participants with validated structured interviews (the Eating Disorder Examination, 12th edition, and the Structured Clinical Interview for DMS-IV-R (Diagnostic and Statistical Manual of Mental Disorders, fourth edition, revised)) and questionnaires (the General Health Questionnaire 30, the modified Social Adjustment Scale,3 and Rosenberg's Self Esteem Inventory). All patients approached agreed to participate (table).4
, http://www.100md.com
Psychiatric morbidity as defined in DSM-IV and psychosocial function in 18 women with congenital adrenal hyperplasia compared with normative data
Two participants met diagnostic criteria for past mood disorder, five for past anxiety disorder, and one for past alcohol misuse. General health questionnaire scores were consistent with these findings, with a sensitivity of 100% and specificity of 88% for detection of depression. Social adjustment scores fell within the normal range for all role areas examined (table), and self esteem scores (mean 4.83, standard deviation 4.57) were above average (possible range -15 to +15).
, 百拇医药
No women met DSM-IV criteria for an eating disorder. Reflecting eating behaviours and attitudes, Eating Disorder Examination scores were comparable to normative data on subscales of restraint (0.70, 0.87 v 0.79, 0.97), shape concern (1.17, 0.96 v 1.14, 0.98), and weight concern (1.02, 1.28 v 1.00, 0.87), but eating concern was raised (0.72, 0.60 v 0.20, 0.51).
Only four participants rated themselves as sexually active, of whom two rated nil sexual enjoyment. Two participants categorised themselves as homosexual and two as bisexual, and sexual orientation was not associated with differences in any measure of psychosocial adjustment.
, 百拇医药
Comment
Women with congenital adrenal hyperplasia are psychologically well adjusted and do not show substantially increased psychiatric disorder or deficits of social adjustment compared with population data. Low levels of sexual activity and higher levels of non-heterosexual orientation are indicated, although legitimate normative data is lacking. Levels of disordered eating are not significantly different from population norms, despite increased exposure to sociocultural risk factors for eating disorders, though this may reflect a type II error.
, 百拇医药
Limitations of the study include the small sample size and the lack of a control group, which would have the same stresses as the congenital adrenal hyperplasia group but lack the stigmata of the illness. As such a control group does not exist, a descriptive comparison was made with the general population.
Although a previous study of childhood psychiatric morbidity in intersex people found increased prevalence of mental disorder,5 and accepting that some individuals with congenital adrenal hyperplasia may struggle to adapt, we conclude that the women with congenital adrenal hyperplasia in our small study are psychologically robust. Future studies must consider factors contributing to good psychological outcome, including timing of surgery and communication with parents and patients.
, http://www.100md.com
What is already known on this topic
Intersex children may have increased prevalence of psychiatric morbidity; research on adult psychological outcomes is limited despite fears that the condition may adversely affect psychosocial adjustment
What this study adds
Most women with congenital adrenal hyperplasia have good long term psychological outcome, with no dramatic increase in psychological morbidity, good social adjustment, and no deficit in self esteem
, http://www.100md.com
This article was posted on bmj.com on 26 January 2005: http://bmj.com/cgi/doi/10.1136/bmj.38334.427361.D3
Contributors: JFM, JHL, and GC originated and designed the study. JFM collected the data. JFM and HM analysed and interpreted the data and drafted the manuscript. GC, JHL, and JFM critically revised the manuscript. JHL supervised the study. JFM is guarantor.
Funding: No additional funding.
, 百拇医药 Ethical approval: Research ethics committee for the Central Middlesex Hospital.
References
Creighton S, Minto C. Managing intersex. BMJ 2001;323: 1264-5.
Meyer-Bahlburg HFL. Gender and sexuality in classic congenital adrenal hyperplasia. Endocrinol Metab Clin North Am 2001;30: 155-71,VIII.
Cooper P, Osborn M, Gath D, Feggetter G. Evaluation of a modified selfreport measure of social adjustment. BJPsych 1992;141: 68-75.
, 百拇医药
Kessler RC, McGonagle KA, Zhao S, Nelson CB, Hughes M, Eshleman S, et al. Lifetime and 12-month prevalence of DSM-III-R psychiatric disorders in the United States: results from the national comorbidity survey. Arch Gen Psychiatry 1994;51: 8-19.
Slijper FME, Drop SL, Molenaar JC, de Muinck Keizer-Schrama MD. Long term psychological evaluation of intersex children. Arch Sex Behav 1998;27: 125-45., 百拇医药(John F Morgan, Helen Murp)