Re: Breast screening is beneficial, panel concludes, but women need to know about harms
Carte blanche to exclude women with intellectual disabilities?
Editor -
The coverage of over-diagnosis of breast cancer in women (BMJ2012;345:e7330) is not valid for all women as the reverse is seen for women with intellectual disabilities (ID). Here concern has centred on low up-take of breast cancer screening, which by default reduces the number of neoplasms detected and potentially masks the incidence of breast cancer.1, 2 With the exception of work by Patja et al. (2001), a review on the incidence of breast cancer in women with ID reported lower levels compared to the general population, with more robust evidence reported for women with Down’s syndrome [DS].3 The concern raised here is that, with the suggestion of over diagnosis, low incidence should not be used to dismiss the necessity for women with ID to be screened.
There may be more reasons for not screening women with DS due to their vulnerability to ionising radiation, particularly X-rays, and the protective factors of DS against breast cancer.4,5 Again, a special case may be made against screening women with severe or profound ID due to the problems of obtaining informed consent.6 However, screening should not be dismissed for all women with ID. Breast cancer seems more frequent in women with Cowden’s disease, cerebral palsy and type 1 neurofibro-matosis (NF1).7,8,9 Moreover, the extent of the inherited component of breast cancer remains unknown in women with ID, and they also display a greater propensity for obesity, nulliparity, poor diet and exercise, all of which increase risk of the disease. 10,11,12 These factors surely outweigh the protective factors of early menopause and low oestrogen levels. 13,14,15 As previously suggested by Satgé and Sasco (202) it may be that the debate needs to be reopened about alternatives to screening for women with DS and perhaps include those women with severe and profound ID but a blanket dismissal for all women with ID would be untenable.
With the need for more balanced information in relation to breast screening, discussions about the procedure become additionally complicated for women with ID, since some find abstract concepts and uncertain outcomes difficult to understand. This is aside from the problems they experience in processing and understanding information. It is hoped that women with ID will be given the option to attend breast screening, including women with DS and those women with severe and profound ID where alternatives to the current provision may need to be sought. It is essential that any woman’s decision is based on a fully informed discussion, rather than an emphasis by carers and health professionals simply on ‘getting screened’ as this can lead to women attending screening without really fully understanding the procedure.12
References:
1Patja K, Eero P, Livanainen M. Cancer incidence among people with intellectual disability. J Intellect Disabil Res 2001;45:300-7.
2Sullivan SG, Glasson EJ, Hussain R, Petterson BA, Slack-Smith LM, Montgomery PD, Bittles AH. Breast cancer and the uptake of mammography screening services by women with intellectual disabilities. Prev Med 2003;37:507-12
3Willis, D.S., Satgé, D. AND Sullivan, S FULL REFERENCE????
4Satgé D, Sasco AJ. Breast screening guidelines should be adapted in Down's
syndrome. BMJ 2002;324:1155.
5 Hasle H, Clemmensen IH, Mikkelsen M. Risks of leukaemia and solid tumours in
individuals with Down's syndrome. Lancet 2000;355:165-9.
6 Willis, D.S. Unpublished PhD.
7 Brownstein MH, Wolf M, Bikowski JB. Cowden's disease: a cutaneous marker of breast cancer. Cancer 1978;41:2393-8.
8 Strauss D, Cable W, Shavelle R. Causes of excess mortality in cerebral palsy. Dev Med Child Neurol 1999;41:580-5.
9 Sharif S, Moran A, Huson SM, Iddenden R, Shenton A, Howard E, Evans DG. Women with neurofibromatosis 1 are at a moderately increased risk of developing breast cancer and should be considered for early screening. J Med Genet 2007;44:481-4
10 Robertson, J., Emerson, E., Gregory, N, Hatton, C., Turner, S, Kessissoglou, S, Hallam, A. Lifestyle related risk factors for poor health in residential settings for people with intellectual disabilities. Res Dev Disabil, 21(6) 2000, Pages 469–486
11 Rimmer, JH.; Braddock, D. And Fujiura, G. Prevalence of obesity in adults with mental retardation: Implications for health promotion and disease prevention.
Ment Retard, 31(2), Apr 1993, 105-110.
12Davies N, Duff M. Breast cancer screening for older women with intellectual disability living in community group homes. J Intellect Disabil Res 2001;45:253-7.
13Schupf N, Zigman W, Kapell D, Lee JH, Kline J, Levin B. Early menopause in women with Down's syndrome. J Intellect Disabil Res 1997;41:264-7
14Cosgrove MP, Tyrrell M, McCarron M, Gill M, Lawlor BA. Age at on set ofdementia and age of menopause in women with Down’s syndrome. J Intellect Disabil Res 1999;43:461-5.
15Seltzer GB, Schupf N, Wu HS. A prospective study of menopause in women with Down’s syndrome. J Intellect Disabil Res 2001;45,1-7.
Rapid Response:
Re: Breast screening is beneficial, panel concludes, but women need to know about harms
Carte blanche to exclude women with intellectual disabilities?
Editor -
The coverage of over-diagnosis of breast cancer in women (BMJ2012;345:e7330) is not valid for all women as the reverse is seen for women with intellectual disabilities (ID). Here concern has centred on low up-take of breast cancer screening, which by default reduces the number of neoplasms detected and potentially masks the incidence of breast cancer.1, 2 With the exception of work by Patja et al. (2001), a review on the incidence of breast cancer in women with ID reported lower levels compared to the general population, with more robust evidence reported for women with Down’s syndrome [DS].3 The concern raised here is that, with the suggestion of over diagnosis, low incidence should not be used to dismiss the necessity for women with ID to be screened.
There may be more reasons for not screening women with DS due to their vulnerability to ionising radiation, particularly X-rays, and the protective factors of DS against breast cancer.4,5 Again, a special case may be made against screening women with severe or profound ID due to the problems of obtaining informed consent.6 However, screening should not be dismissed for all women with ID. Breast cancer seems more frequent in women with Cowden’s disease, cerebral palsy and type 1 neurofibro-matosis (NF1).7,8,9 Moreover, the extent of the inherited component of breast cancer remains unknown in women with ID, and they also display a greater propensity for obesity, nulliparity, poor diet and exercise, all of which increase risk of the disease. 10,11,12 These factors surely outweigh the protective factors of early menopause and low oestrogen levels. 13,14,15 As previously suggested by Satgé and Sasco (202) it may be that the debate needs to be reopened about alternatives to screening for women with DS and perhaps include those women with severe and profound ID but a blanket dismissal for all women with ID would be untenable.
With the need for more balanced information in relation to breast screening, discussions about the procedure become additionally complicated for women with ID, since some find abstract concepts and uncertain outcomes difficult to understand. This is aside from the problems they experience in processing and understanding information. It is hoped that women with ID will be given the option to attend breast screening, including women with DS and those women with severe and profound ID where alternatives to the current provision may need to be sought. It is essential that any woman’s decision is based on a fully informed discussion, rather than an emphasis by carers and health professionals simply on ‘getting screened’ as this can lead to women attending screening without really fully understanding the procedure.12
References:
1Patja K, Eero P, Livanainen M. Cancer incidence among people with intellectual disability. J Intellect Disabil Res 2001;45:300-7.
2Sullivan SG, Glasson EJ, Hussain R, Petterson BA, Slack-Smith LM, Montgomery PD, Bittles AH. Breast cancer and the uptake of mammography screening services by women with intellectual disabilities. Prev Med 2003;37:507-12
3Willis, D.S., Satgé, D. AND Sullivan, S FULL REFERENCE????
4Satgé D, Sasco AJ. Breast screening guidelines should be adapted in Down's
syndrome. BMJ 2002;324:1155.
5 Hasle H, Clemmensen IH, Mikkelsen M. Risks of leukaemia and solid tumours in
individuals with Down's syndrome. Lancet 2000;355:165-9.
6 Willis, D.S. Unpublished PhD.
7 Brownstein MH, Wolf M, Bikowski JB. Cowden's disease: a cutaneous marker of breast cancer. Cancer 1978;41:2393-8.
8 Strauss D, Cable W, Shavelle R. Causes of excess mortality in cerebral palsy. Dev Med Child Neurol 1999;41:580-5.
9 Sharif S, Moran A, Huson SM, Iddenden R, Shenton A, Howard E, Evans DG. Women with neurofibromatosis 1 are at a moderately increased risk of developing breast cancer and should be considered for early screening. J Med Genet 2007;44:481-4
10 Robertson, J., Emerson, E., Gregory, N, Hatton, C., Turner, S, Kessissoglou, S, Hallam, A. Lifestyle related risk factors for poor health in residential settings for people with intellectual disabilities. Res Dev Disabil, 21(6) 2000, Pages 469–486
11 Rimmer, JH.; Braddock, D. And Fujiura, G. Prevalence of obesity in adults with mental retardation: Implications for health promotion and disease prevention.
Ment Retard, 31(2), Apr 1993, 105-110.
12Davies N, Duff M. Breast cancer screening for older women with intellectual disability living in community group homes. J Intellect Disabil Res 2001;45:253-7.
13Schupf N, Zigman W, Kapell D, Lee JH, Kline J, Levin B. Early menopause in women with Down's syndrome. J Intellect Disabil Res 1997;41:264-7
14Cosgrove MP, Tyrrell M, McCarron M, Gill M, Lawlor BA. Age at on set ofdementia and age of menopause in women with Down’s syndrome. J Intellect Disabil Res 1999;43:461-5.
15Seltzer GB, Schupf N, Wu HS. A prospective study of menopause in women with Down’s syndrome. J Intellect Disabil Res 2001;45,1-7.
Competing interests: No competing interests