Breast cancer and the uptake of mammography screening services by women with intellectual disabilities

doi:10.1016/S0091-7435(03)00177-4

Preventive Medicine

Volume 37, Issue 5, November 2003, Pages 507-512

https://doi.org/10.1016/S0091-7435(03)00177-4 Get rights and content

Abstract

Background. It is estimated that approximately 50% of women in Australia with intellectual disability will live to 70 years of age and as a result many will fall within the age group at highest risk for breast cancer (50–69 years).

Methods. Subjects were identified through the Western Australia Disability Services database. To determine the number of women diagnosed with breast cancer during the period 1982–2000, individual records (n = 2,370) were linked to the Western Australia Cancer Registry and the Mammography Screening Registry.

Results. The incidence of breast cancer among women with intellectual disability was 64.0 per 100,000 person-years, by comparison with 146.7 per 100,000 person-years in the general population. The uptake of breast cancer screening was examined in a subgroup of 380 women, 34.7% of whom had used mammographic screening, as opposed to 54.6% screening uptake in the general population. Failure to use screening services was highest in women who were unmarried, and was positively associated with severity of intellectual disability, presence of physical disabilities, and urban residence.

Conclusions. The lower incidence of breast cancer in women with intellectual disability may in part be attributable to decreased life expectancy, but it also appears to reflect significant under utilization of the readily available screening services.

Introduction

Breast cancer is one of the leading causes of morbidity and mortality in women worldwide. Globally, 1.8% of female deaths in 2000 were attributed to breast cancer [1], with the incidence of the disease increasing along a gradient from East to West [2]. In Australia, breast cancer carries a lifetime risk of 1 in 11 for all women and was responsible for 4.1% of female deaths in 2000 [3], [4]. Limited information is available on the incidence of breast cancer in women with intellectual disability (ID), as historically they have had a significantly lower life expectancy and frequently exhibit additional health problems by comparison with the general population. Recent evidence has demonstrated marked gains in the survival of people with ID, with an average life span of 71 years reported for females [5]. Improvements in life expectancy of this scale indicate that, in developed countries, most women with ID will survive to the age group at greatest risk of breast cancer (50–69 years) [4].

Factors associated with breast cancer among women with ID may include nulliparity, which can result in a fourfold increase in risk [6], and the long-term use of hormone-based contraception [7], although more recent evidence on this latter topic has been inconclusive [8]. Other reported risk factors include poor diet and obesity [9], both of which are likely to be more common among women with ID [10]. Conversely, women with ID are reported to reach menopause at a relatively younger age [11] which may confer protection against an increased risk of breast cancer [12]. In addition to the underlying risk factors, breast cancer incidence and mortality are influenced by the availability of breast cancer screening services [13]. Even when these services are available, accessibility and utilization of screening may be a major issue for marginalized population subgroups, including women with ID.

It has been reported that the overall incidence of breast cancer in women with ID does not differ significantly from that of the general population [14], [15]. Two subgroups are exceptions: women with Down syndrome and those with cerebral palsy (CP). Women with Down syndrome have a significantly reduced incidence of breast cancer [16], [17], [18], probably related to their earlier menopause [19] and significantly lower life expectancy than women with other forms of ID [20]. By comparison, women with CP have been reported to have a threefold increase in the risk of dying from breast cancer [21], possibly associated with reduced uptake of screening because of physical disability [22]. However, extrapolation of breast cancer incidence from the CP group to all women with ID has limited applicability, since not all subjects with CP have comorbid ID.

The aims of the present study were to investigate the prevalence and effects of breast cancer in women with ID using a community-based sample, and then to evaluate their level of uptake of mammographic screening services.

Section snippets

Breast cancer incidence

Subjects were identified through the Disability Services Commission (DSC) of Western Australia (WA), which has maintained a database of all persons referred with ID since 1953. On referral demographic and diagnostic information is recorded in the client file, and new referrals undergo IQ testing on the Weschler or Stanford Binet scales and an adaptive behavior assessment. Eligibility for services is based on an IQ and adaptive behavior score of <70, with relative levels of severity

Breast cancer incidence

Of the 2,370 women linked with the Cancer Registry, 11 women with mild ID, 4 with moderate ID, and 5 with severe ID had been diagnosed with breast cancer. The mean age at diagnosis was 49 years (range, 27–86 years), and 11 women were under 50 years at diagnosis. Eighteen of the women lived in the metropolitan area and 11 were in residential care at the time of diagnosis. The cause of ID in the sample varied considerably, with no clear association between etiology and breast cancer. Nine women

Discussion

Recently there has been increasing focus on the health needs of people with ID, which has resulted in a call supported by the World Health Organization for research into practices that successfully promote longevity and healthy aging in persons with ID [26], and within the United States, for a reduction in the health disparities that adversely affect these individuals [27].

The reduced overall rate of breast cancer observed among women with ID in the present study may be partially explained by

Acknowledgements

Thanks are due Jan Tresham and Kim Ooi of BreastScreen WA for providing information and statistics on mammography screening; Rosa Cameron and Janet Brook, also from BreastScreen, for advice regarding mammography; Dr. Tim Threlfall of the Health Department of Western Australia for providing data from the WA Cancer Registry; and Mark Divitini, University of Western Australia, for statistical advice. Further information on data linkage in Western Australia can be found on the Data Linkage Unit

References (30)

A.F. Judkins et al.
Breast cancerinitial diagnosis and current treatment options
Nurs Clin North Am
(2001)
J. Robertson et al.
Lifestyle related risk factors for poor health in residential settings for people with intellectual disabilities
Res Dev Disabil
(2000)
H. Hasle et al.
Risks of leukaemia and solid tumours in individuals with Down's syndrome
Lancet
(2000)
Q. Yang et al.
Mortality associated with Down's syndrome in the USA from 1983 to 1997a population-based study
Lancet
(2002)
C.D.J. Holman et al.
Population-based linkage of health records in Western Australiadevelopment of a health services research linked database
Aust NZ J Public Health
(1999)
Deaths by cause, sex and mortality stratum in WHO regions, estimates for 2000: the World Health Report 2001. Geneva:...
F. Levi et al.
Worldwide patterns of cancer mortality, 1990–1994
Eur J Cancer Prev
(1999)
Causes of death, ABS Cat. No. 3303.01. Canberra: Australian Bureau of Statistics;...
BreastScreen Australia Achievement Report 1997–1998. Cancer Series No. 13. AIHW Cat. No. CAN 81. Canberra: Australian...
A.H. Bittles et al.
The influence of intellectual disability on life expectancy
J Gerontol A Biol Sci Med Sci
(2002)

K. McPherson et al.

ABC of breast diseasesbreast cancer—epidemiology, risk factors, and genetics

BMJ

(2000)

P.A. Marchbanks et al.

Oral contraceptives and the risk of breast cancer

N Engl J Med

(2002)

W.C. Willett

Diet and breast cancer

J Intern Med

(2001)

J. Carr et al.

Menopause in women with learning disabilities

J Intellect Disabil Res

(1995)

A.Y. El-Bastawissi et al.

Reproductive and hormonal factors associated with mammographic breast density by age (United States)

Cancer Causes Control

(2000)

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Regular articleBreast cancer and the uptake of mammography screening services by women with intellectual disabilities

Abstract

Introduction

Section snippets

Breast cancer incidence

Breast cancer incidence

Discussion

Acknowledgements

Nurs Clin North Am

Res Dev Disabil

Lancet

Lancet

Aust NZ J Public Health

Worldwide patterns of cancer mortality, 1990–1994

Eur J Cancer Prev

The influence of intellectual disability on life expectancy

J Gerontol A Biol Sci Med Sci

ABC of breast diseasesbreast cancer—epidemiology, risk factors, and genetics

BMJ

Oral contraceptives and the risk of breast cancer

N Engl J Med

Diet and breast cancer

J Intern Med

Menopause in women with learning disabilities

J Intellect Disabil Res

Reproductive and hormonal factors associated with mammographic breast density by age (United States)

Cancer Causes Control

Regular article
Breast cancer and the uptake of mammography screening services by women with intellectual disabilities