The incidence of cancer in people with intellectual disabilities

Sullivan, Sheena G.; Hussain, Rafat; Threlfall, Timothy; Bittles, Alan H.

doi:10.1007/s10552-004-1256-0

Cited by 91 publications

(111 citation statements)

References 24 publications

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“…population, 10,11 their rates of timely mammography (within the past 2 years) have been as low as 12% in recent studies. 12,13 Little is known, however, about the reasons for these low rates.…”

Section: A M M O G R a Phy A Nd In T El L Ec T U A L Dis A Bil I T Iesmentioning

confidence: 99%

'It's Easier Said Than Done': Perspectives on Mammography From Women With Intellectual Disabilities

Wilkinson

Deis²,

Bowen³

et al. 2011

The Annals of Family Medicine

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PURPOSE Women with intellectual disabilities (or mental retardation) are living longer, receiving primary care in the community, and have equal rates of breast cancer compared with women in the general population, but they have lower rates of mammography. Although several public campaigns have successfully raised the mammography rate for racial and ethnic minority women, they have not penetrated the community of women with intellectual disabilities. No research to date has explored potential barriers to mammography for these women by involving the women themselves as participants. METHODSWe undertook a qualitative study to explore the perceptions and understanding of mammography for women with intellectual disabilities and some of the potential reasons they would or would not have the test. Twentyseven intellectually disabled women were recruited through a variety of community groups and interviewed using a semistructured interview guide. Data were analyzed using qualitative techniques from grounded theory.RESULTS Participants in this study described being poorly prepared for mammography: they did not understand its purpose and were not prepared for the logistics of the experience. The latter was more upsetting to participants and contributed to their negative perceptions of mammography. Participants reported feeling unprepared and singled out for being unprepared, despite their desire to have at least 1 mammogram, as do other women their age.CONCLUSIONS Women with intellectual disabilities perceive mammography differently than do women who do not have intellectual disabilities, and their perception is informed by inadequate knowledge, anxiety, and inadequate preparation. These themes should be considered when planning cancer prevention interventions with this population and when counseling individual women in the clinical setting.

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Section: A M M O G R a Phy A Nd In T El L Ec T U A L Dis A Bil I T Iesmentioning

confidence: 99%

'It's Easier Said Than Done': Perspectives on Mammography From Women With Intellectual Disabilities

Wilkinson

Deis²,

Bowen³

et al. 2011

The Annals of Family Medicine

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“…35 Rates of breast cancer in women with ID reported in 2 large cohort studies are the same as or lower than the general population. 36,37 However, women with ID are living longer and because the risk of breast cancer rises with each decade of life, 38 the rates of breast cancer in women with ID will probably rise. An interesting note is that women with Down syndrome seem to have extremely low rates of breast cancer, 39 so low that some have advocated simply not screening them, as the risk conferred by the radiation of mammography is probably higher.…”

Section: Breast Cancer Screeningmentioning

confidence: 99%

Primary Care for Women with Intellectual Disabilities

Wilkinson¹,

Cerreto²

2008

The Journal of the American Board of Family Medicine

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Women with intellectual disabilities (ID) need thoughtful, well-coordinated care from primary care physicians. They are particularly susceptible to experiencing disparities in care because of varied participation in shared decision making. This review of the current literature comments on the quantity and quality of existing studies regarding several key women's health issues: menstrual disorders, cervical and breast cancer screening, contraception, and osteoporosis. A review of the current thinking regarding ethical and legal issues in medical decision making for these women is also provided. We found that there are several high-quality studies recommending early and frequent screening for osteoporosis, which is more common in women with ID. Smaller and fewer studies comment specifically on techniques for accomplishing the gynecological examination in women with ID, although the cervical cancer screening recommendation should be individualized for these patients. Consensus data on the management of menstrual problems and contraception in women with ID is provided. There are some data on breast cancer incidence but few articles on methods to improve screening rates in women with ID. Intellectual disability (ID) refers to a disability that is characterized by significant limitations both in cognitive functioning and in adaptive behavior (conceptual, social, and practical Women's health issues are important concerns among those with ID. In the past 40 years, it has been suggested that women's health should shift to a focus tailored to the individual patient, taking into account her personal beliefs and respecting her choices. The preface to the 1984 edition of Our Bodies, Our Selves states its goals "to reach as many women as possible with the tools which will enable them to take greater charge of their own health care and their lives, deal with the existing medical system and fight wherever possible for improvements and changes."6 While physicians' responsibilities to regard women as equal partners in making decisions about their health care has been debated, 7 patients' reproductive rights and choices have remained an important topic of discussion. Women with ID, however, benefit unevenly from this change in thinking. It is unclear how women who may lack some of the skills to make everyday decisions should partner in decisions about their health care. In addition, in a field where research has lagged on women's health topics, how do we interpret the existing evidence base for women with This article was externally peer reviewed.

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“…There are also insufficient data to evaluate the incidence of skin cancer in the population of adults with ID, although 2 large studies document lower rates of prostate cancer in men with ID compared with the general population. 35,42 The detectable preclinical phase for both cancers may be altered in people with ID because symptom detection and reporting are important in the early evaluation of these cancers. Physicians should screen their intellectually disabled adult patients as they would other adults in their patient panel until more data are available.…”

Section: Physicians Should Individualize the Interval For Cervical Scmentioning

confidence: 99%

Screening Tests for Adults with Intellectual Disabilities

Wilkinson¹,

Culpepper²,

Cerreto³

2007

The Journal of the American Board of Family Medicine

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Adults with intellectual disabilities need thoughtful, well-coordinated primary care from family physicians. However, evidence-based screening recommendations are lacking. We examined screening recommendations for common preventable conditions using the US Preventative Service Task Force guidelines. We also reviewed the literature about the prevalence of these conditions in adults with intellectual disabilities. Obesity, osteoporosis, and smoking are more prevalent in adults with intellectual disabilities, and enhanced screening for these conditions is recommended. Abnormal Papanicolaou smears and cervical cancer are less common in adults with intellectual disabilities and screening recommendations should be individualized. We also discussed strategies to make screening procedures less stressful for these patients. The term "intellectual disabilities" (ID) refers to the condition of people with disabilities characterized by significant limitations both in cognitive functioning and adaptive behavior (conceptual, social, and practical adaptive skills) that originate before age 18 (Table 1). As used here, the term intellectual disabilities is synonymous with the term "mental retardation," a term that many people with ID dislike because it is stigmatizing and is frequently used as a global summary about complex human beings with a wide range of gifts, abilities, and needs. Challenges or limitations may be partially determined by the requirements of the environment in which people with ID live; the degree of disability may vary over time depending on the skills and supports the patient needs to function in his or her current environment. Adults with ID are living longer because of improved medical care, technology, and environmental conditions. They are also more likely to live in community-based settings instead of large institutions.

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The incidence of cancer in people with intellectual disabilities

Cited by 91 publications

References 24 publications

'It's Easier Said Than Done': Perspectives on Mammography From Women With Intellectual Disabilities

'It's Easier Said Than Done': Perspectives on Mammography From Women With Intellectual Disabilities

Primary Care for Women with Intellectual Disabilities

Screening Tests for Adults with Intellectual Disabilities

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