Joanne Wilkinson

Primary Care for Women with Intellectual Disabilities

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 womens 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.

Screening Tests for Adults with Intellectual Disabilities

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.

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

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. METHODS We 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. Twenty-seven 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.

Determinants of mammography in women with intellectual disabilities

Background: Women with intellectual disabilities have the same rate of breast cancer as other women but are less likely to undergo screening mammography. Characteristics associated with mammography for women with intellectual disabilities in the United States are unknown. Methods: This study was based on a secondary data analysis of the Massachusetts Department of Developmental Services database, comparing women who had a mammogram within 2 years with women who had not on variables related to the ecological model. Bivariate analyses, logistic regression, and assessment of interactions were performed. Results: The study samples (n = 2907) mean age was 54.7 years; 58% lived in 24-hour residential settings, 52% received nursing health coordination, and more than 25% had clinical examination needs (eg, sedation). Residential setting, health coordination, and recent influenza vaccination were all associated with mammography. Having a guardian, higher level of activities of daily living needs, and examination needs (requiring sedation or limited wait time for examinations) were associated with lower rates. Interactions between health coordination and examination needs confirmed the potential of the nurse to ameliorate barriers to mammography. Conclusion: Several system-level variables were significantly associated with mammography and, in some cases, seemed to ameliorate intrapersonal/behavioral barriers to mammography. Community agencies caring for intellectually disabled women have potential to impact mammography rates by using health coordination.

Sexual and reproductive health care for women with intellectual disabilities: a primary care perspective.

Adults with intellectual disabilities (ID) face multiple health disparities and challenges to accessing health care. Little is known about sexual health care of this population and about how to optimize womens reproductive health care for women with intellectual disabilities. Women with ID face important barriers to care, including lack of provider training and experience, hesitancy to broach the topic of sexual health, a lack of sexual knowledge and limited opportunities for sex education, disability-related barriers, higher prevalence of sexual abuse and assault, often underreported, lack of dialogue around this populations human right to consensual sexual expression, undertreatment of menstrual disorders, and legal and systemic barriers. We conducted a limited literature review related to six aspects of sexual health care of women with ID, including barriers to sexual health care, sex education, sexual abuse and consensual sexuality, contraception, screening for sexually transmitted infections and cervical cancer, and pregnancy and parenting. After providing background information about each topic, we suggest practice recommendations for primary care clinicians, using a rights-based framework.

Patient and provider views on the use of medical services by women with intellectual disabilities

BACKGROUND People with intellectual disabilities (ID) receive primary care in community-based practices and are encouraged to participate in the physician-patient relationship. However, the nature of this participation is not known. METHODS Qualitative data were analysed to obtain perspectives from patients and providers regarding clinic visits. Patient participants were recruited from community organisations, while physician participants were recruited from emails and phone calls to local and regional practices and a national and regional list serve. Analysis methods derived from grounded theory were used. RESULTS Twenty-seven women with ID and 22 family physicians were interviewed. Themes important to both groups included time, how the support worker should be used in the encounter and the nature of the physician-patient relationship. Patients expressed frustration at how little time they spent with their physician, and wished that physicians would speak directly to them instead of to their support worker. Physicians felt that patients with ID took too much time, and said that they preferred communicating with the support worker. The interviews also revealed unconscious biases about people with ID. CONCLUSIONS Patient participation is encouraged for people with ID, but is limited because of both physician and patient factors. Greater awareness of these factors may improve care for patients with ID.

Characteristics associated with bone mineral density screening in adults with intellectual disabilities.

Background: Certain health characteristics place adults with intellectual disability at increased risk for osteoporosis. However, little data exist to describe how comorbid disease or medications affect screening patterns for these patients. Methods: We evaluated the relationship between bone density screening and the presence of risk factors using a secondary cross-sectional analysis of 5520 adults aged 19 years and older with the diagnosis of intellectual disability. Results: Of the sample, 22.9% received one or more bone density screenings (34.4% women, 13.3% men). Low screening rates in men prohibited the construction of a valid sex-specific multivariate model of the association between bone density screening and risk factors for osteoporosis. In women, when controlling for age the following factors were significantly associated with ever having bone density screening: use of antiepileptic medication (odds ratio [OR], 1.5) and vitamin D (OR, 3.4); recent receipt of a flu vaccine (OR, 1.4); and living in a 24-hour supported residential setting (OR, 1.3). A diagnosis of Down syndrome (OR, 0.72) was associated with decreased likelihood of screening. Conclusions: Many known risk factors for osteoporosis affected the likelihood of an adult with intellectual disability receiving screening, yet overall screening rates for adults with intellectual disabilities were lower than screening rates in the general population. Results suggest a need for increased provider awareness about bone density screenings in high-risk adults with intellectual disability, especially men, as well as men and women with Down syndrome.

More than just a mammogram: breast cancer screening perspectives of relatives of women with intellectual disability.

Women with intellectual disability (ID) have similar rates of breast cancer as the general public, but higher breast cancer mortality and lower rates of regular screening mammography. Screening rates are lowest among women who live with their families. Though women with ID often make decisions in partnership with their relatives, we lack research related to family member perspectives on mammography. We conducted a qualitative study of family members of women with ID, with an interview guide focused on health care decision making and experiences, and breast cancer screening barriers, facilitators, and beliefs as related to their loved ones. Sixteen family members underwent semistructured interviews. Important themes included mammography as a reference point for other social and cultural concerns, such as their loved ones sexuality or what it means to be an adult woman; fear of having to make hard decisions were cancer to be diagnosed acting as a barrier to screening; a focus on quality of life; and desire for quality health care for their loved one, though quality care did not always equate to regular cancer screening. Adults with ID are valued members of their families, and their relatives are invested in their well-being. However, families fear the potentially complicated decisions associated with a cancer diagnosis and may choose to forgo screening due to misinformation and a focus on quality of life. Effective interventions to address disparities in mammography should focus on adults with ID and their families together, and incorporate the family context.

Testing the feasibility of a DVD-based intervention to promote preparedness for mammography in women with intellectual disabilities.

Women with intellectual disabilities (ID, formerly mental retardation) have a similar breast cancer incidence as the general population, but they have higher breast cancer mortality and lower rates of regular screening mammography. We conducted a feasibility study evaluating acceptability, demand, and limited efficacy of a health education DVD about mammography for women with ID. The DVD was developed in order to address disability-specific barriers to mammography identified in prior studies, such as anxiety related to navigating the logistics of obtaining a mammogram. The DVD was found to be acceptable and feasible, and led to a moderate increase in mammography preparedness in this population. Study results suggest that this DVD-based intervention is an appropriate candidate for further study measuring efficacy and effectiveness in increasing regular mammography in women with ID, a disparity population.

Measuring Preparedness for Mammography in Women with Intellectual Disabilities: A Validation Study of the Mammography Preparedness Measure

BACKGROUND Women with intellectual disabilities have similar breast cancer rates as the general population, but lower rates of regular mammography and higher breast cancer mortality rates. Although prior qualitative work demonstrates that women with intellectual disabilities face unique, disability-specific barriers to mammography, the present authors lack standardized, validated instruments for measuring knowledge of breast cancer screening in this population. In addition, much research related to adults with intellectual disabilities focuses on family or carer perspectives, rather than involving women with intellectual disabilities, themselves. METHODS The present authors first pilot tested a general population instrument measuring breast cancer knowledge, and found that it did not perform adequately in women with intellectual disabilities. In response, the present authors developed the Mammography Preparedness Measure (MPM), a direct short interview tool to measure knowledge and preparedness in women with intellectual disabilities, themselves, rather than relying on caregiver or other reports, and using inclusive methodology. The present authors validated the MPM by assessing test-retest reliability. RESULTS Average test-retest per cent agreement of 84%, ranging from 74 to 91% agreement per item, with an overall kappa of 0.59. CONCLUSION The MPM appears to be a valid instrument appropriate for measuring mammography preparedness in women with intellectual disabilities. The success of this innovative tool suggests that direct, rather than informant-directed tools can be developed to measure health knowledge and cancer screening readiness in adults with intellectual disabilities, an important measure in studying and reducing disparities.