Women with learning disabilities are just as likely to develop breast cancer as women in the general population (Patja, Eero, & Iivanainen, 2001). Many countries now have screening programmes (“mammography”) for women over the age of 50 to help detect changes in the breast tissue, and if needed, begin treatment early. However, several studies have shown that women with learning disabilities are less likely to access these screening programmes than women without learning disabilities (Davies & Duff, 2001; Parish, Saville, & Taylor, 2006; Sullivan et al., 2003).

Interviews with women with learning disabilities showed that some have a poor understanding of mammography: both in terms of why they should have their breasts checked and what happens when you go for a mammogram (Wilkinson, Deis, Bowen, & Bokhour, 2011).

This work also revealed that women with learning disabilities can feel frustrated at their lack of preparation for such an intimate procedure. These findings prompted Wilkinson and colleagues to look for a way of assessing someone’s knowledge and preparedness for a mammogram before they undergo the check (Wang et al., 2015).

It is common in learning disability research for questionnaires to be developed for, or reliable only when completed by carers (e.g. Bastiaanse, Vlasveld, Penning, & Evenhuis, 2013; Maas et al., 2011). Wang and colleagues were keen to use a mammography knowledge measure that could be used with women with learning disabilities themselves. Having a standardised way of assessing knowledge is important to measure the impact of any future interventions (Wang et al., 2015).

One existing self-report measure, the Breast Cancer and Hereditary Knowledge Scale (BCHK) (Ondrusek, Warner, & Goel, 1999) was found to be unsuitable for use with women with learning disabilities (Wilkinson et al., 2011). The statements used were poorly understood by the women who took part and the scale offered no way of measuring preparedness.

Wang and colleagues (2015) therefore developed a new scale: the Mammography Preparedness Measure. We will look here at the results from Wang et al’s (2015) study that checked how reliable and valid this new scale is.

Methods

8 questions were developed based on previous work that had explored what women with learning disabilities knew or wanted to know about mammography (Wilkinson et al., 2011). This was piloted on 10 women with learning disabilities and 3 of the questions were dropped as participants found them confusing. The remaining 5 questions became the final version tested here. All questions are open-ended and cover aspects of the purpose and process of having a mammogram.

Participants

48 women with learning disabilities aged 37 years or older and able to communicate verbally/through assistive technology. Most had experience of mammography.

Process

The Mammography Preparedness Measure was administered twice to each participant, 3-6 weeks (mean 37 days) apart by a research coordinator with experience of working with people with learning disabilities.

Test-retest reliability was assessed by looking at the percentage agreement between times 1 and 2 and calculating kappa across the whole instrument. The validity was qualitatively assessed through what the participants said during the pilot phase.

Results

Test-retest: Mean percentage agreement = 84% (range = 74-91%) kappa = 0.59 (This is considered ‘fair’, anything above 0.6 is ‘good’)

The authors stated that the MPM showed both face and content validity during the pilot sessions and that participants’ understanding of the questions was ‘good’.

Conclusions

The authors conclude that they have developed a reliable and valid measure that can be used with women with learning disabilities to evaluate their preparedness for breast screening.

Strengths and Limitations

This is thought to be the first measure that has been developed to directly assess how well a woman with learning disabilities is prepared for undergoing a mammogram and was developed with direct input from women with learning disabilities themselves.

The measure itself is simple and easy to administer, and the process of asking women with learning disabilities open-ended questions about mammography may in itself help prepare someone for what’s to come.

However, there are some limitations to be acknowledged. This scale was tested in verbally communicative women with learning disabilities who in the most part had previous experience of mammography. There are many women with learning disabilities who would not be able to answer questions and it is unclear whether this measure is reliable or valid in those who have not yet experienced a mammogram. The authors have suggested developing a picture-based measure and translating it into other languages to be accessible to a wider population.

The authors provided very little information about the face and content validity of the scale. They said that it was ‘good’ but gave us no details from which to understand this statement. It would have been informative to include examples of what the women they worked with said about the questions to have a clearer view of their statement.

The authors also argue that people with learning disabilities often have poor health knowledge and this may be a driver of health disparities. They did not provide references for this statement and while this is possible, it should be noted that many barriers exist to accessing health care for those with learning disabilities (Alborz, McNally, & Glendinning, 2005).

In addition, improving health knowledge has no guarantee of improving healthy behaviours, such as going for a screening. Reviews of behaviour change theories are beyond the scope of this current blog, but for example it has been shown that improving children’s knowledge of how to cross a road safely has no impact on their behaviour (Zeedyk, Wallace, Carcary, Jones, & Larter, 2001) and that postgraduate teaching in isolation will improve clinician’s knowledge but not their attitudes, skills or behaviours (Coomarasamy & Khan, 2004).

It is a jump too far to assume that improving women with learning disabilities’ knowledge of mammography will lead to more people going for screenings, however having a way of seeing how prepared someone is for their screening is extremely valuable.

Summary

• Wang et al have developed a simple measure to assess knowledge and preparedness for mammography in women with learning disabilities
• This is the first measure of its kind to ask women with learning disabilities questions directly, rather than asking a carer
• the questions used were developed in collaboration with women with learning disabilities themselves
• The measure was found to have fair reliability for those who are verbal and have experienced breast screening programmes before
• The measure has not been used with women with learning disabilities who are non-verbal
• Measures such as this are needed for assessing outcomes in intervention research, so this is a good start

Links

Primary paper:

Wang, C. T., Greenwood, N., White, L. F., & Wilkinson, J. (2015). Measuring Preparedness for Mammography in Women with Intellectual Disabilities: A Validation Study of the Mammography Preparedness Measure. Journal of Applied Research in Intellectual Disabilities, 28(3), 212–222 [abstract]

Other references

Alborz, A., McNally, R., & Glendinning, C. (2005). Access to health care for people with learning disabilities in the UK: mapping the issues and reviewing the evidence. Journal of Health Services Research & Policy, 10(3), 173–182.  http://doi.org/10.1258/1355819054338997

Bastiaanse, L. P., Vlasveld, G., Penning, C., & Evenhuis, H. M. (2013). Feasibility and reliability of the mini nutritional assessment (MNA) in older adults with intellectual disabilities. The Journal of Nutrition, Health & Aging, 16(9), 759–762. http://doi.org/10.1007/s12603-012-0050-z

Coomarasamy, A., & Khan, K. S. (2004). What is the evidence that postgraduate teaching in evidence based medicine changes anything? A systematic review. BMJ, 329(7473), 1017. http://doi.org/10.1136/bmj.329.7473.1017

Davies, N., & Duff, M. (2001). Breast cancer screening for older women with intellectual disability living in community group homes. Journal of Intellectual Disability Research, 45(3), 253–257. http://doi.org/10.1046/j.1365-2788.2001.00313.x

Maas, A. P. H. M., Didden, R., Korzilius, H., Braam, W., Collin, P., Smits, M. G., & Curfs, L. M. G. (2011). Psychometric properties of a sleep questionnaire for use in individuals with intellectual disabilities. Research in Developmental Disabilities, 32(6), 2467–2479. http://doi.org/10.1016/j.ridd.2011.07.013

Ondrusek, N., Warner, E., & Goel, V. (1999). Development of a knowledge scale about breast cancer and heredity (BCHK). Breast Cancer Research and Treatment, 53(1), 69–75. http://doi.org/10.1023/A:1006114710328

Parish, S. L., Saville, A. W., & Taylor, S. J. (2006). Women With Cognitive Limitations Living in the Community: Evidence of Disability-Based Disparities in Health Care. Mental Retardation, 44(4), 249–259. http://doi.org/10.1352/0047-6765(2006)44[249:WWCLLI]2.0.CO;2

Patja, K., Eero, P., & Iivanainen, M. (2001). Cancer incidence among people with intellectual disability. Journal of Intellectual Disability Research, 45(4), 300–307. http://doi.org/10.1046/j.1365-2788.2001.00322.x

Sullivan, S. G., Glasson, E. J., Hussain, R., Petterson, B. A., Slack-Smith, L. M., Montgomery, P. D., & Bittles, A. H. (2003). Breast cancer and the uptake of mammography screening services by women with intellectual disabilities. Preventive Medicine, 37(5), 507–512. http://doi.org/10.1016/S0091-7435(03)00177-4

Wilkinson, J. E., Deis, C. E., Bowen, D. J., & Bokhour, B. G. (2011). “It”s Easier Said Than Done’: Perspectives on Mammography From Women With Intellectual Disabilities. The Annals of Family Medicine, 9(2), 142–147. http://doi.org/10.1370/afm.1231

Zeedyk, M. S., Wallace, L., Carcary, B., Jones, K., & Larter, K. (2001). Children and road safety: Increasing knowledge does not improve behaviour. British Journal of Educational Psychology, 71(4), 573–594. http://doi.org/10.1348/000709901158686