NIHR CLAHRC for South Yorkshire

A critical review of interventions to increase the uptake of mammography in minority ethnic populations

Hilary Piercy, Sarah Salway & Punita Chowbey

June 2012



Acknowledgments Support for this work was provided by NIHR CLAHRC for South Yorkshire. NIHR CLAHRC for South Yorkshire acknowledges funding from the National Institute of Health Research. The views and opinions expressed are those of the authors, and not necessarily those of the NHS, the NIHR or the Department of Health. CLAHRC SY would also like to acknowledge the participation and resources of our partner organisations. Further details can be found at www.clahrc-sy.nihr.ac.uk. The authors also wish to acknowledge the assistance and support of Joanne Coy, Lerleen Willis, Permjeet Dhoot and Louse Brewins from NHS Sheffield. We are also grateful for contributions from the following colleagues at SHU; Melanie Gee who conducted the electronic literature search, Mubarak Ismail who prepared the graphs on Pages 9 -11 and Karen Collins who provided advisory input at the beginning of the project.

Summary Background We report here on a project supported by the NIHR CLAHRC for South Yorkshire Inequalities Theme and NHS Sheffield. Service data for Sheffield indicates significant variation in levels of breast screening uptake across the city with particularly low levels in some of the most ethnically diverse areas. Service providers and commissioners have voiced concerns about whether the current service is adequately catering to the needs of minority ethnic women, and an interest in learning from evidence elsewhere on what types of interventions can be effective in tackling ethnic inequalities in breast screening uptake. The present project was undertaken to begin to address these issues.

Aim The aim of this critical review was to examine the range of interventions that have been introduced to increase the uptake of mammography among minority ethnic women and the extent to which they have achieved this objective. The review also aimed to explore the underlying rationale for different interventional strategies and to compile the available evidence on the process-related and contextual factors that may influence the success of interventions. The purpose was to provide insights that can inform the development of current services provided in England.

Approach A comprehensive search strategy yielded a total of eight UK and 16 non UK papers that were included in the review. Bearing in mind the likely limited transferability of findings generated in other contexts to the NHS Breast Screening Programme (BSP), our primary focus was on UK studies. Nevertheless, we recognised value in exploring non-UK literature, particularly for possible innovations that to-date have not been documented in the UK. The very small number of high quality, recent UK studies also suggested there would be value in a more inclusive approach. The following processes ensured we retained a UK focus; 1) inclusion of non UK literature on the basis of its relevance to the UK context and 2) initial concentration on the UK literature in the review process in both identifying propositions and examining the evidence. Findings 1. The majority of UK and non UK studies reported information and educational interventions aimed at minority ethnic women, based on the proposition that improving understanding will improve uptake. • •

Providing women with text-based translated materials had limited benefit, particularly when literacy levels were low Verbal/audio forms of communication, e.g. DVDs and face to face discussion that presented information in a narrative format were acceptable to women and improved their knowledge of screening.

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Multi-component community based interventions that enabled women to learn more about the screening programme and supported them to engage with it improved uptake. The following components appeared to be of particular value; o Opportunity to engage with service providers and have individual anxieties about procedures and the service allayed. o A navigational support component - whereby Lay Health Workers assisted women with access to the service, e.g. scheduling appointments, locating services etc.

2. There is very limited evidence that sending women information about the programme that has been endorsed by their GP affected their decision to attend for screening. 3. For women who were sent a screening invitation and did not attend, personal contact by GP receptionists, either by phone or letter, increased the likelihood of attendance. The ability to communicate with the women in their mother tongue appeared to be an important element in this intervention. 3. There is no evidence from the UK literature to support the proposition that providing women with dedicated transport to the screening service improved uptake. The limited evidence available indicated very low uptake of this facility when it was made available. 4. Local BSP system failures impacted on UK intervention studies and by extension are likely to have also impacted on women's uptake of screening. The indications are that these would disproportionately affect those from minority ethnic populations. Examination of existing processes also identified aspects amenable to improvement. The following specific problems were identified; •

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In one study, a high proportion of missed calls to the telephone appointment system through which women re-schedule or book appointments. Changes to the system resulted in a substantial reduction in missed calls. Opportunistic evidence gathered from several of the UK studies indicated inaccuracies in the records held by the screening programme and reported failure of screening appointment invitations to reach women.

Conclusion The majority of the interventions focused on the women themselves and providing them with accessible information about the screening programme. Service providers need to consider the format and the presentation of the materials they are using to ensure that they are in a format that is acceptable, accessible and most helpful to the women. Relying on translated versions of standard information leaflets is unlikely to be sufficient to enable women to understand enough about the programme and its relevance to them to enable them to make an informed screening decision.

It is also important to effectively engage with women and provide them with opportunity to explore and address their individual needs and concerns about screening. Some women may also require assistance in accessing and navigating the service. Community workers such as lay health workers are ideally placed to provide such assistance. A critical examination of the local processes of the NHS BSP could be highly productive in identifying factors that may be impacting adversely and disproportionately on women from minority ethnic populations. Addressing these has the potential to not only improve uptake in these women, but also to ensure equity of access and improve service efficiency.