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Collins, Karen; Mcclimens, Alex; Mekonnen, Stella; Wyld, Lynda (2014)
Publisher: John Wiley & Sons
Languages: English
Types: Article

Objective: To examine the compass and nature of relevant research and identify gaps in the current evidence in order to determine the priority of future research about breast cancer and intellectual disability (ID).


Methods: A scoping study that comprised of a consultation exercise with a wide range of key stakeholders (n = 26) from one northern city (Sheffield) within the UK.


Results: This study identified numerous gaps in the current evidence base. It highlighted a dearth of research that focuses specifically on the information and support needs of women with IDs (and their carers) across the breast cancer patient pathway. Within the interviews, whilst ‘reasonable adjustments’ were being made and there was evidence of good practice, they were neither strategic\ud nor systematic. Participants suggested that future research should focus on devising protocols to advise on the legal, ethical and clinical imperatives so that clinical governance in this area is assured.


Conclusions: There remains a dearth of research or practice guidelines at every stage of the breast cancer care pathway for women with ID. This may arguably lead to late diagnosis, suboptimal treatment and management and overall survival rates for this group. Further research is needed to understand the specific information and support needs of both women with ID (and their formal and informal carers) through the breast care pathway and to identify appropriate protocols, strategies and interventions in order to address these.

  • The results below are discovered through our pilot algorithms. Let us know how we are doing!

    • 1. O'Regan P, Drummond E. Cancer information needs of people with intellectual disability: A review of the literature. European Journal of Oncology Nursing 2008; 12: 142-147.
    • 2. Department of Health. Reducing Cancer Inequality: Evidence, Progress and Making it Happen - a report by the Na tional Cancer Equality Initiative. March 2010a. London: The Stationary Office, 2010a.
    • 3. Patja, M. Iivanainen, H. Vesala, H. et al. Life expectancy of people with intellectual disability: a 35-year follow-up study Journal of Intellectual Disability Research 2000; 44: 591-599.
    • 4. Department of Health Valuing people now-a three year strategy for people with learning disabilities. London: The Stationary Office, 2009.
    • 5. Department of Health. Valuing people: a new strategy for learning disability for the 21st century London: London: The Stationary Office, 2001.
    • 6. Department of Health. Improving outcomes: A strategy for cancer. Jan 2011 London: The Stationary Office, 2011a.
    • 7. Department of Health. Equity and Excellence Liberating the NHS. July 2010 London: The Stationary Office, 2010b.
    • 8. Department of Health. Improving outcomes: A strategy for cancer. Assessment of the impact on equalities Jan 2011 London: The Stationary Office, 2011b.
    • 9. Department of Health The NHS in England: The operating framework for 2009/10. London: The Stationary Office 2008.
    • 10. Bittles AM et al (2002) The influence of intellectual disability on life expectancy. The Journals of Gerontology Series A: Biological Sciences and Medical Sciences 2002; 57: 470-72
    • 11. National Institute for Health and Clinical Excellence. Quality Outcomes Framework Indicator Development Programme. Briefing Paper: Learning Disability 2010/11.
    • 12. Disability Rights Commission. Equal treatment: closing the gap. Health formal investigation Report. London: Disability Rights Commission, 2006.
    • 13. Robertson J, Roberts H, Emerson E. Health Checks for People with Learning Disabilities: A systematic Review of Evidence. Improving Health and Lives Learning Disabilities Observatory.2012.
    • 14. Emerson E, Baines S, Allerton L, Welch V. Health Inequalities and People with Learning Disabilities in the UK: 2012 Improving Health and Lives: Improving Health and Lives Learning Disabilities Observatory.2012.
    • 15. Michael J, Richardson A. Healthcare for All: The Independent Inquiry into Access to Healthcare for People with Learning Disabilities", Tizard Learning Disability Review 2008: 13: 28 - 34.
    • 16. Willis, D Breast Screening: participation of women with intellectual disabilities Learning Disability Practice 2013; 16: 24-26.
    • 17. Emerson E, Copeland A, Glover G. The Uptake of Health Checks for Adults with Learning Disabilities 2008/9-20010/11. Improving Health and Lives: Learning Disabilities Observatory.2011.
    • 18. Mencap. Death by Indifference. London: Mencap, 2007.
    • 19. CRUK, 2013. CancerStats Key Facts 2013. http://www.cancerresearchuk.org/cancerinfo/cancerstats/keyfacts/cancerstats-key-facts-on-cancer. Accessed 13 May 2013.
    • 20. Tuffrey-Wijne I, Hogg J, Curfs L. End of life and palliative care for people with intellectual disabilities who have cancer or other life-limiting illness: a review of the literature and available resources. Journal of Applied Research in Intellectual Disabilities 2007; 20: 331-344.
    • 21. Willis, D Breast Screening: participation of women with intellectual disabilities Learning Disability Practice 2013; 16: 24-26.
    • 22. Sowney M, Barr O. The challenges for nurses communicating with and gaining valid consent from adults with intellectual disabilities within the accident and emergency care service. Journal Clinical Nursing 2007; 16: 1678-86.
    • 23. Tuffrey-Wijne I, McEnhill L. Communication difficulties and intellectual disability in end-of-life care. International Journal Palliative Nursing 2008; 14:189-94.
    • 24. Biswas M, Whalley H, Foster J et al. Women with learning disability and uptake of screening: audit of screening uptake before and after one to one counselling. Journal Public Health (Oxf) 2005; 27: 344-7.
    • 25. Davies N, Duff M. Breast cancer screening for older women with intellectual disability living in community group homes. Journal of Intellectual Disability Research 2001; 45:253-57.
    • 26. Allgar V, Mir G, Evans J et al. Estimated prevalence of people with learning disabilities: template for general practice. British Journal of General Practice 2008; 58: 423-28.
    • 27. Lodge KM, Milnes D, Gilbody SM. Compiling a register of patients with moderate or severe learning disabilities: Experience at one United Kingdom general practice. Mental Health in Family Medicine 2011, 8: 29-37.
    • 28. Chauhan U, Kontopantelis E, Campbell S, et al. Health checks in primary care for adults with intellectual disabilities: how extensive should they be? Journal of Intellectual Disability Research 2010; 54 :479-86.
    • 29. Turner S, Robinson Health Checks for People with Learning Disabilities: Implications for actions for commissioners. Improving Health and Lives Learning Disabilities Observatory.2012.
    • 30. Lennox NG, Diggens JN, Ugoni AM. The general practice care of people with intellectual disability: barriers and solutions. Journal of Intellectual Disability Research 1997; 41: 380-90.
    • 31. Stanley R. Primary healthcare provision for people with learning disabilities: a survey of general practitioners. Journal of Learning Disabilities for Nursing, Health and Social Care 1998; 2 : 23-30.
    • 32. Stein,K. Caring for people with learning disability: a survey of general practitioners' attitudes in Southampton and South-west Hampshire. British Journal of Learning Disabilities 2000; 28: 9-15.
    • 33. NHS National Screening Programme. Equal access to breast and cervical screening for disabled women, 2006. http://www.cancerscreening.nhs.uk/publications/cs2.html. Accessed 13 May 2013.
    • 34. Tuffrey-Wijne I, Hollins S, Curfs L. Supporting patients who have intellectual disabilities: a survey investigating staff training needs. International Journal of Palliative Nursing 2005; 11: 182-188.
    • 35. Glover G, Emerson E, Eccles R Using Local Data to monitor the health needs of People with Learning Disabilities Improving Health and Lives Learning Disabilities Observatory.2012
    • 36. The National Cancer Patient Experience Survey Programme. 2010 Survey Report. Department of Health. Dec 2010.
    • 37. Heslop P, Blair P, Fleming P et al. Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD), University of Bristol, 2013.
    • 38. Arksey H, O'Malley L. Scoping studies: towards a methodological framework, International Journal of Social Research Methodology 2005; 8: 19-32.
    • 39. Ritchie J, Spencer L Carrying out qualitative analysis. In Qualitative Research Practice. Ritchie J, Lewis J (eds) 2003; 219-262. Sage Publications: London.
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