Setting Priorities for lobular breast cancer research: a patient-led consensus study

Coulthard, H1; Quincey, K1; Williamson, I1; McHattie, LW2 [HC1]
1 De Montfort University, Leicester; 2 Lobular Breast Cancer UK.

Contact: Helen Coulthard at

AT LBCUK, the patient always comes first.  We want to ensure that our goals and actions at LBCUK are based on the main issues and needs of patients, so that we can make the right changes.

During July and August 2020, we worked with Health Psychology researchers Dr Kerry Quincey and Iain Williamson from De Montfort University, Leicester, to deliver three Public and Patient Involvement (PPI) meetings. PPI meetings ensure that research is done ‘with’ and not ‘on’ members of the community affected. The purpose of the PPI meetings was to identify the key challenges for lobular breast cancer patients; what aspects of healthcare and support need improving for patients;  what are the key gaps in their knowledge; and are there preference in research methods for findings out these answers? From these initial findings we developed this research study.

In this Delphi study, a type of research that asks people to define their priorities, we want to find out what are the key issues for patients with a diagnosis of lobular breast cancer.

We are incredibly grateful to over 50 women who are generously sharing their experiences and thoughts about their diagnosis as they take part in this trial. 

We hope to have the first findings early in 2022.

To find out more about the trial, please contact Helen Coulthard,

Helen is a Trustee of LBCUK and has had a lobular breast cancer diagnosis

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Lobular Breast Cancer UK is a registered charity in England and Wales No. 1191402 Registered office: 83 Ducie Street, Manchester M1 2JQ