An Interview with SHORE-C about the LIMBER patient survey

In the summer of 2021 Make 2nds Count awarded a 1-year grant to the Sussex Health Outcomes, Research & Education in Cancer (SHORE-C) group who conduct research in psychosocial oncology at the Brighton and Sussex Medical School. 

SHORE-C used this grant to conduct a UK Survey measuring informational needs & quality of life in women Living with Metastatic Breast CancER (the LIMBER study). The survey was available online from October 2021 to February 2022.

An infographic detailing the results of the LIMBER survey is available here

The principal co-investigators on this research project were Professor Dame Lesley Fallowfield (Director of SHORE-C), Professor Valerie Jenkins (Deputy Director of SHORE-C) and Professor Carlo Palmieri (University of Liverpool).

Make Seconds Count sat down with Professor Dame Lesley Fallowfield and Professor Valerie Jenkins (pictured together) to discuss the LIMBER results and the next steps of this project. Both professors had recently returned from the European Society for Medical Oncology (ESMO) 2022 Congress in Paris where Prof Jenkins presented this work in a poster session.  

Firstly, Prof Dame Fallowfield said “It is fantastic that charities such as Make Seconds Count raise important research funds for research to be conducted in areas that will help patients living with secondary breast cancer. Nearly 5,000 people will be diagnosed with breast cancer per month in the UK and the overall risk of developing secondary breast cancer for most breast cancer patients is between 6% and 22%. Much more research is needed to help and support patients living with secondary breast cancer.”

Prof Jenkins said “We thank Make Seconds Count for providing this important funding that has enabled us to further research what matters most to patients who are living with secondary breast cancer.”

A conversation about LIMBER

When discussing some of the results of the LIMBER study, Prof Dame Fallowfield said “a consistent finding in LIMBER and in other surveys conducted is that whilst there is a lot of emphasis and support with specialist nurses at the diagnosis of primary breast cancer, if patients progress to advance disease the level of support available to them lowers as not all centres have specialist nurses that deal with patients that have more advanced disease”. 

In the LIMBER study only 56.1% of secondary breast cancer patients said they had access to a specialist nurse or key worker.

The LIMBER survey can add to the evidence base that highlights this resource issue and can enable Make Seconds Count and other entities to lobby for better support for the secondary breast cancer patient population.

Prof Dame Fallowfield & Prof Jenkins noted that a number of key points were identified in the LIMBER study. These included:

• The term most preferred by patients is "secondary breast cancer" and not terms such as: "Stage IV", "metastatic" and "incurable". 
• When friends and family did the following, patients found this helpful: taking the patient to appointments, doing errands for the patient (cooking, shopping, housework), listening to the patient, spending quality time with them and telling the patient they were available for them.
• Patients did not appreciate it when friends and family minimalized the situation and either dismissed the patient's diagnosis, underplayed its severity or got secondary breast cancer confused with primary breast cancer.
• Participants detailed advice against using "Dr Google" and encouraged newly diagnosed patients to only use reputable websites or to talk to medical professionals regarding medical questions.
• Many patients (67.4%) said that their emotional needs were not discussed by a doctor or nurse
• The majority (71%) of participants wished they had known about secondary breast cancer earlier.

Future Plans

Prof Dame Fallowfield & Prof Jenkins informed Make Seconds Count that the results of the LIMBER study are being prepared for publication in a peer reviewed scientific journal. The link to this article will be shared on the Make Seconds Count website once published. 

To further the impact of the LIMBER study, SHORE-C has secured an additional grant from the Breast Cancer Research Foundation (an American non-profit organisation) to develop educational materials based on the results of the LIMBER study that can benefit patients, their friends and family and Health Care Practitioners.

For example, materials can be made that detail what patients found their friends and family did that was helpful and not helpful and what terms patients preferred medical professionals to use when describing their condition (i.e., secondary breast cancer).

These materials will be shared with Make Seconds Count, other cancer organisations and Health Care Practitioners.