The research found that 61% of patients feel isolated from the early breast cancer (EBC) community, with over two thirds (72%) stating more could be done to provide greater access to new treatments. In addition, nearly half (48%) said that once they had received an advance breast cancer (ABC) diagnosis they weren’t provided with sufficient resources about the wider aspects of ABC such as emotional and financial support.
Diana Jupp, Director of Services at Breast Cancer Care, said: “We know from supporting people living with secondary breast cancer that many have specific needs that simply aren’t being met.
“This is a patient group who are being overlooked and these findings highlight the gaps in support. We will continue to campaign to improve the standards of care for people living with this complex disease so that they receive the expert support that they need.”
While an overwhelming majority of women feel they receive enough support from nurses (88%) and oncologists (86%), 48% of patients expressed that they would like to have more time to discuss their wider needs during consultations with healthcare professionals.
Gill Donovan, Breast Oncology Nurse Specialist and Research Fellow at Cardiff University, said: “These results need to be listened to. Approximately half the patients have unmet needs; we must try and ensure that all women feel supported by all professionals caring for them.
“The wider impact of ABC is not just about the physiological effect of the disease but also encompasses the psychological, practical and spiritual aspects on both the patient and their families.”
The research also revealed concerning findings about the personal impact of ABC, with 72% of patients stating their emotional health has been negatively affected by the disease. The vast majority (78%) also said that friends and family close to them have been negatively affected by their diagnosis.
Honey Langcaster-James, Lecturer in Psychology, University of Hull, said: “The psychological and emotional impact of a serious life limiting illness should not be underestimated. These findings highlight the need for health practitioners, families, friends and society as a whole to be mindful of, and responsive to, women's emotional and psychological needs after diagnosis.”
The research, commissioned by Novartis Oncology, is launched as part of a digital report in partnership with leading UK experts, who have heralded the new findings which help to further improve awareness of ABC and understanding of the key barriers to improved patient outcomes.
The report includes insights gleaned from a patient survey which included 60 ABC patients from all over the UK. These respondents were recruited predominantly through Breast Cancer Care’s network as well as individual healthcare professionals to ensure all voices were heard.