New findings launched recently from a nationwide Realities of living with ABC survey on breast cancer have revealed the true extent of the personal, social and psychological burden of the disease, highlighting significant support gaps for this overlooked patient population.
Research uncovers stark realities of life with advanced breast cancer (ABC) and the lack of support experienced by women living with the disease with 71% of patients saying more could be done to improve access to new treatments. Leading UK experts call for greater action to improve the level of care and support available to patients.
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 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%),1 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, comments: “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 has 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, says: “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. These findings are shared with the breast cancer community in the hope that, collaboratively, we can work towards reducing the personal and emotional effect of ABC."
The findings from the survey demonstrate there is further need for:
• Healthcare professionals to recognise their ABC patients may need more from them
• Payers, regulators and commissioners to improve their understanding of the ABC landscape and consider their responsibilities when making decisions about access to care
• Patient support groups to build and enhance their capabilities and to increase their support for women throughout the whole breast cancer journey
• Women with ABC to feel that they are not alone and that together they can achieve more
• The general public to deal with the wider emotional and psychological needs of women living with ABC
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.
Related story: Benefits of Herceptin outweigh harm