Support needs and experiences of people living with advanced incurable cancer


Session type:

Florien Boele1,Clare Harley1,Simon Pini1,Lucille Kenyon1,Amrit Daffu-O'Reilly1,Galina Velikova1
1University of Leeds



Patients are living longer with active, advanced, or metastatic disease that cannot be cured, but may be managed (i.e., ‘chronic cancer’). The experiences and needs within this growing group are likely to be different from those shortly after diagnosis, on active curative treatment, or in the palliative or end-of-life phase, yet are poorly defined. We described the experiences and support needs of patients with advanced, incurable but treatable cancer in a quantitative cross-sectional study.


Patients completed the 75-item Chronic Cancer Experiences Questionnaire (CCEQ). Responses were described and linear regression analysis was performed to explore associations between poorer patient experiences and clinical/sociodemographic variables.


In total, 416 patients with prostate cancer (28%), breast cancer (24%), gynaecological cancer (19%), colorectal/gastrointestinal cancer (17%), and renal cancer (12%) completed the CCEQ on average 3 years after diagnosis (range 0-191 months). Younger patients, those who had a longer interval between primary and advanced diagnosis, and those not in a relationship had worse experiences (R2=.098, p<.05). Cancer-specific symptoms were common, with 80% of participants experiencing fatigue. Patients were generally content with management of hospital appointments, provision of information, and making treatment decisions. Areas related to poorest experiences include the co-ordination of care, general practitioner involvement, coping with limitations, and worries and anxieties. 


Psychological burden remains high in the chronic phase of cancer, and patients experience ongoing difficulties in accessing support and services. Younger patients who have been ill for longer and have less social support may be particularly vulnerable, and future studies are needed to investigate the best way to meet the unique needs of this growing patient population.