Cancer is a leading cause of illness and death in Europe. While more people now survive cancer, the improvement in survival rates is slower among older people and those with multiple long-term conditions. Many still face incurable disease.
Living with incurable cancer has a significant impact on an individual’s daily life and wellbeing, limiting their ability to carry out basic tasks, such as washing and dressing, and to take part in family and social life. It also puts stress on family caregivers and increases demands on healthcare services, with costs across Europe estimated at €199 billion (2018).
Palliative and end of life care researchers at ARC South London, led by Dr Joanne Bayly and Professor Matthew Maddocks, are carrying out research to see whether short-term rehabilitation can help improve quality of life for people affected by incurable cancer and ease the burden of care for their families or informal caregivers. They are also seeing whether it reduces the need for hospital or nursing care. The aim is to improve the quality, availability and cost-effectiveness of palliative care.
If positive, the results could lead to a better quality of life for those affected by incurable cancer, by reducing the burden of symptoms and disability and allowing people to lead a fuller life, taking part in everyday activities and social life. Our aim is for this type of rehabilitation to be integrated into routine care for people with incurable cancer
The researchers will assess cost-effectiveness in hospital and outpatient care, as well as for informal caregivers. They will also take into account structural and social inequalities in south London, examining whether the intervention is more successful for some patients than others, as well as how the intervention may be experienced differently across cultures and socio-economic groups.
The model of palliative rehabilitation, called INSPIRE, has been designed specifically for people with incurable cancer. It aims to support people to manage their condition and the impact it has on their lives, so that they can live fully and experience the highest quality of life possible. This involves:
The rehabilitation can be delivered in a variety of settings, including at home, in hospital, in care homes and hospices, and in community-based settings.
The project is a multinational randomised controlled trial of the INSPIRE intervention across five European countries – Denmark, France, Italy, Norway and UK – involving 340 participants. We will compare health services in these nations to understand how rehabilitation is integrated into oncology and palliative care services. Alongside this we will evaluate implementation, equity and access.
During data analysis, we will review other research evidence to connect our findings to existing knowledge, forming an international rehabilitation framework for incurable cancer patients. Throughout the project, we will involve health professionals, public and patients, including the European Cancer Patient Coalition, the largest European association for people with cancer.
The project involves a multidisciplinary team across Europe. Coordination is led by the Hospices Civils de Lyon and scientific management by King’s College London.
Other partners are the European Association for Palliative Care, Fondazione IRCCS Instituto Nazionale dei Tumori, Azienda Unita Saintaria Locale di Reggio Emilia, Syddansk Universitet, Universitetet I Bergen, European Cancer Patient Coalition, Region Syddanmark, Lyon Ingenierie Projets and the University of Edinburgh.
The involvement of patients, service users, public and carers is essential to the project. In developing the research, it was discussed at two Cicely Saunders Institute co-design workshops. It was also presented to the ARC South London Public Research Panel.
The project has been adopted by ARC South London is expected to finish in August 2026.
