PROs at the centre of cancer care

Chemotherapy or supportive and palliative care? Its a question which oncologists are increasingly addressing with their patients. People with advanced solid tumours, that is cancers which have spread to secondary sites, are very rarely curable, although maintaining stable disease for a significant time is increasingly possible. Symptomatic treatment with the aim of delivering a high quality of life may be preferable to a so-called curative approach.

One of the communication challenges is the widespread belief that chemotherapy in these circumstances will deliver a cure. Oncologists can do their best to help patients to understand the situation but they cannot educate family and friends. Patients often lack the necessary mastery of the information or the skills to convince their family of the reality. Family pressures to undergo chemotherapy can be very real for those who are already vulnerable.

The new targeted therapies do change the picture for some patients. If your tumour carries a genetic or biological target which is treatable extra time can be bought, sometimes with few side effects, although there can be a financial cost and cure remains rare. These drug costs are becoming a significant part of the NHS cancer drugs budget and the struggle to keep costs under control is highlighting the challenge which society faces, to understand the holistic value of these treatments.

Value lies in the underlying reality that secondary solid tumours kill their host. Patients without secondary tumours usually survive their cancer. Treatment with high cost drugs to prevent secondaries is a ‘holy grail’ for pharmaceutical companies, the demand would be very profitable. Their urge for acceptance of their costly new treatments excites the media, which rarely reports the realities.

Today’s realities offer a different picture. Early diagnosis and skilled primary treatment are the surest ways of delivering better survival. The renewed NHS focus on this is welcome. Cure represents value. However, there will always be people who, for whatever reasons, present late and with secondary tumours. Proper supportive care is needed for them and the NHS is not as good at responding to this need as it could be either in primary or secondary care. Attention to value is required.

The value issue principally focuses on those with secondary tumours which develop while in follow-up or care. How does treatment affect a patient’s life, whether that is chemo, new targeted drugs, interventions such as surgery or radiotherapy, or symptomatic care. What is the balance with cost? Health economics looks at ‘cost effectiveness’ but this is more about how a patient clinically responds, and for how long, to any treatment rather than how it affects their life.

Looking to meet the modern demand for an acronym Value can be defined this way (from a patient viewpoint):

Variations in my Actual Life and Usual Experience

Attempts to look more holistically at value to capture actual life and usual experience through the lens of patient reported outcomes (PROs), are still at an early stage. The tools which have been developed so far are clumsy and the challenges of implementing them effectively are still being worked out. There are good people working on this (not enough of them are actual patients) but many research organisations give it a low priority so funding is small and progress slow.

Regulators and legislators need to step into this area. Their work is increasingly relying on good data drawn directly from patients. The oncologist and patient who today are having that difficult conversation about chemo or not need the data too. Patient Reported Outcomes are the future shape of healthcare regulation and practice. They are not a nice add-on which appeals to ethics committees, they are an essential element in the science of treating people with disease. PROs can deliver an understanding of real Value to society. They must be taken seriously.