Patient information in oncology has failed to keep pace with the latest innovations, according to a new multinational survey of patient and carer groups.
Commissioned by AstraZeneca, PatientView surveyed 124 cancer-oriented patient and carer organisations across 39 countries in May.
They found a growing need for clearer, more accessible information on the science behind the latest cancer treatments.
Almost 60% of respondents said cancer science is not properly explained to patients and the public, with only 7.3% agreeing that vital information – such as consent forms for clinical trials – are easily understood by patients.
A new generation of cancer treatments have rapidly become the industry benchmark, with advances in immuno-oncology – where a patient’s immune system is harnessed to fight the disease – driving a range of innovations.
Just over half of the cancer patient groups surveyed agreed that scientific understanding of cancer has accelerated in recent years, but the majority did not feel that these advances had been satisfactorily communicated to the patients they support.
Over 80% of respondents said they had been asked by patients or carers about immuno-oncology, while 66.7% had been asked about biomarkers and gene mutations associated with cancer.
The survey showed that most believe patients want to know how their treatment works, with 54.5% agreeing that patients need to understand relevant scientific concepts to not only improve their clinical outcomes but also their quality of life.
Increasing awareness of cancer treatment options is therefore a high priority for over half of the organisations, however the survey also found that the largest barrier to communicating cancer developments to patients was a general lack of familiarity with basic scientific concepts.
To tackle this, the respondents said simple, useful scientific information free from jargon would be of most use to patients and carers, particularly as an easily-accessible online platform embedded in social media.
The availability of information in a number of languages was also of chief importance, as was establishing an unbiased dialogue between patients and pharma to limit the creation of ‘false hope’ media stories.
In a statement, PatientView called the survey a “clear call to action to everyone who works on education initiatives for people who are living with cancer: make it clear and understandable, and make it accessible”.