Nearly half of cancer patients don’t feel involved in treatment decisions, survey finds

Carlotta Jarach

Almost half (47%) of patients with cancer do not think that they have been sufficiently involved in the treatment decision process. This is what the international All.Can cancer initiative reveals in its report Patient insights on cancer care: opportunities for improving efficiency, along with other patients’ outlooks concerning support and adequate information and care beyond the disease.

The All.Can patient survey was conducted internationally, with adapted versions in 10 countries, and aims to obtain patients’ perspectives on where they felt they faced inadequacy in their care, looking at the entire care continuum as well as the broader impact of cancer on their lives.

“Patients are often forgotten when it comes to cancer care planning,” said Alex Filicevas, Head of EU Affairs at the European Cancer Patient Coalition and member of All.Can international’s steering committee. “With the prevalence, complexity and costs of cancer rising across the globe, it is imperative to listen to what patients say would improve their experience of care. Ignoring the findings of this report would be a missed opportunity to do the right thing by patients and make changes that could make a real difference.”

Almost 4,000 respondents took part who were affected by different cancers, and based on their answers four areas where to intervene were identified. The first area is the diagnosis itself:  for many cancers, an early diagnosis can improve survival, but according to the respondents almost a third (32%) of whose cancer was diagnosed outside of a screening programme said their cancer was diagnosed as something else, either once or even multiple times, and a quarter (26%) stated their initial diagnosis was the most inefficient part of their cancer care journey. Another possible theme is the cited information-sharing process, where 39% of respondents were mot given enough support to deal with any ongoing symptoms and side effects. In that, the issue was more prevalent among people with more advanced cancers. Integrated care is not a reality for everyone yet: 69% patients in fact said they needed psychological support either during or after their cancer care, but a third (34%) of them said it was ‘not available’. The fourth and last area identified by the survey, was regarding the financial issues:  26% of the respondents reported a loss of employment income and 36% of them cited travel costs as a financial implication of their cancer care and treatment.

“It is so important that, as physicians, we listen to what patients are telling us in this survey,” said All.Can international member Christobel Saunders, breast cancer surgeon and Professor of Surgical Oncology at the University of Western Australia. “Each of the areas identified represents an opportunity to improve cancer care for patients and provide truly patient-driven care.”

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