Cancer patients under 55 want more of a say in the decisions made about their treatment, according to new research being published in the British Journal of Cancer.
The research also shows that ethnic minorities and patients with rectal, ovarian, multiple myeloma and bladder cancers are more likely to feel they aren’t being given a big enough say in how they are treated.
Researchers funded by the National Institute for Health Research at the University of Cambridge looked at more than 40,000 responses to the 2010 English National Cancer Patient Experience Survey. More than 70 per cent said they felt suitably involved in decisions about their treatment. But younger patients in particular responded to the survey saying that decisions are made without enough of their personal input.
Dr Anas El Turabi, study author based at the University of Cambridge, said: “Although the overall results are very positive and most patients do feel suitably involved in their treatment decisions, there are distinct groups where this isn’t the case and we need to address this. There appears to be a generation gap, possibly because younger patients expect to have more of a say in their treatment than older patients.
“This study should help us to focus on those groups of patients who feel the least involved. This means doctors, nurses and the patients themselves need to work together and build strong relationships that allow them to discuss treatment options in every case. Some patient groups may also need extra support to make sure they’re properly involved in making these decisions, such as having a longer consultation with doctors or specialist nurses.”
Dr Georgios Lyratzopoulos, study author based at the University of Cambridge, said: “This evidence highlights the importance of studying the experience of cancer patients using large national patient surveys. We won’t know if we are getting better at meeting patients expectations unless we continue to invest in national surveys of patient experience.”
Martin Ledwick, head information nurse at Cancer Research UK, said: “All patients should feel entitled to discuss the options available with their doctors and nurses and be given the chance to do so. It’s important that they’re made to feel more like the co-pilots, rather than the passengers, on their own cancer journeys.
“Doctors want the best possible outcome for you when they’re considering the most appropriate treatment but that doesn’t mean the treatment will always suit every patient. Being able to talk freely about different options will help patients feel more involved.
“Anyone with questions about any aspect of cancer and its treatment can call Cancer Research UK’s nurses on freephone 0808 800 4040.”
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El Turabi, A., Lyratzopoulos, G. (2013). Variation in reported experience of involvement in cancer treatment decision making: evidence from the National Cancer Patient Experience Survey British Journal of Cancer DOI: 10.1038/bjc.2013.316
The NHS defines ‘Shared Decision Making’ as “a process in which patients, when they reach a decision crossroads in their health care, can review the treatment options available to them”. More information can be found on the NHS Right Care website.