Public Release: 

Cancer patients want more shared-decision making about their treatment

Research could have important implications for shared-decision making policies

University of Cambridge

A new study of cancer patients indicates that certain patient groups have unmet needs for greater involvement in decisions about their treatment.

Cancer patients under 55 and those with some rarer types of cancer want more of a say in the decisions made about their treatment, according to new research being published in the British Journal of Cancer today (Wednesday). Recently, several US states have introduced legislation or other policies supporting share-decision making.

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.

Scientists 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, said: "Although there are differences between the US and UK healthcare systems, we would expect to find similar variation between American patients with different cancers.

"Additionally, this evidence highlights the importance of studying the experience of cancer patients using large national patient surveys such as in the UK, and we feel similar US-wide surveys of this kind would be very useful in identifying those patients who feel side-lined during decisions around their own treatment for cancer."

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."

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For additional information please contact:

Genevieve Maul, Office of Communications, University of Cambridge
Tel: direct, +44 (0) 1223 765542, +44 (0) 1223 332300
Mob: +44 (0) 7774 017464
Email: Genevieve.maul@admin.cam.ac.uk

Notes to Editors:

About shared-decision making

The US Informed Medical Decisions Foundation defines shared decision making (SDM) as a collaborative process that allows patients and their providers to make health care decisions together, taking into account the best scientific evidence available, as well as the patient's values and preferences, see http://informedmedicaldecisions.org/what-is-shared-decision-making/

About the British Journal of Cancer (BJC)

The BJC is owned by Cancer Research UK. Its mission is to encourage communication of the very best cancer research from laboratories and clinics in all countries. Broad coverage, its editorial independence and consistent high standards have made BJC one of the world's premier general cancer journals. http://www.bjcancer.com

About Cancer Research UK

  • Cancer Research UK is the world's leading cancer charity dedicated to saving lives through research
  • The charity's pioneering work into the prevention, diagnosis and treatment of cancer has helped save millions of lives.
  • Cancer Research UK receives no government funding for its life-saving research. Every step it makes towards beating cancer relies on every pound donated.
  • Cancer Research UK has been at the heart of the progress that has already seen survival rates in the UK double in the last forty years.
  • Cancer Research UK supports research into all aspects of cancer through the work of over 4,000 scientists, doctors and nurses.
  • Together with its partners and supporters, Cancer Research UK's vision is to bring forward the day when all cancers are cured.

For further information about Cancer Research UK's work or to find out how to support the charity, please call 0300 123 1022 or visit http://www.cancerresearchuk.org. Follow us on Twitter and Facebook

About NIHR

The National Institute for Health Research (NIHR) is funded by the Department of Health to improve the health and wealth of the nation through research. Since its establishment in April 2006, the NIHR has transformed research in the NHS. It has increased the volume of applied health research for the benefit of patients and the public, driven faster translation of basic science discoveries into tangible benefits for patients and the economy, and developed and supported the people who conduct and contribute to applied health research. The NIHR plays a key role in the Government's strategy for economic growth, attracting investment by the life-sciences industries through its world-class infrastructure for health research. Together, the NIHR people, programmes, centres of excellence and systems represent the most integrated health research system in the world. This article presents independent research funded by the National Institute for Health Research (NIHR). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. For further information, visit the NIHR website (http://www.nihr.ac.uk).

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