Cancer survivors' preferences for follow-up care - going beyond the consultant
2019-12-11

The number of people living with cancer in Scotland is almost quarter of a million - and growing. Many cancer survivors feel they are not getting the help they need; staff shortages in the National Health Service (NHS) could be contributing to this situation.

The Chief Executive of Macmillan Cancer Support has described rising numbers of people living with cancer amid staffing shortages and unprecedented pressures on NHS and social care professionals, and calls this a ‘perfect storm’.

Macmillan have called for a cancer workforce that is ‘fit for purpose’. They explain that as well as good treatments, many people living with cancer also want more support for their emotional, practical or financial needs.

Follow up image

In the UK, most patients who have been treated for cancer move into ‘follow-up’ care. This usually means having regular follow-up appointments with a consultant. However, with more and more people surviving cancer, consultant-led cancer follow-up is becoming overstretched and more expensive. We need to find new ways of providing  follow-up care as it might be better to spend the funding for cancer follow-up in a different way. It is also important to know what patients want from their follow-up and what kind of services they would like to use.

Which aspects of follow-up are important to patients?

We started to answer this question by first reading existing research articles, and then interviewing people who had been treated for cancer. We identified eight attributes (characteristics) that people want to have included in their cancer follow-up care. Each of those attributes could have different ‘levels’:

Table

We used this information to develop a discrete choice experiment (DCE), a method used in economics to measure preferences. You can find out more about DCEs in this short video.

The DCE questionnaire was sent to people with a diagnosis of one of four cancers: breast; prostate; colorectal; or melanoma. We asked participants to answer 16 choice tasks in which they had to choose between two different follow-up services. These services were described using the attributes and levels listed above.

Using the results of the DCE, we were able to find out that:

Cancer survivors had a strong preference to see a consultant during a face-to-face appointment.

However, when compared to standard consultant-led follow-up, cancer patients would accept follow-up by a registrar (trainee consultant), GP or specialist nurse as long as they always saw the same person at every appointment (continuity of care).

We also found that the type of cancer survived appeared to influence preferences for follow-up, including the healthcare professional providing the care. For example:

GP follow-up

  • People with either prostate cancer or melanoma would probably accept follow-up by a GP (instead of standard consultant care), providing they always saw the same GP.

BUT

  • Continuity of care was not enough to compensate either breast or colorectal cancer patients for seeing a GP instead of a consultant.

Specialist nurse follow-up

  • Breast cancer patients would much prefer specialist nurse follow-up (compared to standard consultant follow up), providing they always saw the same nurse.

BUT

  • Continuity of care was not enough to compensate other cancer patients for seeing a specialist nurse instead of a consultant.

However, patients with any of the four cancers would prefer follow-up led by any of the alternative providers as long as they were compensated with all other benefits, i.e. the service had continuity of care, took place in their preferred location, and provided one-to-one counselling and dietary advice.

What does this mean for policy?

A shortage of consultant cancer specialists means that NHS cancer services are overstretched. One idea to increase capacity would be to use registrars, specialist nurses or GPs to provide follow-up care. The question is, would that be acceptable to patients? Our results suggest yes - as long as they are compensated with other benefits.  

 

The full published article on the study is available via open access:

Murchie, P., Norwood, P. F., Pietrucin-Materek, M., Porteous, T., Hannaford, P. C. and Ryan, M. (2016) 'Determining cancer survivors' preferences to inform new models of follow-up care', British Journal of Cancer, 115, 1495-1503.

Thanks to Terry Porteous for her work in developing this Blog post.

 

HERU is supported by the Chief Scientist Office (CSO) of the Scottish Government Health and Social Care Directorates (SGHSC). The views expressed here are those of the Unit and not necessarily those of the CSO.

Published by HERU, University of Aberdeen

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