Making decisions about treatment

Summer 2011

Sarah Scott, Patient Information Navigator and Research Assistant and Dr Hacking, Clinical Psychologist, on piloting decision navigation for people newly diagnosed with breast and prostate cancer.

A cancer diagnosis can be very overwhelming, particularly when people have to make decisions about treatment shortly after receiving the news.

 

From 2008–10, the Edinburgh Cancer Centre trialled the decision navigation (DN) intervention[1,2] to see if it would help increase patient participation in shared decision making. Funded by Macmillan, the DN intervention was trialled with two groups of people newly diagnosed with breast cancer and prostate cancer. Participants were randomised to receive DN or usual care (control) – 114 people with prostate cancer (62 DN, 52 control) and 65 people with breast cancer (30 DN, 35 control).

 

DN participants met with a ‘navigator’ prior to initial treatment consultations to create a question list for the consultation. This was facilitated by the SCOPED model.[3] It encourages patients to think about: their situation; treatment choices; personal objectives; key people involved in their care; evaluating risks and benefits of treatment; and deciding which treatment is best.

 

The navigator attended the consultation to encourage participants and consultants to incorporate the question list into the discussion and to provide participants with an audio recording of the consultation. A summary of the consultation was also sent to the participant, the GP and consultant. Each participant completed a questionnaire and a group of 20 patients and eight consultants was interviewed.

Results

Prostate cancer group

Statistical evaluation of questionnaires over six months revealed people in the DN group, when compared to people in the control group, had:

 

- greater confidence in decision making

 

- less regret associated with the treatment decision

 

- less uncertainty associated with decisions.

 

Breast cancer group

There were no statistically significant results for this group, possibly due to small sample size. Qualitative feedback DN participants felt that the doctor was prepared for them: ‘The fact that he was already aware [of my issues] meant that he got some answers to those questions before I had asked them.’

 

Participants felt actively involved in the consultation and said that DN facilitated their decision making. Listening to the CD afterwards helped reassure them. Consultants said DN increased patient confidence and support incorporating it into cancer care.

Future work

All four prostate cancer consultants involved in the study are applying for funding to provide audio recordings to their patients. We are also looking at incorporating question listing into Macmillan roles. The team are now assessing the longitudinal impact of DN for people with malignant brain tumours and colorectal cancer.

References

1. Belkora J. Mindful Collaboration: Prospect Mapping as an Action Research Approach to Planning for Medical Consultations. 1997. Department of Engineering-Economic Systems and Operations Research. Stanford University: Stanford. Available from the UMI dissertation archive.

 

2 Sepucha KR, Belkora JK, Mutchnick S, Esserman LJ. Consultation planning to help breast cancer patients prepare for medical consultations: effect on communication and satisfaction for patients and physicians|. Journal of Clinical Oncology. 2002 June 1;20 (11):2695– 700. 

 

3. SCOPED|.  (accessed April 2011).

Further information

Email Sarah Scott|, Patient Information Navigator and Research Assistant and Dr Hacking, Clinical Psychologist, Edinburgh Cancer Centre, Western General Hospital.