Lived experiences of survival following cancer treatments

Dr Nwamaka Lasebikan - University of Nigeria Teaching Hospital, Ituku-Ozalia, Nigeria

What was the panel session you were part of about?

So the session was a panel session and it was essentially looking at lived experiences of a survival following cancer treatment. Oftentimes we don’t really pay too much attention, either as policy makers or as clinicians, in the survivorship space.

The session started off with somebody talking about her lived experiences and then thereafter we went into a panel session where we had convened members of the Africa Survivorship Working Group that has been doing some work in that space for a little over two years. The first panellist talked about a scoping review because, like I said earlier on, survivorship care is something that is not really talked about, it’s not really in the limelight as much as it should be on the continent. So there was a presentation on the scoping review that we are rounding up, looking at what literature, what research has really been done around survivorship on the continent.

This was followed on with a presentation by myself, actually, talking about the result of our national cancer control plan review of survivorship in the plans. One thing that was really highly informed was the fact that, out of 54 countries, as of last year when we completed the review there were only 21 countries that had a national cancer control plan which, as we know, really is the roadmap of cancer control strategies at the highest level in a country. Of that 21 countries, the need for survivorship care in those plans was really very scanty. There was, however, a lot of talk around palliative care, which is a little bit different from survivorship care. When we also looked at metrics, indices for metrics, we also found that was only about 40% of the plans that talked about how to measure outcomes of whatever strategies they put into survivorship care.

The session, the last panellist talked about the NCCN having nice guidelines and survivorship care within the guidelines and how a group of experts from the African Cancer Coalition Network met and tried to contextualise the parent guideline into our own setting. One thing that really was highlighted was the need for stigma to be included within survivorship because we know that cancer is still heavily stigmatised and it often really affects the psyche of patients living with cancer.

What are the next steps?

The next steps include trying to, first of all, once the publication is out, disseminate it so that people who are in research and interested in researching palliative care can also see that there is a need for researching survivorship care. Still, again, disseminating the country profiles to national cancer control technical leads at the various country levels so that for those that their plans are about to expire they can see what is lacking and what needs to be put in. A case in point being Nigeria: when we started this project our plan was about to expire, it expired last year. Because of my involvement with the survivorship working group I was able to successfully advocate for survivorship to be included as a standalone entity within our new national cancer control plan.

So we tried to look at some of the strategies that, according to NAM, survivorship care should cover and we tried to prioritise those that we can successfully cover within this new five-year plan. So the next steps will be dissemination; the ICCP has done a good job of putting country profiles of survivorship care plans on their website so that is there for everybody to see. So the next steps will include really trying to get the various countries to see where they are and see how they can better incorporate survivorship care in their plans. Of course, by the time we publish the results of this scoping review, again it will serve as a motivation for researchers to really look into doing research that will improve the quality of life, quality of care for survivorship on the continent.

Is there anything else you would like to add?

Yes, something that came out very strongly was on the need to talk about sexuality. It’s really hush hush on the continent but it’s also an unmet need for women who have suffered from cancer. So we had an experience from one of the participants from South Africa who talked about the work they had done in sexuality and how, impressively, they now have a survivor asexuality expert who stays with them at the clinics and is able to offer sexuality counselling to patients at the time of diagnosis, talking to them throughout treatment and ultimately into survivorship care. Definitely worth emulating.