ICCN 17

Oncology nursing and survivorship

Catherine Glennon – The University of Kansas Cancer Center, USA


Can you tell us about your session on delivering survivorship care?

We collaborated with the university where I work and we collaborated with the Oncology Nursing Society and did a very broad reaching e-survey, or electronic survey, and reached out to the nurses to see how much the nurses, what their knowledge level was for survivorship, regarding survivorship. Because survivorship is such an important component of oncology nursing and we were not quite sure what the status of survivorship was in the United States. So the Oncology Nursing Society, or ONS, has a very strong focus on survivorship and has actually stated that in their strategic plan. So KU collaborated with ONS and we reached out to over 25,000 members as well as a special interest group, the survivorship special interest group. It could be an academic centre, it could be community based, it could be any nurse that was a member of the Oncology Nursing Society. So we reached, there were 399 nurses that actually completed the survey and that’s where we gleaned our information on what the knowledge level was of the different nurses. We also did look at their levels of experience too, their educational preparedness, if they were Bachelors or Masters prepared, and we looked at their years of oncology nursing.

What were the findings of the survey?

We found out that their knowledge was strongest in areas like fatigue and anxiety and fear of reoccurrence, those were the areas that they knew the most about, but it was definitely very clear that their areas that they needed more information or that they were less comfortable with their knowledge was regarding finance, employment and insurance for our patients.

Do you have any plans to use this information in an educational manner?

Yes, we published our results so that anyone can take this information and assess their nurses or make plans regarding what we’ve already found out from the general population of oncology nurses. They can build that into their curriculum or into their institutional plan for education but we are actually, at KU, at the University of Kansas and with some affiliates, we’re developing an e-module, an electronic module, that will go through all the different… there are several different programmes or topics that are related to survivorship care – fatigue, this employability insurance, all the different elements that we assessed in our survey we’re going to build a curriculum around it by the experts throughout the nation, it’s not just KU driven. But, for instance, sexuality is one so we’re bringing in experts from that area to help us with the curriculum content and then that will be available to the nurse to take at her own pace, his or her own pace electronically, and also they will get CUs or continuing education from it.

Can you tell us about your other presentation?

The other presentation is regarding the international study that we did in collaboration with Pfizer, that was funded by Pfizer, and it is regarding the psychosocial support of women with metastatic breast cancer. So we looked at different areas that they felt was there enough information out there, enough educational material for these patients, did they have enough resources to draw on to meet their psychosocial needs? Our first results were based off of nine countries, it was, as I said, international. We had nine countries, a hundred from each, so we had around nine hundred participants and this was a survey that took 30 minutes in their native language or we had a translator to deliver the survey in their native language. We looked at those results to see what did they need and how could we, as oncology nurses, focus on their needs. I should back up to say this is multidisciplinary so I was the only oncology nurse on the panel, there was an oncology physician, social worker and different disciplines and I represented oncology nursing in North America. This is made up from different countries that served as an advisory group. Those results were delivered two years ago at the last ICCN meeting, in the meantime we added four more countries so now we have thirteen countries’ results, over 1300 patients that we surveyed to see where did we excel or need assistance with in meeting their psychosocial needs. For instance, we found out that they are a group that are very interested in knowing more and being informed and being able to be informed decision makers regarding their care and treatment and that they find it difficult to find that information. They also, when we ask how would it be best to give you the information, they stated the best way would be web-based. So now nurses and others can use this survey to base their interventions and we need to think more about putting electronic material out there instead of all in written pamphlets. I think one of the reasons behind that is because in the world of oncology treatment, things change so rapidly that by the time you read a pamphlet there may be something new and so you always have to go and investigate it on the internet because you want to make sure that you have the most recent information. So if we base our efforts there we can quickly change and update it, more so than you could ever do in a written format.

We also looked at different feelings, like in Egypt they’re diagnosed at a much younger age with metastatic cancer, as opposed to other developing countries that are diagnosed at a later age. A lot of times they may be diagnosed with early stage breast cancer that goes in to metastatic. So there are many different findings that are very applicable to what we do. How we are perceived by the patients, we ask their thoughts about were they getting enough psychosocial support from their caregivers, being their nurses, their physicians, and we ranked them to see who was giving them the most support and the nurses and physicians ranked very high, social workers and some others, like chaplains, were towards the lower end. So we need to be aware of that.