I did a study in conjunction with Dr Maura Dowling in the University of Galway and what we wanted to do was look at the survivorship needs of post-menopausal breast cancer patients. The reason we did this, the context for it, was survivorship is becoming very prominent here in Ireland. We’re a little bit further behind than the USA and some of our European neighbours in that they have well-established survivorship clinics and survivorship care plans. We don’t have that here in Ireland as yet so it’s in its infancy here and we’re looking at who is going to provide that care and what we’re going to put in survivorship care plans.
I look after post-menopausal breast cancer patients in my follow-up clinic so I wanted to improve the standard of care we gave to those patients and look at what their needs were specifically. So we did a qualitative study looking at what they wanted in follow-up, the breast cancer patients post-menopausal. Generally these are older patients and they’re not as vocal as younger breast cancer patients so we wanted to give them a voice and see what they need as they move forward in their survivorship care journey.
Why is there such a big difference between Ireland and the rest of Europe?
It’s not all European countries, some European countries have survivorship care plans in situ, others don’t, so it’s very heterogeneous across the European nations. But our National Cancer Control Care Programme is now actively looking into survivorship care. Traditionally we looked at treating patients and then they were followed up by the medical model of care where you looked to see was there any signs of the cancer coming back or were they adhering to their medications but you weren’t really looking at the other issues that these women have – the physical, the psychosocial, the emotional, the spiritual and obviously the side effects associated with a lot of the endocrine therapy that these women may be on. So those areas weren’t looked at in the medical model so now we’re trying to improve on that and the cancer care programme here in Ireland is actively looking at survivorship care planning now. The Americans are way ahead of us, in 2005 the paper was published Lost in Translation, and that’s what gave them the impetus to look at survivorship care planning. So we’re a bit behind but we’re starting to get there.
How have things changed in Ireland over the years?
It’s only changing now because we’re only looking at it as part of our cancer strategy and the minister spoke about it today, looking at survivorship care. So it’s only in its infancy and we’re getting it started because there is a whole area to look at and a debate about who is actually going to provide that care, is it going to be hospital based or should it go to the general practice or primary care and who is going to provide that care? In my study, I work as an advanced nurse practitioner in one rural area in Tullamore, and then we looked at patients who were followed up using the medical model by the medics in the Galway University Hospital and just seeing what their differences were. There were a lot of differences, the main result of it was that women want consistency, they want to see and meet the same person at their visits rather than when it’s the medical model it’s more likely that the doctors change every six months so you have the problem of going in and seeing somebody different each time. What they want is consistency of care. Also they wanted information on advice on healthier diet, eating and health promotion and also how to manage the side effects long and short term of their cancer treatments.
Were there any interesting questions raised after your talk?
No, most of the audience felt that it’s a good thing to have nurses involved in this because we provide a holistic level of care for these patients rather than the traditional medical model and looking after that. So there are areas open for nurses to expand their practices and it’s good for nurses to look at this now in expanding practices here in Ireland particularly and getting more nurses involved in those roles in survivorship care planning.
What should healthcare professionals be aware of, moving forward?
When talking to these women it’s important that you don’t just focus on looking for signs of the cancer coming back or are they taking their medicines. You want to look deeper and see the side effects that they have with these treatments and why aren’t they taking their medicines and how is it affecting their quality of life. Particularly with some of the endocrine therapies that these women are on they can get huge problems with arthralgia, which is joint stiffness, and this can lead them to not complying in taking their medicines. So if you talk and you look after these women and look after them in a more holistic way then you might even be able to raise their compliance if they understand why they need to take the medicines and might help their compliance in that area. So looking at the whole person rather than just concentrating on little bits is good. I know with many of the survivorship care planning clinics they have a whole team of people that are looking after these patients which is good for those.
