The work I’m presenting today is initiation of a breast cancer survivorship clinic for patients who have completed their initial curative treatment. The focus is developing a clinic that is led by an advanced practice nurse and the nurse is the co-ordinator as well as the advanced practice provider for the clinic. The reason we started our breast cancer survivorship clinic and when we started survivorship we started with breast cancer because they are the largest number of cancer survivors – there are 3.5 million in the United States and many more around the world. So there are a large number and what we know from the literature is these women experience many, many symptoms, after-effects, emotional distress, sexual dysfunction, so we know they experience all of this after treatment is complete. So it was to really develop a clinic specifically for these women that is multidisciplinary so we would be addressing all the issues in one clinic visit to at least get a starting place. So there are five clinicians that they see when they come – myself, as the advanced practice nurse, they see a physical therapist, oncology physical therapist, a genetics counsellor, they see a social work mind-body counsellor and then they also see the dietician. That gives us a starting place to see where they are, what symptoms they are having and how we can best provide care at the clinic and then provide resources for them so that they just don’t accept that they have to live with discomfort or unresolved emotions and feelings.
Why is a multidisciplinary approach beneficial?
A multidisciplinary approach is really the ideal approach to this patient population. They experience a cluster of symptoms and those being the top ones that are reported, at least in the literature, are fatigue, depression, anxiety, distress, sleep issues and then cognitive issues – just not thinking clearly. On top of that they have a lot of questions and concerns about what I should be eating, what I should be doing. There’s no one clinician that can really address all of those so the importance of having a team and each individual doing their assessment and providing care for the patient is really the ideal situation to meet the patient where they’re at.
How do you measure results?
We’ve been doing this, the breast cancer survivorship clinic at Ohiohealth, for two years. The outcomes that we’re currently looking at are really an assessment up front to see what symptoms are women presenting with. So we learned, at least in our location, the number one concern that 62% or so of the women presented with was nutrition and weight management and we know that being overweight is a risk factor for recurrence. A little different than what the national numbers are. So we wanted to really see the population we’re serving what are their needs and now we have a couple of years of data so that we are moving forward to develop, we have developed, a weight management programme for cancer survivors as a result of this, more integration with the integrative medicine folks for some mind-body medicine, physical therapy – just tracking pelvic dysfunction, incontinence, those sorts of issues, getting women the help they need and is that resolving their problems.
So the first couple of years our outcome data has really been focused on what are the needs of the population and then on an ongoing basis developing the interventions to address those. We do track data such as how many referrals and that sort of stuff so it’s a lot of internal data right now, not necessarily the final outcome data which we’ll be doing down the road.
What are the next steps?
We did develop the weight management for cancer survivors programme and started it as an eight week programme. We got feedback on that and learned that we need a longer period of time; we’ve expanded it to ten weeks. We got feedback that says, ‘I learned a lot but I don’t know how to really cook the way you’re telling me. That’s not how I normally cook.’ So we’ve revamped that programme and will continue to do that to include cooking demonstrations, to include behavioural medicine at all the sessions during the weight management programme. We introduced an exercise component to that that’s stronger and so developing that even more in the future is important because that’s a big risk factor in our population. We know it’s something they want.
Other next steps are for those who don’t come to clinic developing a monthly, not necessarily support group but education session that is in the evening so that we change the topic but continue to educate and provide a forum for survivors, breast cancer survivors, and a place for them to learn and ask questions in addition to the clinic. Then, lastly, we’re just starting to look at a melanoma clinic, so to begin to expand it to other disease sites besides breast cancer.
How accessible might services like this be?
Breast cancer survivorship in a multidisciplinary clinic isn’t feasible everywhere. So we’re in central Ohio but there are lots of rural areas. So on an ongoing basis what we want to do is develop smaller versions with referral sources, the monthly support programmes and even to start looking at some web-based so that we can do these sessions, people can join in to the sessions, they can still learn and they can still ask questions. So I think we do need to look at others ways besides a physical clinic. We’re blessed that we can have all those clinicians in one place at one time at a couple of our hospitals. We’re a multi-hospital system so it’s not going to work for everybody and technology, hopefully, will allow us to get programming out to many more survivors.
What is your take home message for oncology nurses?
A good take home message is that when patients finish treatment that’s not the end of care and that the ramifications of treatment are long-lasting and for many people very long-lasting. I had one patient tell me that it is the anxiety that never goes away. Until every bump, every ache, every pain is cancer, until it’s not. So we know that physical, emotional, psychological, there are lots of things that go beyond treatment and that as you work with patients to keep in mind that they have these symptoms, that when treatment ends all they’ve been through doesn’t end and it stays with them for life and we need to be aware of it and have resources for that.
This is what I’ve learned from doing survivorship and because healthcare professionals, we have this understanding that our lifestyle, people’s lifestyle, impacts their health. What I’ve learned is that’s not intuitive for the general population. People don’t necessarily understand that lifestyle and cancer have a connection except for smoking. People know smoking does but in terms of how you live your life every day, what you eat, how much you move, how much you drink, those things are all being shown to have relationships to cancer and even cancer outcomes and survival. So it is important that we connect with people and help them learn and understand the connection between lifestyle and cancer.