Consistency among caregivers can be an important factor for patients undergoing treatment for cancer.
No patient is prepared to hear they have cancer. The process can be confusing, with many unsure of the right questions to ask. As a result, patients can get overlooked and slip through the cracks of care.
In the session, The Rx for Patient Satisfaction at the 2017 National Association of Specialty Pharmacy (NASP) Annual Meeting and Educational Conference, cancer survivor Emily Wallace described her journey with Hodgkin’s lymphoma.
Wallace pinpointed March 2013 as where her story began. Growing up in a basketball family, staying active was second nature. But she soon started to feel lethargic all the time, even having to leave work to take naps.
In addition to fatigue, Wallace noticed large bruises on her legs, thighs, and especially her calves, with no explanation. It wasn’t until a few lumps started to emerge on her neck that she sought out a physician.
Wallace was eventually sent to a specialist, but it wasn’t until she googled the physician’s name that she learned she was being sent to an oncologist. At the cancer center, Wallace underwent lots of blood work and when the results came back, she was told she had a rare blood disease called Gardner-Diamond syndrome, which affects only 150,000 people worldwide.
Although Wallace received medication that caused her bruises to disappear right away, the lumps persisted. When she asked what was going on, she was told by her oncologist, “Oh, I get cysts all the time. Don’t worry about it.” As a result, Wallace continued to take her pills, and the lumps and lethargy continued.
In November 2015, Wallace was back at home to attend her grandfather’s funeral. While in the shower, she felt a golf ball sized lump underneath her armpit. Wallace went back to her primary care physician to get checked out.
“She starts feeling on me and says, ‘I’m not trying to freak you out but I think you have lymphoma,’” Wallace said in the session. “She did the CT scan and some X-rays, and 2 days later I was diagnosed with stage 3 Hodgkin’s lymphoma, and 4 days later I had my first chemotherapy. Everything happened in a 2.5-year span, super slow, then all of a sudden it was super fast.”
Wallace underwent 12 rounds of chemotherapy, each of which were a little different.
“Obviously, I got sicker each time, but I also had different faces each time as well,” Wallace said. “In a small cancer center, I was expecting to have a nurse that would go with me throughout my journey but that didn’t happen. I only had the same nurse twice, [and] my oncologist was only there 6 out of the 12 times as well.”
While undergoing chemotherapy treatments, Wallace said she felt extremely isolated. Her parents lived 6 hours away, and her mom was diagnosed at the same time with having terminal intestinal cancer, when in fact, she had suffered a ruptured appendix.
Since her mom had her own recovery, Wallace only saw her the first chemotherapy session and didn’t see her again until 2 weeks after her last session. Wallace’s father came down every 2 weeks and her friends filled in for the other sessions. One friend had been diagnosed with leukemia at age 17, so he had a better understanding of the questions to ask.
“It was kind of like I was more so alone,” Wallace said in the session. “The biggest person in that cancer center was the receptionist. The day that I was diagnosed, she came up to me and said ‘Hey, I’m a cancer survivor as well. I had Hodgkin’s lymphoma too. I’m 22 years in remission.’”
“That was my hope right there, and she was kind of my rock. And I mean, yes receptionists are great but that probably shouldn’t have been the person that I was going to at all times.”
Wallace was working full-time as a social worker while she was sick because she needed her insurance. Being a social worker, she had the opportunity to go to therapy herself but it was something she rejected at first. After a few months, she submitted.
“That was probably the best decision I ever made because that therapist used to be a nurse practitioner oncologist,” Wallace said during the session. “She did everything that I needed that probably should have been happening weekly in the cancer center that wasn’t happening.
Wallace is currently 27 months in remission, but has switched oncologists twice. She emphasized the need for patients to seek a second opinion and have a strong support network because of the life-changing impact of a cancer diagnosis.
“Although I’m here, I’m able to talk about my journey, it still isn’t easy,” Wallace said. “It still isn’t easy to look back. And it’s just not fair for somebody, I think, to have to go through what I went through, especially in the day and age that we are in now.”
Wallace has been in remission since June 2015. She is a social worker in Lincoln, Nebraska, working in a preventative program with families to stay out of the CPS system.
“I want to applaud Emily’s courage to share her story with all of you because I think it takes an immense amount of courage, but it’s her courage that fuels our fire to be health care practitioners in oncology,” said NASP President Mike Agostino during the session.
Ann Fish-Steagall, BSN, RN, OCN, also spoke during the session to illustrate what a specialty pharmacy could have done to have improved Wallace’s journey.
“Patient care is still my passion all these many years later,” said Fish-Steagall, who has been an oncology nurse for more than 30 years. “At ASCO (American Society of Clinical Oncology) this year, I got more professional satisfaction at one preliminary session than I have in my 30 years of being an ASCO member, and that was an evaluation study that patient management truly makes a difference in patients’ lives.”
The study was large for its type, comprising 766 patients who were followed and accrued over a 4-year period, and have now been followed-up with at a median of 7 years. Fish-Steagall noted that there was a large range in ages of the study participants, so there were no biases by age.
“This was a randomized study for patients to follow-up with their provider using a web-based patient reported outcomes application versus the good old standard way of, you have a problem [and] you need your physician, you call and leave a message,” Fish-Steagall said in the session. “As you heard Emily tell her story, there can be gaps. There can be gaps in having their calls returned, maybe there’s no particular person in a cancer center or practice for a patient to use as a lifeline.”
During the study, the participants used either their standard method of follow-up or the web-based application. If they had a new symptom associated with their disease or therapy or they had a worsening symptom, the nurse at their practice was pinged by email to get in touch with that patient. According to Fish-Steagall, 77% of what was reported by the patients required nurse follow-up.
For those patients who received follow-up from the nurses due to their web-based reporting, they were on therapy an average of 2 months longer. Furthermore, they had an overall survival advantage of 5 months, which translated into an 8% survival benefit.
“This study really validates for me, as an oncology nurse, that when we take really good care of patients we have much better outcomes,” Fish-Steagall said.
What Can Specialty Pharmacy Do to Improve Outcomes?
“As a specialty pharmacy, we are an extension of the practice,” Fish-Steagall said. “We don’t intend to replace the physicians or nurses in a patient’s practice, but we are an extension of that practice. As we move towards 2020, we know that oral specialty drugs are going to overtake oncology—–they’re very expensive, these patients have extremely complex situations, diseases, [and] comorbidities. They require a lot of handholding so that their care can be coordinated between specialists amongst other physicians.”
There are also many patients who must travel long distances to cancer centers, and there can be large gaps in their care.
Patient outcomes can be improved in specialty pharmacy through URAC accreditation.
“The newest version of URAC referred to as 3.0 has been a giant leap from the previous accreditation standards,” Fish-Steagall said. “It is a very rigorous accreditation to say the least, but one of the things that I really was impressed with was that for a pharmacy accreditation standard, they have focused a lot of attention on patient management.”
URAC was founded in 1990 to do utilization review/management. Over the years, URAC has expanded and now offers many accreditations in the health care setting; specialty pharmacy is just one of them.
There are multiple standards in accreditation; however, the number one standard is a patient-centered strategy, according to Fish-Steagall. URAC believes it is “our duty as health care providers in a specialty pharmacy setting to make sure that it is the right drug, the right choice, and that it is an appropriate drug considering concurrent medications that patient has.”
Additionally, Fish-Steagall believes education is equally as important.
Pharmacy law says that you should offer counseling to patients; however, it does not say that a pharmacist must do mandatory counseling.
“We feel that—–especially for oncology patients––one of the things that removes barriers to adherence and improves compliance in quality of life for patients is to do intense education before that drug is ever shipped to them,” Fish-Steagall said in the session.
Patients only retain approximately 10% of information given at any one setting. To combat this, nurses need to follow-up on that education, according to Fish-Steagall.
“Did the patient hear the pharmacist? Did they take note of how to take their medication? Do they take the right dose, do they take it with or without food? It’s amazing to me how often we follow-up not just once but on multiple occasions, and realize that patients have reverted to taking medication just the way they want to take it…without consideration for the original instructions they were given,” Fish-Steagall said. “It’s a nurse’s job to make sure that a patient stays on track, continues to take their medication appropriately, and then to really mitigate those side effects that drug may cause.”
Fish-Steagall believes the role as a specialty pharmacy health care provider is 2-fold: to keep the patient on medication for as long as it is working for them, and do it in a manner that ensures the patient has the best quality of life they possibly can while undergoing that therapy.
One question often asked is how a physician may take this interference.
“I have to say, in my experience, the majority of the time the physician is very happy that we picked up on it,” Fish-Steagall said. “They recognize that it is the pharmacies duty to know that drug inside and out, especially as new therapies are launching every week, every month, it seems. It’s very hard for physicians, especially in a community practice who may not see highly orphaned indications that often. They may not really understand the mechanism of action, they may not really understand the side effects of the drug. So, for us to be that content expert, to reach out to those providers and make sure that they have all the information needed to safely take care of the patient, makes us a good partner.”
Documentation and being aware of who is on that patient’s caregiving team is also important, explained Fish-Steagall.
“I want our pharmacists and our nurses to treat that patient as if they had just walked into a hospital room and they were taking care of that patient at the bedside, or they were walking into an outpatient clinic and they were seeing that patient face-to-face,” Fish-Steagall said. “The documentation should be no different than if we were in any other clinical setting.”
If a patient falls into the high-risk category, URAC requires specialty pharmacies to assess every patient for barriers to compliance, as well as distress.
Specialty pharmacies are also beholden to the manufacturer to report any changes in side effects, according to Fish-Steagall.
“If you are involved in any of these patient management programs that are sponsored by the manufacturer, then you know that in today’s world we are not only a part of that health care team we are also an agent of the manufacturer,” Fish-Steagall said. “Therefore, it causes us to have to report adverse events in the same manner that the manufacturer does to the FDA.”
Fish-Steagall noted that although it is important to document and report appropriately, it is also important to realize that these are just a byproduct of good patient management.
“There is no way, especially in oncology, for a nurse or a pharmacist to improve that patient’s quality of life throughout therapy without learning of adverse events and then reporting them,” she said.
Another aspect of URAC requirements are care plans. URAC recognizes that care plans should be designed by the nurse with the patient, and the patient should come up with goals that are acceptable to him or her.
“We have to demonstrate this in documentation as a URAC standard,” Fish-Steagall concluded. “So, our care plans become a permanent part of the patients record within the specialty pharmacy.”