New patients Identifying the nurses’ common concerns was important; but as the project developed, we realized the importance of understanding the patients’ and families’ needs as well. The oncology NP met with patients and their families separately to ask about the chemotherapy education they received. How helpful was the education they received? Was there anything else they would have liked to receive more information about? Among patients currently undergoing treatment, side effects were the number one concern. Patients wanted to know more about potential side effects, “The nurse covered nausea, but I developed a sore mouth and was not sure what to do next.” Patients commonly wanted more information, “Give me all you got and I can pitch what I end up not needing.” Another common request was resources. Patients reported they “Googled” their cancer type or symptoms almost every day; some of the information was helpful, but most of it was scary. Information on financial concerns, transportation, home assistance with laundry, and grocery shopping were commonly mentioned.
Established patients To compile a more comprehensive assessment, we decided to ask past patients about the chemotherapy education they received and what other information they would have liked to receive. The patients surveyed reported wanting, and still needing, information on infection prevention. The ability to stay healthy and out of the hospital is important for wellness. Diets were also a common topic past patients would have liked to receive more information on, such as foods to avoid. Sometimes they had to force themselves to eat, and doing so was a challenge, “Knowing that eating would likely have been hard would have helped me when it happened.” Patients thought eating would return to normal after chemotherapy was over; however, some reported their sense of taste was altered or took longer to return to what it was, if it returned at all.
Family/caregivers After talking with current and past patients, we decided to discuss education needs with the family/caregiver as well. These people are with the patient more than anyone else. The families of current patients were focused on keeping track of information. They explained that a portable tool for keeping track of appointments, medication schedules, and other duties would be the most helpful. Something information could be placed into, added to, and was sturdy.
Side-effect management was another common concern for the family. When something happens, such as forgetfulness or numbness in the feet, they felt having a resource to check if the side effect is “normal” would help. In posttreatment, families had different requests. Families of patients more than 1 year posttreatment also reported wanting a portable guide. Some wanted more information on advance care planning, “Having time early [in the disease process] to discuss [advance care planning] would have been nice. I was too afraid to bring it up.” Information on prognosis, treatment planning, and end-of-life needs were important to families.
ASSEMBLY OF A BINDER
We decided to use a ring binder because it could accommodate the variable amount of information patients collected in the course of their treatment and, as preferred by patients and their families, was portable and sturdy. Based on the collected feedback, 10 sections were developed: diagnosis, treatment, side effects, dietary concerns, infection prevention, resources, clinical trials and genetic testing, advance care planning, survivorship care, and notes. Once the section topics were identified, we focused on developing the content for each section.
Diagnosis Prior to the binders, the hospital ordered booklets from the National Cancer Institute (NCI). This was becoming more challenging because large quantities were ordered, and updated versions were printed before we could distribute the booklets we had. We reviewed the options available through the NCI Web site. The site is easy to navigate and hundreds of cancer booklets are available; therefore, we decided to print the booklet we needed individually for each patient. This ensured we were giving patients the most current version of a booklet. Typically, the nurse practitioner prints the booklet in color, which is the patients’ preference. The chemotherapy-certified nurses are also aware of where to access the booklets for printing.
Treatment We use the NCI booklets on treatments in a similar fashion as those for diagnoses. In addition, the NCI booklets Chemotherapy and You and Radiation Therapy and You are included in each binder. Drug sheets from chemocare.com are printed for the patient’s binder as well. As the patient education session progresses, the educator highlights those sections deemed important, typically the side effects that occur most often and when to call the physician.