Side effects We decided to use the tools available from the NCI and the American Cancer Society (ACS) for this section. The number-one side effect patients ask about is fatigue, so this is the first side effect in the section. Other side effects included are nausea and vomiting; mouth sores; hair loss; constipation; diarrhea; pain; swelling; bleeding problems; changes in urination, nervous system, skin and nails, memory, appetite; and sexuality and fertility issues for either men or women. Having these materials in the binder have helped the oncology nurses feel more comfortable talking about these topics. Most of the nurses reported that the handouts also give patients permission to ask more questions about these topics.

Dietary Patients commonly asked about how to manage nausea, changes in bowel movements, poor appetite, and changes in taste. We decided to include the NCI’s booklet, Eating Hints Before, During, and After Cancer Treatment. It is available on the NCI Web site and can easily be printed.

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Infection prevention When developing this section, handouts were made using the Neutrophil: Your One-in-a-million Bodyguard Guides You Through Neutropenia patient handout book.3 This book is no longer published; however, using that and materials from the Centers for Disease Control and Prevention (CDC) as references, the infection control nurse developed a handout. It covers visitors, crowds, safe food preparation and storage, and preventive care for the mouth and skin. Other handouts in this section explained how to wash hands and how to use hand-rub sanitizer. A brief explanation of the absolute neutrophil count (ANC) was also included, as well as a temperature chart. The temperature charts have been helpful for patients and families at home, serving as a reminder of the importance to check body temperature.

Resources Cancer patients have psychosocial concerns that at times are not fully addressed during visits. Patients may not have information on support groups, employment and insurance concerns, and available help with transportation.4 (Institute of Medicine 2008 Report) Transportation is a universal concern, as even patients who drive often cannot drive themselves to treatment appointments. Cancer can lead to financial stress. Even with health insurance, cancer treatment is costly. Access to resources during treatment is important.

The survey results indicated that many patients were “Googling” their cancer or its side effects. Internet searches may not lead patients and families to accurate, safe information; therefore, we developed a list of 50 reliable Web sites maintained by reputable organizations. It included general cancer information and support, bone marrow transplants and donors, hospice and end-of-life, children, pain, patient advocacy, and resources for tumor types. Contact information for local support services, such as camps for adult cancer survivors, was also included in this section of the binder.

Clinical trials and genetic testing We reviewed the Cancer Program Standards 2012: Ensuring Patient Centered Care.5 Standard 1.9 provides guidance on how patients are recruited for clinical trials and discusses the criteria for identifying participant eligibility.5 Clinical trials focus on treatment, prevention, screening, diagnoses, or quality of life. This information helped nurses make patients aware of all their options.

Providing patients with cancer with information on genetics is required.5 Although we provide genetic counseling and testing services via referral, we still felt that discussing this information with the appropriate patients during their patient education sessions is important.

Advance care planning Families told us information on advance care planning was missing from their patient education. An important point that needs to be explained about advance care planning is that it is not about giving up. This discussion helps patients explain to their families what is important to them as they travel through their cancer journey. We included a copy of the hospital’s advance care planning booklet in the binder. It explains advance directives, living wills, life-prolonging procedures and declarations, explanation and appointment of health care representative, and durable power of attorney for health care information. A brochure for the hospital’s internal palliative care department and an NCI fact sheet on palliative care are also included in this section.