Project Purpose The purpose of the project is to develop a preliminary “patient care map” for head and neck cancer patients for eventual use at the Vancouver Cancer Centre. The care map will walk patients through each step of the treatment process in an easy to follow chart format. This preliminary care map concentrates on the radiation treatment process because this is usually the primary treatment head and neck cancer patients are receiving when they are seen at the Vancouver Cancer Centre. The care map is intended to help head and neck cancer patients understand their treatment process and to aid them in navigating the cancer care system. It will include some tips on self care for the different steps of treatment and will provide contact information for important resources. The care map could be used by health care professionals as an educational aid and will provide a written educational tool that patients and their families can refer to during their cancer journey. It is also hoped that the care map will encourage patients and their families to become active participants in their treatment planning, increase feelings of self-efficacy and facilitate the use of available support services and resources. Next Steps Development of a Care Map for Head and Neck Cancer Patients 1. B.C. Cancer Agency, Vancouver, B.C. 2. University of British Columbia, Vancouver, B.C. Michelle Hasebe 2, BASc, dietetics candidate; Angela Bowman 1, BASc, RD; Ryna Levy-Milne 1,2, PhD, RD Introduction Head and neck cancer patients often have trouble navigating the cancer care system and few resources are in place to help them along their treatment pathway. Recent studies suggest that the information needs of these patients are not being met, adding significantly to the patient’s distress and anxiety. Although there are exceptions, head and neck cancer patients often fall into a vulnerable group that are more likely to smoke, drink alcohol heavily, have low education levels and be from lower socio-economic backgrounds. Such patients may be less proactive in asking for and obtaining information. Yet it has been found that the needs of head and neck cancer patients may be greater than those with other types of cancer because of the impact this type of cancer and its treatment has on important aspects of daily life, such as speaking, swallowing, breathing and physical appearance. Research has shown that patients who are given information and are able to understand that information, experience less anxiety and show better tolerance and compliance with their treatment plan. Patients who are happy with the information they received also tend to show less depression post-treatment. Written information is an important source of information that complements verbal discussion and education given by health care providers. It has been found that patients want and benefit from written information that is comprehensible, but research also finds that written information for patients is often difficult to understand and is written at too high a reading level. The development of appropriate written resources for patients will require patient involvement and feedback. Methods References Preliminary Results The preliminary care map for head and neck cancer patients is presented below. The preliminary care map may change significantly as its development progresses in response to feedback from patients and health care workers. Input will be sought from a number of patients. Patients will be asked to comment on how useful they think the care map will be, the form and presentation of the map, and the map’s content, reading level and length. Patients will also be asked what they think is needed in terms of information and patient education. The care map will be modified based on patient’s and health care worker’s comments. Care will be taken to ensure that the care map is written at an appropriate reading and comprehension level. The care map will be submitted for approval for use at the Vancouver Cancer Centre. BC Cancer Agency. (2006). Retrieved from Clarke, L.K. (2002). Pathways for Head and Neck Surgery: A Patient-Education Tool. Clinical Journal of Oncology Nursing, 6(2), Semple, J.S. & McGowan, B. (2002). Need for appropriate written information for patients, with particular reference to head and neck cancer. Journal of Clinical Nursing, 11, Ziegler, L., Newell, R., Stafford, N. & Lewin R. (2004). A literature review of head and neck cancer patients information needs, experiences and views regarding decision-making. European Journal of Cancer Care, 13, Once an acceptable care map has been developed it will be given to patients as a written information source to reinforce verbal information. Thought should be given to how, when and by whom the care map should be given to patients. The effectiveness and value of the care map as an educational tool should be evaluated. Evaluation may be in the form of a patient survey or verbal feedback. Future Directions Literature Search An environmental scan of the literature and web resources was conducted to identify educational materials for head and neck cancer patients, studies relating to educating head and neck cancer patients, and examples of care maps for this population. An example of a patient education pathway (similar to a care map) for patients undergoing head and neck surgery was found. This pathway, developed at the Greater Baltimore Medical Center, provided an example for the development of a care map for head and neck cancer patients. Care Map Development A template for the care map for head and neck cancer patients receiving radiation therapy was developed in a form similar to a grid as shown in the “Results”. Health care workers at the Vancouver Cancer Centre involved in the care of head and neck cancer patients were consulted to determine how and when they interacted with patients. The health care workers helped to fill in the care map template by explaining the steps in the patient’s treatment for the different time periods. The health care workers consulted included an oncology nurse, oral oncologists, a radiation therapist, dietitians and a social worker. Tips for self care were added to the care map based on the health care worker’s comments and the educational material provided by the BC Cancer Centre in print and web based form. The care map was submitted to the health care workers for comments in an iterative process. Methods (continued)