Project Purpose

1
Development of a Care Map for Head and Neck
Cancer Patients
Michelle Hasebe2, BASc, dietetics candidate
Angela Bowman1, BASc, RD Ryna Levy-Milne1,2,
PhD, RD
1. B.C. Cancer Agency, Vancouver, B.C. 2.
University of British Columbia, Vancouver, B.C.

Introduction
Preliminary Results
Methods (continued)
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 patients
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.
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.
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 patients
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 workers 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.

Next Steps
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 maps 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 patients and health
care workers 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.
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.
Future Directions
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.
References
Methods
BC Cancer Agency. (2006). Retrieved from
http//www.bccancer.bc.ca/default.htm Clarke,
L.K. (2002). Pathways for Head and Neck
Surgery A Patient-Education Tool. Clinical
Journal of Oncology Nursing, 6(2),
78-82. 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,
585-593. 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, 119-126.
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.