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
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.
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.
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.
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.
Methods (continued)
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.
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
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.
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
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.
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, 585593.
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, 119126.