This thesis describes research carried out to explore the needs, expectations
and experiences of the increasing number of women with a family history of
breast cancer who present to primary care. This work was intended to inform
clinical practice and policy, and to directly address women's needs where
possible.
Although a great deal of research has looked at the experiences of women
with a family history of breast cancer in a specialist setting, when this work
began, no research had yet been published on women's needs in primary
care. This is particularly important, as general practitioners (GPs) are the first
port of call, and often the main source of information, advice and support.
A qualitative interview study was used for the preliminary work exploring
women's subjective experiences of consulting primary care about a family
history of breast cancer and understanding their primary care consultation
needs (Chapter 2). This work was further elaborated upon using a
prospective descriptive study to quantify the extent to which women shared
the same views or experiences, and therefore, would benefit from certain
changes in health care provision (Chapter 3). The qualitative and quantitative
research showed that women's main primary care consultation needs were to
discuss their risks of breast cancer with their GP and to receive verbal as well
as take-home information.
When this work was being carried out, no patient information was available
suitable for a general population of women with breast cancer in the family
who present to primary care. For this reason, a leaflet was developed based
on women's information needs and the best available evidence (Chapter 4).
The leaflet entitled Breast and/or Ovarian Cancer in the Family: Learning
More about Your Risks and Options was evaluated with almost 200 women to
ensure that it met their needs (Chapter 5). Over 90% of women were glad to
have received the leaflet and felt that it provided the information they wanted
to know.
The implications of the work described in this thesis are that GPs could greatly
assist their patients by acknowledging family history concerns as a legitimate
reason for presenting to primary care, by providing verbal and take-home
information and by inviting patients to return for future discussions if needed.
Nationally accepted management guidelines for breast cancer family history
and accompanying educational materials for use in primary care will also be
instrumental in meeting patient needs and promoting informed choice in this
new and difficult area of medicine.<p