Mouth Cancer and Improving the Patient Journey

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Mouth Cancer and Improving the Patient
Journey Mike Walton
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However gold standard the treatment plans are
and however good the centres of excellence
become, the fact remains that until the patient
presents, the pathway of detection, diagnosis and
treatment cannot begin and precious time is lost
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Fact Early detection and rapid treatment Dramati
cally increases survival rates from 50 to nearer
90
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Awareness that becomes actionsaves lives
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• Patients comments
• Id never really heard of it. I thought I was
  the last person it could happen to Jamie
  Thomson, 21
• Id never heard of mouth cancer, let alone the
  symptoms Bob Conway, 61
• How can something as simple as a mouth ulcer go
  on to kill in the space of one year Ben Walton,
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THE NEED FOR A GUIDELINE Approximately 1,000
patients with new cancers of the head and neck
are registered in Scotland each year. The
incidence of disease has tended to increase with
age and in the UK 85 of cases are in people aged
over 50. There is now evidence that the incidence
of head and neck cancers is increasing amongst
young people of both sexes. The disease tends to
be a disease of deprivation, with the risk of
developing the disease four times greater for men
living in the most deprived areas. The current
overall five-year survival rates vary by
tumoursite. In general, patients with early
disease stand a better chance of cure or
increased survival. Many patients with head and
neck cancer present at a late stage, and improved
survival for patients may be achieved with rapid
detection and treatment. Improved awareness and
the implementation of a national guideline should
improve patient outcomes.
SIGN no 90
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CHANGING EPIDEMIOLOGY Head and neck cancers are
traditionally associated with older men who smoke
and consume alcohol. A percentage of patients
will not have the traditional risk factors, but
the absence of these risk factors does not
preclude the diagnosis. Evidence suggests that
the incidence in the younger population of both
sexes is rising. This coincides with an increase
in the incidence of oral cancer. No evidence to
explain these changes was identified.
SIGN no 90
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RECOMMENDATIONS FOR RESEARCH Further research is
required to address the numerous areas mentioned
within this document where there is insufficient
evidence to make a recommendation or to support
current clinical practice. The following areas
are identified as especially important the
aetiological factors responsible for the changing
incidence and age distribution of head and neck
cancer tumour biology that may direct new
treatment strategies collaborative clinical
trials supported by bodies such as the National
Cancer Research Institute (NCRI)? the efficacy
of hyperbaric oxygen therapy in three areas
prevention and management of osteoradionecrosis
and increasing implant success rates in
irradiated bone methods of improving quality
of life for cancer sufferers patients' support
needs, experiences and views.
SIGN no 90
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"Warmth, sympathy and understanding may at times
outweigh the surgeon's knife or the chemist's
drugs" Médecins Sans Frontières "We need to
focus more not just on the science of medicine
but also on the art of healing"SIGN, Chairman
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SCARED SYNDROME
After head and neck surgery, a person may S be
Self-conscious or Shy C feel Conspicuous A feel
Awkward, Angry, Anxious R feel Rejected E feel
Embarrassed D feel Different or Depressed
Someone who meets this person may S Stare, be
Sympathetic/Shocked C be Curious A Assume, feel
Anxious R Recoil, feel Repelled E feel
Embarrassed, want to Evade D Dread it or feel
Distressed
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An honest diagnosis delivered kindly and
compassionately. Patients and families need to
know the true prognosis in order to be able to
plan. They want to be given the news, no matter
how difficult, in a humane way. They do not want
their providers to sugar-coat the truth, but they
also want them to offer hope. The style of
communication is as important as the message.
Providers who listen. Patients want their
feelings to be honored, not dismissed. If they
feel that they need care, they want their
physicians and nurses to help them determine what
should be done. Too often patients are put off,
only to have their instincts confirmed, later.
Research shows that physicians who receive
communication training, and who take more time
with patients achieve improved outcomes.
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Direct answers to questions. Patients and
families want straightforward answers to
questions. They sometimes feel that doctors and
nurses avoid their questions, or are afraid to
admit they don't know the answers. When they
don't get a direct answer to a question, patients
fear the worst Participation in decision
making Patients want to play an appropriate role
in decision making. At times they are more
emotionally able to make decisions, than others,
and they want their providers to take this into
account At the same time, when they have gotten
over their shock or denial, they want their
providers to encourage joint decisions.
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