Gastroenterology Today Summer 2019

NEWS
suicide is higher in the first six months
unaddressed can have a huge detrimental
Half of patients with
deadliest common cancer
have unmet support needs,
first ever UK survey reveals
of diagnosis and particularly for patients
whose cancer had spread to other organs,
underlining the importance of patients
receiving specialist psychological care as
early as possible.
impact on their quality of life. Pancreatic
cancer is a complex disease that can
progress devastatingly quickly, often
leaving those affected with little time with
their loved ones. We want to see support
needs assessed for all pancreatic cancer
GASTROENTEROLOGY TODAY - SUMMER 2019
Physical and psychological support need
of patients with the deadliest common
cancer are not being met according
to the first ever UK survey into the
experiences of people with pancreatic
cancer. Commissioned by leading
charity Pancreatic Cancer UK, the survey
revealed that half of all respondents
(49 per cent) had one or more unmet
support needs considered either high or
moderate in severity. The findings show
a clear gap in the supportive care being
offered to pancreatic cancer patients –
a group which the charity believes has
been neglected for decades.
The survey, conducted by Oxford Brookes
University and The Picker Institute on behalf
of the charity, recorded the care experiences
and support needs of 274 people with
pancreatic cancer. The majority (87 per
cent) reported one or more support needs,
ranging from depression, fatigue, and
financial pressures, to changes to appetite.
Pancreatic Cancer UK is concerned that
a significant proportion of these needs
are not being met. It is now calling for
the Government and NHS to introduce a
holistic needs assessment to ensure that
patients have access to personalised care
immediately after diagnosis.
One survey respondent said: “I was not
offered counselling though I really felt I
needed it. My physical needs were very well
met but my emotional needs have never
been addressed. I had no idea where to
go for the help I needed and had to search
online for information.”
Patients reported that psychological care
needs were the most likely to be unmet;
almost a third said fears about the future
(31 per cent) or fears about the cancer
spreading (30 per cent) were not being
addressed. This is extremely concerning as
pancreatic cancer has the lowest survival of
all common cancers – less than 7 per cent
of people living for 5 years - and the second
highest risk of suicide after diagnosis
compared to other cancers. This risk of
Currently there are no established
psychological interventions for people
with pancreatic cancer due to a lack
of evidence, and the NICE guidelines
on the disease cite this as a key
area for improvement. The charity is
urging the National Institute for Health
Research (NIHR) to prioritise and invest
research funding for the development of
psychological interventions for people living
with and beyond pancreatic cancer.
Most patients were positive about the
care they received, however, the findings
indicated key differences between the
experiences of people who were eligible to
receive surgery, the only potentially curative
treatment for the disease, and those whose
pancreatic cancer was inoperable. People
with operable pancreatic cancer were
more likely to feel that their diagnosis had
definitely or to some extent been given in
a sensitive way (87 per cent), compared to
inoperable patients (74 per cent). Similarly,
37 per cent of people with inoperable
pancreatic cancer reported that they had
not been given enough information at the
point of diagnosis, compared to 27 per cent
for people with operable disease.
The extent and breadth of needs and the
variations in care experienced by people
with pancreatic cancer has previously
gone unreported because they are not all
captured by the National Cancer Patient
Experience Survey (NCPES). The NCPES
is distributed within six to nine months
of diagnosis when many people with
pancreatic cancer have already died or are
too sick to respond. The low number of
responses mean that pancreatic cancer is
grouped with Upper Gastrointestinal (UGI)
cancers. The NCPES also does not capture
the experience of those living beyond their
diagnosis and treatment.
Anna Jewell, Director of Services at
Pancreatic Cancer UK, said: “For so
many pancreatic cancer patients to tell us
they have unmet support needs is heartbreaking
- these are live needs which if left
patients immediately after diagnosis so that
they can be helped to maintain as good a
quality of life as possible.
No one affected by pancreatic cancer should
be left to struggle in isolation. Specialist
support is available through the Pancreatic
Cancer UK Support Line. Our dedicated
team of nurses are there to help patients
and their families but we need fellow health
professionals to signpost them to us.
The needs of pancreatic cancer patients
have been neglected for far too long. It’s
imperative that these findings now prompt
further research into the most effective
interventions, particularly around mental
health, so that people with pancreatic cancer
receive the very best care and support.”
Amy Tallett, Head of Research at Picker,
commented: “Picker is proud to have
worked with Pancreatic Cancer UK and
Oxford Brookes University on this important
research, and we hope that the findings
provide an essential evidence base to
inform continued conversation and actions
to improve care experiences for people
affected by pancreatic cancer. Thank you to
everybody that took part in this research.”
Eila Watson, Professor Supportive Cancer
Care at Oxford Brookes University,
said: “This survey highlights the unmet
information and support needs that
pancreatic cancer patients have across
the cancer trajectory. Needs should be
assessed from the point of diagnosis and
monitored regularly, with supportive care
interventions implemented to help patients
live as good a quality of life as possible.
Further research is needed to work out how
best to support patients and their families.”
Pancreatic Cancer UK operates the only
dedicated support line for people affected by
pancreatic cancer staffed by specialist nurses.
The Pancreatic Cancer UK Support Line is
free to call on 0808 801 0707 with support
available on weekdays 10am-4pm and via
email: nurse@pancreaticcancer.org.uk
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