A presentation given at the Irish Cancer Society's Survivorship Research Day at the Aviva Stadium, Dublin on Thursday, September 20th, 2013. Cancer Survivorship: longer term issues and the role of primary care - Prof Eila Watson (Oxford Brookes University).

1. Cancer Survivorship:
longer term issues and
the role of primary care
Irish Cancer Society
Survivorship Research Day
Eila Watson
Professor Supportive Cancer Care
ewatson@brookes.ac.uk

2. Outline
 Key issues for cancer survivors
 Follow-up – what is the purpose and how well
does it work?
 Role of Primary Care – now and in the future….
 NCRI Primary Care Clinical Studies Group –
Survivorship sub-group

3. Prevalence
• 2 million+ people in the UK living with a diagnosis
of cancer now
• 1.24 million cancer survivors had their diagnosis
more than 5 years ago
• 3.2% growth per year in the number of cancer
survivors
• 4 million cancer survivors by 2030
(Maddams et al, BJC, 2009)

4. Cancer survivors by time
since diagnosis in the UK
(Macmillan Cancer Support, Throwing light on the
consequences of cancer and its treatment, 2013)
2010 2030
220,000
570,000
1,290,000
2,680,000
990,000
370,000
<1 year
1-5 years
>=5 years

5. Survivorship Issues
 Physical problems
 Immediate
 Long term effects of treatment- ongoing / persistent
 Late effects of treatment
 Psychological problems
 Anxiety and depression
 Fear of recurrence
 Social problems
 Relating to friends and family
 Practical and financial issues
 Return to work
 Parenting

6. Health and Supportive
Care Needs – long term
 Postal Q survey to patients 5 -15 yrs post-
diagnosis who remain disease-free, and their
partners / close family members
 Breast, colorectal and prostate cancer
(Survivors N= 659, Partners N = 257)
 Participants identified via cancer registry, invited
by GP
 Measured anxiety and depression, quality of life,
unmet needs

7. Results:
Anxiety and depression
Patients
% cases
Family Member
% cases
UK norms
% cases
Anxiety HADS
Possible case (8-10) 13.6% 14.4% 20.6%
Probable case (11+) 9.3 % 9.3% 12.6%
Depression HADS
Possible case (8-10) 7.3% 3.9% 7.8%
Probable case (11+) 2.1% 3.1% 3.6%

8. Results: Unmet needs
35 items – comprehensive cancer care, existential
survivorship,
information, quality of life, relationships
At least one
unmet need
% (n)
At least one moderate
or strong unmet need
% (n)
Patients 47.4 (255) 36.6 (197)
Partners/ Family
Members
49.4 (127) 26.5 (68)

9. Results: Most common
unmet needs
Unmet need Patient
%
Partner
%
I need help to manage my concerns about my (my partners) cancer
coming back
20.8 15.6
I need to know that my (my partner’s) doctors all talk to each other to
coordinate their care
20.6 14.4
I need local health services that are available when I (my partner)
needs them
18.8 9.3
I need to feel like I am managing my health (involved in my partner’s
health) together with the medical team
18.0 11.7
I need any complaints regarding my (my partner’s) care to be properly
addressed
14.7 8.9
I need information to be provided in a way I can understand 12.8
I need information about the chance of one of the members of my
family developing cancer
- 17.5

10. Predictors of health
status, psychological
morbidity, unmet need
• Trait anxiety significantly associated with health
status, anxiety, depression and unmet need
• Hormone therapy, still attending hospital follow-
up, and dissatisfaction with discharge were
significantly associated with unmet need

11. Conclusions
 Strategies required for identifying and addressing the needs
of the minority, whilst allowing the majority to resume
normal life
 Need to find better ways to include partners / FM in cancer
follow-up care
(Harrison et al, JCO, 2009)
(Turner et al, Psycho-oncology, 2010)

12. Consequences of pelvic
radiotherapy treatment
 Pelvic radiotherapy is a common treatment for
gynaecological, prostate, rectal, anal and bladder
cancers
 Around 17,000 people are treated each year in
the UK
 Side-effects are common, but not well recognised
or managed ….

13. Late Effects of Pelvic
Radiotherapy
“Dear Doctor….
I have been coming to your clinic for 6 years now. Last week I was
seen by your registrar who informed me everything was fine. He said that it
would be very unlikely for the cancer to return and there was no longer any
need for me to come back for follow-up.
I was sorry that I didn’t see you though. You were right about the
cancer not coming back - that is a relief and I am grateful. But you know we
never had a proper conversation about it all, about what it has really been like.
Perhaps you would be surprised to know how my life is…….
…. At first I would tell you I would be a bit loose or having to rush to
the loo. I didn’t like to tell you I was having accidents – how embarrassing.
You did ask me once if were managing intercourse. I know I said yes, but I
couldn’t tell you how sore and uncomfortable it was . My husband gave up
after a while…. I wanted to know if everyone was like me but I never had the
courage to ask……
…..I don’t mean to grumble … I just wan’t specialists like yourself to
realise it’s all the little things together that wear us down…..”.

14. SYMPTOM FEMALES
(N = 223)
MALES
(N=195)
Bowel urgency 58.7% (131) 45.1% (88)
Difficulty
controlling bowels
18.4% (41) 15.4% (30)
Bowel
incontinence
10.8% (24) 14.3% (28)
Late effects in long term survivors of
pelvic radiotherapy
(1-11 years post-treatment)

15. SYMPTOM FEMALES
(N = 223)
MALES
(N=195)
Urine urgency 49.3% (110) 46.2% (90)
Incontinence of
urine
38.1% (85) 8.7% (17)
Erectile
dysfunction
n/a 77.9% (152)
Ability to have
sexual relationship
affected
23.8% (53) 53.3% (104)
Late effects in long term survivors of
pelvic radiotherapy
(1-11 years post)
Adams E, et al., Clinical Oncology (2013), http://dx.doi.org/10.1016/j.clon.2013.08.003

16. Implications
• Increased efforts to monitor and document symptoms
• Establish optimal way of eliciting symptoms and unmet needs from patients?
• Appropriate assessment of patient with symptoms
• Evidence-based management strategies / referral
guidance
• Education for secondary & primary care health
professionals
 A more coherent and co-ordinated approach to follow-
up has potential to improve QoL

17. Current follow-up
system
 one size fits all approach
 routine hospital follow-up (usually for 3-5 years)
 focus on detection of recurrence
BUT
 outpatient clinics struggling to cope
 is the system meeting patients needs?

18. New model of risk
stratified care

19. Where does Primary Care fit
in?
 Main role: screening, diagnosis, end of life
 Communication between secondary and primary
care - limited
 Uncertainty amongst patients regarding role of
primary care in on-going cancer care
 Scope and support (from secondary and primary
care) for primary care to play a greater role in
follow-up / survivorship care
 Education, follow-up systems, access back to
secondary care, resourcing

20. Role for primary care
•Information and psychological needs
•Assessment and management of long term and
late effects
•Screening – recurrence, second primary
•Preventative care and chronic health issues

21. How can GPs best deliver
cancer survivorship care?
• Treatment summaries and personalised care
plans
• Currently GPs do not feel well-informed: less than 50% felt
received adequate info on follow-up required, potential late
effects, signs and symptoms of recurrence, when to refer back
(Watson et al, J Cancer Surviv (2010) 4: 159-166)
• Cancer Care Reviews
• QOF points for conducting review within 6 months of diagnosis
- BUT no clear guidance on how review should be conducted
• Most done opportunistically
• Most patients unaware had review

22. Cancer Care Reviews –
patient views
•Acknowledgement of diagnosis, and general
support very important to patients.
•Most patients and FMs would welcome the offer
of a specific appointment to review their care
•“
“ ….I think that would be a good
idea… because it’s too easy just
to say ‘are you ok’, and I’m one
of these people that…says ‘yes,
I’m fine’; whereas if you’re given
an actual appointment …it’s a
much better outlet…”
“…I think if it’s an optional
thing then you don’t have to
go…but if it’s there I certainly
would have gone,…..you
know, it’s filling in those grey
areas that I’ve got”

23. Recommendations
1. Practice contacts patient at time of diagnosis
2. Cancer care review appointment offered at end of
active treatment - ?by practice nurse
3. Patient / FM sent list of potential issues they may
wish to discuss prior to appointment
4. More guidance to primary care teams on content
of review
5. Repeat review annually if patient / FM wishes.
Adams et al, BJGP, 2011; 61:274-275.

24. Other models of care
 Nurse-led follow-up in primary care
 Nurse-led telephone follow-up (secondary care)
 Nurse-led postal follow-up (secondary care)
 Key worker
 Others…

25. NCRI Primary Care Clinical
Studies Group
Screening; Early Diagnosis; Survivorship
Multi-disciplinary group
Aim: foster collaborations; generate trials
Role of primary care in follow-up:
What is the optimal role for primary care in the
follow-up care of men with prostate cancer?
- Guidelines review; interviews with patients;
interviews with professionals; primary care notes
audit

26. Prostate follow-up
• Men with prostate cancer – physical, sexual,
psychological needs
• Current follow-up practices variable and often
failing to meet these needs
• Both secondary and primary care see a greater
role for primary care in cancer follow-up
Can a nurse-led psycho-educational intervention
delivered in primary care will lead to greater
improvements in prostate-related quality of life
than

27. PROSPECTIV: pilot trial of a nurse-led
psycho-educational intervention delivered in
primary care to prostate cancer survivors
Phase 1 – questionnaire (N=300)
• How common are problems with urinary,
bowel, sexual and hormonal functioning
following treatment?
•What follow-up care do men receive, what unmet needs do
they have?
Phase 2 – pilot trial (N=80)
•Can nurse-led follow-up in primary care lead to greater
improvements in prostate-related quality of life than usual
care?

28. Nurse intervention
Initial appointment in local GP
surgery, tailored to address issue(s)
of most importance to individual’s
quality of life
• Needs assessment
• Identify any medications / treatments that may be helpful
• Promote self-management by giving information, helping
with goal setting and establishing coping strategies
• Refer to GP, continence service, ED service etc as
appropriate
•Follow-up appointment(s) according to need, with
telephone follow-up for all at six months

29. Preliminary findings
Phase 1
Response rate: 56%
On-going problems: 70% of respondents
On-going problems AND interested in Phase 2: 51% of
respondents
Phase 2
•Intervention now being delivered
•Well received thus far…..

30. In the words of the patients
“The British approach to medical treatment isnot sufficiently holistic – we treat the symptomor the immediate disease and have littleconcern about the overall good health of thepatient” – 185
“Talking to other men in
support groups has been
a great help, especially
when deciding which
treatment to have"
“I don’t consider I have cancer
any more, although of course
there’s a bit of anxiety when I
get the next PSA test results –
“How do we manage if needs are not met?
1) Purchase services
2) Rely on friends for emotional support,
personal care and practical assistance
3) Suffer in resigned disappointment” -
331
“Great team in
urology @
[hospital] –
AAA+”
“You ask about
‘after care’ – I get
an injection every
three months and
see a junior
doctor at
[hospital] who
can’t answer a
simple question!”
“Most helpful
of all has
been the
ability to get
in touch
(usually very
quickly) with
the prostate
nurse at
[hospital]” –
493
“…. I constantly fear that I’m wasting time
and they want me out of the consulting
room as quickly as possible. […] Thank
you for the chance to fill in this
questionnaire […] feels good to know that
somebody cares enough to try to improve
things.” - 429

31. Future work for primary
care survivorship group
Cancer recurrence
• Patient and health professional knowledge and
awareness of important signs of recurrence
• Assessment and management of fear or
recurrence
• Development of methods / symptoms for early
diagnosis of recurrence

32. Conclusions
• Increasing numbers of long term cancer survivors
• Growing evidence of reduced health status,
psychosocial concerns and unmet needs amongst
some…….but not all
• Impact on family
• Need for targeted approaches

33. Conclusions (2)
• Need to understand more about how common
specific problems are at various time points and who
is at risk of developing these problems
• Need further work developing and testing
interventions to support cancer survivors
• Need to rigorously test new models of service
delivery

34. Acknowledgements
Oxford Brookes Oxford University
Mary Boulton Peter Rose
Eike Adams Nada Khan
Daniel Turner Sian Harrison
Emma Frith
Clare Wilkinson; Richard Neal; David Weller;
Christine Campbell
Cancer Research UK; Macmillan Cancer Support;
Prostate Cancer UK

35. Thank you for listening!
ewatson:@brookes.ac.uk

37. GPRD analysis
• The General Practice Research Database
(GPRD) is the world's largest database of
anonymised medical records from primary care.
• Records for > 3.6 million currently registered
patients and >10 million patients in total
• 450 practices covering approximately 4.6% of UK population
• Records clinical events, prescriptions, referrals, tests
• Case control study of breast, colorectal and
prostate cancer survivors diagnosed more than 5
years ago (n=26,213)

38. Main findings
• Cancer survivors consult more than age-matched
controls
• Cancer survivors have increased incidence of
chronic illness
• Breast cancer: Heart failure, Coronary artery disease, Hypothyroidism,
Osteoporosis
• Colorectal: Diabetes, Osteoporosis, Dementia
• Prostate: Osteoporosis
• Consulting for anxiety and depression similar, but
breast and prostate cancer survivors more likely
to be prescribed anti-depressants
• Cancer screening and preventive care
comparable between survivors and controls