Shared decision-making about treatment for
colorectal cancer: The perspective of older patients
Dr Jaqualyn Moore, Dr Karen Gillett, Harriet Watson, Claire McGilly, Dr Cath Taylor
Background
Shared decision making (SDM)
The White Paper, Equity and Excellence: Liberating the NHS set out
the Government’s plan for a patient centred National Health Service
based on the principle of shared decision making:
‘no decision about me without me’ (DOH, 2010, p. 13).
SDM is a process whereby:
‘patients are actively involved in shared decision making and
supported by healthcare professionals to make fully informed
choices about investigations, treatment and care that reflect what is
important to them.’
(NICE, 2012)
Older Adults and colorectal cancer
• Approximately 40,000 new cases of colorectal cancer each year in
UK
• Almost 75% occur in people over 65 (Cancer Research UK, 2014)
• Half of people with colorectal cancer survive for at least 5 years
but older people have a worse prognosis than younger patients
(Dekker, 2011)
• Older people increasingly likely to have multiple health problems,
lack social support and find travel difficult (DOH, 2012)
• Most common treatment is surgery (80%) but may also receive
chemotherapy after surgery (Cancer Research UK, 2014)
What existing research tells us
• UK cancer survival rates for older people are the worst in Europe
(Moller et al, 2011)
• Overall cancer survival rates are improving but less so for people aged
74 to 84 and survival for 85+ is getting worse (Moller et al, 2011)
• Cancer clinical trials often exclude older people on the basis of age or
morbidity (Seymour et al. 2011)
• Older people less likely to have their symptoms fully investigated and
are less likely to be referred for essential treatment (British Geriatric
Society, 2011 – survey of 200 geriatricians)
• Lack of research into the influences of emotional and social factors on
treatment decision making (Tariman et al, 2010)
• Often incongruence between family and patient if family make
decisions on part of patient (Siminoff et al, 2006)
• A UK survey of medical oncology trainees (n=64) found that 21%
confident of ability to treat older patients compared to 81% confident
to treat younger patients (Kalsi et al, 2013)
Treatment decision making
• ‘Patients should have the opportunity to make informed decisions
about care and treatment in partnership with health
professionals and families’ (NICE, 2011: Guidelines for colorectal
Cancer Treatment)
• Diagnosis and treatment of colorectal cancer involves discussion
of bodily functions and invasive procedures
• Intensive cancer treatment improves clinical outcomes but
potentially decreases quality of life (DOH. 2012)
• Patients may focus initially on being cancer free and getting
through surgery rather than longer term implications (Park et al,
2014)
• Post cancer treatment there may be uncertainty about future,
change in bowel function and altered body image
Treatment decision making contd.
• Dekker et al. (2011) compared population survival data for 9397
patients with colorectal cancer in the Netherlands. They found
that patients over 75 tended to present later, have more
comorbidity, receive less aggressive treatment, and be more likely
to discontinue treatment early
• If older patients survived the first year, they had the same cancer
related survival as younger patients (Dekker et al. 2011)
Basis for this research
• Matthias et al. (2013) argue that a tendency of research into SDM
to focus on easily observable aspects of the decision making
process which misses the complexity
• Johnson (2012) recommends research to develop an
understanding of the treatment decision-making process for older
patients to facilitate the provision of relevant information and
support
• Strohschein et al. (2011) suggest research needs to focus on the
patient’s actual experience of health related decisions and on
understanding the structure, content, influencing factors, and
consequences of patient decision making itself
The missing piece?
Geriatrician?
Family
Other Health
Professionals
Patient
perspective
GPs
Oncologists
Surgeons
Guidelines
/Protocols
Study aim
• To understand the experience of treatment decision making from
the perspective of the older person with colorectal cancer
Eligibility
Inclusion criteria
• Age: We purposively selected patients
from the ‘young old’ (65-74), ‘old’ (75-84)
and older old (85+) age ranges
• Diagnosis of potentially curative colorectal
cancer
• Patients who had the option of treatment
• With recent experience of treatment
decision making (past 18 months)
• Those who health care professionals
judged to have the capacity to give
informed consent to participate in research
Study participants by age/gender
Age
Male
Female
Totals
65 - 74
7
3
10
75 - 84
3
4
7
85+
1
2
3
9
20
Totals 11
Methodology
• Qualitative interview study
• Patient and public involvement – study, information sheet and
topic guide reviewed by patient research group Beating Bowel
Cancer
• Proportionate Review - NHS Research Ethics Committee
• Potential participants initially approached by Colorectal Clinical
Nurse Specialist and given information sheet
• Contacted by researcher who answered questions and if they
wanted to go ahead arranged time for interview
• Interviews conducted in person or by telephone
• Interviews lasted between 35 and 90 minutes
Framework approach to analysis (Ritchie & Lewis, 2003)
Data management and interpretation sequential with the aim of
ordering data to facilitate interpretation
• Initial themes based on topic guide
Interpretation involved:
1. Thematic analysis and categorisation
e.g.. Information sources, outcomes of shared decision
making
2. Explanatory analysis
e.g. Factors influencing the decision made, what influences
the way people feel about the decision made
Findings
Factors influencing decisions
• Previous experience of treatment (especially chemotherapy)
• Fears about treatment (chemotherapy, colostomy, ileostomy)
• Age ‘I have had a good life’
• Previous experience having cancer
• Family history of cancer ‘It was inevitable’
• Family wishes
• Concerns about own ability to cope
• Wanting to live
• Quality of life ‘don’t want to be sick and bald’
• Happy to trust the consultant to make the right decision
• Comorbidity
Treatment pathways after diagnosis
No treatment
Surgery
Further
treatment
No further
treatment –
patients choice
Patient sometimes
unaware of decision
making process –
happy with decision
Patient more aware of
decision making
process – happy with
decision
No further
treatment –
medical decision
Patient less clear about
decision making
process – not always
happy with decision
Treatment pathways after diagnosis
No treatment
Further
treatment
Patient less aware of
decision making
process – happy with
decision
'I have no family which is a terrible
disadvantage in this situation and I
wouldn’t
Surgerywish that on anybody, you
really need either a supportive
partner or family or something
because
you are out No
there
in the
No further
further
wilderness
friends that
treatment –and all my
treatment
– I
spoke to
were verymedical
against
my ideas,
patients
choice
decision
they thought I should have the
operation which of course upset me
Patient more aware of
Patient less clear about
moredecision
than making
ever. I just wanted
decisionto
making
process – happy
with you must
processdo
– not
always
somebody
to say
what’s
decision
happy with decision
right for you’ (Julia, 79)
Treatment pathways after diagnosis
No treatment
Further
treatment
Surgery
If you want to hang
around a bit you’ve got to
No further
No further
go along
with what
the treatment –
treatment
–
hospital
says
(Alan 79 medical decision
patients
choice
married)
Patient sometimes
unaware of decision
making process –
happy with decision
Patient more aware of
decision making
process – happy with
decision
Patient less clear about
decision making
process – not always
happy with decision
Treatment pathways after diagnosis
No treatment
Surgery
There is no way they
No further
did anything
I
did
Further
nottreatment
want them to do treatment –
(Amy 84, widowed) patients choice
Patient less aware of
decision making
process – happy with
decision
No further
treatment –
medical decision
Patient more aware of
decision making
process – happy with
decision
Patient less clear
about decision making
process – not always
happy with decision
Treatment pathways after diagnosis
No treatment
Further
treatment
Patient less aware of
decision making
process – happy with
decision
Surgery
They said I am not well enough
to stand chemotherapy and so
the position is I am left as I am.
I don’t feel very happy about
that – I think about the end all
the time (Iris, 83. Single)
No further
treatment –
patients choice
Patient more aware
of decision making
process – happy with
decision
No further
treatment –
medical
decision
Patient less clear
about decision
making process – not
always happy with
decision
Factors influencing feelings about decision
Family
support
Prognosis
Effects of
cancer and
treatment
Ownership
of the
decision
Social
support
Overall
health
Medical
follow up
(or lack of)
Limitations?
Family
Other health
professionals
?geriatrician
Patient
perspective
GPs
Oncologists
surgeons
Guidelines
/protocols
Conclusion and what next?
• Many older people have clear ideas about what treatments
are acceptable to them
• Most older people are cognitively intact and able to make
their own decisions
• We were unable to answer the question posed by Macmillan
Cancer Support regarding don’t offer or don’t want.
However, we found a number of our participants did not
want treatment
What next?
• Exploring the older person’s preconceptions of
chemotherapy
References
Cancer Research UK (2014) Treating Bowel Cancer at http://www.cancerresearchuk.org/prod_consump/groups/cr_common/@cah/@gen/
documents/generalcontent/treating-bowel-cancer.pdf (accessed 19th August 2014).
Dekker, J., van den Broek, C., Bastiaannet, E., van de Geest, L., Tollenaar, R, and Liefers, G. (2011) Importance of the First Postoperative Year in the
Prognosis of Elderly Colorectal Cancer Patients Annals of Surgical Oncology, 18: 1533 – 1539.
Department of Health (2012) The Impact of Patient Age on Clinical Decision Making in Oncology, https://www.gov.uk/government/publications/theimpact-of-patient-age-on-clinical-decision-making-in-oncology (accessed 19th August 2014).
Kalsi, T.; Payne, S.; Brodie, H.; Mansi, J.; Wang, Y.; Harari, D. (2013) Are the UK oncology trainees adequately informed about the needs of older
people with cancer? British Journal of Cancer, 108 (10): 1936 – 1941.
MacMillan Cancer Support (2012) The Age Old Excuse: The under treatment of older cancer patient at http://www.macmillan.org.uk/
Documents/GetInvolved/Campaigns/AgeOldExcuse/AgeOldExcuseReport-MacmillanCancerSupport.pdf (accessed 19th August 2014).
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179.
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NICE (2011) Colorectal cancer: The diagnosis and management of colorectal cancer, NICE guidelines [CG131]
http://www.nice.org.uk/Guidance/CG131.
NICE (2012) Shared decision making: Quality statement at http://www.nice.org.uk/guidance/qualitystandards/patient
experience/SharedDecisionMaking.jsp (accessed 19th August 2014).
Park, J., Neuman, H., Bennett, A., Polskin, L., Phang, P., Wong, W., Temple, L. (2014) Patient expectations of functional outcomes after rectal cancer
surgery: a qualitative study, Diseases of the Colon and Rectum, 57 (2): 151 – 157.
Seymour, M., Thompson, L., Wasan, H., Middleton, G., Brewster, A., Shepherd, S., O’Mahony, S., Maughan, T., Parmar, M., Langley, R. (2011)
Chemotherapy options in elderly and frail patients with metastatic colorectal cancer (MRC FOCUS2): an open-label, randomised factorial trial,
Lancet; 377 (9779): 1749 – 1759.
Siminoff, L., Rose, J., Zhang, A., Zyzanski, S. (2006) Measuring discord in treatment decision-making; progress toward development of a cancer
communication and decision-making assessment tool, Psycho-Oncology, 15 (6), 528 – 540.
Strohschein, F., Bergman, H., Carnevale, F., Loiselle, C. (2011) Patient decision making among older individuals with cancer, Qualitative Health
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Contact details/for more information
Dr Karen Gillett
[email protected]
+44 (0)20 7848 3741