Self-management strategies
utilised by men with prostate
cancer
Dr Eilís McCaughan
co-Investigators:
Oonagh Mc Sorley
Professor Kader Parahoo
Dr Joe O’Sullivan
Professor Hugh McKenna
Dr Sonya McIlfatrick
Professor Brendan Bunting
Background
 PROSTATE CANCER most common cancer in
men
 Survival rates have increased
 Increased number of men now living with aftermath
of disease and treatment
 Limited support and awareness provided for MEN
to help them cope with the disease and its
treatment
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“For many of the types of cancer that we looked at
that affect both sexes, there’s no known
biological reason why men should be at a greater
risk than women, so we were surprised to see
such consistent differences…..
…. Men have a reputation for having a ‘stiff upper
lip’ and not being as health conscious as
women.”
Professor David Forman (2009) NCIN
Men and cancer support
 Men are less likely than women to utilise
psychological support services
 Men are low users of cancer information services
 Current prostate support groups poorly attended
 Voluntary groups expressed difficulty in recruiting
and retaining men on their programmes
 However, men do care about their health and
want to be pro-active in collaboration with HCPs
Current Support Interventions (Prostate)
 Not evidence based, limited data available on
intervention development
- Different disease time-points
- Ongoing programmes
- For men only
- Limited attendance with high drop-out rates
- Limited understanding on the actual needs of these
men and how they cope
- Interventions not gender specific, based on ‘female’
approach
 Interventions traditionally based - therapist
prescribes the intervention and offers information
and technical skills, while patients follow
instructions
 Need for Patient-oriented interventions,
maximising men’s own self-management
strategies to ensure maximum QoL and coping
 Need to develop patient- focused model of
supported self-management
Programme of work: Men with
Prostate Cancer
 Part one: Experiences, Symptoms, QoL, coping
and self-management strategies utilised
 Part two: Develop and test a psychosocial selfmanagement intervention.
 Part three: Future, multi-site, RCT
Aim
To explore how men with prostate cancer
experience, and cope with, the effects of
radiotherapy treatment over an 18 month period
Objectives
• To measure quality of life and side-effects at 4
time points:• To measure ways of coping at the 4 time points
Before
XRT
TP1
4-6weeks
After XRT
TP2
6months
Post XRT
TP3
1year
Post XRT
TP4
Objectives
 To explore, in-depth, the ongoing impact of
radiotherapy and the disease on their lives and on
their partner/families.
 To explore, in-depth, their coping styles and
strategies (in particular self-management) with the
impact of radiotherapy and of the disease.
Methodology
 Prospective, longitudinal, exploratory design
 Qualitative and quantitative methods
 Data collection over 4 time points,
Commencement of radiotherapy
Within 4 weeks of completion
At 6 months
At 1 year
 Data collection tools (tried and tested)
The EORTC QLQ-C3O (Quality of life tool)
The Prostate Cancer Module QLQ-PR25
The Brief COPE Scale
Demographic details questionnaire (age, education, etc)
 In-depth qualitative interviews
Methodology
Sample:
 Consecutive patients attending Cancer Centre
 Oncologists referred men to the researcher
Inclusion criteria:
 Men, newly diagnosed with prostate cancer,
 StageT1-T2 with no nodal or metastatic
involvement
 Receiving radiotherapy and hormone ablation as
their primary treatment
Data Analysis
 The questionnaire data are being analysed within the
context of latent growth modelling
 Descriptive statistics are being conducted using SPSS
 Interviews have been transcribed and analysed according
to the techniques of Miles and Huberman (1994)
Progress to date
 Recruitment Nov 06 - Oct 07
 149 participants
 11 men participated in the in-depth interviews
 Response rate at time-point 2 -97%
 Response rate at time-point 3- 89%
 Response rate at time-point 4 –93%
 Data collection was completed by the end of
March 2009.
Findings being presented
 Overview of Quantitative data
 Selected Qualitative data
 Specific Symptoms
- Sexual issues
- Urinary issues
- Living with Uncertainty
The Way Forward
Findings:-Demographic Profile
 Mean age 68 years (range – 53 – 79)
 Married
n=130 men
 Retired
n=107 men
 Higher education n = 62
Interim ‘QoL’ Findings
 Quality of life declined for many men in the 4-6 week
post xrt
 Some men experienced limitations in their work and
social life 6 months post xrt
 Men were affected most by fatigue and bowel
symptoms at all the time points,
 Hot flushes, and urinary symptoms were most difficult
to deal with at the 4-6 week period, but ongoing
 Sexual function data could not be analysed statistically
because only 13/149 answered the questions.
Brief Cope scale
 The scale measures 14 different ways of coping

Mean scores (standard deviation) and range of Quality of life scales at the 4 time points (TP) (n=149)
TP1
Before XRT
Brief Cope Scale
Self-distraction
3.2 (1.5)
Active Coping *
4.1 (1.9)
Denial *
2.6 (1.1)
Substance Use
2.2 (0.8)
Use of emotional support* 4.8(2.0)
Use of instrumental support* 4.0 (1.8)
Behavioural disengagement 2.1(0.6)
Venting
2.4(0.9)
Positive reframing*
4.0(1.9)
Planning
3.7 (1.6)
Humour
3.2(1.6)
Acceptance*
6.5 (1.6)
Religion*
4.4(2.3)
Self-blame
2.1 (0.4)
TP2
4-6 wks post XRT
3.1(1.5)
3.8 (1.9)
2.3(0.8)
2.2(0.8)
4.7(1.9)
3.3(1.4)
2.1(0.7)
2.4(0.9)
4.1(1.9)
3.2(1.6)
3.2(1.6)
6.6 (1.6)
4.3(2.2)
2.1 (0.5)
TP3
TP4
6months post XRT 1year post XRT
3.1(1.5)
3.5 (1.8)
2.3 (0.8)
2.2(0.8)
4.2(2.1)
3.3(1.6)
2.2(0.7)
2.4(0.9)
3.4(1.7)
3.0(1.5)
3.0(1.5)
6.2 (1.9)
4.2(2.2)
2.2(0.6)
3.0(1.5)
3.5(1.7)
2.2(0.6)
2.1(0.6)
4.0(1.9)
3.0(1.4)
2.2(0.8)
2.4(1.0)
3.3(1.7)
2.8(1.3)
2.9(1.5)
5.9(2.1)
4.1(2.2)
2.1(0.4)
Acceptance
and
‘Getting on with it’
Interim ‘Coping’ Findings
 Men use emotional support up to 6 months post xrt
and instrumental support is used at the start of
treatment but declines overtime.
 Active coping and planning were common ways of
coping up to 4-6 weeks post XRT – keeping busy  Using positive reframing was a coping mechanism at
the commencement of treatment but was used less
as time progressed – may have become more
negative
Significant minority
 Very much affected by radiotherapy
 28% - decline in family & social life
 33% - decline in ability to involve
selves in work & hobbies
Severe symptoms persisting:
Fatigue
Bowel
Urinary
Metabolic
Qualitative findings
 Getting on with it
 Very pragmatic approach
 However, many frustrations and limitations
voiced
 Interviews, first time some had shared these
anxieties, especially sexual issues
 Sexual Issues
 Urinary Issues
 Living with uncertainty
Sexual Issues
 Sexual function:-The questions related to sexual function
were answered only by 13 /149 men and hence statistical
significance could not be assessed.
 Both the physical and emotional desire was gone for all the
men due to the hormone treatment
 Men struggled with this symptom and were reluctant to
discuss it with their healthcare
professionals/partners/interviewer
 They found it difficult to come to terms with the fact that they
no longer had any interest in sexual activity
 Men felt ‘cheated’ of their manhood. They had not
considered that the treatment would have such a
catastrophic affect on their sexuality
“He (the consultant) sort of dismissed that this
can affect the sexual thing and that will not
worry you, sure it won’t? No. It was sort
of…I felt…when I look back now, I felt he put
words in my mouth. I felt he was more or
less looking at my age and making a
judgement which wasn’t the right judgement
for me at that time because I was quite
active. We had an active sexual life at that
time. That has stopped.”
Sexual Issues
 They felt sorry for their partners (some men had
discussed it with their wife but others had not).
 Considered that their partners had not been provided
with any support to cope with the changed sexual nature
of their relationship.
 Interventions such as viagra had been tried
with limited success.
 Changed them as ‘men’
“Well I think there are wee gaps there that could be
worked on. I think if they (wives) heard it from the
doctor and they would have maybe a better
understanding of it as oppose to me stuttering
and stammering and trying to explain.”
Management of Sexual Issues
 Rarely discussed with
anyone
- Professional
- Partner
- Friends
 Thought about it but did
not talk about it
 Felt lost, not knowing if
there was anything that
could be done
 Occasionally asked for
help
 Viagra tried with minimal
result
 Vacuum pump
considered
 Felt cross
Urinary Frequency
 Most common symptom pre and posttreatment
 Set pattern sometimes emerged, e.g.
worse during evening or night
 Dribbling experienced, frustrating as
bladder neither empty of full
 Being near a toilet essential
 Resulted in fragmented sleep
“The only downside is that when you need to go to
the loo you need to go to the loo…You can’t say
I’ll wait so long, you need to find a loo quite
quickly or you will be in trouble.”
Management strategies
 Always going to toilet
before leaving house
 On arrival, immediately
locating toilet
 Not drinking prior to
leaving house
 Sitting in back of hall/near
door
 Carrying a urinal in car
 Awareness of toilet facilities
within shops or restaurants
 Differentiating between
drinks
 Restricted social outings
Living with Uncertainty
 At first time point, men focused on getting
through treatment
 Following treatment, a degree of uncertainty
emerged
 Living with possibility that ‘cancer will
come back’
 Feeling of abandonment immediately
after treatment had finished
- Professionals
- Other men
“All the treatment is finished now and now it’s a
void and you don’t know what is going to happen.
I feel then it’s going to be a scenario of testing
and waiting for results and all that.”
“Even today’s interview…that has helped me. I
found it good to talk about it. If people haven’t
been through it they don’t understand it.”
Management Strategies








Partner – love, support & understanding
Partner got the brunt of it
GP minimal support
Cancer, at back of mind
Lived with unmet questions
Just ‘dealt’ with it best they can
Acceptance – getting on with it
Learning to live with this ‘new’ norm
Summary of findings
•
•
•
•
Men experience some side-effects of treatment.
Subset of men who experience severe sideeffects up to 6 months post-treatment.
Most men accept their diagnosis and treatment
and try and remain positive throughout the
journey
Partners provide main support
• Men appear passive in their participation of their
prostate cancer healthcare
• Limited involvement with HCPs to ‘work in
partnership’
• Many of men’s problems were ‘managed’ by
burying their heads in the sand
• Men do develop some strategies to self-manage
their care – both positive and negative
Where do we go from here?
• Getting men to think about what they can do for
themselves – maximise emotional, psychological
and physical well being
• Enable strategies to self-manage which need to
run across the board and not become a ‘bolt on’
• Recognise the individuality of need
• Identify men with greatest need
• Include men’s partners within support
programmes
“There is a lot going on, a lot
to cope with and I have had
a lot of loss, but I am able
to keep my head above
the ground, I am still
alive and kicking
and that’s what counts!”
(62 year old with man
with prostate cancer)
McCaughan et al (2009)
Thank you
to
The Ulster Cancer Foundation
for funding and ongoing
support