Transcript Document
Self-management strategies utilised by men with prostate cancer
Dr Eil ís McCaughan c o-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 self management 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
time points: and
side-effects
at 4 • 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 Hot flushes, and urinary symptoms were most difficult to deal with at the 4-6 week period, but ongoing Men were affected most by fatigue and bowel symptoms at all the time points, 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 Active Coping * Denial * Substance Use 3.2 (1.5) 4.1 (1.9) 2.6 (1.1) 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* Planning Humour Acceptance* Religion* Self-blame 4.0(1.9) 3.7 (1.6) 3.2(1.6) 6.5 (1.6) 4.4(2.3) 2.1 (0.4)
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)
TP2
6.6 (1.6) 4.3(2.2) 2.1 (0.5)
TP3
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)
TP4 6months post XRT 1year post XRT
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 post treatment 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 Carrying a urinal in car Differentiating between drinks Sitting in back of hall/near door Awareness of toilet facilities within shops or restaurants 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 side effects 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)