Self-management strategies utilised by men with prostate cancer Dr Eil s McCaughan co-Investigators: Oonagh Mc Sorley

1. Self-management strategies utilised by men with prostate cancerDr Eilís McCaughanco-Investigators:Oonagh Mc SorleyProfessor Kader Parahoo Dr Joe O’SullivanProfessor Hugh McKennaDr Sonya McIlfatrickProfessor Brendan Bunting

2. 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

4. “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

5. 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

6. 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

7. 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

9. 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

10. Aim To explore how men with prostate cancer experience, and cope with, the effects of radiotherapy treatment over an 18 month period

11. Objectives To measure quality of life and side-effects at 4 time points:- To measure ways of coping at the 4 time points

12. 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.

13. 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

14. 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

15. 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)

16. 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.

17. Findings being presented Overview of Quantitative data Selected Qualitative data Specific Symptoms - Sexual issues - Urinary issues - Living with Uncertainty The Way Forward

18. Findings:-Demographic Profile Mean age 68 years (range – 53 – 79) Married n=130 men Retired n=107 men Higher education n = 62

20. Brief Cope scale The scale measures 14 different ways of coping Mean scores and standard deviations were measured for the 14 different ways of coping across the 3 time points. Paired t-tests were performed between the timepoints.Mean scores and standard deviations were measured for the 14 different ways of coping across the 3 time points. Paired t-tests were performed between the timepoints.

21. Mean scores (standard deviation) and range of Quality of life scales at the 4 time points (TP) (n=149)? TP1 TP2 TP3 TP4 Before XRT 4-6 wks post XRT 6months post XRT 1year post XRT Brief Cope Scale Self-distraction 3.2 (1.5) 3.1(1.5) 3.1(1.5) 3.0(1.5) Active Coping * 4.1 (1.9) 3.8 (1.9) 3.5 (1.8) 3.5(1.7) Denial * 2.6 (1.1) 2.3(0.8) 2.3 (0.8) 2.2(0.6) Substance Use 2.2 (0.8) 2.2(0.8) 2.2(0.8) 2.1(0.6) Use of emotional support* 4.8(2.0) 4.7(1.9) 4.2(2.1) 4.0(1.9) Use of instrumental support* 4.0 (1.8) 3.3(1.4) 3.3(1.6) 3.0(1.4) Behavioural disengagement 2.1(0.6) 2.1(0.7) 2.2(0.7) 2.2(0.8) Venting 2.4(0.9) 2.4(0.9) 2.4(0.9) 2.4(1.0) Positive reframing* 4.0(1.9) 4.1(1.9) 3.4(1.7) 3.3(1.7) Planning 3.7 (1.6) 3.2(1.6) 3.0(1.5) 2.8(1.3) Humour 3.2(1.6) 3.2(1.6) 3.0(1.5) 2.9(1.5) Acceptance* 6.5 (1.6) 6.6 (1.6) 6.2 (1.9) 5.9(2.1) Religion* 4.4(2.3) 4.3(2.2) 4.2(2.2) 4.1(2.2) Self-blame 2.1 (0.4) 2.1 (0.5) 2.2(0.6)? 2.1(0.4) All the coping ways were used –great variance.one that was used the most was acceptance All the coping ways were used –great variance.one that was used the most was acceptance

22. Tp1 125 men,tp2 113 men ,tp3 94men consistent use throughout the 3 timepoints, men stoic,uncomplaining glad to be alive and survived cancer if they only have a few symptoms to put up with.Tp1 125 men,tp2 113 men ,tp3 94men consistent use throughout the 3 timepoints, men stoic,uncomplaining glad to be alive and survived cancer if they only have a few symptoms to put up with.

24. 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 There was a sub-group of men who are using negative coping-substance abuse-9men TP1 TP2 TP3 venting & self blame 6 menThere was a sub-group of men who are using negative coping-substance abuse-9men TP1 TP2 TP3 venting & self blame 6 men

25. 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

26. Sexual Issues Urinary Issues Living with uncertainty

27. 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

28. “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.”

29. 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’

30. “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.”

31. 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

32. 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

33. “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.”

34. Management strategies Always going to toilet before leaving house Not drinking prior to leaving house Carrying a urinal in car Differentiating between drinks On arrival, immediately locating toilet Sitting in back of hall/near door Awareness of toilet facilities within shops or restaurants Restricted social outings

35. 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

36. “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.”

37. “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.”

38. 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

39. 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

40. 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

41. 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

43. Thank you to The Ulster Cancer Foundation for funding and ongoing support