A consumer's journey through a prostate cancer research project.

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The importance of consumer involvement in research has been increasingly recognised, as demonstrated by the National Health and Medical Research Council guidelines on consumer involvement in research. It is particularly pertinent to collaborate actively with consumers in the design and assessment of new models of care. Real clinical experience is critical in developing new health care interventions from both perspectives: the patient's and the health professional's. Wallace Crellin contributed, as a consumer, to the development of this multidisciplinary care intervention to improve psychosocial outcomes for men being treated for prostate cancer by External Beam Radiotherapy. The content, structure and style of the psycho educational group sessions was developed using a literature review, and expert opinion from a multidisciplinary team consisting of radiation oncologists, urology nurses, behavioural scientists, psychologists, radiation therapists and consumers.

"My background is civil engineering, including a professional lifetime of part and full time involvement with academia," said Wallace. "I was diagnosed with prostate cancer in 1993, and I took the treatment option of 'watchful waiting', mainly because I did not like the potential side effects from 'real' treatment.

"In 2003 I started real treatment with a trans urethral resection of the prostate (TURP) followed by hormones and radiotherapy. I brought to the team the special view of someone who has been through the process of prostate cancer diagnosis, treatment method decision, and treatment. Hence my advantage was that I knew the processes from personal experience, and could inform the group about possible concerns and outcomes from a consumer's point of view.

"Throughout my total treatment period nurses consistently worked to monitor and manage my side effects, giving general advice and guidance, particularly at a time when my usual clinical specialists were not available."

Progressing the intervention

The study was designed as four psycho educational group sessions and three individual appointments, says researcher and oncology nurse Kath Schubach at Peter MacCallum Cancer Centre in Melbourne. "The contacts were scheduled at critical periods throughout the patients' treatment regimes and were delivered by a clinical nurse specialist. Discussions involved addressing the participant's stated and anticipated concerns and issues, and providing information relating to each stage of their treatment, first as a group and then as individuals," Kath said.

"Patients were given the opportunity to bring their partners to the individual appointments to discuss any concerns but significant others were specifically not invited to the group sessions. This was to prevent participants being unwilling to 'open up' in front of partners. The participants supported that view."

Session 1 Commencement of treatment.

DISCUSSION TOPICS

* Anatomy

* The impact of cancer eg. emotions and

* Use of a patient diary 

"This session familiarises participants with the anatomy of the prostate and leads to a discussion about other relevant structures surrounding the prostate," Kath said. "In my case, I had ten years to learn about this topic through literature given to me by the director, Cancer Information and Support Services, Cancer Council Victoria, and by attending urology nurses' education sessions also at the Cancer Council of Victoria. Knowledge of this topic is essential to enable participants to understand what can happen to them both during and after treatment," Wallace said.

"Much is explained about potential side effects; how to recognise them and when to seek assistance. Recognition and explanation of problems is part way to a solution, and can be very helpful," Kath said.

"Emotions are often very difficult to discuss and tend to be rather personal for some people. The importance of good communication skills and promoting a safe environment for men to discuss such issues is particularly important to the participants," Kath said.

"Receiving pre-emptive information about potential problems is an effective way of forewarning about side effects," says Wallace. "In my case, even though I felt that I was in complete control, I suffered what I now recognise as emotional problems on two specific occasions at diagnosis and at the start of my treatment."

For some people, the need to write down their experiences allows them to record their feelings, queries and other issues in an orderly fashion, so participants were given a Peter Mac Diary for this purpose. This information can be used later in discussions with nurses and clinicians at subsequent visits.

Session 2

DISCUSSION TOPICS

* Side effects: urinary problems

* Bowel problems

* Fatigue

* Emotions

This session discusses the reason why these symptoms occur, and how these symptoms may effect the participants on a day to day basis. It also gives them some self care strategies on managing their symptoms and allows them to share their experiences. They are informed about when and how to get medical intervention for their symptoms.

Session 3

DISCUSSION TOPICS

* Review of strategies to manage signs and symptoms

* What happens at the end of treatment

* Potential long term effects of radiotherapy and

* Experiences after treatment

This session continues the discussion about common side effects, and participants share their experiences of how they have managed them. It also informs them about their follow up appointments, blood tests and the ongoing symptoms they may experience. The nurse explains potential long term side effects and offers men strategies to deal with these situations.

Session 4

DISCUSSION TOPICS

* Communication strategies

* Intimacy, relationships, sexuality

* Medical strategies for erectile dysfunction; and

* Issues related to cancer survivorship 

This session examines the importance of communicating with partners, especially when managing changes with sexuality and intimacy. Strategy skills are addressed to assist the participants who then share their experiences and thoughts regarding this subject. There is also a discussion on usual sexual function and the medical strategies of dealing with erectile dysfunction. The facilitator also discusses the issue of survivorship, and encourages the participants to share their experiences of being diagnosed and the experience of going through treatment for prostate cancer.

Conclusion

"Having experienced most of the topics discussed in these sessions, it is interesting to see how others, as new patients, respond as a result of group and one-on-one meetings", said Wallace. "Generally, it has been found the participants felt that the fore warning nature of the education sessions, as well as the advice they received, was helpful. I can well understand this to be the case--I believe that this type of informed advice would have helped me."

With the successful conclusion of this intervention, it is expected that interventions like it could well become standard practice in the treatment of this and other cancer types.

WALLACE CRELLIN, BCE MELBOURNE UNIVERSITY, DIP LD RMIT UNIVERSITY.

KATH SCHUBACH, BACHELOR OF NURSING VICTORIA UNIVERSITY OF TECHNOLOGY, GRADUATE CERTIFICATE ONCOLOGY NURSING, PETER MACCALLUM CANCER CENTRE AND MELBOURNE UNIVERSITY, KATH'S CURRENTLY WORKING AS A CNS AT PETER MacCALLUM CANCER CENTRE.