Men with metastatic (advanced) prostate cancer have a variety of supportive care needs including physical issues, communication, physiological/emotional needs, intimacy and sex, and information (Patterson et al 2017).
In addition, we know from the work presented by Afshar et al. at the EAUN Meeting in Copenhagen in 2017 that patients with a urological malignancy are five times more likely to commit suicide than those in the general population and that the ratio of suicide attempts to completed suicides was lower in patients with prostate cancer than that in the general population (1:7 vs. 1:25).
The specialist nursing role in advanced prostate cancer is varied, but may include:
• Support at diagnosis and regarding treatment decisions;
• Improving adherence and managing nonadherence to treatment;
• Monitoring treatments, response or progression and referral as appropriate;
• Proactive management of side effects and metabolic effects;
• Crisis management and rescue work;
• Support groups and education events;
• Finance and practical advice; and
• Advanced care planning and palliative care
Provision of supportive care can take place in a variety of ways, depending on patient preference and service demands. These may include face to face in consultations, nurse-led clinics, via assessment tools, by phone or email, through groups or seminars or other support-based activities.
The use of seminars and support-based activities can be an efficient and cost-effective way of reaching men. At Guys and St Thomas NHS Trust in London (UK) we have had a successful support group for many years and have also been using seminar-based events (“Healthy on Hormones”) to provide specific support and information for men on androgen deprivation therapy. We have also recently obtained charity funding for an associated project called the “Advanced prostate Cancer Club”.
“Providing forums where men can get information and support has been successful and rewarding for staff as well as patients.”
Our support group (Prostate life!) has been running for over 10 years at Guys Hospital and is open to any man who has been treated for prostate cancer at our hospital (regardless of treatment or stage). The sessions are popular and numbers of attendees have increased year on year. The group also has an email distribution list where members are kept up to date with information about meetings, news and information.
The meetings have a standard format: we start with an educational topic followed by the support element where members are able to talk amongst themselves or ask for specific advice. Refreshments are provided which adds to the relaxed and friendly environment. Some of the attendees have sent in their comments about what the support group has meant to them. Below are some testimonials:
“I have found the Support group extremely useful… The ability for new patients to be able to talk with men who have undergone treatments and explain how they have been affected and how they feel afterwards, is invaluable and offers reassurance.”
“Since coming to the support group over the past seven years the group has been very supportive towards each other. Through shared experiences the group has helped me overcome the fear, anxiety and anger that having cancer gives you. The lectures have helped us understand our condition at the various stages we are at.”
“The support group has made up for a major gap in my experience as, until diagnosed, I had no friends or relations with the disease and no prior knowledge of it. The group meetings have provided a very friendly and supportive framework and I am very grateful for the help and encouragement given by other members and all the professionals involved.”
Staying Healthy on Hormones Seminars
We know that there is a need for support and education for men on ADT around side effect management and metabolic effects. However, most education and support is given 1:1 in consultations or over the phone, often in the context of a nurse-led clinic also dealing with treatment response or disease progression. Information given in this way is not always retained and referrals were often not taken up when advice regarding side effects and heathy living were given in the context.
The aims of the seminar were to understand treatment and its side effects, and offer advice regarding side effect management, to suggest simple lifestyle changes to mitigate longer term metabolic effects, and, finally, to empower men to engage with primary care and take an active part in their monitoring and care (improve self-efficacy).
A total of 306 men and 74 friends/partners have attended the seminars and 289 evaluations have been completed. The evaluations have been extremely positive with most men finding the sessions useful, and all men saying that they would recommend the seminars to other men on hormone therapy.
Advanced prostate cancer club
We received a legacy donation from one of our patients for support for men with advanced prostate cancer. The donation was specifically for “palliative care”. We have set up a project to use the donation to provide Healthy on Hormones seminars, but also run a selection of small groups and workshops specifically for men with advanced prostate cancer based on palliative care principles. Palliative care aims to treat or manage pain and other physical symptoms. It also aims to help with any psychological, social or spiritual needs. The goal is to help patients and everyone affected by a diagnosis to achieve the best quality of life.
To inform the project, we ran a focus group for men and partners and also canvassed ideas from staff working with men with advanced prostate cancer. We asked what would be useful, whether there were unmet information needs, ideas for activities and groups, and where and when it should take place.
The themes discussed by the groups included, emotional support, understanding what support was available, help and advice with getting affairs in order including advanced care planning, financial help, physical issues including managing pain and fatigue, and activities where men could meet other men such as art and photography, day trips and gym and social events.
The first events organised are two-day trips and a course on art classes in order to build a community of men. We are working with palliative care to set up some more challenging events to discuss issues around death and dying, but the initial groups are around building a safe and supportive community where, through activities such as art and exercise, we can start to gain trust, peer support and open up some important lines of communication.
Providing forums where men can get information and support has been successful and rewarding for staff as well as patients. The advanced prostate cancer club builds on our experience with support groups and seminars and will be a valuable addition to the support we can offer to men, as we use non-medical locations and activities to provide a safe space to get support and discuss challenging issues.
Patterson et al 2017 Unmet Supportive Care Needs of Men with Locally Advanced and Metastatic Prostate Cancer on Hormonal Treatment: A Mixed Methods Study. Cancer nursing 40(6).
Louisa Fleure, MSc, Urology Lead Nurse, Guys and St Thomas, NHS Trust, London(UK), Louisa.Fleure@gstt.nhs.uk