Meet the team
Prostate Cancer UK have a team of 13 Specialist Nurses who provide support and information over the phone, online and via email to men affected by prostate cancer and their families.
The big idea
In 2011, Prostate Cancer UK, in conjunction with King’s College London, were awarded a Knowledge Transfer Partnership grant by the Department of Trade and Industry to design and pilot a new service to support men with prostate cancer experiencing fatigue. Following the successful pilot, a Fatigue support service was established in February 2013, as part of the services offered by Prostate Cancer UK’s Specialist Nurses.
Making it happen
The service consists of a series of four telephone calls over a 10 week period delivered by a Specialist Nurse trained in motivational interviewing. The nurses support and encourage men to make positive changes to behaviour and lifestyle with the aim of reducing the negative impact of their fatigue. Changes in behaviour could include:
- increasing exercise
- increasing social activities
- getting back into hobbies
- changing diet
Finding out what works
Both quantitative and qualitative data was collected to understand both the users themselves and how they found out about the services, and to provide a better understanding of the impact of taking part in the Fatigue support service.
Data was collected for all men assessed for the service after 1 April 2015 and included all activity up to 25 September 2015.
Fatigue levels are measured on a scale of 0-10 (with 0= no fatigue and 10= as bad as you can imagine) throughout the service. Participants score their ‘usual’ and ‘worse’ fatigue experienced in the past week.
Telephone interviews were carried out eight weeks following completion of the service for men enrolling after 1 February 2015. Thirteen interviews took place between 1 April and 1 September 2015. We use a framework of semi-structured questions for the for the telephone interview. This allowed the interviewer the freedom to explore themes with a combination or open-ended and closed questions.
A number of themes emerged from the quantitative interviews.
The emotional impact of fatigue
Many men described the emotional impact fatigue had on them prior to starting the service. After completing the service men reported feeling much more confident and happier in their daily lives.
Dedicated time to talk
Half of the men interviewed said the conversations were the most important aspect of the service. Men found it reassuring to know how common fatigue is following treatment for prostate cancer and the importance of it being recognized by a health professional.
Managing time better
Men talked about the importance of planning their day better. Prior to taking part in the service, there was a sense of ‘battling on’. Nurses worked with men to prioritise tasks and plan their day.
Knowledge of the nurse
Most of the men interviewed commented on the knowledge and skill of the nurse. One man described the nurse as the impetus for change, knowing that she would call back to find out what he had achieved. Men gave examples of ways in which the nurse made a difference including:
- Practical tips for coping with symptoms and side effects
- Knowledge of side effects of medication
- Understanding of the impact of a prostate cancer diagnosis
Change in outlook and attitude to fatigue
The service helped to change the way men thought about their fatigue. For most men this was as a result of change in the way they managed their fatigue and for others an acceptance of their situation.
Barriers to change
Only one man said he found no benefit from the service. He put this down to difficulty focusing because of other medical conditions and chronic pain. While for some men the emotional impact of their situation is helped by taking part in the service, for others it may be a barrier to change. One man we interviewed felt that although he found it helpful to talk, his situation remained unchanged because of his low mood. Good assessment is important to ensure this service is the most suitable form of support for men.
About the service users
- 42 men assessed to take part in the service
- 35 men recruited
- The average age of participants was 66
- The majority of men were treated with either hormone therapy or radiotherapy or a combination of both
Both usual and worse fatigue levels are seen to reduce throughout the service. Because the service takes approximately three months from assessment to evaluation interview, only thirteen participants had completed the service and only five men, have scores ranging from assessment through to evaluation.
The usual fatigue level has a greater reduction than the worse level. This suggests that although levels of fatigue may remain severe at times, day to day life is improved with lower levels of usual fatigue. The impact of the fatigue is therefore also assessed through the evaluation interview.
Both the quantitative and qualitative results demonstrate the service is effective in reducing fatigue levels and is highly valued. However the number of men taking part in the service is tiny in proportion of the number of men likely to be struggling with fatigue. Prostate Cancer UK will continue to promote awareness of this service to health professionals and men with prostate cancer at conferences and in our literature, on our website and via social media.