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The development of an educational and self-management programme for patients with early prostate cancer

Project title
 

The development of an educational and self-management programme for patients with early prostate cancer

 
Project reference
 

159

 
Final report date
 

20 May 2015

 
Project start date
 

01 October 2013

 
Project end date
 

01 January 2014

 
Project duration
 

3 months

 
Project keywords
 

Prostate Cancer; Active Surveillance; Anxiety; Qualitative Research; Group Support; Internet Interventions

 
Lead investigator(s)
 
  • Professor George Lewith, Department of Primary Care & Population Sciences, University of Southampton
 
NIHR School Collaborators
 
  • Dr Sam Watts, Department of Primary Care & Population Sciences, University of Southampton (Post-doctoral Research Fellow)
 
Collaborators
 
  • Dr Geraldine Leydon, Department of Primary Care & Population Sciences, University of Southampton (Associate Professor of Health Research)
  • Miss Stephanie Hughes, Centre for Applications of Health Psychology, University of Southampton (Senior Research Assistant)
  • Dr Emily-Arden Close, Centre for Applications of Health Psychology, University of Southampton, (Post-doctoral Research Fellow) 
 

Project objectives

The aim of the current investigation was to design, based on the information collected from our qualitative interviews with AS patients, a PCa specific support intervention that will be effective at allowing AS patients to better manage the psychological and emotional burden of AS.

Based on the available literature and the experience of this group in developing similar support material such an intervention is likely to be made up of two key components: 1) Group based support sessions and 2) internet support.

Brief summary

The aim of this study was to develop a feasible and appropriate intervention that we can pilot for patients within an AS management programme with a view to developing the proposed programme so that we can evaluate it in a small pilot/feasibility study as our next step.

Population

This intervention will be targeted specifically at PCa patients being treated with AS.

Intervention

The exact format and content of the intervention will be dependent upon the data gathered from the on-going interviewing study currently being conducted at Southampton. However, we anticipate that the intervention will include the following:

We propose that the intervention will consist of three group sessions, supplemented by a website. This may be modified subject to the qualitative interviews that are currently underway.  The planned content of these sessions is based on our previous experience with cancer specific sites and we would propose the following;

Group sessions

Session 1: Information support group facilitated by a PCa clinical nurse specialist.

This group will enable the men to talk about their views on the treatments they are undertaking, why they have chosen such treatments, why they like them and why they don’t, whether they are thinking of progressing/changing treatment options and their fears of doing so (i.e. treatment related side effects etc). The group will be patient-led in the sense that the content will be determined by patients, but the PCa nurse specialist will be able to provide detailed information on clinical issues and to answer any treatment related questions the PCa patients have. At the end of the session, participants will be given cards with the website address and details regarding how to log on to the website.

Session 2: Group based educational intervention.

A PCa clinical nurse specialist will talk to PCa patients to explain to them in very simple terms the clinical nature of their very localised slow growing PCa, why their diagnosis does not really pose a threat to them in terms of reducing their life expectancy and to try and get the patients to think of their illness as a chronic conditions (much like diabetes) which can be managed passively for many years, rather than an instant killer which most people view cancer as. Essentially this involves using cognitive restructuring techniques to alter the ways in which the patients view their condition.

Session 3: Anxiety and stress reduction.

Participants will be informed that stress and anxiety are bad for them in that not as well as lowering QoL they may also result in progression to radical treatment when there is no need, clinically speaking, to do so. They will then be offered specific stress reduction techniques to allow them to better manage any distress they may experience over the duration of their treatment in a bid to allow them to live and cope better with the stress and uncertainty of being treated passively with AS.

The funding that we are currently applying for is to develop the exact content and format of this intervention, based on the data obtained from the interviews currently being conducted. This round of funding will not be used for the actual delivery and piloting of the developed intervention.

The website

The website will be designed to supplement the group intervention and will include the following components:

An Active Surveillance Decisional Aid. This will include an evidence based overview of:

  1. When AS is a viable treatment option and when it is not and why;
  2. The benefits and risks of AS;
  3. How disease progression will be monitored to ensure any progression is identified;
  4. What patients can do if they are concerned about being treated with AS;
  5. What the next steps are if disease progression does occur;
  6. An overview of the evidence for and against AS versus radical treatment in terms of side effects and life expectancy.

As the third session covers instruction in a stress reduction technique, there will be a section on the website dealing with anxiety and stress. This will include:

  1. Biological information on why anxiety and stress are bad for you;
  2. Scientific evidence/ information demonstrating that anxiety and stress may result in progression to radical treatment when there is no need based on PSA levels or other medical information to do so;
  3. Detailed information on how to carry out the stress reduction techniques covered in the session.

Plain English summary

Prostate cancer patients who have localised cancer are often managed with active surveillance (AS). AS involves closely monitoring disease progression but does not involve any invasive treatment. AS often causes high levels of anxiety as men are asked to live with an untreated cancer in their body. This is important as anxiety often causes AS patients to ask for surgery to remove the cancer even though this isn’t the best option clinically, resulting in unpleasant physical side effects.

To address this, the aim of the current study was to develop an initial outline of an AS specific support intervention to allow AS patients to better cope with being managed AS and in doing so reduce the anxiety they experience.

Based upon our qualitative data we have designed a 6-week intervention that consists of 3-group sessions and 6 online sessions delivered over the internet.

We now plan to further test and refine the current version of the intervention by testing it on a sample of AS patients prior to piloting it.

Dissemination

Published articles

  1. Watts, S., Leydon, G., Birch, B., Prescott, P., Lai, L., Powell, C. & Lewith, G. (2013). Depression and anxiety in prostate cancer: a systematic review and meta-analysis of prevalence rates. British Medical Journal Open 2014; 4: e003901. doi:10.1136/ bmjopen-2013-003901.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3963074/
  2. Bradbury, K., Watts, S., Arden-Close, E., Yardley, L., & Lewith, G. (2014). Developing Digital Interventions: A Methodological Guide," Evidence-Based Complementary and Alternative Medicine, vol. 2014, Article ID 561320, 7 pages, 2014. doi:10.1155/2014/561320.
    http://www.hindawi.com/journals/ecam/2014/561320/

Planned articles

  1. Watts, S., Leydon, G., Lewith, G., Arden-Close, E.J., Richardson, A., Birch, B., Moore, C.M., Ridout, A.J. & Powel, C. (2013). The Prevalence of Depression and Anxiety in Prostate Cancer Patients Undergoing Active Surveillance. (Paper accepted by BMJ Open).
  2. Hughes, S., Watts, S., Arden-Close, E., Bradbury, K. & Lewith, G. The development of an integrated self-care programme for managing psychological distress in prostate cancer patients being managed with active surveillance. Paper in preparation.

Public involvement

Through our contacts, we invited Mike Hollingsworth (living with prostate cancer) to act as our expert patient, and he agreed to take on this voluntary role. Mike has been involved in the development of the project, its objectives and procedures. He is a full collaborator on the study and participated in guiding all aspects and stages of the intervention design and development, particularly the analysis of data and dissemination of the findings to relevant organisations and charities. In Mike’s second role, he liaised with the Prostate Cancer Support Organisation (PCaSO; Hampshire division) to identify other prostate cancer patients to comment on the design and development of the intervention and allow for any fine tuning. This has resulted in the development of a strong collaborative relationship with PCaSO whose members on AS have had a considerable input into this study. PCaSO also provided us with patients to interview as part of this study.

We have also made contact with the prostate cancer group at the NCRI and are working with their expert patient, Prof Ian Jamieson, who is living with prostate cancer, to ensure that we maximise PPI input in the developmental stage of this investigation. Prof Jamieson will be working, inputting and liaising with our research team throughout the design and piloting of the intervention.

Impact

The intervention developed through this study has subsequently received a 3-year funding grant from Prostate Cancer UK to further test the feasibility of delivering the intervention in the NHS. This study commences in June 2015.

This project was funded by the National Institute for Health Research School for Primary Care Research (project number 159)

Department of Health Disclaimer

The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the NIHR School for Primary Care Research, NIHR, NHS or the Department of Health.