Some two million people in the UK are living beyond cancer, of which a third have a diminished quality of life or well-being. There is a wide variation in NHS provision for these patients, with unknown effectiveness and cost-effectiveness. The National Cancer Survivorship Initiative has highlighted these problems and sought solutions. We now know that poor quality of life is caused not only by the medical after-effects of cancer and its treatments, but also by related problems such as: fatigue, fear of recurrence, fear of dying, low mood, loss of self-confidence, altered body image, sexual problems, and physical inactivity.
Certain therapies can ameliorate some of these problems; both physical exercise programmes and cognitive behaviour therapy are moderately effective by themselves, but are rarely provided. There is an unmet clinical need to know whether both these interventions can be delivered by the same therapist in a more patient-centred, targeted way. In order to facilitate this, a development of cognitive behaviour therapy, known as Acceptance and Commitment Therapy, may provide a means to engage patients and facilitate change by encouraging patients’ flexibility to accept what cannot be changed and commit themselves to what can be. We need to know whether such an intervention is cost-effective, whether the effects persist, and who should deliver it (i.e. nurses or specialist therapists). Finally, these interventions may not help patients to resume work; vocational rehabilitation may also be required.
The study currently has a development grant and is conducting preliminary work;
1. A rapid review of current interventions
2. An audit assessing the validity and utility of quality of life and well-being measures in patients who have completed treatment or who are on maintenance/watch and wait treatments (with Heamo-oncolgy, Breast cancer, Colo-rectal cancer and Head and Neck cancer patients)
3. Nationwide survey of healthcare professionals regarding current practice for those living beyond cancer
4. Development of an ACT based intervention and tests of feasibility and acceptability
Professional Patient Panel
We are seeking to recruit a panel of individuals who have had direct experience of living beyond cancer, to assist in the development of our research
The core role of a patient member is to contribute to the development of our research. The research is around improving the quality of life of people who are living beyond cancer. We would value the input of people who have direct experience of living beyond cancer, particularly those who have had Breast Cancer, Colo-Rectal Cancer, Head and Neck cancers or Haematological Cancers.
Patient members on the Group will be able to contribute to the development of the Research as follows:
- Attend relevant meetings
- Read through the papers and other items beforehand
- Read and consider various documents, to provide comments where appropriate from a patient perspective
- Discuss and comment on items during meetings, and raise issues for consideration
- Take into account the responsibilities, viewpoints and expertise of other members
- Provide a patient perspective on research deliberations
- Respond to virtual sub-group meetings if appropriate, or external events/conferences and report back to the group
- Advise on general publicity for the research and on dissemination of research results
- Respect any requests for confidentiality, and declare any conflicts of interest if they arise.
- Contribute to reviews and evaluations of the groups work
People interested in becoming patient members will come from different backgrounds. Below is a wide-ranging list of skills and qualities for the role. It is recognised that individuals will have different combinations of skills to contribute. Selection will aim at balancing different characteristics, although obviously not all will be included.
Essential skills and qualities of patient/public members:
The most important personal skill for the role is a willingness to bring to the committee a balanced understanding of the wide range of different perspectives those living beyond cancer will have. Patient members should have direct experience of living beyond cancer, and should be at least two years post treatment.
Other essential qualities
- Able to give a balanced viewpoint, including an understanding of a range of different perspectives on those living beyond cancer
- Have the time to carry out activities such as reviewing documents, taking part in meetings in person or online discussions.
Desirable personal qualities of patient/public members:
- Medical charity experience is helpful, although patient/public members - like other members - are chosen because of their individual experience, not because of their affiliations or relationships with other organisations
- Keen interest in cancer services in the UK
- Good communication and team-work skills
- Patient/public members will find it highly advantageous to have access to email, the internet, and a printer, and be reasonably proficient in their use.
- Self confidence in a mixed group of individuals
If you are interested in finding out more about this group or applying to join then please contact: P.D.White@qmul.ac.uk