Patients' experiences of a suppoRted self-manAGeMent pAThway In breast Cancer (PRAGMATIC)
Chief Investigator: Professor Valerie Jenkins
Principal Investigator (Clinical): Dr May Teoh
Researcher/Study Coordinator: Lucy Matthews
Researcher:: Dr Helena Harder
Data Manager: Shirley May
Funder: Surrey and Sussex Cancer Alliance
PARTICIPANT NEWSLETTER ISSUE 1 DECEMBER 2020
Welcome to the first PRAGMATIC participant newsletter. We have reached our recruitment figure of 108 people. The study has managed to continue despite COVID-19 with the help of the fantastic hospital staff and our participants' good will. See the newsletter
As more people are surviving cancer, the NHS is prioritising support pathways to help survivors live well beyond their diagnosis. Traditional breast cancer follow-up involves regular clinic visits that may be impractical for women who have returned to work or caring duties.
The National Cancer Plan acknowledges personalised care and support, and recommends the implementation of supported self-management (SSM) pathways for patients who have completed secondary care treatment for their breast cancer.
SSM pathways allow patients to manage their health and report signs and symptoms as and when necessary, meaning less time spent attending follow-up clinic appointments. In Surrey and Sussex, some hospitals have implemented the SSM pathway for breast cancer for over two years and now want to assess the benefits and challenges for patients.
The Surrey and Sussex Cancer Alliance (SSCA) have funded the PRAGMATIC Study to evaluate the pathway in the following hospitals:-
- Ashford and St Peter's Hospital
- Royal Sussex County Hospital
- Worthing Hospital
- Frimley Park Hospital
Women/men who have completed hospital treatment for their breast cancer and are about to join the SSM pathway are eligible. An inbuilt health economic evaluation will assess the impact on NHS costs.
One hundred participants about to join the SSM pathway will be invited to complete the follwing validated questionnaires to measure QoL, self-efficacy and general health:-
- Functional Assessment of Cancer Therapy - Breast
- Patient Roles and Responsibilities Scale
- General Self-Efficacy Scale
- General Health Questionnaire
- EuroQol 5D
These questionnaires are completed at baseline, 3, 6, 9 and 12 months. A service use self-report form will capture NHS costs.
A sub-set of 30/100 participants will be invited for interviews at the same time points to explore their views and experiences in more depth.
This study will provide valuable insights about SSM breast pathways from the patients' point of view, and any effect on their emotional and psychosocial wellbeing.
PRAGMATIC Conference Poster
February 2020 British Psychosocial Oncology Society (BPOS) Spring Conference, Edinburgh, Patients' experiences of a supported self-managment pathway in breast cancer (PRAGMATIC)