Abstract 294P
Background
The survival rate of breast cancer has increased rapidly during the last decades, due to better treatment options. However, according to patients, there are still topics that require additional research. Examples are: the higher suffering from side effects that occur with longer survival, integrating knowledge, clinical relevance, taking patients questions and perspectives into account.
Methods
1. Topic determination: After review of prior surveys and consulting relevant working groups within BVN the Expert group Scientific Research of the Dutch Breast Cancer Patient Association (all type of breast cancer patients) determined a long list of topics. 2. Categorize topics: The items of the long list were categorized into 6 themes. 3. Online survey (664 respondents): Patients prioritized the 6 themes + the most relevant topics within each theme. Leading to 16 topics. 4. Dialogue session: A live meeting 15 patient advocates and 15 breast cancer professionals discussed the 16 topics. 7 most urgent research topics were identified through consensus. (The Dialogue Model (Abma & Broerse, 2010)).
Results
Urgent research topics breast cancer patients in The Netherlands 1. Tailored treatments based on tumour and patient characteristics. 2. Long term effects of the various treatments (including fatigue, (nerve) pain, effects on organs). 3. Improve communication about the effects of treatments, side effects and long term consequences. 4. The best order, length and intensity of treatments in patients with metastatic breast cancer (aiming at living longer). 5. The best order, length and intensity of treatments for survival of breast cancer (targeted at cure). 6. Effectiveness of follow-up and self-monitoring in early detection of an initial occurrence or recurrence of breast cancer. 7. Psychological consequences of living with genetic predisposition, also for children and family members.
Conclusions
A thorough process led by patients resulted in seven urgent topics requiring more research from a breast cancer patient perspective. Defining a breast cancer patient driven research agenda was a long and thorough process that is the basis for a valuable instrument to better influence the breast cancer research landscape in The Netherlands.
Legal entity responsible for the study
Borstkankervereniging Nederland.
Funding
KWF Dutch Cancer Society.
Disclosure
The author has declared no conflicts of interest.