Abstract P2-10-02: Treatment adverse effect registration. A PC based electronic patient - hospital communication portal that allows registration of adverse effects of chemotherapy and returns advice and recommandations for action
Authors: Due Jakob , Christensen Helle Gert , Vestlev Peter Michael 
Published: May 2015

Abstract
Background
App. 200 new breast cancer patients are treated each year with chemotherapy at the outpatient ward at Roskilde Hospital in the Region of Zealand. The adverse effect of the treatment determines whether the patients are able to receive the planned dose. Studies indicate that the easier access patients have to accurate and relevant information about their disease, the better they manage. Other studies indicate that the better the patients handle the adverse reactions to chemotherapy, the more they comply to treatment as planned.
The patients are the best to report the experience of their side effects, so it was an obvious choice to get the patients to self-report adverse effects.
Aim
The primary aim of the study was to create an online portal that could provide patients with better access to relevant guidance and accurate information about self assessed side effects
A secondary aim was
- to provide the patients with relevant information at the right time in order to increase their empowerment to act and comply with the treatment.
- the development of a database based on all the registrations done by the patients for further research and developmental projects.
Methods
We created, as part of a national project, an online portal, where the patients can make real time records of their side effects. The adverse effects were graded according to CTCAE standards. According to the grading the patients get practical online advice on how to act. The portal enabled the patients to get a visual overview of the time-line of their own adverse effects, and a possibility to compare the timelines of adverse effects with other similar patients. The patients were interviewed by telephone as to their experience with the use of the portal
Results
55 pt were included, 35 pt gave feed-back to the portal. Median age 61 år. Average IT kompetence level was 3,9 (out of 5): "experienced user and adequate in surfing on the internet"
Results
28 out of 35 patienter experienced benefit from the advices and instructions given on the portal. It was after the first series of treatment and in connection with newly experienced side effects that the advices were experienced as most valuable It was appreciated that the portal could give "round the hour" advices It was appreciated that the advices were practical instructed the patients as to what they could do themselves.
There were (amoung patients, family and health professionels) a need for a more direct access to the advices and instructions without login. For a small minority of the patients the portal was not regarded as positive. 15 off the 55 patients did not succeed in using the portal either because of their general condition during their treatment or because they found it too complicated.
Conclusion
There is a patient demand for an around the clock realtime support to the experienced adverse events.
- It is of great importance that the portal is easy to access and intuitive in use.
- It is essential to find the right balance between secure login and easy access for the patients.
- Mobile access to the portal would bring the help closer to the patients and generate more data for the database.
Citation Format: Jakob Due, Helle Gert Christensen, Peter Michael Vestlev. Treatment adverse effect registration. A PC based electronic patient - hospital communication portal that allows registration of adverse effects of chemotherapy and returns advice and recommandations for action [abstract]. In: Proceedings of the Thirty-Seventh Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2014 Dec 9-13; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2015;75(9 Suppl):Abstract nr P2-10-02.