Evaluating feasibility and preliminary effects of a patient portal on empowerment of breast and lung cancer patients and survivors

There is an increasing population living with physical and psychosocial
consequences of breast and lung cancer during and after cancer treatment.
Patients are often left guessing what to expect when treatment ends. That's why
the Institute of Medicine (IOM) recommended the incorporation of survivorship
care plans (SCP*s) into oncology practice to address the specific needs of
these people. One important aspect of survivorship care is the screening for
psychosocial needs. This could be done by self-reported outcome measures
(PRO*s) such as health-related quality of life (HRQL) instruments. Despites the
many reported benefits of incorporating PRO's into daily practice, routine use
of PRO's to date is not part of usual care in many oncology hospitals, which
leaves them missing out a great opportunity. In addition it is also clear that
physical activity levels among cancer survivors in general are low. Therefore
most cancer survivors lack the many beneficial effects of physical activity.
Integrating physical activity promotion programs in survivorship care plans
will facilitate the uptake in usual care. Currently a relatively basic
information website (*voorlichting op maat*; VOM) is offered to breast and lung
cancer patients in our hospital which contains digital leaflets with
information about disease and treatment. This site however has no interactive
features, such as online PRO*s, physical activity assessment and feedback or an
elaborate survivorship care plan. We propose that a combination of a SCP with
integrated PRO's and physical activity support will be a feasible and effective
way to empower cancer survivors to take charge of their health and health
behaviours.

Our objective is to test the feasibility and preliminary effects of a web-based
patient portal containing a survivorship care plan, online questionnaires for
symptoms and HRQL with personalized feedback and a physical activity support
programme that is tailored to the status and preferences of the patient. All
with the overarching goal to enhance knowledge and motivation of patients to be
actively involved in their health care (patient empowerment).

A sequential cohort design with a control group and an intervention group
following each other in time.

Patients in the control groups will receive care as usual which includes access
to a basic information website (VOM) without any interactive features. Patients
in the intervention groups will be given access to the enriched and interactive
patient portal.

The patient portal will help patients to be better informed about their
disease, treatment and follow up. Furthermore it is expected that they will be
empowered to actively influence their health status in a positive way by
engaging in regular physical activity and by monitoring their symptoms and
quality of life. The risks of participation in the study are minimal and might
include anxious feelings toward information about disease and treatment. All
content of the portal however will be provided by health care professionals
working at the Antoni van Leeuwenhoek and will be subsequently edited by both
the health education centre (*voorlichtingscentrum*) and the public relations
department of the Antoni van Leeuwenhoek, thus greatly minimising this risk.
The content will also be extensively pilot tested throughout 2013 in small
groups of selected patients to thoroughly evaluate the patients* perceptions of
all the content.