Web-based tailored Information and support for patients with a Neuroendocrine tumor

Patients with a neuroendocrine tumor (NET) frequently suffer from physical as
well as psychosocial complaints. Patients may experience various symptoms from
tumor burden and secreted hormones by the tumor. They also can have complaints
due to their anti-cancer treatment and accompanying side effects.
Adequate information is an essential aspect of supportive care. Patients need
for information and care remain frequently unnoticed. The aim of the current
study is to test the effectiveness of a web-based tailored information and
support system to support patients* information and care needs. Key features of
this website are patient self-screening of physical and psychosocial problems,
tailored patient education on reported problems and self-referral to
professional health care. We expect that the website is a highly suitable
medium to provide tailored information and support

This study aims to investigate whether a web-based tailored information and
support system reduces distress, as determined by a decrease in value of the
distress thermometer, and/or improves patients* perception and satisfaction of
received information, as determined by an improved score at the EORTC QLQ-INFO
25 questionnaire, as compared to patients who receive standard care.
Secondary aims are improvement in quality of life as determined by the
cancer-specific EORTC QLQ-C30 and the NET-specific EORTC QLQ-GINET21,
empowerment at end of study (subscales of the Construct Empowering Outcomes
questionnaire) and to investigate patients* opinion about and use of the
web-based tailored information and support system (with a self-constructed
questionnaire; based on constructs of the Technology Acceptance Model (TAM)
questionnaire and two self-constructed questions).

The present study is a single center randomized, prospective, intervention
study on the efficacy of a tailored web-based information and support system in
NET patients. After randomization and stratification - based on the time from
diagnosis till inclusion- the control group receives standard care and the
experimental group receives the standard care complemented with use of the
web-based tailored information and support system for 12 weeks.
Patients will be asked to fill out questionnaires at baseline and after 12
weeks.
Patients in the intervention group are asked to fill out an extra questionnaire
about use of the web-based tailored information and support system.

Eligible patients will be randomized in two groups. The control group will
receive standard care. In addition to standard care, the experimental group
will be given access to the web-based tailored information and support system
(with a username/password). Key features of the website are self-screening,
tailored patient education and self-referral. Self-screening will be performed
by an online version of the Dutch Distress thermometer (DT) and Problem List
(PL). Patients will receive automated feedback on their DT score immediately
after test completion together with information regarding problems reported on
the PL, options for (self)-help and possibilities for referral to professional
care. Contact information will also be available to discuss questions, problems
and/or referral needs. Patients may also request a telephone call.

Completion of the questionnaires is considered as a minimal burden for patients
with a neuroendocrine tumor. With this study we hope to get insight into the
effectiveness of a web-based system providing tailored information and support
towards information provision, patients* problems/complaints, care needs and
self-referral to professional health care. There is a lot of information
available on the internet, however personalized information systems are
lacking. If proven effective, this system can be used for all neuroendocrine
tumor patients in the Netherlands.