Neuroendocrine Tumor Clinical Trial
Official title:
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. The investigators expect that the
website is a highly suitable medium to provide tailored information and support.
Rationale: 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. The invetigators expect that the
website is a highly suitable medium to provide tailored information and support.
Objective: This study has a combined objective 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).
Study design: 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.
Study population: Diagnosed NET patients who are under treatment at the Department of
Medical Oncology in the University Medical Center Groningen will be invited to participate
in the study. The investigators will stratify for newly diagnosed patients (diagnosed within
six months before inclusion) and patients diagnosed more than 6 months before inclusion
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