Web-based Tailored Information and Support for Patients With a Neuroendocrine Tumor
Condition: Neuroendocrine Tumor
MeSH terms: Neuroendocrine Tumors
Study type: Interventional

Summary: 
      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.
    

Detailed description: 
      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
    

Intervention name(s): Web-based tailored information and support system; Standard care
Intervention type(s): Other; Other
Intervention description(s): Access to the web-based tailored information and support system (with a username/password); The control group will receive standard care.
Allocation: Randomized
Intervention model: Single Group Assignment
Masking: None (Open Label)
Primary purpose: Treatment