To detect whether a web-based tailored information and support system improves patients* perception and satisfaction of received information. We hypothesize that after having received web-based tailored information and support patients feel more…
ID
Source
Brief title
Condition
- Other condition
- Miscellaneous and site unspecified neoplasms benign
Synonym
Health condition
Psychosociale problemen
Research involving
Sponsors and support
Intervention
Outcome measures
Primary outcome
The primary endpoint is to detect an improvement in patients* perception and
satisfaction of received information after having received web-based tailored
information and support. We will use the EORTC QLQ-INFO25 questionnaire to
evaluate the primary endpoint.
Secondary outcome
- To test whether patients experience less distress after having received
web-based tailored information and support system.
- To test whether patients experience a higher quality of life after receiving
web-based tailored information and support system.
- To examine whether a web-based tailored information and support system
enhances empowerment within the meaning of being better informed, feeling more
confident in the relationship with their physician, improved acceptance of the
illness, feeling more confident about the treatment and increased optimism and
control over the future.4.
- To assess patients* opinion and satisfaction with the web-based system.
Background summary
Physical as well as psychosocial complaints are frequently present in patients
with a neuroendocrine tumor. Patients may experience various symptoms from the
presence of the tumor and the output of the hormones secreted by the tumor.
They also can have complaints due to the treatment and the accompanying side
effects.
Adequate information is seen as an essential aspect of supportive care.
Despite efforts to improve screening of patients* unmet information and care
needs, these needs of patients frequently remain unnoticed. The aim of the
current study is to test the effectiveness of a web-based tailored information
and support system targeting patients* information and care needs. Key features
of this system 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 internet is a highly suitable medium
to provide tailored information and support.
Study objective
To detect whether a web-based tailored information and support system improves
patients* perception and satisfaction of received information. We hypothesize
that after having received web-based tailored information and support patients
feel more informed and are more satisfied with the received information than
when receiving standard care.
Study design
The present study is a randomized prospective longitudinal experimental
multi-center pilot study. In this study, we want to examine the effect sizes on
the perception and satisfaction by the patient of received information (primary
objective) and secondary objectives after having used web-based tailored
information and support. Eligible are newly diagnosed NET-patients (N=40)
(diagnosed less than 3 months ago). Patients will be asked to fill out
questionnaires at baseline and after 12 weeks, on socio-demographic features
(only at baseline), internet use (only at baseline), health care use, patients'
perception and satisfaction of received information, distress, quality of life
and empowerment (only after 12 weeks). After completion of the questionnaires
at week 12, patients in the experimental group are asked to complete an
qualitative interview by phone to assess their opinion on the web-based system.
Intervention
During 12 subsequent weeks, a personalized website (with a username/password)
will become available to patients in the experimental group beside the usual
standard care. 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.
Study burden and risks
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. No such web-based system is
currently available for patients with a neuroendocrine tumor. If proven
effective, this system can be used for all neuroendocrine tumor patients in the
Netherlands.
Hanzeplein 1
Groningen 9713 GZ
NL
Hanzeplein 1
Groningen 9713 GZ
NL
Listed location countries
Age
Inclusion criteria
- Adult NET patients (aged >= 18 years of age) with any tumor site and disease stage.
- Ability to comprehend Dutch (both reading and writing).
- Informed consent provided.
Exclusion criteria
- Estimated life expectancy less than 3 months.
- Patients with a second primary tumor for which active follow-up or treatment.
Design
Recruitment
Followed up by the following (possibly more current) registration
No registrations found.
Other (possibly less up-to-date) registrations in this register
No registrations found.
In other registers
| Register | ID |
|---|---|
| ClinicalTrials.gov | NCT01849523 |
| CCMO | NL43834.042.13 |