Web-based personalised information and support for patients with a neuroendocrine tumour: randomised controlled trial

L. D. de Hosson†,
G. Bouma†,
J. Stelwagen,
H. van Essen,
G. H. de Bock,
D. J. A. de Groot,
E. G. E. de Vries and
A. M. E. WalenkampEmail author

†Contributed equally

Orphanet Journal of Rare Diseases201914:60

https://doi.org/10.1186/s13023-019-1035-3

Received: 27 August 2018
Accepted: 17 February 2019
Published: 28 February 2019

Abstract

Background

Patients with a neuroendocrine tumour (NET) frequently have physical and psychosocial complaints. Aim of this study is to determine whether a web-based, personalised information and support system (WINS) reduces distress and/or improves patients’ perception of and satisfaction with information received.

Methods

Patients with NET, stratified for those newly diagnosed (< 6 months, n = 28) and with a longer history of disease (n = 74), were randomised between standard care (n = 49) and intervention, consisting of access to WINS (n = 53). Primary outcome was change of distress and satisfaction with perceived information measured with the distress thermometer and problem list and the QoL questionnaire (QLQ)-INFO25. The intervention group also completed a questionnaire based on the technical acceptance model (TAM).

Results

We observed no difference in distress slope and slope of median global score on perceived information and satisfaction between the intervention and control group. Interestingly, 55% of patients wished to receive more information at baseline.

Conclusions

In a population of NET patients, access to WINS did not improve indicators for distress, perception of information and satisfaction with information received, more than standard care only. Despite the need for more information, the WINS does not have added value to the information and care provided by health care professionals.