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, A M E Walenkamp, 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, A M E Walenkamp

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.

Clinical trial registration: ClinicalTrials.gov ( NCT02472678 ). Registered 6th Jan 2015. Retrospectively registered 1st May 2017.

Keywords: Information; Internet; Neuroendocrine tumour; Quality of life; Web-based system.

Conflict of interest statement

Ethics approval and consent to participate

The study was approved by the medical ethical committee of the UMCG. Results were reviewed at regular intervals by an independent data monitoring and ethical committee.

Consent for publication

Not applicable.

Competing interests

All authors have completed the ICMJE uniform disclosure form at www.icmje.org/coi_disclosure.pdf and declare: no support from any organisation for the submitted work; no financial relationships with any organisations that might have an interest in the submitted work in the previous three years; no other relationships or activities that could appear to have influenced the submitted work.

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Figures

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Consort diagram

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