Evidence map›Paper›PMID 30819238›Full record

Trial reportOrphanet journal of rare diseases2019

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

Registry-linked trialAbstract readRandomized Controlled Trial
PubMed Full text at PMC Publisher
In one paragraph

Trial report in Orphanet journal of rare diseases, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT02472678 (Web-based Tailored Information and Support for Patients With a Neuroendocrine Tumor), which is not on this map. Cited by 8 papers, 3 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
8citing papers in PubMed, 3 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT02472678 nacompletednot on this map

Web-based Tailored Information and Support for Patients With a Neuroendocrine Tumor

TypeinterventionalSponsorUniversity Medical Center GroningenRan2015 to 2017Enrolled91ConditionsNeuroendocrine TumorArmsWeb-based tailored information and support system, Standard care
3 · Its place in the literature

Who cites it

8 citing papers in PubMed, 3 syntheses or guidelines pooled it.

  1. Pooled it
  2. Pooled it
  3. Pooled it
  4. Review
  5. Article
  6. Article
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors.

L D de HossonDepartment of Medical Oncology, University of Groningen, University Medical Centre Groningen, DA11, PO Box 30.001, 9700, RB, Groningen, The Netherlands.
G BoumaDepartment of Medical Oncology, University of Groningen, University Medical Centre Groningen, DA11, PO Box 30.001, 9700, RB, Groningen, The Netherlands.
J StelwagenDepartment of Medical Oncology, University of Groningen, University Medical Centre Groningen, DA11, PO Box 30.001, 9700, RB, Groningen, The Netherlands.
H van EssenDepartment of Medical Oncology, University of Groningen, University Medical Centre Groningen, DA11, PO Box 30.001, 9700, RB, Groningen, The Netherlands.
G H de BockDepartment of Epidemiology, University of Groningen, University Medical Centre Groningen, Groningen, The Netherlands.
D J A de GrootDepartment of Medical Oncology, University of Groningen, University Medical Centre Groningen, DA11, PO Box 30.001, 9700, RB, Groningen, The Netherlands.
E G E de VriesDepartment of Medical Oncology, University of Groningen, University Medical Centre Groningen, DA11, PO Box 30.001, 9700, RB, Groningen, The Netherlands.
A M E WalenkampDepartment of Medical Oncology, University of Groningen, University Medical Centre Groningen, DA11, PO Box 30.001, 9700, RB, Groningen, The Netherlands. a.walenkamp@umcg.nl.

Funding

Ipsen Fund (GB) This project was supported by an educational grant of Ipsen made available to the UMCG
6 · The paper itself

Abstract

backgroundPatients 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.

methodsPatients 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).

resultsWe 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.

conclusionsIn 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 registrationClinicalTrials.gov ( NCT02472678 ). Registered 6th Jan 2015. Retrospectively registered 1st May 2017.

Indexed as

InternetAgedFemaleHumansInformation DisseminationMaleMiddle AgedNeuroendocrine TumorsPilot ProjectsPrecision MedicinePsychosocial Support SystemsSurveys and QuestionnairesTreatment OutcomeInformationInternetNeuroendocrine tumourQuality of lifeWeb-based system

Identifiers

PMID30819238
PMCPMC6394034

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Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.