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

Orphanet Journal of Rare Diseases
L D de HossonA M E Walenkamp

Abstract

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. 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). 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. 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. Des...Continue Reading

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References

May 30, 2009·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Trude HauglandGerd Karin Natvig
Aug 3, 2010·European Journal of Cancer : Official Journal for European Organization for Research and Treatment of Cancer (EORTC) [and] European Association for Cancer Research (EACR)·Juan Ignacio ArrarasGalina Velikova
Sep 28, 2010·Annals of Oncology : Official Journal of the European Society for Medical Oncology·O HussonL V van de Poll-Franse
Feb 26, 2011·Endocrinology and Metabolism Clinics of North America·Ben LawrenceIrvin M Modlin
Sep 13, 2011·Clinical Oncology : a Journal of the Royal College of Radiologists·K E Oberg
Nov 5, 2011·Gut·John K RamageUNKNOWN UK and Ireland Neuroendocrine Tumour Society
Oct 13, 2012·Patient Education and Counseling·Robin K MatsuyamaMaureen C Wilson-Genderson
Mar 26, 2013·European Journal of Oncology Nursing : the Official Journal of European Oncology Nursing Society·Y FeinbergF C Wright
Feb 24, 2015·Critical Reviews in Oncology/hematology·Grietje BoumaAnna K L Reyners
Jun 9, 2015·European Journal of Oncology Nursing : the Official Journal of European Oncology Nursing Society·K PiilM Jarden
Jan 26, 2017·Journal of Cancer Education : the Official Journal of the American Association for Cancer Education·Ulrike KuenzelNatalie Herth
Feb 12, 2017·Supportive Care in Cancer : Official Journal of the Multinational Association of Supportive Care in Cancer·Grietje BoumaAnnemiek M E Walenkamp
May 17, 2017·Journal of Medical Internet Research·Susanne MattssonMaria Carlsson
Jun 7, 2017·JAMA : the Journal of the American Medical Association·Ethan BaschDeborah Schrag

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Citations

Apr 24, 2020·Current Opinion in Oncology·Geneviève I C G EctorNicole M A Blijlevens
Jun 17, 2020·Current Opinion in Oncology·Geneviève I C G EctorNicole M A Blijlevens

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Clinical Trials Mentioned

NCT02472678

Software Mentioned

SPSS
WINS

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