Web-Based Tailored Information and Support for Patients with a Neuroendocrine Tumor

#1885

Introduction: Patients with a neuroendocrine tumour (NET) frequently experience physical and psychosocial complaints. Novel strategies to provide information to optimize supportive care in these patients are of interest.

Aim(s): The aim of this study was to examine whether the use of a web-based system consisting of self-screening of problems and care needs reduces distress and/or improves patients’ perception and satisfaction of received information, quality of life (QoL) and empowerment.

Materials and methods: NET patients were stratified between newly diagnosed patients (< 6 months, n=28) and patients with a longer duration of the disease (n=74) and randomised between standard care (n=49) or intervention with additional access to the WBS (n=53) during 12 weeks. Patients completed questionnaires about distress, QoL and empowerment. The intervention group also completed a questionnaire regarding their use of and opinion on the web-based system.

Conference: 14th Annual ENETSConcerence (2017)

Presenting Author: de Hosson L

Authors: De Hosson L, Bouma G, Van Essen H, De Bock G, De Groot D,

Keywords: neuroendocrine tumor, information, quality,

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Web-Based Tailored Information and Support for Patients with a Neuroendocrine Tumor

#881

Introduction: Patients with neuroendocrine tumors (NET) frequently experience physical and psychosocial complaints. Optimal patient information can form an essential aspect of supportive care. To give NET patients continuous access to information, we developed a web-based tailored information and support system.

Aim(s): To detect whether this web-based system improves patients' perception and satisfaction of received information.

Materials and methods: Newly diagnosed NET patients at the UMCG and MST are invited to participate in this randomized pilot study. During the 12-week study period, the control group (N=10) receives usual care while the experimental group (N=10) also gets access to the web-based system, which is adjusted for NET patients. Key features are self-screening of physical/psychosocial problems, patient education about reported problems and self-referral to professional health care. The EORTC QLQ-INFO25 questionnaire is used to examine the primary objective.

Conference: 11th Annual ENETSConcerence (2014)

Presenting Author:

Authors: Bouma G, De Vries E, Wymenga M, Walenkamp A,

Keywords: neuroendocrine, tumor, information, support, distress, quality, empowerment,

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