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Published on: April 16, 2019
The feasibility of a brain tumour website
K Piil1, J Jakobsen2, M Juhler3
1Rigshospitalet, University of Copenhagen, Dept. of Neurosurgery, Blegdamsvej 9, 2100 Copenhagen, Denmark; The University Hospitals Center for Health Research (UCSF) and Center for Integrated Rehabilitation of Cancer Patients (CIRE), Blegdamsvej 9, 2100 Copenhagen, Denmark.
Purpose:
Patients with a high-grade glioma (HGG) and their caregivers have imminent and changing informational and supportive care needs. The purpose of this study was to investigate the feasibility and safety of a Danish brain tumour website (BTW) in patients with HGG and their caregivers. We hypothesized that the BTW would be feasible, safe, helpful and convenient for individuals to obtain support and information.
Methods:
This is an exploratory, prospective six-month feasibility study. Two separate samples were collected: 1) a nationwide sample consisting of BTW visitors over a six-month period and 2) a sample of patients with HGG (n = 9) and their caregivers (n = 8) interviewed three months after being introduced to the BTW.
Results:
The BTW was accessed from 131 different Danish towns and cities, and from ten different countries. The website had 637 unique users. The interviews identified one overarching theme 'challenges and barriers'. Being newly diagnosed, patients described a chaotic and overwhelming life situation and had difficulties in identifying with their new and changed role. When using the BTW, some patients and caregivers experienced technological challenges, while the former also experienced cognitive difficulties. Caregivers greatly appreciated that the BTW was available and that easily accessible specialists could answer their questions.
Conclusion:
The BTW attracted nationwide interest and activity, but the burden of being newly diagnosed with HGG combined with a low level of internet skills and cognitive deficits were barriers to participation.
Trial Registration Number:
ISRCTN22038059.
