Maarsbergen, Netherlands
Maarsbergen, Netherlands

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Schook R.M.,VU University Amsterdam | Linssen C.,Lung Cancer Information Center | Festen J.,Lung Cancer Information Center | Schramel F.M.N.H.,St Antonius Hospital Nieuwegein | And 3 more authors.
Journal of Medical Internet Research | Year: 2013

Background: In 2003 the Dutch Lung Cancer Information Centre (Longkanker Informatie Centrum) launched a website containing information on lung cancer accessible to anyone. Objective: Our study aim was to inventorize the information needs of the visitors of this website by analyzing the questions they asked the lung cancer specialists in the websites interactive section "Ask the Physician". Methods: The first 2000 questions posted up until May 2006 have been classified by visitors' wish, type of required information, identity, gender, and phase during treatment course. Results: Our results show that 1893 (1158/1893, 61%) of the questions were asked by a loved one/caregiver and (239/1893 13%) by patients. 1 out of 3 questions was asked by a daughter/grand-daughter. Most questions concerned specific information on lung cancer and lung cancer course (817/1893, 43%). The most inquired specific information topics were therapy side effects, diagnostics, general information on lung cancer, and regular therapy. Furthermore, questioners wanted to verify their own doctor's information (122/1893, 6%), a diagnosis (267/1893, 14%), and a prognosis (204/1893, 11%). Conclusions: Lung cancer patients and their caregivers asked the most questions in the interactive website section. The most frequently requested information was more detailed information. These include specific information on lung cancer (regular therapy, diagnostics, and disease symptoms), verification of what the doctor has said, diagnosis, and prognosis. Most of the requested information could have been obtained from treating specialists, indicating that current information supply to lung cancer patients and their caregivers may not be matching their needs sufficiently. The further implementation of an online dialogue with lung cancer specialists might be a solution.

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