Website Visitors Asking Questions Online to Lung Cancer Specialists: What Do They Want To Know?

Abstract

BackgroundIn 2003 the Dutch Lung Cancer Information Centre (Longkanker Informatie Centrum) launched a website containing information on lung cancer accessible to anyone.ObjectiveOur 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”.MethodsThe 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.ResultsOur 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%).ConclusionsLung 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.

An investigation of the questions posted on medical consultation websites

“…Identity disclosure in online health consultation is an important indicator, because it directly relates to who will be making the medical decisions along with the physicians in situations where consent from the patients or caregivers is often needed. The findings suggest that questions of geriatrics and paediatrics were mostly asked by caregivers, family members or loved ones, confirming previous studies that caregivers are also information seekers …”

“…This supports previous findings that most patients seek information in online medical consultation during therapy, after therapy and after diagnoses. 16 Therefore, online medical consultation may have value to support both proactive health promotion and reactive approaches for diagnosis and treatment.…”

“…The findings suggest that questions of geriatrics and paediatrics were mostly asked by caregivers, family members or loved ones, confirming previous studies that caregivers are also information seekers. 16,17…”

Chronic Obstructive Pulmonary Disease: Clinical Implications for Patients With Lung Cancer

“…Online resources offer educational and emotional support for homebound and rural patients. Some of these resources allow web-based interactivity between lung cancer specialists and patients and their family members (Schook et al, 2013). The Lung Cancer Alliance created the Phone Buddy Program, which connects survivors and patients with lung cancer for information and emotional support purposes.…”

Why Do Patients and Caregivers Seek Answers From the Internet and Online Lung Specialists? A Qualitative Study

“…Surprisingly, the most popular page of the website is the “Ask the Physician” page. Our study group has previously investigated who was visiting the interactive webpage and what the information visitors were looking for [ 6 , 8 ]. Seventy-four percent of the questions (n=1893) were not only asked by lung cancer patients (13%) but also in large numbers by their informal caregivers (61%, eg, family, friends, and loved ones).…”