Why do patients and caregivers seek answers from the Internet and online lung specialists? A qualitative study.

BACKGROUND: Since its launch in 2003, the Dutch Lung Cancer Information Center's (DLIC) website has become increasingly popular. The most popular page of the website is the section "Ask the Physician", where visitors can ask an online lung specialist questions anonymously and receive an answer quickly. Most questions were not only asked by lung cancer patients but also by their informal caregivers. Most questions concerned specific information about lung cancer. OBJECTIVE: Our goal was to explore the reasons why lung cancer patients and caregivers search the Internet for information and ask online lung specialists questions on the DLIC's interactive page, "Ask the Physician", rather than consulting with their own specialist. METHODS: This research consisted of a qualitative study with semistructured telephone interviews about medical information-seeking behavior (eg, information needs, reasons for querying online specialists). The sample comprised 5 lung cancer patients and 20 caregivers who posed a question on the interactive page of the DLIC website. RESULTS: Respondents used the Internet and the DLIC website to look for lung cancer-related information (general/specific to their personal situation) and to cope with cancer. They tried to achieve a better understanding of the information given by their own specialist and wanted to be prepared for the treatment trajectory and disease course. This mode of information supply helped them cope and gave them emotional support. The interactive webpage was also used as a second opinion. The absence of face-to-face contact made respondents feel freer to ask for any kind of information. By being able to pose a question instantly and receiving a relatively quick reply from the online specialist to urgent questions, respondents felt an easing of their anxiety as they did not have to wait until the next consultation with their own specialist. CONCLUSIONS: The DLIC website with its interactive page is a valuable complementary mode of information supply and supportive care for lung cancer patients and caregivers.

Website visitors asking questions online to lung cancer specialists: what do they want to know?

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.

Accuracy of symptoms, signs, and C-reactive protein for early chronic obstructive pulmonary disease.

BACKGROUND: Guidelines recommend detection of early chronic obstructive pulmonary disease (COPD), but evidence on the diagnostic work-up for COPD only concerns advanced and established COPD. AIM: To quantify the accuracy of symptoms and signs for early COPD, and the added value of C-reactive protein (CRP), in primary care patients presenting with cough. DESIGN AND SETTING: Cross-sectional diagnostic study of 73 primary care practices in the Netherlands. METHOD: Four hundred primary care patients (182 males, mean age 63 years) older than 50 years, presenting with persistent cough (>14 days) without established COPD participated, of whom 382 completed the study. They underwent a systematic diagnostic work-up of symptoms, signs, conventional laboratory CRP level, and hospital lung functions tests, including body plethysmography, and an expert panel decided whether COPD was present (reference test). The independent value of all items was estimated by multivariable logistic regression analysis. RESULTS: According to the expert panel, 118 patients had COPD (30%). Symptoms and signs with independent diagnostic value were age, sex, current smoking, smoking more than 20 pack-years, cardiovascular comorbidity, wheezing complaints, diminished breath sounds, and wheezing on auscultation. Combining these items resulted in an area under the receiver operating characteristic curve (ROC area) of 0.79 (95% confidence interval = 0.74 to 0.83) after internal validation. The proportion of subjects with elevated CRP was higher in those with early COPD, but CRP added no relevant diagnostic information above symptoms and signs. CONCLUSION: In subjects presenting with persistent cough, the CRP level has no added value for detection of early COPD.

Undetected chronic obstructive pulmonary disease and asthma in people over 50 years with persistent cough.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) and asthma are underdiagnosed in primary care. AIM: To determine how often COPD or asthma are present in middle-aged and older patients who consult their GP for persistent cough. DESIGN OF STUDY: A cross-sectional study in 353 patients older than 50 years, visiting their GP for persistent cough and not known to have COPD or asthma. SETTING: General practice in the Netherlands. METHOD: All participants underwent extensive diagnostic work-up, including symptoms, signs, spirometry, and body plethysmography. All results were studied by an expert panel to diagnose or exclude COPD and/or asthma. The reproducibility of the panel diagnosis was assessed by calculation of Cohen's kappa statistic in a sample of 41 participants. RESULTS: Of the 353 participants, 102 (29%, 95% confidence interval [CI] = 24 to 34%) were diagnosed with COPD. In 14 of these 102 participants, both COPD and asthma were diagnosed (4%, 95% CI = 2 to 7%). Asthma (without COPD) was diagnosed in 23 (7%, 95% CI = 4 to 10%) participants. Mean duration of cough was 93 days (median 40 days). The reproducibility of the expert panel was good (Cohen's kappa = 0.90). CONCLUSION: In patients aged over 50 years who consult their GP for persistent cough, undetected COPD or asthma is frequently present.

A web site on lung cancer: who are the users and what are they looking for?

PURPOSE: The Dutch Lung Cancer Information Centre launched the Web site www.longkanker.info in November 2003. The purpose of this article is to describe the launching of the Web site, its development, the type of visitors to the Web site, what they were looking for, and whether they found what they requested. METHODS: Supervised by a panel (pulmonologists, patients, communication specialists), a large amount of material about lung cancer has been collected and edited into accessible language by health care providers, and the Web site has been divided into special categories following the different stages that lung cancer patients, relatives, and health care providers go through during the illness. The Web site is updated regularly. Search engines have been used to check the position of the Web site as a "hit." Pulmonologists have been informed about the founding of the Web site, and all lung cancer outpatient clinics in The Netherlands have received posters, folders, and cards to inform their patients. Visitor numbers, page views, and visitor numbers per page view have been registered continuously. Visitor satisfaction polls were placed in the second half of 2004 and the second half of 2005. RESULTS: The Web site appeared as first hit when using search engines immediately after launching it. Half of the visitors came to the Web site via search engines or links found at other sites. The number of visitors started at 4600 in the first month, doubled in the next months, and reached 18,000 per month 2 years after its launch. The number of visited pages increased to 87,000 per month, with an average number of five pages per visitor. Thirty percent of the visitors return within the same month. The most popular pages are interactive pages with the overview of all questions to "ask the doctor" at the top with forum messages, survival figures of all form of lung cancer, and information about the disease. The first satisfaction poll obtained 650 respondents and the second 382. The visitors to the Web site are caregivers (57%), patients (8%), and others (students, people fearing lung cancer). Of the visitors, 895 found what they were looking for, and the satisfaction is the highest among nurses and caregivers (91% and 95%, respectively) and the lowest among physicians and patients (85% and 83%). CONCLUSIONS: Given the number of visitors to the lung cancer Web site, it can be concluded that there is a great need for additional information among patients and caregivers. The launched Web site www.longkanker.info has reached its goal of providing a dependable source of information about lung cancer and satisfying its visitors.