The Role of Web-Based Health Information in Help-Seeking Behavior Prior to a Diagnosis of Lung Cancer: A Mixed-Methods Study

Abstract

BackgroundDelays to diagnosis in lung cancer can lead to reduced chance of survival, and patients often wait for several months before presenting symptoms. The time between first symptom recognition until diagnosis has been theorized into three intervals: symptom appraisal, help-seeking, and diagnostic interval (here: “pathway to diagnosis”). Interventions are needed to reduce delays to diagnosis in lung cancer. The Web has become an important lay health information source and could potentially play a role in this pathway to diagnosis.ObjectiveOur overall aim was to gain a preliminary insight into whether Web-based information plays a role in the pathway to diagnosis in lung cancer in order to assess whether it may be possible to leverage this information source to reduce delays to diagnosis.MethodsPatients diagnosed with lung cancer in the 6 months before study entry completed a survey about whether (and how, if yes) they had used the Web to appraise their condition prior to diagnosis. Based on survey responses, we purposively sampled patients and their next-of-kin for semistructured interviews (24 interviews; 33 participants). Interview data were analyzed qualitatively using Framework Analysis in the context of the pathway to diagnosis model.ResultsA total of 113 patients completed the survey (age: mean 67.0, SD 8.8 years). In all, 20.4% (23/113) reported they or next-of-kin had researched their condition online before the diagnosis. The majority of searches (20/23, 87.0%) were conducted by or with the help of next-of-kin. Interview results suggest that patients and next-of-kin perceived an impact of the information found online on all three intervals in the time to diagnosis. In the appraisal interval, participants used online information to evaluate symptoms and possible causes. In the help-seeking interval, the Web was used to inform the decision of whether to present to health services. In the diagnostic interval, it was used to evaluate health care professionals’ advice, to support requests for further investigation of symptoms, and to understand medical jargon. Within this interval, we identified two distinct subintervals (before/after relevant diagnostic tests were initiated), in which the Web reportedly played different roles.ConclusionsBecause only 20.4% of the sample reported prediagnosis Web searches, it seems the role of the Web before diagnosis of lung cancer is at present still limited, but this proportion is likely to increase in the future, when barriers such as unfamiliarity with technology and unwillingness to be informed about one’s own health are likely to decrease. Participants’ perceptions suggest that the Web can have an impact on all three intervals in the pathway to diagnosis. Thus, the Web may hold the potential to reduce delays in the diagnostic process, and this should be explored in future research and interventions. Our results also suggest a division of the diagnostic interval into two subintervals may be useful.

Developing and testing a web‐based intervention to encourage early help‐seeking in people with symptoms associated with lung cancer

“…We aimed to recruit people with potential lung cancer symptoms and proxies searching on their behalf, as a previous study indicated that others often research symptoms on behalf of patients with lung cancer (Mueller, Jay, Harper, & Todd, ).…”

“…Individuals often research their symptoms prior to presentation to health services, and this can impact on decisions to seek help (Mueller et al ., ). Moreover, recent research shows some people with lung cancer report researching their symptoms online prior to being diagnosed, and this seems to affect decisions of whether to present to health services and whether to request further diagnostic tests (Mueller, Jay, Harper, & Todd, ). Thus, targeting online health information could influence lung cancer symptom awareness and delays to diagnosis, ultimately improving chances of survival.…”

“…To gain initial insights into the needs of people with lung cancer who use the web to appraise symptoms prior to diagnosis, we conducted interviews with patients with lung cancer and their family/friends (Mueller, Jay, Harper, & Todd, ). We found that the web is reportedly used in all intervals leading up to diagnosis in the Pathways to Treatment model (Scott et al ., ).…”

“…According to the person‐based approach (Yardley et al ., ), it is useful to produce a set of guiding principles which can be consulted throughout planning and development of an intervention. Our guiding principles were informed by our interview study on pre‐diagnosis web use among patients with lung cancer (Mueller, Jay, Harper, & Todd, ) as well as previous research on help‐seeking in lung cancer (Birt et al ., ; Corner et al ., , ; McLachlan et al ., ; Tod & Joanne, ; Tod et al ., ) (Box 2).…”

Accuracy of Ebola Information in a Knowledge Exchange Social Website (KESW)

“…In the presence of conflicting information on a health topic, individuals actively and preferentially access information that reinforces their beliefs while avoiding information that challenges their beliefs [12]. Similarly, research has shown that internet users' search strategies are systematically biased towards examining only the top search results from search engines and following links related to more serious health conditions when trying to self diagnose [13]. Despite these biases, Internet users tend to believe the information they find online is accurate and trustworthy, regardless of the actual accuracy of the information [14].…”