A survey of health information seeking by cancer patients indicates some problems over medical explanations and terminology

Abstract

Background: Cancer patients may experience stress because of insufficient information about their illness, health condition, or treatment, but some may fear what the information reveals.Objective: This study aims to determine health information-seeking behaviour, the attitudes of cancer patients, the barriers they face in seeking health information and their sociodemographic and disease characteristics. Methods: A survey was conducted with 84 cancer patients in Turkey. Descriptive statistics were performed to determine the characteristics of information seeking and barriers found. Results: Cancer patients are likely to seek health information, often confident about finding resources easily. The main problems are as follows: (1) insufficient information from health care providers; (2) understanding medical terminology; and (3) lack of help from health care providers to explain information retrieved. Discussion: The information-seeking behaviour of cancer patients in this sample in Turkey resembles studies elsewhere, with (overall) evidence of monitoring behaviour (wanting to find out more about the disease, treatment and effects on lived experience). Conclusions:The cancer patients in this survey were generally willing and confident in their information seeking to find out more about the disease, treatment and effects on lifestyle. The main barriers were medical terminology, insufficient explanations and information from healthcare providers.

The quality of informational social support in online health communities: A content analysis of cancer-related discussions

“… 31 However, since most of the active and vocal users who participate in socializing forums have the highest sense of belonging to the online community, 70 there is a risk of a strong echo chamber effect, where the same (low-quality) information is reproduced within a group of like-minded people. 71 Thus, there is a paradoxical situation in OHCs where social support serves as a driver of belongingness and information sharing, 7 , 24 yet socializing forums, where users very often exchange social support, are also places where problematic QISS is exchanged.…”

Linguistic analysis of plain language summaries and corresponding scientific summaries of Cochrane systematic reviews about oncology interventions

“…9 Moreover, the readability of cancer information on the Internet is too demanding and most of the information does not meet the criteria for readability and understandability by lay population. [10][11][12][13][14] Despite the evidence that the readability levels regarding oncology information for patients are unacceptably high, the readability of newly created materials from professional societies has not improved to an adequate level and there is still room for advancement in all oncology fields, across information providers. 12,13 One of the organizations that aims to improve the quality of health information for the public is Cochrane, whose Database of Systematic Reviews has emerged as one of the most trustworthy sources for the effectiveness of health interventions, due to its high-quality systematic reviews.…”

“…However, studies have shown that nearly half of the patients with cancer have difficulty understanding information about the treatment for their particular type of cancer 9 . Moreover, the readability of cancer information on the Internet is too demanding and most of the information does not meet the criteria for readability and understandability by lay population 10–14 . Despite the evidence that the readability levels regarding oncology information for patients are unacceptably high, the readability of newly created materials from professional societies has not improved to an adequate level and there is still room for advancement in all oncology fields, across information providers 12,13 …”

Health literacy and consumer health information

“…Drawing parallels with the studies of Akbolat et al (2023) and Delemere and Maguire (2023), Jiang and Liu (2023) analysed existing datasets focused on cancer‐related health information seeking behaviour. The authors note that the questionnaire data, collected in China in 2012 and 2017, indicate that cancer information seeking is associated with a greater willingness to undertake screening and attend check‐ups.…”

“…Akbolat et al (2023) undertook a questionnaire survey of 84 patients with cancer in Turkey to examine the barriers they face in seeking health information. Eighty‐six percent of respondents were married, 57% were male and the mean age of the study population was 57 years.…”