Pediatric Cancer and the Internet: Exploring the Gap in Doctor-Parents Communication

Abstract

The aim of this study is to examine the use of the Internet to obtain information by parents of children with cancer and how pediatric oncologists understand this new scenario and the shifting relationship between patients and doctors. With this goal in mind, we conducted two surveys: one was answered by 110 parents of pediatric cancer patients and another one was answered by 74 oncologists, members of the Spanish Society of Pediatric Hematology and Oncology (SEHOP). Less than half of the surveyed parents (44.5%) looked for information on the Internet, while 55.5% preferred not to do it. In addition, 87.3% of the parents explain that their doctors did not recommend any Internet resources. Among the oncologists' sample, 68.9% of the respondents did not recommend seeking information on the Internet, but they would consider it desirable for the patients to be guided in the search (82.4%). These results show some degree of dissent between the parents' needs and the oncologists' attitudes. Higher interaction between these two agents would be recommended in order to achieve better information and cooperation in the therapeutic protocols.

Determining parents' patterns of behaviour when searching for online information on their child's health

“…According to Thompson, other difficulties include the doctor's lack of interest and belief in the irrelevance of information parents find and the lack of credibility of online sources . A 2015 study found that, of the 110 parents of children with cancer who searched for online medical information, only 46.9% shared it with their child's oncologist, but 85.7% would have liked to have done so …”

Health‐related Google searches performed by parents of pediatric oncology patients

“…This is higher than Google's self‐reported baseline rate in the general population, 5%, as well as the baseline rate reported in a study of adults presenting to the emergency room, 6% . Parents and caregivers have long reported using the internet and a source of cancer information . This study adds to this literature by exploring search data at a much more granular level and links search patterns relative to the cancer diagnosis.…”

“…6 Parents and caregivers have long reported using the internet and a source of cancer information. 1,3,[8][9][10][11] The increase in symptom searches prediagnosis suggests a signal that may be relevant for early cancer detection, a concept previously demonstrated in pancreatic cancer. 12 Other potential applications for symptom data include adverse event monitoring, which has been shown to be feasible in social media data including Twitter.…”

“…For a parent, learning their child has cancer can be overwhelming, stressful, and debilitating. After a new cancer diagnosis, parents seek social support and information from multiple sources including healthcare providers and the internet . Although it has been shown that cancer searches online correlate to cancer prevalence at a population level, little is known about the specific, granular information parents search for online.…”

“…After a new cancer diagnosis, parents seek social support and information from multiple sources including healthcare providers and the internet. [1][2][3] Although it has been shown that cancer searches online correlate to cancer prevalence at a population level, 4,5 little is known about the specific, granular information parents search for online. Understanding the content of parents' searches over time could offer insight into what matters most to parents and identify knowledge gaps that could inform more comprehensive approaches to family education and support.…”