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Symptom clusters in women with breast cancer: an analysis of data from social media and a research study
Journal article   Open access   Peer reviewed

Symptom clusters in women with breast cancer: an analysis of data from social media and a research study

Sarah A Marshall, Christopher C Yang, Qing Ping, Mengnan Zhao, Nancy E Avis and Edward H Ip
Quality of life research, v 25(3), pp 547-557
Mar 2016
PMID: 26476836
url
https://doi.org/10.1007/s11136-015-1156-7View
Published, Version of Record (VoR) Open

Abstract

Health Status Indicators Social Media Humans Middle Aged Self Report Symptom Assessment - methods Breast Neoplasms - complications Breast Neoplasms - psychology Aged, 80 and over Checklist Quality of Life Adult Female Aged Cluster Analysis
User-generated content on social media sites, such as health-related online forums, offers researchers a tantalizing amount of information, but concerns regarding scientific application of such data remain. This paper compares and contrasts symptom cluster patterns derived from messages on a breast cancer forum with those from a symptom checklist completed by breast cancer survivors participating in a research study. Over 50,000 messages generated by 12,991 users of the breast cancer forum on MedHelp.org were transformed into a standard form and examined for the co-occurrence of 25 symptoms. The k-medoid clustering method was used to determine appropriate placement of symptoms within clusters. Findings were compared with a similar analysis of a symptom checklist administered to 653 breast cancer survivors participating in a research study. The following clusters were identified using forum data: menopausal/psychological, pain/fatigue, gastrointestinal, and miscellaneous. Study data generated the clusters: menopausal, pain, fatigue/sleep/gastrointestinal, psychological, and increased weight/appetite. Although the clusters are somewhat different, many symptoms that clustered together in the social media analysis remained together in the analysis of the study participants. Density of connections between symptoms, as reflected by rates of co-occurrence and similarity, was higher in the study data. The copious amount of data generated by social media outlets can augment findings from traditional data sources. When different sources of information are combined, areas of overlap and discrepancy can be detected, perhaps giving researchers a more accurate picture of reality. However, data derived from social media must be used carefully and with understanding of its limitations.

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Collaboration types
Domestic collaboration
Web of Science research areas
Health Care Sciences & Services
Health Policy & Services
Public, Environmental & Occupational Health
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