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Quality of Life Research
Gepubliceerd in: Quality of Life Research 3/2016

01-03-2016 | Special Section: PROs in Non-Standard Settings (by invitation only)

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

Auteurs: Sarah A. Marshall, Christopher C. Yang, Qing Ping, Mengnan Zhao, Nancy E. Avis, Edward H. Ip

Gepubliceerd in: Quality of Life Research | Uitgave 3/2016

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Abstract

Purpose

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.

Methods

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.

Results

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.

Conclusions

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.
vorige artikel Evaluation of pedometry as a patient-centered outcome in patients undergoing hematopoietic cell transplant (HCT): a comparison of pedometry and patient reports of symptoms, health, and quality of life
volgende artikel Mode of administration does not cause bias in patient-reported outcome results: a meta-analysis
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Metagegevens
Titel
Symptom clusters in women with breast cancer: an analysis of data from social media and a research study
Auteurs
Sarah A. Marshall
Christopher C. Yang
Qing Ping
Mengnan Zhao
Nancy E. Avis
Edward H. Ip
Publicatiedatum
01-03-2016
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 3/2016
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-015-1156-7

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