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21-05-2024

Extracting big data from the internet to support the development of a new patient-reported outcome measure for breast implant illness: a proof of concept study

Auteurs: Sophia Hu, Jinjie Liu, Sylvie D. Cornacchi, Anne F. Klassen, Andrea L. Pusic, Manraj N. Kaur

Gepubliceerd in: Quality of Life Research | Uitgave 7/2024

Abstract

Purpose

Individuals with health conditions often use online patient forums to share their experiences. These patient data are freely available and have rarely been used in patient-reported outcomes (PRO) research. Web scraping, the automated identification and coding of webpage data, can be employed to collect patient experiences for PRO research. The objective of this study was to assess the feasibility of using web scraping to support the development of a new PRO measure for breast implant illness (BII).

Methods

Nine publicly available BII-specific web forums were chosen post-consultation with two prominent BII advocacy leaders. The Python Selenium and Pandas packages were used to automate extraction of de-identified text from the individual posts/comments into a spreadsheet. Data were coded using a line-by-line approach and constant comparison was used to create top-level domains and sub-domains.

Results

6362 unique codes were identified and organized into four top-level domains of information needs, symptom experiences, life impact of BII, and care experiences. Information needs of women included seeking/sharing information pre-breast implant surgery, post-breast implant surgery, while contemplating explant surgery, and post-explant surgery. Symptoms commonly described by women included fatigue, brain fog, and musculoskeletal symptoms. Many comments described BII’s impact on daily activities and psychosocial wellbeing. Lastly, some comments described negative care experiences and experiences related to advocating for themselves to providers.

Conclusion

This proof-of-concept study demonstrated the feasibility of employing web scraping as a cost-effective, efficient method to understand the experiences of women with BII. These data will be used to inform the development of a BII-specific PROM.

vorige artikel Health-related quality of life in reproductive-age women on antiretroviral therapy: a cross sectional study in Ethiopia

volgende artikel Optimization of alert notifications in electronic patient-reported outcome (ePRO) remote symptom monitoring systems (AFT-39)

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Titel: Extracting big data from the internet to support the development of a new patient-reported outcome measure for breast implant illness: a proof of concept study
Auteurs: Sophia Hu
Jinjie Liu
Sylvie D. Cornacchi
Anne F. Klassen
Andrea L. Pusic
Manraj N. Kaur
Publicatiedatum: 21-05-2024
Uitgeverij: Springer International Publishing
Gepubliceerd in: Quality of Life Research / Uitgave 7/2024
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-024-03672-6

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Extracting big data from the internet to support the development of a new patient-reported outcome measure for breast implant illness: a proof of concept study

Abstract

Purpose

Methods

Results

Conclusion

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Log in om toegang te krijgen

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