Perceived unmet needs and impact on quality of life of patients living with advanced bladder cancer and their caregivers: results of a social media listening study conducted in five European countries
Stephane Schuck, Paul Loussikian, Adel Mebarki, Joelle Malaab, Pierre Foulquié, Manissa Talmatkadi, Mairead Kearney · 2024
Read Perceived unmet needs and impact on quality of life of patients living with advanced bladder cancer and their caregivers: results of a social media listening study conducted in five European countries by Stephane Schuck, Paul Loussikian, Adel Mebarki, Joelle Malaab, Pierre Foulquié, Manissa Talmatkadi, Mairead Kearney (2024) in the Tower of Babel, a free online library of public-domain works preserved in clean, searchable text. No sign-up. The full text is served as a plain-text file at a predictable URL, where text is present: https://antarctic-labs.com/tower-of-babel/pmc-11587617.txt.
Description
Advanced bladder cancer carries a poor outlook, and a seven-author team listened where patients actually talk: social media. They gathered public posts from five European countries over four years, ending with 1,670 posts from patients and caregivers, and used language-processing tools plus human reading to sort needs and burdens.
Forty percent of the users described damage to their quality of life, split between physical struggles and psychological ones. The loudest needs ran across the whole care path: the disease worsening, the mental toll, and a hunger to share experiences and find support. Caregivers, mostly women and younger than the patients, carried a heavy share of the posting and, evidently, of the strain. The authors urge better education and support structures, and better palliative options, built around what patients say unprompted.
Catalog record
| CREATOR | Stephane Schuck, Paul Loussikian, Adel Mebarki, Joelle Malaab, Pierre Foulquié, Manissa Talmatkadi, Mairead Kearney |
|---|---|
| YEAR | 2024 |
| COLLECTION | PAPERS |
| FORMAT | TXT |
| FILE SIZE | 49 KB |
| VERSION | 1.0 |
| LICENSE | CC BY 4.0 |
| RIGHTS | CC BY |
| SOURCE | Europe PMC |