Patient- and caregiver-reported outcome and experience measures for evaluating serious illness communication: An environmental scan
Hsien Seow, Anish K. Arora, Zhimeng Jia, Karen Zhang, Giulianna Melchionna, Oren Levine, Jessica Simon, Justin J. Sanders, Jeff Myers · 2026
Read Patient- and caregiver-reported outcome and experience measures for evaluating serious illness communication: An environmental scan by Hsien Seow, Anish K. Arora, Zhimeng Jia, Karen Zhang, Giulianna Melchionna, Oren Levine, Jessica Simon, Justin J. Sanders, Jeff Myers (2026) 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-13230674.txt.
Description
Hsien Seow and colleagues scan in 2026 what questionnaires exist for judging how well serious illness conversations work. Good talks about goals and values should ease suffering and match care to what patients want. Training programs are widespread, yet proof that they change real outcomes is thin because measures are scattered.
A three-year search of papers, grey sources, meetings, and expert advice found forty-seven measures. Most were written for patients, with far fewer built for caregivers or for both together. Few were designed for serious illness talks in particular, and topics ranged from the talk itself to later quality of life. Mapping the set gives a base for building one shared core set of outcome measures.
Catalog record
| CREATOR | Hsien Seow, Anish K. Arora, Zhimeng Jia, Karen Zhang, Giulianna Melchionna, Oren Levine, Jessica Simon, Justin J. Sanders, Jeff Myers |
|---|---|
| YEAR | 2026 |
| COLLECTION | PAPERS |
| FORMAT | TXT |
| FILE SIZE | 43 KB |
| VERSION | 1.0 |
| LICENSE | CC BY 4.0 |
| RIGHTS | CC BY |
| SOURCE | Europe PMC |