Responsiveness and Minimal Important Change of the Haemophilia Activities List in Patients With Inherited Bleeding Disorders
Johan Blokzijl, Isolde A R Kuijlaars, Martijn F Pisters, Cindy Veenhof, Janjaap van der Net, Roger E G Schutgens, Kathelijn Fischer, Merel A Timmer · 2026
Read Responsiveness and Minimal Important Change of the Haemophilia Activities List in Patients With Inherited Bleeding Disorders by Johan Blokzijl, Isolde A R Kuijlaars, Martijn F Pisters, Cindy Veenhof, Janjaap van der Net, Roger E G Schutgens, Kathelijn Fischer, Merel A Timmer (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-13551243.txt.
Description
Johan Blokzijl's team tested whether a survey for people whose blood does not clot as it should can spot real change over time, in a 2026 study. The Haemophilia Activities List asks patients to rate limits on daily tasks and social life. It is used widely in care and research, yet little was known about how well it tracks change. The team tracked patients who were due for bone and joint surgery.
Each person filled in the list before surgery and again at three and twelve months, plus tests of pain and movement. In 28 people having 32 operations, score shifts matched shifts in movement and daily-task scores well. The list also told apart those who got better from those who did not, with strong accuracy. The smallest shift patients called meaningful was less than the list's detection limit, so a shift past that limit likely marks a change patients truly feel.
Catalog record
| CREATOR | Johan Blokzijl, Isolde A R Kuijlaars, Martijn F Pisters, Cindy Veenhof, Janjaap van der Net, Roger E G Schutgens, Kathelijn Fischer, Merel A Timmer |
|---|---|
| YEAR | 2026 |
| COLLECTION | PAPERS |
| FORMAT | TXT |
| FILE SIZE | 27 KB |
| VERSION | 1.0 |
| LICENSE | CC BY 4.0 |
| RIGHTS | CC BY |
| SOURCE | Europe PMC |