PB1303 - A study of support for hemophilia patients using the "Questionnaire for daily movement and sensory of PwH”

Background: The environment has changed dramatically for hemophilia patients in recent years, as the treatment has progressed rapidly. Although we have reached a point where all hemophilia patients can aim for zero bleeding, the situation is different for patients who already have hemophilic arthropathy, and for some patients, it interferes with their daily lives.

Aims: In this study, we investigated how patients perceive the limitations in the joint range of motion and how much it affects their daily lives, using the "Questionnaire for daily movement and sensory of PwH (Prepared by Sanofi K.K.)”.

Methods: We evaluated 18 adult patients with hemophilia (average age of 43 years old). The"Questionnaire for daily movement and sensory of PwH " was administered together with the patients during the interview. The patients' movements as seen from their mothers' and wives' perspectives were confirmed using the same checklist.

Results: 16 patients were aware of limited joint range of motion, and abnormalities were also noted on the imaging diagnosis. Among them, 11 patients answered that they had some kind of "difficult movement”. When a check sheet was used to listen to detailed stories, the number of "difficult movements" increased from 11 to 13. The results were the same as the mothers' and wives' evaluations.

Conclusion(s): Some patients did not feel "difficult" even though they had limited joint range of motion. This suggests that the patients do not feel that it is difficult because they take it for granted that it is inconvenient, or they overcome inconvenience with their own creativity, which is an aspect of high adaptability. Since their families are more worried than the patient’s thoughts, it is the role of the medical staff to bridge the gap between the patients and their families.