Self-reported activity and functioning in daily life; the perspective of persons with haemophilia living in Sweden.

OBJECTIVES

To investigate the self-estimated function, activity and participation in daily life of persons with severe or moderate haemophilia A and B (PWH) living in Sweden. The secondary aim was to explore the differences between participants with early treatment onset and later.

METHODS

The Haemophilia Activity List (HAL), Arthritis Impact Measurement Scales (AIMS2) and Impact on Participation and Autonomy (IPA-S) were distributed by mail to 225 PWH with an invitation to participate in the study. The median and min-max are given for the different domains; a higher value indicates more disability.

RESULTS

Eighty-four PWH (18-80 years) participated. The HAL indicated more problems in the legs [40 (0-100)] than in self-care [4 (0-92)] and household tasks [3 (0-87)]. The AIMS2 scores confirmed this (physical activity 12 (0-64.5) as well as somewhat reduced autonomy outdoors [IPA-S 17.5 (0-90)]. More limitations in daily life were reported by participants with later treatment onset.

CONCLUSION

The PWH reported greater disability in the domains related to activities using the lower extremities compared to domains related to upper extremity. This study pointed out the need of using different questionnaires to capture patients own perspective and as useful supplement to other clinical assessment instruments.