OBJECTIVES : The 'Cost of Haemophilia in Men: A Socioeconomic Survey' (CHESS) study has previously highlighted the socioeconomic burden of haemophilia, while CHESS II collected more recent real-world data. The aim of the present analysis was to measure the impact of the disease on caregivers.

METHODS : CHESS II was a multinational, retrospective, burden of illness study. Physicians completed a Case Report Form (CRF), while patients provided information (including caregiver requirement) through patient public involvement engagement questionnaires (PPIE), on a voluntary basis. Patients with both CRF and PPIE responses were included in this analysis. Results are presented as n (%) or mean (standard deviation [SD]).

RESULTS : In total, 559/1337 (42%) patients completed the PPIE. They were on average 35.4 (13.9) years of age, with 393 (70%) diagnosed with haemophilia A (vs. 166 [30%] haemophilia B). Most patients had severe haemophilia (355 [64%], vs. 123 [22%] with moderate, and 81 [14%] with mild haemophilia). A total 279 (50%) patients had at least one damaged joint, while 404 (72%) patients experienced some level of pain. Most (417 [75%]) patients reported they did not require a caregiver. In those who required assistance from a caregiver, 21 (15%) reported they needed a professional caregiver, for an average of 16.37 (21.90) hours per week (n=19); while 121 (85%) patients reported they needed informal caregiving, for an average of 11.78 (7.95) hours per week (n=104). It was further reported that informal caregivers were predominantly fully employed (30, [29%]), or employed part-time (28 [27%]). A total 8/29 (27.6%) of the patients with relevant information, reported that their informal caregiver was prevented from working additional hours, due to their caregiver duties.

CONCLUSIONS : This analysis quantified the burden on the informal caregivers (family/friends) of people with haemophilia. Further research to understand the driving factors of this care requirement is warranted.