ADHERENCE TO PROPHYLAXIS IN RELATION TO QUALITY OF LIFE AND ANXIETY LEVEL IN TURKISH PATIENTS WITH SEVERE HAEMOPHILIA A


KAYA Z., KİRKİZ KAYALI S., ALBAYRAK M., GÜNEY E., AYTAÇ EYÜPOĞLU Ş. S.

International Journal of Health Services Research and Policy, vol.5, no.3, pp.194-205, 2020 (Peer-Reviewed Journal)

Abstract

Bleeding increases anxiety and reduces quality of life (QoL) for patients with severe haemophilia A. Prophylaxis is a therapeutic approach that enhances QoL for these individuals; however, compliance is a major issue. This study investigated adherence to prophylaxis in relation to QoL and anxiety level in patients with severe haemophilia A and in their parents. Forty-three patients with severe haemophilia A were stratified into three groups by age: 12 children aged 2-13 years, 17 adolescents aged 14-21 years, and 14 adults aged >21 years (range, 21-65 years). Quality of life and anxiety level were assessed using the 36-item Short Form Health Survey (SF-36) and the State-Trait Anxiety Inventory (STAI), respectively. Regular prophylaxis (RP) and pharmacokinetic (PK)-guided prophylaxis were prescribed for 30 and 13 patients, respectively. All the children (n=12; nine who received RP, three who received PK-guided prophylaxis) and 10 (58.8%) of the adolescents (all of whom received PK-guided prophylaxis) were completely adherent to prophylaxis. Seven (41.2%) of the adolescents and all 14 adults (100%) were non-adherent to prophylaxis. Compared to findings for the adolescents, anxiety level was higher among the children’s parents and among the adult patients (p<0.05 for both). The QoL level was lower for the adult patients than for the parents of child patients and for the adolescent patients (p<0.05 for both). Regarding patients with severe haemophilia A, PKguided prophylaxis for adults and home treatment for small children would enhance adherence to prophylaxis, increase QoL and reduce anxiety levels