The behaviour and perception of illness: modulating variables of adherence in patients with haemophilia.

BACKGROUND: The recommended treatment in patients with severe haemophilia is prophylaxis. This prevents bleedings and reduces or delays the haemophilic arthropathy. Adherence defined as the follow-up of the patient to the prescriptions of the health professional to his treatment, both pharmacological and modifications in habits or stylelifes. Adherence rates in haemophilia are better than in other chronic diseases, but there remain reasons for nonadherence. The aim was to see if disease behaviour and disease perception together with coping strategies modulate adherence to treatment.

MATERIAL AND METHODS: Multicenter cross-sectional descriptive study. Patients recruited in Units of Hemophilia Hospitals and Regional Haemophilia Associations. Twenty-three patients participated The instruments used are as follows: data sheet, SF-36, A36 Hemophilia-Qol, Illness Perception Questionnaire-Revised (IPQ-R), Illness Behavior Questionnaire (IBQ) and Coping Strategies Inventory (CSI) and VERITAS-Pro.

RESULTS: We found that 56% of patients with haemophilia are adherent. The most relevant clinical variables were hemarthrosis, diagnosis of arthropathy and presence of any coinfection, as well as family history, labour status and sociodemographic variables. Age was not a relevant variable in adherence. The worst adherence coincides with poorer quality of life and inadequate coping style. Nonadherent patients show greater conviction of disease, perception of cyclicity, more hypochondriacal behaviour towards the illness and perception concern about possible side effects of medication.

CONCLUSION: Adherence in haemophilia requires a more experiential approach and individualized education. It is important that professionals take into account the patient's perception, behaviour and attitude towards the disease to achieve a better adaptation of their coping resources.