The Illness Perceptions and Treatment Beliefs of Individuals with Severe Haemophilia and their Role in Adherence to Home Treatment

Abstract

The majority of individuals in the UK with severe haemophilia treat themselves at home with clotting factor. The aim of this study was to examine patient's beliefs about their haemophilia, their beliefs regarding treatment with clotting factor and to assess whether relationships existed between these factors and adherence to home treatment. Patient beliefs were assessed by posting individuals with severe haemophilia A and B ( n = 104) the Illness Perceptions Questionnaire (IPQ) and the Beliefs about Medicines Questionnaire (BMQ). The final analysis was based on 65 questionnaires yielding a response rate of 63%. Adherence to the frequency and to the amount of each clotting factor dose was assessed for individuals treating prophylactically and the amount of each clotting factor dose for those only treating 'on-demand'. Adherence scores were calculated by comparing individual patient treatment records with recommended regimens. Regression analysis indicated that perceptions of illness identity and treatment necessity explained a significant amount of the variance in adherence to frequency of prophylactic infusions and that illness identity was associated with the adherence to the amount of each prophylactic dose. Further regression analysis also showed that the amount of each dose of clotting factor administered on-demand was associated with perceptions regarding the necessity of treatment. Analysis with a combined measure of adherence to dose amount indicated that patients treating on-demand or with prophylaxis who under treated, recorded significantly lower perceptions of illness consequence than individuals who were fully adherent or who over-treated. The results suggest that assessing illness perceptions, especially beliefs regarding identity , consequence and necessity of treatment, may play a valuable role in identifying which individuals are least likely to adhere to treatment.