Intentional and unintentional non-adherence to prophylaxis in adolescents and young adults with hemophilia: A pilot study

Bridget Russell, Nicholas Troop, Josefine Magnusson, Sandra Van-Os, Lyndsay Hughes, G. Robinson

Research output: Contribution to conferenceAbstractpeer-review


Objectives: Individuals with hemophilia and other bleeding disorders are considered to be at high risk for infection with variant Creutzveldt-Jakob disease (vCJD) and are considered to be a public health risk. Due to the current work in the UK on the development of an accurate test for vCJD, this study aimed to identify cognitive predictors of intention to be tested for vCJD once a test became available and also the services required to support this decision.
Methods: Ninety men and women with hemophilia and other bleeding disorders were recruited through the U.K. Haemophilia Society. A questionnaire evaluating components of an extended Theory of Planned Behaviour (TPB) in order to predict vCJD screening was used (attitudes towards screening, subjective norms, self-efficacy, perceived control, and anticipated regret). Several models were tested using Structural Equation Modelling (SEM).
Results: Intention to undertake vCJD screening was high with 65% intending to be screened. The tested structural models for the TPB all fitted well. Self-efficacy and a latent variable combining attitudes and anticipated regret components together (labelled behaviour evaluation) explained 71% of the variance in intention to screen. In terms of subjective norms, those relating to the attitudes of family and friends proved important, and those of doctors were non-significant. The effect of subjective norms on intention seemed to be mediated by behaviour evaluation.
Conclusions: Identifying predictors means simple interventions can be developed that can be used to address these factors to help people reach a decision that is right for them. For example, the results suggest that development of educational information should address salient attitudes, subjective norms, and perceptions of control. In addition, outcome simulation role play would address anticipated emotional responses to testing. Significant others such as friends and family could be invited to be involved in the decision-making process.
Original languageEnglish
Number of pages1
Publication statusPublished - 2012
EventInternational Congress of the World Federation of Haemophilia - Paris, France
Duration: 8 Jul 201212 Jul 2012


ConferenceInternational Congress of the World Federation of Haemophilia
Internet address


  • haemophilia, prophylaxis, prophylactic, adherence, concordance, young, youth, boy, deliberate, unintentional


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