title: Unravelling adherence to prophylaxis in haemophilia: a patients' perspective.
abstract: Given the lifelong therapy in haemophilia patients, insight in non-adherence behaviour from a patient perspective is important to understand patients' difficulties with the following treatment recommendations. The aim of this study was to clarify the process underlying adherence (behaviour) to prophylactic treatment, from a patients' perspective. To develop a grounded theory, a qualitative study using individual in-depth interviews was performed to understand experiences, perceptions and beliefs concerning adherence to prophylaxis. From two Dutch treatment centres, 21 adults with haemophilia using prophylaxis were interviewed. Patients were asked how they experience their task to administer prophylaxis and how they adhere to this. The interviews were transcribed, coded and analysed in an iterative process, leading to the development of the grounded theory. Adherence was determined by the position of prophylaxis in life. The position of prophylaxis was determined by the perception of prophylaxis and the ability to exert prophylaxis. Patients' perception was influenced by two main factors: acceptance of haemophilia and feeling/fearing symptoms. The ability to exert prophylaxis was influenced by understanding haemophilia and prophylaxis and planning/infusion skills. The combination of different perceptions and skills led to four main positions of prophylaxis in life: (i) prophylaxis integrated in life, (ii) prophylaxis according to doctors' advice, struggling with irregular situations, (iii) prophylaxis is too much to handle, (iv) prophylaxis is a confrontation with illness. The adherence level gradually decreased from position 1 to 4. This information can be used to design tailored interventions to promote adherence.
authors: Van Creveldkliniek, University Medical Center Utrecht, Utrecht, the Netherlands.
authors: L H
authors: LH
authors: Schrijvers
authors: Julius Center for Health Sciences and Primary Care, University Medical Centre, Utrecht, the Netherlands.
authors: M C
authors: MC
authors: Kars
authors: Haemophilia Treatment Centre, Academical Medical Center Amsterdam, Amsterdam, the Netherlands.
authors: M
authors: M
authors: Beijlevelt-van der Zande
authors: Haemophilia Treatment Centre, Academical Medical Center Amsterdam, Amsterdam, the Netherlands.
authors: M
authors: M
authors: Peters
authors: Faculty of Health Care, Nursing Science, University of Applied Science, Utrecht, the Netherlands.|Nursing Science, University Medical Center Utrecht, Utrecht, the Netherlands.
authors: M J
authors: MJ
authors: Schuurmans
authors: Van Creveldkliniek, University Medical Center Utrecht, Utrecht, the Netherlands.|Julius Center for Health Sciences and Primary Care, University Medical Centre, Utrecht, the Netherlands.
authors: K
authors: K
authors: Fischer
mesh_terms: D000328:Adult; D003710:Demography; D007722:Health Knowledge, Attitudes, Practice; D006467:Hemophilia A / Q000188:drug therapy* / Q000517:prevention & control*; D006801:Humans; D055118:Medication Adherence; D008875:Middle Aged; D055815:Young Adult
keywords: barrier; compliance; determinants; haemophilia; qualitative study; treatment