Greater awareness of hemophilia and its symptoms is associated with better adherence to treatment by patients, and those with more severe disease are most likely to use a treatment as prescribed, a study based on a new questionnaire shows.
Responses were seen to validate this questionnaire, which addresses disease understanding and personal perceptions as well as treatment use.
The study, “Haemo-Adhaesione: A New Measure of Adherence for Adolescent and Adult Patients with Haemophilia,” was published in the journal Patient Preference and Adherence.
Hemophilia is caused by a lack of specific blood-clotting proteins. Standard treatment is to provide the missing factors either during bleeding episodes (on-demand) or on a regular basis as a preventive measure (prophylaxis).
Following a recommended treatment plan — called adherence — is considered essential for patients to maintain control of their disease and live a normal life. However, studies have shown that adherence rates for people with hemophilia can be lower than 50%.
Questionnaires are used to assess treatment adherence among patients, but recent studies have suggest they do not deeply enough into all the components of being adherent to therapy. These include evaluating patients’ beliefs or perceptions about treatment needs, motivation and attitudes, how they relate to their doctors and other health professionals, and whether they participate in decision-making.
A research team in Spain designed a multidimensional questionnaire to address this gap. This questionnaire — called Haemo-Adhaesione — included a compliance section to determine whether a patient followed medical guidelines, and a section that looked at a patient’s awareness of the disease and its management, their relationship with treating professionals, and their understanding of hemophilia’s potential consequences.
To develop this questionnaire, the team reviewed the medical literature and identified five factors important for adherence: disease awareness, knowledge of disease-associated complications (sequelae knowledge), difficulties with treatment, doctor-patient relationship, and hemorrhagic (bleeding) process treatment. Ten other questions on disease characteristics, treatment types, complications, and preventive measures were also included.
After its evaluation by hemophilia experts and a group of patients, the final version of the Haemo-Adhaesione questionnaire was tested in people receiving either on-demand treatments or regular prophylaxis for their hemophilia.
A total of 146 people with mild to severe hemophilia, ages 15 to 64, were recruited from several hemophilia treatment centers in Spain. Among this group, 120 had type A and 26 had type B hemophilia. On-demand treatment was given to 62 patients and 84 were receiving regular prophylaxis.
Results revealed a high degree of adherence, with greater disease awareness among people on prophylaxis.
The Haemo-Adhaesione scale was found to be statistically valid and reliable for assessing adherence in these patients. Overall, significant correlations were found across test dimensions, except for disease awareness.
All Haemo-Adhaesione dimensions correlated with the VERITAS-Pro scale, except for hemorrhagic processes treatment. For instance, disease awareness was associated with VERITAS-Pro items such as dose, plan and total score, while difficulties with treatment correlated with plan, remember, slip and communicate subscales, as well as with total score.
The lack of attention to hemorrhagic processes by those on prophylaxis may have resulted from the effectiveness of the treatment used in easing symptoms, leading patients to be less concerned with or worried about them. “This aspect is important to consider with regard to adherence,” the scientists wrote.
Similar results were seen in how well Haemo-Adhaesione associated with VERITAS-PRN, except for disease awareness. According to the researchers, although patients taking on-demand treatment showed satisfactory treatment adherence, their poorer disease awareness may be due to their mild symptoms.
Patients receiving on-demand therapy were more likely to adhere to bleeding treatments than those on regular prophylaxis. People needing to treat the disease during bleeding events may feel less protected, and as a result pay more attention to treatments, the investigators suggested.
Overall, patients with severe symptoms showed the greatest adherence, while those with a family history had greater difficulties with treatment.
“The Haemo-Adhaesione scale is a satisfactory measure of patient adherence to haemophilia,” the scientists wrote. “Patients with greater adherence are more aware of their symptoms, which favours their involvement in following the guidelines indicated on a regular basis.”
However, “new treatments that reduce the number of treatment days and symptoms can lead patients to ‘forget’ the disease and show consequently inadequate adherence. Therefore, these psychosocial aspects play a determining role in adherence,” they added.
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