How well do your patients take their treatment?

“Treatments don’t work in people who don’t take them.” Seems obvious doesn’t it? According to the World Health Organization, research consistently shows that adherence to long-term therapy for chronic illnesses in developed countries averages 50%. No matter what disease you look at, patients experience difficulty in following treatment recommendations.

A recent study conducted in the US showed that around one-third of haemophilia doctors did not prescribe prophylaxis because they thought their patients wouldn’t take it. Here in Europe, it was shown a few years ago that most doctors would stop prophylaxis in around 70% of adults aged 16-22 years with severe haemophilia, often because they expected that patients would not comply with prophylaxis.

The benefits of prophylaxis are well known to all Haemnet readers, but what can you do to encourage your patients to stick with it?

Marlies Schrijvers (a Haemnet member) and her colleagues in The Netherlands recently read everything on adherence in the haemophilia literature so you don’t have to, and found that patients were motivated to adhere to treatment if they:

• Had experienced symptoms
• Believed in the need for treatment
• Had a good relationship with their health care professional.

The two main barriers to good adherence were increasing age and infrequent or absence of symptoms.

The Dutch group call for greater investment in education techniques and programs that promote “knowledge of the disease, reliance on the treatment and the health care provider.” They also advise healthcare professionals to focus not on adherence but on concordance – working with the patient to make joint decisions about whether, when and how treatments should be taken.

The haemophilia literature is relatively small – the Dutch group based their conclusions on just two high quality studies. Some years ago, a meta-analysis of 153 studies of interventions intended to improve adherence in chronic disease patients found that no single strategy had any clear advantage over any other but that combined cognitive, behavioural, and affective interventions were more effective than single interventions. Subsequently, US doctors refined this into the AIDES method for improving medication adherence:

• Assessment (assess all medications)
• Individualization (individualize the regimen)
• Documentation (provide written communication)
• Education (provide accurate and continuing education tailored to the needs of the individual)
• Supervision (provide continuing supervision of the regimen)

The more that any given treatment regime can be tailored to fit the patient’s everyday life without disrupting their lifestyle, the more successful it is likely to be. Probably worth thinking about as new treatments and regimens are licensed.

For those of you who like to collect references:

World Health Organization, Yach D. Adherence to Long-Term Therapies: Evidence for Action. Geneva, Switzerland: WHO library, 2003: 211.

Thornburg CD, Carpenter S, Zappa S, Munn J, Leissinger C. Current prescription of prophylactic factor infusions and perceived adherence for children and adolescents with haemophilia: a survey of haemophilia healthcare professionals in the United States. Haemophilia 2012; 18: 568–74.

Richards M, Altisent C, Batorova A, et al. Should prophylaxis be used in adolescent and adult patients with severe haemophilia? An European survey of practice and outcome data. Haemophilia. 2007;13:473–9.

Schrijvers LH, Uitslager N, Schuurmans MJ, Fischer K. Barriers and motivators of adherence to prophylactic treatment in haemophilia: a systematic review. Haemophilia 2013. doi: 10.1111/hae.12079

Roter DL, Hall JA, Merisca R, Nordstrom B, Cretin D, Svarstad B. Effectiveness of interventions to improve patient compliance: a meta-analysis. Med Care 1998; 36: 1138–61.

Bergman-Evans B. AIDES to improving medication adherence in older adults. Geriatr Nurs 2006; 27: 174–82.

Mike Holland is the founder of Haemnet and SixVibe. He is a freelance medical writer, editor and meeting organiser – find him at Google+ and Driftwood.