Adherence Management

Hemophilia and Bleeding Disorders Toolkit

Adherence & Assay/Cost Management: Adherence Management

Medication adherence reduces the occurrence of bleeding episodes and maintains joint health in individuals with hemophilia. With poor adherence, frequent bleeding and recurrent spontaneous bleeding episodes into the soft tissue and joints can occur. This can lead to joint damage and severe disability. Because the damage is progressive, it can lead to severely limited mobility of joints, muscle deterioration and chronic pain.

According to the World Health Organization (WHO), adherence to a chronic condition treatment regimen is determined by one or more of the following five dimensions or factors:

  • Patient-related (resources, knowledge, attitudes/beliefs, expectations)
  • Social and economic (high cost-share/copay, low health literacy)
  • Condition-related (severity of disease/symptoms)
  • Therapy-related (complexity of regimen, side effects)
  • Health system-related (transitioning from hospital to home care, site of care)

Reasons for non-adherence to treatment with bleeding disorders include:

  • Convenience issues/time
  • Social and family stress
  • Lack of commitment, forgetfulness
  • Cost of copays and insurance deductibles
  • Disease complications
  • Poor venous access
  • Transition to adulthood

Strategies for Addressing Non-Adherence

The best approach for addressing non-adherence is to first determine the reasons and then implement a plan with the patient to reduce risk and improve compliance. One approach includes use of an assessment tool/questionnaire to determine the reasons for non-adherence. Once the reason(s) are determined, a plan with appropriate interventions can be implemented by trained staff and/or coaches. This approach must be collaborative and the patient must be interested in improving adherence. If the reason for non-adherence is financial in nature, the plan should also include assistance to help the patient afford the cost of their medications.

Home therapy removes one major reason for non-adherence – inconvenience. Going to the doctor or a treatment center for therapy takes time and requires transportation.


Part of patient adherence management is maintaining the right inventory of hemophilia medication at home. Stockpiling occurs when a patient has an excessive amount of this medication on hand. This often happens when medication is automatically shipped without the pharmacy first checking with the patient to determine the number of doses remaining in the home. Payers and providers typically have limited insight into the number of doses of clotting factor being sent to patients and/or how much of the medication is actually used (especially since most patients self-medicate).

The following steps can minimize stockpiling and potential waste of these high-cost medications:

  • Hold your PBM/TPA accountable:
    • Understand what data needs to be made available to monitor their performance
    • Require they confirm and track patient doses at home prior to shipping
    • Require monitoring of inventory through patient infusion log tracking
  • Do not permit the specialty pharmacy to auto-ship hemophilia medications
  • Require the specialty pharmacy follows MASAC 242 recommendations (consider incorporating into the PBM contract)

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