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Central Nervous System

Activating patients to improve adherence

  • The Patient Activation Measure (PAM) and Medication Adherence Questionnaire are methods for measuring patient health behavior and adherence to prescribed therapy.
  • The PAM can be used to evaluate a patient’s ability to manage her health and condition; adherence questionnaires can be used to evaluate the patient’s level of adherence.
  • These tools can be applied by HCPs to characterize patients’ needs and provide relevant information and support.

Measures and survey tools are useful for characterizing patient health behavior

Chronic diseases are a global public health issue and are increasing in prevalence and associated costs. These conditions require significant self-management by patients, including adherence to therapy regimens and medication.1

Adherence to epilepsy medication is associated with improved control of symptoms; however, non-adherence is significant and is associated with worse outcomes, such as uncontrolled seizures which can lead to not only physical injury, such as head trauma, fractures and burns, but also psychosocial problems such as depression and decreased quality of life.2,3 Parkinson’s disease, non-adherence can result in worse disease control, with diminished mobility, greater fluctuations, dyskinesias, and worsening quality of life.4

Previous articles in this series have discussed how different qualitative theories, such as the Theory of Planned Behavior and COM-B, can provide useful insights regarding patient’s health behavior and improve non-adherence and disease outcomes.

Different quantitative methods also exist and are useful for characterizing health behavior and supporting patients in the self-management of their conditions. Surveys and questionnaires have the advantages of being easy to implement at the point of care and being acceptable to patients.5 Furthermore, they provide explicit examples and information on patient behavior that physicians can use to personalize care. The Patient Activation Measure, the Medication Adherence Questionnaire, and the Brief Medication Questionnaire are examples of such survey tools.6–8

Emotionally supportive and easily accessible providers who recognize patients as autonomous and motivate them to self-manage are associated with higher levels of patient activation.8

Patient Activation Measure reflects the patient’s ability to manage her health 

The Patient Activation Measure (PAM) reflects “the individual’s knowledge, skill and confidence in managing his/her own health and care”, and it is the most reliable indicator of a patient’s willingness and ability to manage her health and care autonomously. Activation theory is rooted in the transtheoretical behavioral model, discussed previously in this series.8

The PAM-13 questionnaire categorizes the patient into one of four progressively higher “stages of activation”, with higher activation stages indicating that the patient is more engaged with healthy behavior such as diet, exercise, and adherence to guidelines and treatments.1,8

Patient activation has been shown to be linked to positive clinical behavior and outcomes, including treatment adherence, and there is significant interest in being able to evaluate and influence the patient’s level of activation. The importance of the physician/patient relationship has been established: emotionally supportive and easily accessible providers who recognize patients as autonomous and motivate them to self-manage are associated with higher levels of patient activation.8

Medication questionnaires can explicitly characterize patient adherence

Scales and surveys specifically quantifying medication adherence also exist and include self- reported questionnaires. These questionnaires are practical, flexible, and can help physicians identify individual patient beliefs and concerns while providing real-time, relevant feedback.9 While a number of adherence questionnaires are available, the Medication Adherence Questionnaire and the Brief Medication Questionnaire are consistently cited as notable exemplars in the literature:5,6,9

  • The Medication Adherence Questionnaire (MAQ), also known as the 4-item Morisky Medication Adherence Scale (MMAS-4) and Morisky Scale, is the most common adherence scale and is short, simple to use, and validated across many different disease areas. It addresses barriers to adherence but does not consider self- efficacy.5,9 Questions for patients with epilepsy would include:
    • Do you sometimes forget to take your medication?5
    • When you feel like your seizures are controlled, do you sometimes stop taking your medicine?5
  • The Brief Medication Questionnaire is similarly succinct and able to detect different types and drivers of non-adherence: regimen (repeat vs. sporadic), beliefs about drug efficacy, and recall (difficulties in remembering medication-taking behavior); however, it is more onerous to use at the point of care.5 Questions for patients with Parkinson’s disease would include:5
    • Indicating the number of medications taken
    • Listing all current medications

These questionnaires have the advantages of being relatively easy to administer, available in the English language, and are broadly applicable for patients with neurological disorders.6 They provide a useful basis for physicians to understand their patients’ adherence behavior and can inform routine clinical practice.

Patient Activation Measure and adherence questionnaires can provide useful insights in routine clinical practice

The PAM and medication adherence questionnaires can help physicians understand their patients’ attitudes and beliefs about their health and adherence. Understanding where a patient is on the activation continuum can indicate the type of support required. The PAM “activation stages” are as follows:7,10

  • Stage 1, “Disengaged and Overwhelmed”: the patient does not strongly believe in or understand her role in managing her care. The patient may not try to inform herself or take her medication regularly, because she does not see herself as being responsible for managing her seizures – “My doctor is in charge of my health”.10
  • Stage 2, “Becoming aware but struggling”: the patient feels responsible for managing her care and adhering to treatment, but may not take her medication as directed because she does not fully understand the value of doing so, or she does not have the confidence needed to act and believes health is largely out of their control – “I could be doing more”.10
  • Stage 3, “Taking action”: the patient is fully informed and autonomous, making needed lifestyle changes and taking her treatment as directed; however, she may need additional support to maintain adherence – “I’m part of my healthcare team”. 10
  • Stage 4, “Maintaining and pushing further”, the patient has adopted the new behavior of adhering to her prescribed regimen for some time but may not maintain her behavior under stress. Maintaining a healthy lifestyle is a key focus: “I’m my own advocate”.10

During the patient’s regular check-up, her physician can gain insights by using these tools. Even without the tools themselves, insights can be gained by asking the following questions such as these, based on the PAM and cited adherence questionnaires:

  • How do you see your role with respect to your health? Do you think that taking an active role is important?1
  • Do you know what lifestyle changes and treatments are available to you for your symptoms?1
  • Do you know what your prescribed medications and therapies do?1
  • When you feel like your symptoms are under control, do you sometimes stop taking your medicine?5

Physicians can use the responses to provide the support needed to boost patient activation and improve adherence. For the patient with epilepsy who does not necessarily see herself as responsible for managing her seizures, she may lack elementary knowledge about uncontrolled seizures and the possible outcomes. Her physician can educate her regarding her condition and symptoms. Similarly, a patient with higher activation may have the necessary skills and knowledge to manage her condition and adhere to treatment, but her adherence behavior may be derailed by stress or unexpected health events.7 Her physician can positively influence her activation and adherence by making himself available to address any questions or concerns she may have and helping her to feel supported should any unexpected changes arise.

Theory-based interventions are available to support physicians and patients in managing chronic conditions

Various behavioral models exist for understanding and influencing patients’ health behavior and adherence. Surveys and questionnaires can complement more qualitative approaches, and physicians can apply aspects of all these tools to characterize the patient’s needs and provide the appropriate support. Furthermore, physicians often have access to interventions, or Patient Support Programs, that are developed based on these theories specifically to assist physicians and their patients in managing long-term conditions. These tools are generally designed with input from physicians to maximize their utility. Patient Support Programs will be discussed in future articles in this series.

References

  1. Kinney RL, et al. The association between patient activation and medication adherence, hospitalization, and emergency room utilization in patients with chronic illnesses: A systematic review. Patient Education and Counseling 2015;98:545–52.
  2. McAuley JW, et al. An evaluation of self-management behaviors and medication adherence in patients with epilepsy. Epilepsy and Behavior 2008;13:637–41.
  3. Ferrari CMM, et al. Factors associated with treatment non-adherence in patients with epilepsy in Brazil. Seizure 2013;22:384–9.
  4. Fleisher JE and Stern MB. Medication Non-adherence in Parkinson’s Disease. Curr Neurol Neurosci Rep 2013;13(10) doi:10.1007/s11910-013-0382-z.
  5. Čulig J and Leppée M. From Morisky to Hill-Bone; Self-Reports Scales for Measuring Adherence to Medication. Coll Antropol 2014;38(1):55–62.
  6. Lavsa SM, et al. Selection of a validated scale for measuring medication adherence. J Am Pharm Assoc 2003;51(1):90–4.
  7. Hibbard JH, et al. Development of the Patient Activation Measure (PAM): Conceptualizing and Measuring Activation in Patients and Consumers. Health Serv Res 2004;39:1005–26.
  8. Graffigna G, et al. The role of Patient Health Engagement Model (PHE-model) in affecting patient activation and medication adherence: A structural equation model. PLoS One 2017;12(6):e0179865.
  9. Lam WY and Fresco P. Medication Adherence Measures: An Overview. Biomed Res Int 2015;2015:217047.
  10. Gimbel R, et al. Enhancing mHealth Technology in the Patient-Centered Medical Home Environment to Activate Patients With Type 2 Diabetes: A Multisite Feasibility Study Protocol. JMIR Res Protoc 2017;6(3):e38.