At the 2012 Canadian Rheumatology Association Conference, the attending CAB members were introduced to the role of “adherence” in health care.  It soon became clear that this was an important issue and one that called for more information – information that could then be passed on to the readers of The Arthritis Newsletter. When one considers her background, it is easy to understand why we enlisted the help of Dr. Anne Townsend. Dr. Townsend is an affiliate scientist at the Arthritis Research Centre of Canada, a research associate at the Maurice Young Centre for Applied Ethics, School of Interdisciplinary Studies, University of British Columbia, and an Instructor in the Department of Sociology. Dr Townsend is a qualitative researcher whose work in chronic illness focuses on self-management and issues of identity, shared decision-making, medication use and concordance, and consulting behaviour. Her work in ethics includes the ethics of qualitative research to inform an evidence base; the experience of being a health research subject; and issues of relational autonomy in the patient / consumer-physician relationship [CAB members were treated to an overview of her work in ethics several months ago].

 

Here are the answers to our questions regarding “adherence”:

 

What is adherence?

• In terms of a diet or exercise/activity routine that is intended to stabilize or improve one’s health.
• It also refers to medication use intended to stabilize or improve one’s health. Most of us are given a prescription for a medicine at some time in our lives. Adherence exists when we follow the prescription instructions strictly. However, many of us don’t use medicines as prescribed, and this non-adherence is recognized as a major problem in health care, particularly in relation to ongoing (chronic) illness management.

 

Put simply, adherence is sticking to a behavior / lifestyle change. Examples:

 

Let’s focus on medication use:

 

What types of non-adherence are there?

• reducing the dose and/or frequency of intake,
• taking medicine ‘holidays,’
• relaying or not starting medicines, or
• stopping altogether.

 

Research shows that patients may take medicines in ways that make ‘common sense’ to the patient rather than following prescription / medical instructions.  ‘Common-sense’ medicine use includes:

 

These types of ‘intentional’ non-adherence behaviours may appear to be rational to some patients based on their beliefs, or individual circumstances, priorities, preferences, and experiences.

 

1. 1. What are some of the main factors related to intentional non-adherence to some prescriptions?
      • Perceived personal need is often weighed against concerns over potential and actual adverse side effects.  These concerns may reflect patients’ previous experiences with medicines, or patients’ knowledge obtained from a variety of sources (i.e. formal health care sources, friends, family, or diverse websites).
      • Taking other medicines for co-existing conditions.
      • Practical obstacles, such as difficulty in fitting medicine ingestion into daily/weekly routines, or managing side effects impacting upon activities and obligations.
   2. What about less intentional non-adherence in medication use?
      • Issues around memory (e.g. forgetting instructions or forgetting to take medicines as prescribed)
      • Physical obstacles (e.g. difficulties in opening medicine containers, using devices such as injections, and/or difficulties in swallowing medicines)
      • Knowledge (e.g. being unaware of the need to obtain a repeat prescription or not recognizing the importance of strictly following the prescribed dosage).

 

Unintentional non-adherence refers to barriers to patients taking medicines as prescribed. These might include:

 

The term ‘adherence’ is often used interchangeably with ‘compliance’ and ‘concordance’. Do they mean the same thing?

Many researchers and policy makers identify important differences between these terms.

 

Adherence: Means using medications exactly as they are prescribed.

 

Compliance: Relates to following instructions for prescribed medicines. This term reflects the traditional view of the doctor-patient relationship and suggests a passive patient.

 

Concordance: The focus here is active and involved ‘patients as partners’, taking part in shared decision-making resulting in the issuance of a prescription. This also includes ongoing support after a decision has been made to take medications.

 

Do we know whether compliance or concordance is more likely to improve adherence?

Researchers have shown that in chronic illness, adherence (e.g. keeping strictly to a prescription) is less likely to be present when it is linked to demands for compliance. This is probably because demand for compliance often indicates the absence of patient involvement in making the decisions about medicine use and the prescription. Research also shows that concordance (shared decision-making) improves adherence. Patients who are more involved in treatment decisions are more likely to keep to the agreed medicine intake.

 

Does too much emphasis on ‘adherence’ encourage a passive patient instead of an active ‘patient as partner’?

Not necessarily. The concept of informed or ‘supported adherence’ (adherence supported by concordance) links adherence with an active, informed patient who takes part in shared decision-making with his/her health care professional (HCP)

 

How far is adherence a ‘two way street’?

In most cases, patients are free to decide whether to take medicines or not.  However, the Health Care Provider (HCP) has a responsibility to help ensure that the choice is an informed one.  Good policy supports informed patient choice, rather than ‘compliance’ as the desired outcome of discussions in medical consultations. If the patient decides to accept the prescription, then the aim is to facilitate appropriate adherence to the agreed recommendations to optimize benefits and reduce risk. Efforts to promote informed choice and supported adherence need to be ongoing and responsive to the patient’s experiences with the medication.

 

What should a supported adherence consultation be like?

Researchers have found that many people want to be involved in deciding what treatment they receive.  Policy emphasizes that for this to happen, it is necessary for HCPs to discuss treatment options with patients in a way that invites patients to become as involved as they want to be in decisions.  The patient should be encouraged to ask questions, share views, voice personal priorities and feel empowered to ask further questions.

 

What does this mean for the patient-HCP relationship?

It is recognized that supporting patients to be involved in decision-making requires a re-working of the traditional patient / doctor relationship. The traditional image of the passive patient, meekly following doctor’s orders has been replaced by the notion of an active and involved patient as a partner. Policy and research has described how patients are experts in their own life circumstances and are increasingly knowledgeable about their illness and treatment options.

 

This means that the assumption that the simple receipt of information from a HCP will result in changed behaviour and / or adherence to prescribed medications (and that this leads to better health outcomes) is changing along with the evolution of the patient-doctor relationship.

 

What does this mean for skills of HCPs?

HCPs need to work alongside patients to ensure that patients can make informed decisions about their health. Shared decision-making requires HCPs to engage with patients as partners, taking into account their priorities and concerns. Research shows that this includes listening effectively to patients, and respecting diversity and patient beliefs in order to reach a shared agreement about treatment wherever this is possible. From this perspective, the relationship between HCPs and patients with chronic conditions is a partnership, and lies at the heart of adherence.

 

Is adherence always a ‘good’ thing?

• it follows a process that allows patients to influence the decision making if they wish
• an appropriate choice of medicine is made by the prescriber, and
• there is room for negotiation and ongoing support if problems arise.

 

According to research, unquestioning adherence may not always be a ‘good’ thing. A National Health Service document in the UK reported how adherence is appropriate and beneficial if:

 

The report describes that for some medicines, the need for total adherence may be questionable. Small deviations in adherence may be more practical for the patient, if there are no adverse results, while other medicines need to be taken strictly as prescribed. This suggests that a better working definition of effective adherence might be: `The point below which the desired preventative or desired therapeutic result is unlikely to be achieved.’ⁱ This highlights the importance of differentiating in consulting discussions between guidelines (to keep within), and instructions (to be strictly adhered to).

 

How helpful is it to categorize patients as adherent or non-adherent?

It has been suggested that it may be better to see medicine use as a continuum from adequate adherence to inadequate adherence. The crucial point in the discussion about medicine use, is that it is made absolutely clear which type of medication is being prescribed and if there is potential for taking medication flexibly while gaining optimum benefit with minimum risk. If we see adherence as a continuum, it is unhelpful to categorize a patient as adherent or non-adherent. Also, this focuses on labeling the patient as a certain type, and often implies someone is a ‘bad patient’ or a ‘good patient’ when the patient is only one player in the patient-HCP relationship.

 

Do these adherence issues relate to other types of behaviours/lifestyle changes?

Yes. For example, shared decision-making is advocated because of its potential to improve adherence to constructive behavior change e.g. activity / exercise and nutritional intake / diet.

 

What support is there for patients to become more informed and involved in decisions?

Dr Linda Li, a research scientist at the Arthritis Research Centre of Canada, is developing a research-based program called “ANSWER”. The ANSWER decision aid tool aims to provide unbiased evidence-based facts that will better enable people with rheumatoid arthritis (RA) to make informed decisions. For example: the program will help individuals to choose between taking methotrexate (a Rheumatoid Arthritis treatment) and discussing alternative treatment options with their doctor.

 

For more information:

http://arthritis.rehab.med.ubc.ca

Contact: Charlene Yousefi 

 

Have you been conducting any relevant research at the Arthritis Research Centre?

Our collaborative team which includes members of the Consumer Advisory Board, the Canadian Arthritis Patient Alliance, and Joint Health, is currently undertaking an interview based study: “Early Inflammatory Arthritis Help-Seeking Experience 2 (ERAHSE-2)” which asks people with early RA to share stories of how they self-manage their symptoms, and how they seek help and make decisions about treatments. For more information:

Contact: Jenny Leese or contact Marketing & Communications at mc@arthritisresearch.ca
Twitter: @Arthritis_UBC