The Problem of Adherence


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Asthma Control

The aim of asthma management is to achieve asthma control by reducing inflammation in the lung. Adherence is a means to an end, not an end in itself.

Research shows that patients consistently over-estimate how well their asthma is controlled.1,2 Patients will report that their asthma is well controlled even though they are experiencing symptoms such as night time waking. 9% of asthma deaths are in people classified as having mild asthma.3 Poor control does not necessarily mean non-adherence. Of the total population of people with asthma 3.6% of adults with asthma have severe refractory asthma and experience symptoms despite optimum medication and adherence.4

What is non-adherence?

Non-adherence is not a single thing. It takes a number of forms and occurs for a number of reasons.5,6 Here are four common forms of non-adherence:

1. Halving the recommended dose (constant but less)
2. Varying ICS according to symptoms (symptom directed)
3. Forgetting to take it or erratic use because of demands on time or difficult circumstances
4. Taking it incorrectly because of misunderstanding 

Patients are known to experiment with their medicines, so patterns of non-adherence or adherence may change over time.7 Non-adherence occur for one of two different reasons:

1. Intentional non-adherence
2. Unintentional non-adherence

The aim of this blog is to help professionals understand what patients are thinking and why their non-adherence can be intentional.

Why patients avoid asthma medicines

Patients do what they believe is in their own best interest. When patients intentionally ignore what you tell them, it is usually because they think you haven’t given good advice, and they have a better idea about their asthma than you do. Patients will also change their minds. Sometimes they will think that you have given them good advice while in the clinic, only to revise their opinion at a later date.  

Patients don’t come to the clinic like blank slate. They come with existing beliefs. In order to change those beliefs, it is first necessary to understand them. From my clinical experience, much of intentional non-adherence is motivated by an ‘I don’t like medicines’ belief.

There are two possible reasons for the ‘I don’t like medicines’ belief:

Powerful medicines unbalance the body. This belief is only partly linked to side effects. Patients have a concept of general health which can be achieved through a variety of ‘healthy activities’ (e.g. diet, exercise), and believe medicines have a harmful effect on general health. The more powerful the medicine, the more harmful the effect on general health.

People are used to taking medicines when they are ill. A course of antibiotics has a defined time course. People develop from personal experience the belief that drugs are helpful when you are ill but they are bad for you when you are well. This belief particularly applies to powerful drugs. Asthma drugs may be perceived as powerful because they are taken with an inhaler – because the method of use is unusual, it must be a powerful medicine. People are happy to take vitamins on a regular basis.  The problem is not the act of regular taking but the perception of what is being taken.

Patients differ as to what they perceive to be most powerful, and therefore best avoided when well. From my clinical experience, for the majority it is ICS, for others SABAs, and for others both ICS and SABAs are avoided. The consequence of medicine avoidance therefore differs – for example, gradual decline in lung function due to reduced ICS versus failure to medicate with a SABA during an exacerbation.

Medicines become less effective with use. This second belief is very common.  Patients worry that there isn’t a stronger medicine available if the medicine they are taking at the moment becomes ineffective. By avoiding the medicine, particularly when well, they have something in reserve. Patients commonly avoid ICS, but avoidance can take a variety of different forms. I recall a patient who avoided using a spacer so it would be available and more effective during an asthma attack.

The idea that medicines become less effective with time is based on the correct belief that some medicines (e.g. opioids) do indeed become less effective with time.  Patients sometimes report hearing of other patients whose asthma ‘got worse’ with time and attribute it to the use of medicines. Patients will often interpret a naturally occurring increase in asthma severity as being the result of medicine use. 

Patients will often be concerned that they are at the ceiling in terms of available doses – this is something they typically do not report by themselves. Patients can find it reassuring to know that there are plenty of stronger asthma medicines available. 

What to do about it

The relationship between the patient and health professional matters. Research shows that adherence is better if the patient has a good therapeutic relationship with the HCP8 and in particular if the patient feels respected.9 A review of several studies found that patients form a good therapeutic relationship with a psychotherapist if the therapist is perceived as “flexible, honest, respectful, trustworthy, confident, warm, interested, open, experienced, friendly and alert”.10

Some patients (irrespective of their background) will feel that the HCP is ‘looking down on me.’ This is particular important with young adults and people from a less well-off socio-economic background. A person is more likely to listen to what you say if they feel you respect them. In this context, respect has nothing to do with status. Patients feel they are respected when they are listened to.

If a patient says “I worry about taking my brown inhaler” and the reply is “Oh, you have nothing to worry about,” the reply invalidates what the patient has just said. An alternative response might be, “I can understand why you are worried. Can you tell me what worries you about it?”

Always validate what the patient believes, even if you are going to provide evidence later that they are wrong. Never deny a patient’s experience. Show that you understand and respect the patient’s perspective, rather than think they are silly. Explain things to the patient only after they have been able to express themselves.

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Listening to the patient’s agenda
As a health professional, you will have an agenda. The patient may also have an agenda. Addressing the patient’s agenda will help form the impression that you not only respect them but also that you are an expert. Sometimes patients aren’t aware of their agenda so it can be useful to help the patient prepare in advance. Some clinicians make an appointment telling the patient: “Please think of any questions you would like to ask me before you come, and I will try to answer them for you.” Find out what the patient wants from you first. Patients are less likely to remember what you have told them if you haven’t listened to their concerns first.

Finding out about the patient's beliefs 
Diagnose before treating! Listen before telling! If non-adherence is a possible problem, find out what the patient believes first. Ask the patient what they know about their asthma medicines and how they work. Take the approach that you are trying to find out the best way of managing their asthma, treating them as a unique person, and you want to know what they think. 

The concept of ‘patient activation’ has become popular in recent years.11 Patient activation refers to the extent that the patient is ‘activated’ to look after themselves.  Patients who are activated may be activated to look after themselves in several different ways, such as physical activity, balanced diet and not smoking. Some are better than others at managing asthma. So, whereas patient activation is generally a good thing, it isn’t always a good thing. Find out how activated your patient is. Find out what their beliefs are. If a patient is not activated, then it may be that they simply do what you say, and non-adherence, where it occurs is not intentional but due to other reasons. 

Some patients want to be actively involved in decision making, others simply like to be told. Adjust your management style to that of the patient.

What to say to patients

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Patients’ beliefs do not exist in isolation, but form a network of supporting attitudes and beliefs. For example, the idea that powerful medicines have nasty side effects is bolstered by media reports about steroids in athletes, ideas about how the body works, information from friends etc. It is difficult to change a belief simply by telling patients that they are wrong, because that belief will be supported by so many other beliefs.

For the non-adherent patient there is a trade-off between doing what is recommended versus all the other reasons for avoiding asthma medicines. Patients will make their own judgement – they won’t rely on your judgement! 

There are two strategies for helping the patient. 
 
1. Provide information about how medicines work –i.e. the standard asthma education that will be familiar to the HCP. 
2. Discuss with the patient their trade-off, and explore with the patient exactly what they are trying to achieve. 

It can produce a better outcome if the HCP takes the role of helping patients achieve the patient’s goals rather than focus on the rather abstract concept of asthma control. Remember, that if you ask patients about asthma control, they will not interpret the word control in the same way that you do!1 

More information about how to help patients change their beliefs and behaviour can be found under the heading of motivational interviewing. The following website gives useful information: https://www.rcn.org.uk/clinical-topics/supporting-behaviour-change/motivational-interviewing

The half the dose problem


  • A second reason for taking half the dose is dislike of medicines, as discussed earlier in this blog. It is worth bearing in mind that what often matters to the patient is the concept of taking less by halving the dose – rather than awareness of the amount or type of ICS taken.

Coping style and denial of asthma

People cope in many different ways. One overarching difference found by psychologists is whether coping is problem focused or emotion focused. To explain the difference, imagine a hypothetical challenge – such as an upcoming exam. One way of dealing with this challenge is to focus on the problem itself and revise. Another way is to focus on the emotion caused by the worry of the upcoming exam and do things to stop feeling upset – for example, going for a drink, complaining how unfair it is, or making a joke of it. 

People who have asthma who are problem focused generally do the best they can to manage their asthma. They may not always have the right strategy, but they are trying to solve a problem. 

People who have asthma who are emotion focused tend to ignore their asthma.  They are more likely to DNA and under-medicate simply because using an inhaler reminds them that they have asthma, and having asthma creates the negative emotions they are trying to avoid.

Most of this blog has focused on problem focused copers. This last section focuses on the emotion focused coper. The stigma of having asthma has very much reduced compared to where it was 30 years ago, but for some people it is still a stigma. For young people in particular, having asthma is inconsistent with the perfect body they would like to have. 

Emotion focused coping is more common in people who are depressed. Depression is a significant risk factor for asthma mortality in all age groups12,13 as well as being a risk factor for exacerbations.14 This is in part because depressed people are more likely to be emotion copers and therefore self-manage their asthma medicines less well, and in part, because depression is associated with systemic inflammation which can interact with inflammation in the lung.15 

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Emotion focused patients require careful management to prevent effective asthma management being perceived negatively. Things to think about with emotion focused copers:

  1. A simple routine is going to be easier to follow than a complex one. Emotion focused copers are likely to do worse with symptom directed ICS use compared to problem focused copers
  2. Coming to the asthma clinic, getting repeat prescriptions are all going to be perceived as more problematic by the emotion focused coper. Problems with appointment times, difficulties with parking or transport could have a greater impact on asthma care in these patients.
  3. Emotion focused copers will be particularly sensitive to emotional cues given by health professionals. This includes the receptionist at the clinic! The relationship aspect is particularly important in these patients.
  4. The emotion focused coper is more likely to believe that ‘I do not have asthma, but I sometimes have asthma attacks.’

Final thoughts

In some ways people with asthma are all alike. In some ways everyone is unique. The ability to get to know the patient as a person is probably the most effective tool in the toolkit of the heath professional.

References


  1. Katsaounou P, Odemyr M, Spranger O, Hyland ME, Kroegel C, Conde LG, Gore R, Menzella F, Ribas CD, Morais-Almeida M, Gasser M. Still Fighting for Breath: a patient survey of the challenges and impact of severe asthma. ERJ open research. 2018 Oct 1;4(4):00076-2018.
  2. Hyland ME. Asthma treatment needs: a comparison of patients' and health care professionals' perceptions. Clinical therapeutics. 2004 Dec 1;26(12):2141-52.
  3. Levy M, Andrews R, Buckingham R, Evans H, Francis C, Houston R, Lowe D, Nasser S, Paton J, Puri N, Stewart K. Why asthma still kills: the National Review of Asthma Deaths (NRAD). Royal College of Physcians; 2014 May 6.
  4. Hekking PP, Wener RR, Amelink M, Zwinderman AH, Bouvy ML, Bel EH. The prevalence of severe refractory asthma. Journal of Allergy and Clinical Immunology. 2015 Apr 1;135(4):896-902.
  5. Greaves, C., Hyland, M., Halpin, D. et al. Patterns of corticosteroid medication use: non-adherence can be effective in milder asthma. Prim Care Respir J 14, 99–105 (2005) 
  6. Farber HJ, Capra AM, Finkelstein JA, Lozano P, Quesenberry CP, Jensvold NG et al. Misunderstanding of asthma controller medications: association with nonadherence. J.Asthma 2003;40:17-25. 
  7. McHorney CA. The contribution of qualitative research to medication adherence. In Handbook of Qualitative Health Research for Evidence-Based Practice 2016 (pp. 473-494). Springer, New York, NY.
  8. Mundorf C, Shankar A, Peng T, Hassan A, Lichtveld MY. Therapeutic relationship and study adherence in a community health worker-led intervention. Journal of community health. 2017 Feb 1;42(1):21-9.
  9. D Bissell P. Compliance, concordance and respect for the patient's agenda. Prevention. 2019 Sep 27;10:00.
  10. Ackerman SJ, Hilsenroth MJ. A review of therapist characteristics and techniques positively impacting the therapeutic alliance. Clinical psychology review. 2003 Feb 1;23(1):1-33.
  11. Greene J, Hibbard JH. Why does patient activation matter? An examination of the relationships between patient activation and health-related outcomes. Journal of general internal medicine. 2012 May 1;27(5):520-6.
  12. Harrison B, Stephenson P, Mohan G, Nasser S. An ongoing confidential enquiry into asthma deaths in the Eastern region of the UK 2001-2003. Prim Care Respir J 2005;14:303-13.
  13. Mahdavian M, Power BH, Asghari S, Pike JC. Effects of Comorbidities on Asthma Hospitalization and Mortality Rates: A Systematic Review. Canadian respiratory journal. 2018;2018
  14. Ahmedani, Brian K et al. Examining the relationship between depression and asthma exacerbations in a prospective follow-up study. Psychosomatic medicine vol. 75,3 (2013): 305-10.
  15. Miller, Andrew H et al. Inflammation and its discontents: the role of cytokines in the pathophysiology of major depression. Biological psychiatry vol. 65,9 (2009): 732-41.

Professor Michael Hyland has received an honorarium from GSK for developing this article/content.

PM-GB-CPU-WCNT-190017 October 2019

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PM-GB-CAU-WCNT-190006
March 2019