I think we have to ask the patients first!

It seems there's a great deal of prejudice (i personally know it from my experience in Turkey) about the drugs that we use for the treatment of RA among patients. There is a `beliefs about medicines` questionnaire that could work to tease it out.

There is a very large literature that has investigated non-adherence, and many causes have been shown to be important. Some of the most commonly identmost commonly idenfied causes are cognitive, such as forgetting to carry out the action (prospective memory) or forgetting what you're supposed to do (retrospective memory). For prospective memory issues, alarms and memory aids can be helpful, for retrospective issues, education can be helpful. However, other causes can also be important, such as not having the resources to get the medication, not having social support, choosing not to take the medication because of side-effects . The emerging trend for interventions is to have medication regimens designed around the needs/lifestyle of the patient, and to have interventions that are targetted to the non-adherence pattern for the specific patient.

First of all, the patient must be thoroughly educated about the disease at the first session. I found after 40 years of practice in the Middle East that it could be done if enough time is invested at the first visit, even with illiterate patients, if there is a good relationship between patient and doctor.

Comparisons can be used to get the message through. For example, most patients understand that a patient with diabetes or hypertension must be compliant with diet and drugs, and be monitored by his care giver more or less frequent. The same goes for chronic arthritis. Also, the bad prognosis in case of neglect can be mentioned without unduly frightening the patient.

I try to verify the compliance at every visit by having the patient bring his medications, ful l and empty packages, and say how he took every medicine.

Also, dispelling myths is important. Fears from taking medicines must be dispelled. Going after quack remedies also must be discouraged.

All this requires time in the beginning but it pays off.

Thanks for the question. At the heart of the solution is that the patient need to take ownnership of the responsibility of compliance with medication. Its like a social contract where responsibilty is shared and not a doctor talking to a sub-ordinate. Also getting the message to be re-inforced by the rheumatology nurse would be helpful.

We are currently busy with a project entailing creating a visual aid showing the actual tablets to enhance the clinicians task of explaining which tablet works for what , example methotrexate improves long term outcome and NSAID`s are for symptomatic relief. regards,

Mou Manie, Tygerberg Academic Hospital

Look into health literacy - there's a good paper just published in Arthritis Care and Research this month on exactly this issue. Caplan et al Arthritis Care & Research

Vol. 66, No. 4, April 2014, pp 508–514

Good luck ! Best wishes Jo

It is important to determine the causes of non-adherence. The causes can be side effects or adverse effects, not to remember to take medicine, bad taste, pain during administration. The key to improve the adherence is to determine the possible causes. We have developed a medication adherence scale for pediatric patients with FMF (MASIF) and we can determine the causes with this scale. You may validate this scale with rheumatoid arthritis patients.

A complex issues. Intentional or non intentional adherence.

Health Beliefs and perceived benefit - so knowledgeable expertise in providing true information that allows informed decision making. So patients should be enoucraged to speak to others on the same treatment - a buddy system. Principles of patient centred care helps the patient question and make varying treatment choices and take ownership of their management.

Further final point that need to be considered. A consistent recognition of patient centred approach and shared decision making with all members of the team - if one person in team erodes patients beliefs and empowerment this can adverse effect on adherence. Non intentional adherence means tailoring the treatment dosing to the patient's lifestyle and supportive electronic devices etc have shown this to be improved see the Flo System in UK using text reminders:

http://www.stokeccg.nhs.uk/simpletelehealth

Well, to begin with, most patients with RA are quite compliant with their medications; it is a chronic disease, and they learn what needs to be done so that they can feel and do better. On the other hand, patients with gout, for example, tend to be quite non-compliant, with some exceptions. There are reasons for this including gout being a different disease, health literacy, lack of understanding of their condition, etc. At any rate, as far as RA, I am not ready to believe that 90 percent of patients with RA are not compliant with their medications, as above-stated. This is certainly not my experience after practicing rheumatology for many years, and I am pretty sure most rheumatologists would agree with me. Granted, many patients won't ever accept going on a biologic agent out of fear of the potential side effects. However, this would represent maybe 20 percent of patients at the most. And in the interim, they are compliant with their oral medications for the most part. Just my 2 cents...

As well a health literacy, cultural differences can impact upon adherence. In some cultures, passive coping is more acceptable: family gather and provide care for the individual with RA, providing for all needs so that the individual can cope with daily life, albeit in pain. If the patient does not speak the native language, this compounds the problem, especially if the carers are also the interpreters (that's assuming the patient gets to clinic). There are also more basic reasons for non-adherence such as cost of treatment (depending on the country and healthcare systems). I agree that 90% non-adherence seems awfully high.

I would query whether non-adherence is really the right way to look at this in RA. There are diseases like TB, gout, hypertension, diabetes in which the medication has no effect noticeable by the patient and they have to be given good reasons to 'adhere'. That is particularly relevant for TB where other people are at risk. But in RA a drug is only worth giving if it produces an effect readily noticeable by the patient. That might take a couple of months so that has to be explained but if the patient has not had enough benefit to be motivated to carry on after three months then the drug is almost certainly best forgotten. (There are some exceptions like vitamin D supplements.) I suspect the bigger problem is not non-adherence but persistent prescription of drugs that the patient would be better off without. Maybe the patients are being sensible! I have never really thought of expecting a patient to 'adhere'. I always thought it was my job to recommend what I thought might be worth trying and offer my support services if the patient wanted to try it.

Your point Jonathan is a good one. However, patients with RA do not experience immediate benefit from their disease modifying effects and it can take up to three months before they see any benefit and may in the meantime experience side effects and hear information about potential risks of treatment that can result in a real challenge for them coming to terms with long term treatment.

Dear Mona,

Hope this 2 articles will answer your question.

Wish you all the best

2

Hi;

in my opinion, one of the major cause of non-adherance in RA patients is the undertreatment of patients' pain. the primary chief complain of these patients is pain in their joints and limbs. unfortunately, sometimes we overlooked the pain and keep our great notice on using DMARDs and preventive strategies. although this is the mainstay of treatment but we should keep in mind that in patient's view pain is the main problem. better management of the pain with pain killers, will improve patient's satisfaction from treatment regimens and help to improve compliance with other drugs.

good luck

90% non-compliance in RA patients sounds very high. I think it is more important to check which meds the RA patients are non-compliant with. Typically, RA patients are prescribed their DMARDs and pain-killers, maybe steroids. I always tell the patient which is the DMARD, the med that they must take to control their arthritis. They are usually very compliant with this. They may be non-compliant with their pain-killers (and sometimes the folate), which is OK with me. Also, the level of compliance may be linked with the duration of disease - the "older" patients are normally more compliant as they know the perils of a flare with non-compliance!

Agree with above,

The point Kourosh makes with regard to pain is something I think is incredibly valid as patients do not feel HPs are really taking into account the individual needs if they have failed to help alleviate pain and provide guidance, support to achieving effective pain relief . We may know that ultimately DMARDs should improve pain ref lief but a) we fail to explain this to the patient and b) the patient needs something that will relieve their pain promptly. It is the major factor that caused them to seek a medical opinion. We must do better if we are to work with the patient to achieve their ultimate aims.

Thank you Susan, You actually completed my note. establishing regular visit sessions with the patients will help to improve their compliance in all chronic conditions.

Hi

in my opinion one possibility is " the motivational interviewing"This clinical method,first described in 1983,works by activating patient's own motivation for change and adherence to treatment.

www.motivationalinterview.org

The therapeutic goals in treating RA is not primarily pain control; they are having pain because of their joint inflammation. The "treat to target" approach aims at inducing remission, or at least controlling or down-regulating inflammation the best we can. Once the underlying inflammatory process is well controlled, the pain would be a lot improved if not totally gone. I have seen patients chronically addicted to heavy narcotics for pain control without DMARDS who have developed horribly deformed joints over time with resulting severe disability because appropriate treatment of the underlying disease, the RA was totally neglected.

Interesting discussions like it! Yes Emillo I agree but our 'medical' solutions does not address what the patients see as the key issue and that we are not considering their current pain - because we are approaching it in a logical medical resolution. But achieving our T2T requires a whole person approach to understanding their anxieties, knowledge beliefs and needs at the beginning of their journey. Yes to Rosella too - motivational interviewinsg is key and we do not do enough of it for the right people who require this approach. The other important aspect is highlighted to that we need to explore in these papers what exactly is termed compliance as sometimes a knowledgeable patient who does not take their nsaids etc may be seen as non compliance but in fact is a matter of making an informed knowledgeable decision to step down their treatment

Yes, Susan, I think the issue of patient's understanding of what needs to be done makes a big difference. In the end, physicians can only recommend and suggest a certain therapeutic path to follow. We cannot (should not) force anybody to do much of anything. Different patients have different degrees of understanding, background knowledge, preferences, life experiences, etc. All these play a part in their final acceptance or not of a recommended treatment approach. The truth of the matter is that in medicine, we don't treat diseases but rather human patients (personalities) with medical problems.

I agree with Susan and Emilio

Great debate- have been keenly folowing it.

Our expereince in Kerala, India is somewhat diffrent. In our population which is well educated (in fact has 100% literacy), simple intervention in the form of two dedicated education sessions 4 weeks apart (the first one at the diagnosis) re RA and it's management resulted in significant levels of adherence not only to the  medications but also to the follow-ups.

Read the whole paper J Rheumatol 2013;40:8.

If a patient starts off in a collaboratory mode with the physician, then the patient  "buys in" to the treatment, and is more likely to comply because they own the plan. This is even more likely if goals are discussed at the onset of the relationship. When the goals are aligned, or at least discussed so that each party has an appreciation of what the other feels is important that is a good basis for decision making.  This would result in shared decision making.

Health literacy is necessary for the approach above

Its totally depend on the understanding of the illness by the patient. The consequences of non compliance leading to functional disabilities to be demonstrated with pictures and diagrams. Always patient should involve in a pain scale assesment which would give encouraging results. Safety of drugs over the devastating effects of disease should be convinced. I think those are the key issues.  

Patient Compliance /adherence to the medications is widely debated topic in the field of medicine/pharmacy, with the advent of electronic information on the medications and disease itself the patients have become more knowledgeable and raise many questions to the practitioners, even though we  answer many a questions , the level of satisfaction has been not 100 percent. 

The issue of medications adherence has been a tough and challenging issue due these varied issues, in order to increase the adherence the healthcare professional should continuously and consistently involve the patient and family education and the same time respecting their rights for treatment and refusal too.

Hope added some points to discussion. 

It looks like we have consensus on patient centred approach to achieving /compliance//concordance/adherence to medications - good communication and ensuring the  true informed patients involvement with HP to achieve a two way approach to the consultation.

Encouragement of patients who succeed in some area should not be underestimated. A few words of approval can spark a serious interest in learning more and making better progress.

Also, imagine that you yourself are taking methotrexate. With the GI problems it causes in many, would you not be inclined to postpone a dose as needed for important life events?

I have no research to support this. It is observational and experiential based on years of monitoring patient sites and having RA myself

Are you measuring degrees of non compliance in your research or does "hardly ever alter medication schedule" count as non-compliance?