Patients have the right to know about the risks and benefits of treatment. In addition, informed and empowered patients may be more adherent.
Many practitioners find it helpful to make the distinction between common side effects which may be a nuisance but are mostly transient, and dangerous side effects which should trigger immediate action by the patient. However, there is no point in burdening patients with a list of everything that can possibly go wrong with their treatments. For one thing, there is a very low limit to the amount of information anyone can take in during a medical consultation, especially when they are upset or anxious. For another, it is vital to maintain a proper balance between the actual benefits and risks of life-preserving treatment.
Other issues can be left to future consultations, or addressed in general terms, by stressing that if people notice unexpected changes or new symptoms or problems, they should get in touch promptly. If they think that a problem is due to the drug, even if they are wrong, you need to know about it.
BARIGYE: Communication of side effects needs to be done in the context of peoples perception of ARVs. This can be a challenge and often requires time. An example is that some patients may not have a clear understanding of risk and so if you suggest a possible side effect they assume that everybody is expected to get it. I emphasize the side effects that are severe and could be life threatening and those that are common and usually minor. I emphasize that not everybody gets the side effects and to consult me if he gets a suspicious complaint. I ask new patients to come back for review within two weeks.
Limits to communicating side effects to patients include:
- Doctors are very busy and have no time to explain every detail to patients. This is true in Uganda where very few centres are currently providing ARVs.
- Doctors prescribing ARVs need refresher courses about side effects as the number of medicines increases. It is quite common that we doctors actually do not know even the documented side effects.
MARTIN: In the pre-treatment phase counselling is targeted to obtain the commitment from the patient regarding the long-term benefits of treatment and the importance of adherence to life-long ARV treatment. During the pre-treatment session(s) side effects, early toxicities and long-term complications are outlined. Any co-existing morbidities are evaluated as they may impact on the above, e.g. alcoholic liver damage, bone marrow suppression.
The short term side effects related to specific regimens are described to the patient and treatment supporter (buddy). It is stressed that these side effects are usually minor, but must be reported, and will disappear with continued usage of the drugs. Symptomatic treatment can be prescribed, e.g. loperamide for diarrhoea and paracetamol for headache.
Toxicities are outlined along with the monitoring that is needed (liver enzymes, haemoglobin, etc).
Long-term side effects are outlined for individual regimens, and again the necessity for monitoring is described, e.g. lipodystrophy, elevated lipids.
The trick here is to fully inform patients without frightening them off the use of ARVs. This is further compounded by language issues, cultural issues and level of education of patients.
However, our experience has been that patients in resource-poor settings are as adherent as any patients elsewhere. It has always been amazing to me that when healthcare workers taking ARVs for PEP [post-exposure prophylaxis] have suffered side effects, approximately 50% of them discontinue their PEP prematurely.
ORRELL: All education is best done in the patients own language. I find I tell patients about two categories of adverse events severe or common ones I find dire, as a doctor, such as hepatitis or skin rashes and then the ones they may find dire for daily living (and perhaps adherence) such as nausea or peripheral neuropathy.
I tailor what I tell them to their drugs and leave an opening for them to return to the clinic (or call) whenever they have a concern, particularly in the first 2-3 months on therapy. I will usually only outline 3 or 4 key problems, no more, pre-treatment and then add in other issues, like symptoms of lactic acidosis, later. Most of our patients either have access to detailed written information to back up this consultation or are spending time pre-treatment with our counsellors who are supporting them in the education process.
Our take home point is that they must call their counsellor, nurse or doctor if they have any untoward effects, at any time. They should not pick out and stop one drug ever; if they have to stop treatment before getting hold of any of us, then stop it all.
PRABHU: Once we initiate patients on ARV, the key message is to come regularly for follow up. We keep open all channels of communication at all times and tell them they can go ahead and disturb us at any time of day or night, if they so please, and this relaxes and calms them. They feel reassured that they can have somebody to talk to. Patients most of the time find no difficulty in communicating with their doctor!
We talk to them in general terms about side effects and play it down. We understand that the patient has gone through a lot emotionally, mentally, financially and physically. So when they are about to start ARV, we dont want to alarm them that they might develop headaches, vomiting, fever, drug rashes, liver failure, anaemias and what not. At the same time, we dont want to be too complacent and reticent and tell them that nothings going to happen and everything is going to be all right.
Nonetheless, we do monitor for these things, including laboratory tests.
It is difficult balancing what the patients need to know against adding to their anxieties. Striking a proper balance and keeping a level head, not blowing things out of proportion, with an objective of treating and not mistreating, is important. We feel that a bit of functional overlay [psychosomatic illness] may develop especially in the case of AZT where myalgia and headaches appear after we start the drugs and just do not go away, no matter what we do.
The key message we try and instil in patients minds is communication: to tell us if anything out of the ordinary is happening to them and to let us decide together what to do next. To make them feel part of the decision making process.
We would tell them that ARV drugs may cause side effects just like any other drug and not to be alarmed. If they panic and stop their drugs then they must stop all their drugs together at one time and not to experiment one drug at a time! We stress this a number of times, since [even with fixed dose combinations] some patients may take only a single dose instead of BID dosing. We try to tell them the value of drug adherence. Patients are motivated enough to continue taking drugs.
RABKIN: I find that the most important thing is to convey a message of support, openness to hear about problems, and availability. Information about access how to reach me or my coverage is key. I also prefer very close follow-up (once or twice weekly) during ARV initiation, either in person or on the phone, where possible. This is the period when patients are learning how to take the medicines and setting habits for the future. The first one or two months are also when many side effects present, and having consistent access to care providers can be very reassuring.
Patients need to understand that I think the benefits of treatment outweigh the risks and different patients need this information in different ways. Some want numbers and percentages, but most dont. The other helpful thing, I find, is to make sure they understand the distinction between immediate and chronic risks. Of course, patients need to know about the most common risks (e.g. rash with nevirapine) and the most dangerous risks (e.g. hypersensitivity with abacavir) and I find this distinction most common versus most dangerous to be helpful.
Metaphors and using examples from the patients own life are useful. (We hope for the best but plan for the worst, Buying flood insurance doesnt mean the waters will rise, Trust in Allah but tie your camel, etc.) Also, I never have these conversations once. ARV initiation is almost never an emergency and I like to do my preparatory ARV counselling over several visits and, if possible, with several different people. Peer educators can be enormously helpful. And for literate patients, written information can provide them with a way to review the topic at home, once they have left the clinic.
WILSON: Essentially, any medication can cause adverse effects, but in HIV medicine the worrisome ones are co-trimoxazole, isoniazid and some of the antiretrovirals. To me the side effects associated with ARVs are by far the most important, as stopping and starting therapy can rapidly cause viral resistance. Starting ARVs is an anxious time for many patients, and I dont like to overload patients with too much information about possible adverse events.
Before starting ARVs I need two things from my patients: a commitment to long-term therapy and monitoring and acceptance, in principle, that ARVs can make people feel sick but that the benefits can far outweigh the problems. Patients must be able to access care within 8 hours of beginning to feel unwell. They need to know about nevirapine allergy and that especially within the first six weeks any rash, fever, right upper quadrant pain or jaundice must be reported immediately to a doctor who knows about ARVs.
In South Africa an ongoing issue is trying to ensure that patients taking ARVs in under-served areas do have rapid access to informed medical care.