Doctors and patients should discuss how they each define remission before making any treatment goals or decisions.
With advances in treatments for rheumatic and related conditions, having patients reach clinical remission is no longer a pipe dream for rheumatologists.
That all sounds great, but let’s go back a step. What does remission mean and how is it measured?
Unfortunately, there are no single definitions of remission for forms of rheumatic conditions such as ankylosing spondylitis, psoriatic arthritis and rheumatoid arthritis.
Opinions also differ about whether remission should be defined as no or low disease activity. Other definitions include being on medications but without symptoms, or being completely off all medications and stable for a sustained period.
At the 2023 Australian Rheumatology Association Annual Scientific Meeting in May, rheumatologist Professor Janet Pope shared her thoughts on the present and future challenges for rheumatoid arthritis (RA) therapy.
One of the challenges she noted was there are currently four accepted definitions used to determine sustained remission in people with rheumatoid arthritis (DAS28-ESR, Clinical Disease Activity Index (CDAI), Simplified Disease Activity Index (SDAI) and ACR/EULAR remission.)
Pope shared the finding from a 2019 study published in Rheumatology (Oxford) that showed more than half of RA patients never reach sustained clinical remission, that is, remission defined by one or more of the above indices and lasting for at least six months. Having this knowledge could influence how patients view and respond to their prognosis and affect their mental health.
One reason the confusion is problematic is that patients risk being overtreated when they could potentially do well on fewer medications or lower doses. Or their medications might be reduced too soon, resulting in symptom flares.
Therefore, rheumatologists tend to take patient-reported outcomes into account and accept low levels of disease activity – rather than relying on clinical definitions of remission alone – before deciding whether to adjust treatment for individuals.
How patients view remission
We asked our social media community (who live with autoimmune arthritis or related conditions) to share their thoughts on the idea of full remission and what it means to them. Interestingly, our response rate was much lower this time than to previous questions we’ve asked them. That may mean it’s a touchy subject to discuss, like diet and exercise. What was apparent was that some patients don’t even consider the possibility of remission.
“Remission means to me no symptoms and no meds. It’s a topic I don’t relate to and so I don’t have strong opinions about it.” — Andrea M
“Many long-term patients think they are too far gone for remission. For someone like me, who has severe joint damage and multiple replacements, the word remission just doesn’t equate. Achieving zero pain is virtually impossible, so remission has a different meaning for me – perhaps one where I can live the life I want to without limitations from my disease.” — Naomi C
“I’ve been told I’m maximally treated but treatment-resistant so remission is not even a glimmer on my horizon.” — Kym B
There’s no denying that periods of remission are possible for some patients and can last for years. However, they are unpredictable and may look different each time.
“For me, remission is when my symptoms are gone. My remissions are hard-won and fragile. One misstep and I am back in trouble. I need to stay focused on my treatments such as my meds, diet, supplements and therapies. I also need to keep inflammation low, which means staying in control of my other inflammatory health conditions. It is a lot of work. Every day. No days off.” — Penelope M
“I’ve been in remission for around five months and feel like I can function normally without limitations this time around. So maybe ‘remission’ was an overly optimistic description for me previously? I think if you’ve been unwell for a long time, you forget what normal feels like.” — Jo N
Are doctors and patients discussing remission?
From the feedback we received from patients, it appears the term “remission” isn’t routinely used during consultations. However, it depends on the people involved and their circumstances.
For example, those with milder symptoms or who have not had their condition long are generally more likely to at least achieve clinical remission, so it could be a goal they set with their rheumatologist.
Those who have had their condition since childhood may have gone into clinical remission in their teens only to have it return some years later. Others have never experienced full remission and are not likely to. Instead, they focus on ways to minimise their symptoms and may use broader terms such as “low disease activity” or “constantly improving”.
“I don’t know if I believe in remission for me. My rheumy and I aim to get the balance right between pain, medication and quality of life.” — Shirani W
Should patients be told they can achieve remission?
Pharmaceutical companies have started using the term “remission” in their advertising to health professionals. Some we have seen make it a strong selling point.
We understand the many benefits of aiming for low/no disease activity, such as less damage, more functionality, or improved finances from lower medical expenses or an increased ability to work. However, we’re concerned about how the term “remission” is used when discussing treatment options.
“I don’t believe in remission for autoimmune diseases. It annoys me and the term can be misused. Our symptoms are lessened by the medication our doctors prescribe to us. But as far as no longer having the disease, it’s not going to happen in my lifetime.” — Christine C
“I believe newly diagnosed people should be told about it but advised not to pin their hopes on it.” — Maz M
This is where it is important that doctors and patients discuss how they each define remission before making any treatment goals or decisions.
As we work towards remission, or at least remaining stable, tapering could be discussed if appropriate – but the likelihood of flares and resurgence should also be discussed and planned for. There’s no need to avoid the “R” word, but consider how and when it’s used.
Source
Einarsson JT et al (2019). Prevalence of sustained remission in rheumatoid arthritis: impact of criteria sets and disease duration, a Nationwide Study in Sweden. doi: 10.1093/rheumatology/key054.
Rosemary Ainley wrote this article on behalf of the CreakyJoints Australia team.
CreakyJoints Australia would like to thank Rheumatology Republic for this opportunity to share the patient voice within the Australian rheumatology community. creakyjoints.org.au
