All About Remission
This is an opinion article by Michael Gill based on his own research and experience.
The conversation about remission for patients with serious chronic diseases like rheumatoid arthritis and lupus needs to change. Many rheumatologists talk about remission as if it is the goal of their treatment. Rheumatologists define remission as the absence of signs and symptoms of significant inflammatory disease. Many patients assume that remission is akin to being cured. Using the term ‘remission’ is loaded with bias and is, in my opinion, misleading to patients.In an atmosphere of stress and anxiety adding confusion is unnecessary.
From my point of view, being cured means that you do not have the disease any longer, that you do not need to take specific medications and that you can resume your life more-or-less as it was before the disease. Very few patients suffering moderate to severe lupus or rheumatoid arthritis ever reach this stage, probably way less than 1%. The European League Against Rheumatism (EULAR) defines clinical remission as having a swollen joint count of 1 or less, C-reactive protein (CRP) levels of 1 mg/dL or less and a global patient assessment of 1 or less.
General practitioners and specialists tend to consider remission as a professional goal. They like to talk to their peer group referring to the number of remissions they have achieved. In other words, it is similar to an in-profession success score. For these clinicians it is about reducing the level of disease activity, not curing the disease. For example, a clinician will say that sustained remission rates at week 106 were achieved for 24% of their patients on a particular biologic. This implies that for 24 patients out of 100 had a significant reduction in their symptoms one hundred and six weeks after diagnosis. Typically, “symptoms” are assessed as swollen joints, stiffness and pain.
What is usually not measured by clinicians are fatigue levels, flares, quality of life impacts, co-morbidities, drug-to-drug interactions and mental health. It is quite possible that a patient can have a large reduction in pain no longer requiring opioid use1 but still subject to great fatigue to the extent that they may not be able to return to work. From this patient’s perspective remission is a definitely not a cure. It is the mismatch between what the specialist is aiming for and the patient’s desire to return to something like a normal life that causes confusion. In a 2015 study2, 83% of patients experienced flares after stopping a biologic agent and subsequently relying only on prednisolone and methotrexate. So, from one view point the clinician is prescribing cheaper drugs to ‘control better’ the patient’s disease activity. From the patient’s point of view, the disease is still serious, still debilitating and they still have flares. An article in MedPage Today by Nancy Walsh3 writes that literature reviews indicate the more serious the disease the less likely is sustained remission. Furthermore, in six observational studies, sustained remission was typically 6 to 9 months, ranging from 38.1% to 7.9%. The older the patient and the longer the duration of the disease the less likely remission will be sustained. Her article indicated that a major finding across 4,000 studies examined was a lack of a clear definition for remission and for associated predictive factors.
The term “sustained” repeatedly surfaces across many studies. Most patients would assume that sustained means ‘lasting’. This is not the case as sustained usually refers to a fixed period such as 6 months or 12 months.
In joint decision making with the patient, the clinician should, in my view, avoid using the term ‘remission’ and instead use terms like ‘control’ and ‘symptom reduction’. Low disease activity is a more relevant and easier to understand target. As many patients may not be able to reach clinical remission and, as such, low disease activity as a target is more relevant from the perspective of an already stressed patient. What is important here is that clinicians need to incorporate the patient’s perspective and not just rely on clinical measures.
1 This comment completely disregards the process of withdrawal from opioids which can be very traumatic for some patients.
2 Huizinga TW et al. Clinical and radiographic outcomes at 2?years and the effect of tocilizumab discontinuation following sustained remission in the second and third year of the ACT-RAY study. Ann Rheum Dis2015; 74:35–43
3 Nancy Walsh, Sustained Remission in RA: What the Data Say; MedPage Today, August 31, 2016. --------------- ------------------------------------------------------------ --------------- ------------------------------------------------------------