Yesterday in response to my blog post on ‘slaying the Gambler’s dilemma‘ somebody asked ‘Is there really a place for watchful waiting in the modern management of MS?’.
Yes, there is.
Not all patients have active MS, i.e. relapses within the last 2 years and/or new or enhancing lesions on MRI in the preceding 12 months, and therefore would not be eligible for DMTs under NHS England Guidelines. The same applies for people who have progressive or more advanced MS; we see these patients in the hope of being able to offer them a treatment in the future. Rather than discharge these patients they need to be followed and monitored. This is called watchful waiting.
The following systematic review in the Cochrane library defines and reviews this treatment approach, albeit for other diseases.
Please note “Watchful waiting” is defined as an alternative approach in the medical management of certain diseases. Interestingly the authors’ equate “watchful waiting” with “active surveillance” and therein lies the rub. The problem with a lot of neurologists is that when it comes to MS “watchful waiting” is a passive, rather than an active, process. Active surveillance means interrogating the patient at fixed time points for MS disease activity and for this to happen pwMS will need to have MRI scans and systematic visits. At Barts-MS this happens annually. The annual visit should be supplemented with unscheduled visits if the pwMS has new complaints or self-monitoring raises concerns.
The conclusions of this review are telling:
….. the process of making the decision to choose watchful waiting is complex. Through the process patients and their significant others experience an array of emotions that often lead to uncertainty and anxiety. Once the decision is made patients must cope with the knowledge that they have a troubling diagnosis and make the necessary adjustments. An empathic, reassuring relationship with a healthcare practitioner eases the burden of this process. Healthcare providers need to recognize that not all patients are “at peace” with the decision of choosing watchful waiting. Uncertainty and fear may intensify during this time as well as feelings of stress and anxiety. Patients and their significant others often attempt to adapt in the best way they know how but the effectiveness of their coping strategies needs to be assessed. In addition, healthcare providers need to also be aware that with the increased anxiety and stress associated with watchful waiting, patients’ understanding of healthcare information and the ability to ask questions may be diminished. Both providers and patients benefit from open discussions related to the many aspects of uncertainty and fear related to making and living with the decision. Employing a shared decision-making model with regard to the management of the array of issues that comes from both making the decision and living with it is recommended. It appears that patients are very sensitive to recognizing when the care they are receiving lacks empathy. Communication that is open, empathic, and non-judgmental is essential. A willingness to discuss sensitive issues such as sexual function needs to be conveyed. Lastly, providers and their staff need to remain attentive to the importance of articulating aspects of the situation that are hopeful and optimistic as many patients, during their visits, take their cues regarding their health status from non-verbal and verbal interactions …..
Rittenmeyer et al. The experience of adults who choose watchful waiting or active surveillance as an approach to medical treatment: a qualitative systematic review. JBI Database System Rev Implement Rep. 2016 Feb;14(2):174-255. doi: 10.11124/jbisrir-2016-2270.
OBJECTIVES: This systematic review sought to: Identify and synthesize the best available international evidence on the experience of adults who choose watchful waiting or active surveillance as an approach to medical treatment. To this end the questions addressed in this review were:
RESULTS: A total of 16 studies, critically appraised by two independent reviewers and deemed to be of high quality, were included in the final review. One study was excluded after appraisal. One hundred and fifty-five findings from the 16 studies were extracted into 10 categories and then into three synthesized findings. The synthesized findings explicated:
Rittenmeyer et al. The experience of adults who choose watchful waiting or active surveillance as an approach to medical treatment: a qualitative systematic review. JBI Database System Rev Implement Rep. 2016 Feb;14(2):174-255. doi: 10.11124/jbisrir-2016-2270.
BACKGROUND: “Watchful waiting” or “active surveillance” is an alternative approach in the medical management of certain diseases. Most often considered appropriate as an approach to treatment for low-risk prostate cancer, it is also found in the literature in breast cancer surveillance, urinary lithiasis, lymphocytic leukemia, depression and small renal tumors.
OBJECTIVES: This systematic review sought to: Identify and synthesize the best available international evidence on the experience of adults who choose watchful waiting or active surveillance as an approach to medical treatment. To this end the questions addressed in this review were:
1. How do patients who have chosen watchful waiting or active surveillance describe the process of coming to the decision?
2. What were the factors that influenced their decision to choose?
3. How do patients who have chosen watchful waiting or active surveillance describe the experience?
RESULTS: A total of 16 studies, critically appraised by two independent reviewers and deemed to be of high quality, were included in the final review. One study was excluded after appraisal. One hundred and fifty-five findings from the 16 studies were extracted into 10 categories and then into three synthesized findings. The synthesized findings explicated:
CONCLUSIONS: The synthesized findings of the review conclude that the process of making the decision to choose watchful waiting is complex. Through the process patients and their significant others experience an array of emotions that often lead to uncertainty and anxiety. Once the decision is made patients must cope with the knowledge that they have a troubling diagnosis and make the necessary adjustments. An empathic, reassuring relationship with a healthcare practitioner eases the burden of this process. Healthcare providers need to recognize that not all patients are “at peace” with the decision of choosing watchful waiting. Uncertainty and fear may intensify during this time as well as feelings of stress and anxiety. Patients and their significant others often attempt to adapt in the best way they know how but the effectiveness of their coping strategies needs to be assessed. In addition, healthcare providers need to also be aware that with the increased anxiety and stress associated with watchful waiting, patients’ understanding of healthcare information and the ability to ask questions may be diminished. Both providers and patients benefit from open discussions related to the many aspects of uncertainty and fear related to making and living with the decision. Employing a shared decision-making model with regard to the management of the array of issues that comes from both making the decision and living with it is recommended. It appears that patients are very sensitive to recognizing when the care they are receiving lacks empathy. Communication that is open, empathic, and non-judgmental is essential. A willingness to discuss sensitive issues such as sexual function needs to be conveyed. Lastly, providers and their staff need to remain attentive to the importance of articulating aspects of the situation that are hopeful and optimistic as many patients, during their visits, take their cues regarding their health status from non-verbal and verbal interactions. Future studies should investigate.
CoI: I am a neurologist who looks after pwMS
Would you add neurofilaments to the monitoring requirements?
We doi believe
If MRI is unreliable to confirm activity in the last couple of years why would somebody have to watch and wait when a drug may help what is going on somewhere in the background?