Uncertainty associated with MS: are you comfortable with it?
Is uncertainty a problem for you? Is this study’s findings consistent with your experiences? What do we do with this information?
This newsletter covers the issue of the inevitable uncertainty that people with MS have to face due to being diagnosed with MS and about how their disease is managed.
Is my diagnosis correct? If I delay starting treatment, will it have consequences? If I decide not to start with a high-efficacy DMT, will I become disabled? If I accept your advice and start with alemtuzumab, will I prevent the development of secondary progressive MS? What are the chances of developing severe side effects from my treatment? Will I find a life partner? Will I be able to complete my studies? Should I start a family? What if I have a relapse and become disabled? Will I be able to care for my children? How will MS impact on my ability to work? Will I develop MS-related cognitive problems? Will I be able to get a mortgage? What about life insurance? …………
These are just a few examples of some of the questions pwMS may ask themselves and their healthcare professionals (HCPs) when they are diagnosed with MS. Uncertainty about whether or not you will become physically disabled and/or develop cognitive impairment leads to psychological distress and anxiety. Or maybe I am wrong about this? I am aware that many recently diagnosed pwMS go into denial. In contrast, others do the opposite and overcompensate by spending a lot of time researching the disease to the point where it takes over their lives. In between these extremes is a large grey zone. Where do you fit on this spectrum? What about other MS-related symptoms, for example, fatigue, sexual dysfunction, depression, anxiety, bladder dysfunction, constipation, cognitive impairment, pain, …?
The cross-sectional study below tries to assess the uncertainty of pwMS who have RRMS. They use a generic uncertainty of illness scale to explore the issue of uncertainty. As the study subjects had relatively early MS and lowish levels of disability, the results may not apply to people with more advanced MS. However, it is interesting to look at the results as they highlight the scale of the problem.
As an HCP who spends most of his time managing pwMS, much must be done to address many aspects of uncertainty. Do you agree? Is uncertainty a problem for you? Is this study’s findings consistent with your experiences?
Addressing some of the issues raised in this study is a Herculean task. Where do we start? Does MS-Selfie increase or decrease uncertainty? I ask this because many newsletters aren’t definitive and ask rhetorical questions.
Paper
A multicenter study involving 204 adults with relapsing-remitting multiple sclerosis (RRMS) assessed the dimensionality and item characteristics of the Mishel-Uncertainty of Illness Scale (MUIS), a generic self-assessment tool. Mokken analysis identified two dimensions in the MUIS with an appropriate item and overall scale scalability after excluding nonclassifiable items. A refined 12-item MUIS, employing a grade response model, effectively discriminated uncertainty levels among RRMS patients (likelihood ratio test p-value = .03). These findings suggest the potential value of the 12-item MUIS as a reliable measure for assessing uncertainty associated with the course of illness in RRMS.
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General Disclaimer
Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Queen Mary University of London or Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.
Of course uncertainty is a big issue (once you've passed the denial phase).
Not only for the general issues mentioned, but also in very practical and concrete questions, that can be different for many patients.
For instance, at the moment I'm considering buying a new home. I'm looking for a house that I should be able to live in for some time, but I have no idea how my disability wil evolve. I don't know how much longer I will be able to work, so I don't know how much I can afford.
On a smaller scale: I want to meet with a friend, but I don't know how my fatigue will be. I don't want to make her come just for half an hour, but if I exhaust myself, I won't be functioning the next few days and my husband will have to do everything (for the x-th time).
These kind of things are just not something a neuro/nurse or any other third party can really help with. It's just an additional burden of having MS.
For a lot of the questions mentioned, I feel neuros evidently have a responsability to inform pwMS as best as possible. But they cannot offer certainty where there is none. Nor should they.
I get that neuros want to help, but I don't see how it's possible for neuros to solve 'the problem of uncertainty'?
Closed leading questions aren’t really that helpful other than a broad sense of what areas concern patients more - I wonder what people without MS would answer for some of them that are generic life questions like planning for the future ?!
MS is such a variable illness affecting people at different ages and with different intensities plus each individual has their own outlook, personality, support system and own specific vulnerabilities.
I think it would be much better if HCPs just asked about fears and hopes and how they could support the pwMS on a spiritual, psychological and practical level. But they don’t seem to have any time. Despite being diagnosed very young, no one professional has ever asked my son about his emotions, if he is scared or confused about what’s happening to him or how they could support him with that. I was astounded how his psychological health was of entirely no interest to anyone.
I work in palliative care and have often thought a palliative approach would be useful even at the start of an MS diagnosis. Holistic care, advance care planning discussions, support for the family and carers and a hope for the best but plan for the worst parallel planning concept.