Commentary: Fatigue and health-related quality of life in patients with multiple sclerosis

Fatigue is one of the most disabling symptoms common to a number of conditions such as multiple sclerosis (MS), long-COVID, myalgic encephalomyelitis, and cancer. It is a symptom that manifests as extreme tiredness often accompanied with low mood. It saps energy, removes motivation to engage meaningfully and purposefully, and has a major impact on the quality of life. Those who have, or experience, fatigue talk of an overwhelming feeling of exhaustion; it is a very different type of tiredness from what occurs after normal exertion or from doing daily tasks. It is as if the tank is left empty and drained, but one is left without the energy to refill it. As a symptom, fatigue can be all encompassing and overwhelming yet often accompanied by sleep disturbance. Patients also complain about the impact of fatigue on their capacity to think, on memory, and concentration. Fatigue is also one of those frustrating symptoms like pain, although easy to diagnose from patient’s self-report, difficult to objectively measure (Enoka et al., 2021). Its complexity and multidimensional nature presents challenges to clinicians seeking to support patients due to the underlying mechanisms remaining poorly understood (Newton et al., 2020).

Fatigue in MS is particularly disabling when coupled with the other ways this condition presents and is experienced. MS is a neurological condition with an unpredictable course that can lead to substantial disability. This, given the age of onset is often in young adulthood and disproportionally in women, can impact on independence, employment, career, family functioning, and daily living; making all especially challenging to navigate.

This observational descriptive cross-sectional study was undertaken to explore the relationship between fatigue and quality of life in a Saudi Arabian MS population ultimately to guide development of a nursing intervention. The authors draw on the health belief model a seminal framework first conceptualised in the 1950s by social psychologists working in the US public health service to help drive better compliance with preventative health programmes. This has undergone much adaptation over time, but most notably the addition of self-efficacy to the model by Janz and Becker (1984). What is less clear is the relationship between design and model as this study did not seek to examine perceived susceptibility or barriers to adoption of any behaviour change required to self-manage symptomology, unlike the study by Habibi et al. (2021) cited by the authors. That said they do state a clear objective is to develop a nursing intervention and offer some elements in their discussion that might be included or amenable for further investigation.

What is particularly valuable in this study is the authors’ use of commonly used instruments (Fatigue Severity Scale [FSS] and Health-Related Quality of Life [HRQOL]) with robust reliability and validity for use in MS and with other disease groups, ensuring findings can be compared across populations. This also increases the likelihood that the study might be included in future systematic reviews examining fatigue in MS populations. Yet possibly the most important contribution the paper offers is insight into the gender differences in the lived experience of MS in Saudi Arabia with women experiencing worse quality of life than men. Given these differences in terms of role functioning, emotional well-being, social functioning, pain, and fatigue-any future development of a nursing intervention may need to consider needs of women may be different from those of men, and tailor any regimen accordingly. Fatigue is a symptom, and MS a disease, where working with those living with the condition will offer valuable insights and help tailor any gender and culture-specific intervention that meets their needs. No mention was made in the original study design about public and patient involvement, but next steps are crying out for experts by experience to co-produce any intervention.

Biography

Annie Topping is a nurse, health-services researcher and educator whose primary research focus is on improving patient outcomes and experience of care delivery, particularly in cancer, chronic illness and workforce. She is Professor of Nursing at the University of Birmingham in partnership with University Hospital Birmingham NHS Foundation Trust where she supports nursing, midwifery and AHP research capacity and capability building across Birmingham and the wider West Midlands health community.