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Experiences of multiple sclerosis patients with self-management of fatigue

a qualitative systematic review protocol

Leithead, Christine1,2; Bradshaw, Molly3; Salmond, Susan1,4; Dreker, Margaret Rush5

Author Information
doi: 10.11124/JBISRIR-2017-003986
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Multiple sclerosis (MS) is a disease of the central nervous system with devastating effects.1-3,5 The cause of MS is idiopathic; however, it is hypothesized to be a result of an auto-immune, inflammatory attack on the myelin coating of the nerves, the oligodendrocytes (which make myelin), and the nerve fibers.1 Research continues to explore potential genetic, immunologic, infectious, and environmental risk factors. For example, MS is more common in patients living in temperate climates, affects women more than men and is absent in isolated ethnic groups.2 The prevalence of MS is estimated at 2.3 million people globally and 450,000 people in the United States in 2014–2015.3-5 In a more recent and ongoing study, the prevalence in the United States nearly doubled in 2017 to about 1 million people living with MS.6

The onset of MS can occur at any age but most commonly presents in early adulthood.3-5 When symptoms initially present later in age, it is associated with a more severe prognosis.2,3 The symptoms classically associated with MS include fatigue, depression, focal muscle weakness, numbness, tingling, pain, disturbances of vision, bowel/bladder dysfunction, and gait.1-3,5,7-9 Maximizing quality of life requires an emphasis on symptom management. Of all the symptoms that affected individuals must cope with, fatigue is considered the most common and most debilitating symptom.10,11

Fatigue is experienced by about 80% of the MS population, according to the MS society.9 Previously, it was estimated that between 70% and 92% of the MS population experienced some type of fatigue.8,9 Fatigue can severely affect daily activities, social interaction, employment, socioeconomic status and quality of life.8-12 Fatigue presents as a lack of physical, emotional and cognitive energy, and motivation, and it is believed to be more profound than that experienced by individuals with other types of illnesses.9

Shapiro10 emphasizes the complexity of MS fatigue and suggests five distinct types: i) normal fatigue that may be managed with energy conservation and organization of daily activities; ii) “short-circuiting” fatigue that occurs with the firing of demyelinated nerves causing neuromuscular fatigue and weakness for which rest and cooling may be helpful; iii) deconditioning fatigue that may be responsive to exercise regimens; iv) fatigue associated with depression; and v) “lassitude” or “MS-related fatigue” that manifests as an overwhelming tiredness and may have a neurochemical etiology. Another approach to characterizing MS fatigue is primary and secondary fatigue, with primary symptoms arising from damage to the central nervous system and secondary fatigue precipitated by mood disorders, sleep disruption and medication to manage MS and related symptoms.12

Multiple sclerosis fatigue cannot and should not be treated the same as the fatigue that occurs in healthy people or those with other illnesses because it cannot be combated with a change in sleep or medications.8,9,12 It is necessary for patients, clinicians, caregivers and the patient's loved ones to understand the complexity of MS fatigue and tailor a multidimensional approach based on the individual's clinical status and particular experience with fatigue, personal qualities, preferences and lifestyle.8 Assisting individuals to develop self-management approaches to reduce the impact of fatigue on one's daily life is a priority in improving quality of life. This requires an awareness of factors contributing to fatigue, analyzing management strategies that have been effective for the individual, and education for the individual about possible beneficial interventions.8,9,12

Quantitative studies have been conducted looking at MS fatigue and patients experience. Yang et al.'s13 systematic review on pharmacological treatments for fatigue in MS patients concluded that there were few data supporting pharmacological efficacy with amantadine. Non-pharmacological approaches have been more effective in decreasing MS fatigue. Several quantitative systematic reviews examined the effectiveness of psycho-educational approaches in reducing MS fatigue.12,14,15 From these studies, cognitive behavioral therapy (CBT) was found to be the most effective in reducing the severity of fatigue. Other therapies were also useful, such as mindfulness-based therapy, relaxation, educational approaches (especially when structured as CBT).12-15 In all of these reviews, the impact of CBT was measured only in the short-term with no data on long-term efficacy. Another systematic review examined the non-pharmacological approach of energy conservation, which showed short-term benefits in reducing fatigue.16 Energy conservation was described in a qualitative systematic review as the act of delegating and discontinuing certain activities as a method to managing fatigue.8 Khan and Amatya's17 review examining rehabilitation in MS found strong evidence for exercise therapy improving strength and activity and for exercise-based educational programs reducing the severity of fatigue. Although Khan and Amatya17 reported evidence of the efficacy of psychological and symptom management programs, the strength of the evidence was low due to limited methodologically robust studies. Heine et al.'s18 systematic review of exercise therapy for fatigue in MS similarly found that exercise may reduce self-reported fatigue but captured some significant limitations. Most trials did not specifically include people who experienced fatigue, did not target therapy on fatigue, and did not use a validated measure of fatigue as the primary measurement of outcome.

There are limited qualitative reviews and research conducted examining MS fatigue through narrative. Researchers are asking for more qualitative reviews and research examining MS fatigue through the patients’ narrative perspective.19 Newton et al.20 highlighted that poor understanding of MS fatigue makes clinical management challenging. They noted that fatigue is often underestimated, and the significance of fatigue on daily life and treatment is taken too lightly by clinicians, specifically physiotherapists in this study. Examining the experience of MS fatigue for participants of an interactive fatigue management education program, Pétrin et al.8 collected data using qualitative interviews completed three weeks after taking the MS Interactive Fatigue Management Resource (MS INFoRm) and again three months after taking the MS INFoRm. Their findings revealed that fatigue was one of the most disabling symptoms and described it as being “weighed down with bricks” or “being caught in a fog.”8(p.781) Participants were aware of contributing factors to fatigue, such as poor sleep or heat, and had used energy conservation for managing fatigue. They described feeling empowered with the information provided, and many used experimentation of interventions to manage their fatigue. Stuifbergen and Rogers21 explored the experience of fatigue and strategies of self-care among persons with MS, similarly looking at understanding the experience, the antecedents to fatigue and self-care strategies to manage it.14 Fatigue was described as disabling, ever-present, and unrelenting with physical, emotional and cognitive manifestations. Capturing how the fatigue goes beyond typical fatigue, participants described it as severe and suffocating, resulting in energy impoverishment and absolute powerlessness. Contributing factors included lifestyle patterns (physical activity, nutrition, alcohol intake and level of rest), environmental factors (heat), and perceived stress. Strategies to manage fatigue included energy conservation, recharging efforts, enhancing resistance to fatigue and temperature control.21

Thus far, only one systematic qualitative review examined the experience of fatigue in neurological patients with MS.20 The review captured nine articles that included a total of 152 participants; however, there is no description supporting patient voice from the research articles used. The authors reported biopsychosocial experiences of pain in physical (empty of energy and strength with heavy limbs impacting physical functioning), cognitive (difficulty thinking, concentrating, memorizing), emotional (shame, depression, isolation, fear, worry) and social (loss of autonomy and independence, being misunderstood) realms. Temperature impacted the fatigue experience. Energy conservation and temperature control were strategies used to manage fatigue. This review was limited in articles because it focused on one type of reporting survey as well as physiotherapists.20

Other systematic reviews have been written but not specifically about fatigue. Loy et al.19 discussed patients’ perceived fatigue and how it relates to performance fatigability. Perceived fatigue was defined as the “subjective perception of reduced capacity”19(p.1) and performance fatigability was defined as a “decline in physical performance over time”.19(p.1) The researchers found that there is a significant relationship between the two but could not claim that they are the same.19 Another review discussed the possible pathophysiological effect of exercise on MS patients’ fatigue. This study found that exercise can help relieve fatigue through primary and secondary fatigue pathways in the body. The researchers also found that MS fatigue is complex and multidimensional.22 Lastly, a systematic review reported self-management in MS patients, but focused on depression, anxiety and the patients’ quality of life. The review found that self-management interventions had a positive effect on all three areas.23

In order to provide quality, patient-centered care for individuals experiencing MS fatigue, there is a need to better understand the phenomenon from the patient perspective in all patient care settings. Further evaluation of the newer studies available about the patient's experience with fatigue and self-managing fatigue in MS is necessary to update our options for patient-centered care. To this end, this qualitative systematic review will explore and synthesize evidence on the experience of fatigue among adult patients with MS. Specifically the review will describe how fatigue is experienced in individuals diagnosed with MS, describe the factors that influence or precipitate fatigue, and describe self-management approaches used to control and cope with the fatigue of MS. This information will better inform healthcare providers, stakeholders, and patients who then develop a patient-centered approach to managing and improving patient outcomes related to fatigue.

Inclusion criteria


The review will consider studies that include adult patients (age 18 and over) diagnosed with MS and experiencing fatigue, regardless of their participation in pharmacological interventions or non-pharmacological interventions.

Phenomena of interest

The review will consider studies investigating the perceptions, experiences and meaning of fatigue associated with MS, the factors contributing to fatigue and the self-management strategies used to control the fatigue in adults.


This systematic review will focus on studies that address MS fatigue among adults residing in the community and self-managing their MS fatigue regardless of culture, country of origin or degree of severity of the MS. Any MS patients residing in hospital-based care or residential inpatient care will not be included in this review.

Types of studies

This review will consider studies that focus on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and mixed methodology studies where the qualitative component yielded in-depth descriptions. In addition, case studies describing personal experiences of individuals with MS fatigue will be included.


Search strategy

A three-step search strategy will be used to find published and unpublished qualitative studies. The initial step consists of a limited search through MEDLINE and CINAHL using “multiple sclerosis and “fatigue as search terms. A second search will be performed with the identified key words and indexed terms across all databases included in the review. The final step will be to review the reference list of each study that meets inclusion criteria to identify any additional studies that should be included. Studies will be excluded if they have not been translated into English, but will not be limited by date of publication. A preliminary search strategy for MEDLINE is shown in Appendix I.

Information sources

The databases to be searched will include MEDLINE (Ovid), CINAHL, Science Direct, PsycINFO, Scopus and Cochrane Library.

The search for gray literature will include Virginia Henderson Nursing Library, ProQuest Dissertations and Theses Global, MedNar, Conference Proceedings Citation Index: Science Web of Science, and Conference Proceedings Citation Index: Social Sciences and Humanities: Web of Science.

A five-year hand search will be conducted in the following sources: International Journal of MS Care, Multiple Sclerosis and Related Disorders, and Annual European Committee for Treatment and Research in Multiple Sclerosis.

Study selection

After completing all searches, all identified citations will be collected and uploaded into EndNote (Clarivate Analytics, PA, USA) and duplicates will be removed. A Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram24 will be maintained throughout the process. Each article will go through a preliminary review based on title and abstract to exclude any articles not pertaining to this study. A secondary review will be completed after full text retrieval for any article that meets or potentially meets the inclusion criteria.

Assessment of methodological quality

After the search is completed, two reviewers will individually appraise retrieved qualitative studies for methodological quality prior to inclusion in the review. The standardized instrument, JBI Critical Appraisal Checklist for Qualitative Studies, will be used.25 As an initial screen, the first and second reviewer must both rate a “yes” to questions 2, 4, and 8 on the instrument in order for the study to be selected for inclusion. Those questions are: Q2: “Is there congruity between the research methodology and the research question or objectives?” Q4: “Is there congruity between the research methodology and the representation and data analysis?” and Q8: “Are participants, and their voices, adequately represented?” Studies that meet this initial screen will be collected for full appraisal. Any disagreements that arise between the two reviewers based on their individual reviews will be resolved either by discussion or with a third reviewer.

Data extraction

Qualitative data will be extracted from studies included in the review using the standardized data extraction tool from JBI System for the Unified Management, Assessment, and Review of Information (JBI SUMARI; JBI, Adelaide, Australia) by two independent reviewers. Initial extraction will include study data relevant to the phenomenon of interest, populations, study methods, and the patients’ views specific to the review question. Each reviewer will then extract findings for identified fatigue and the self-management of fatigue separately for each study. The data extracted will be the patient's perspective of fatigue and self-management of fatigue and will include the findings, and if present, relevant illustration for each finding. All findings and illustrations extracted will be verbatim. The reviewers will then assign a level of validity or credibility, such as unequivocal, credible, or unsupported evidence, to each finding. Any disagreements that may arise between the reviewers regarding information to be extracted will be resolved through discussion and/or with a third reviewer. Reviewers of primary studies will be contacted for missing information.

Data synthesis

Qualitative research findings will be pooled using JBI SUMARI. First, the rated findings will be aggregated into categories based on similarity in meaning. These categories will then be subjected to a meta-aggregation to create a single, comprehensive set of synthesized findings of MS patients’ experiences of fatigue and self-management strategies that can be used for evidence-based practice. The information from the participants in non-pharmacological interventions will be presented in its own section. The basis of information from the non-pharmacological intervention participants as well as the participants in pharmacological interventions will be aggregated together in the conclusions.

Assessing confidence in the findings

In order to assess for confidence and credibility, the studies that were synthesized will be further assessed based on the answers from the JBI Critical Appraisal Checklist for Qualitative Studies.25 The answers to questions 2, 3, 4, 6 and 7 will help in evaluating the dependability of each study's information.25 Then, a Summary of Findings—including the title, population, phenomena of interest and context for each of the reviews assessed—will be used to create a ConQual score. Each finding will be presented with the overall ConQual score, type of research, dependability and credibility.


This systematic review is undertaken in partial fulfillment of the requirements for the Doctor of Nursing Practice degree program at Rutgers School of Nursing for CL.

Appendix I: Search strategy for PubMed


2. exp Multiple Sclerosis/ or exp multiple sclerosis, chronic progressive/or exp multiple sclerosis, relapsing-remitting/

3. 1 OR 2

4. exp fatigue/

5. exp muscle fatigue/

6. exp chronic fatigue/

7. physical fatigue OR mental fatigue OR central fatigue OR quality of life OR fatigue OR chronic fatigue OR fatigability OR fatigue impact OR muscle fatigue OR chronic fatigue syndrome OR sleep OR sleep disorder OR tiredness OR exhaustion OR lassitude OR exhaustion

8. Fatigue/ or

9. (tired$ or weariness or weary or exhaust$ or lacklustre or astheni$ or lethargic or languidness or languor or lassitude or listlessness).mp.

10. ((lack or loss or lost) adj2 (energy or vigour or vigour)).mp.

11. 4 OR 5 OR 6 OR 7 OR 8 OR 9 OR 10

12. Self-management OR Self management

13. Self-care OR self care

14. self-regulation OR self regulation

15. self-monitoring OR self monitoring

16. 12 OR 13 OR 14 OR 15

17. qualitative research/

18. (qualitative or ethnograph* or phenomenol* or ethnonurs* or grounded theor*OR purposive sample or hermeneutic* or heuristic* or semiotics or lived experience* or narrative* or life experiences or cluster sample or action research or observational method or content analysis or thematic analysis or constant comparative method or field stud* or theoretical sample or discourse analysis or focus group* or ethnological research or ethnomethodolog* or interview*).mp. [mp = title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier, synonyms]

19. (((“semi-structured” or semistructured or unstructured or informal or “in-depth” or indepth or “face-to-face” or structured or guide) adj3 (interview* or discussion* or questionnaire*)) or (focus group* or qualitative or ethnograph* or fieldwork or “field work” or “key informant”)).ti,ab. or interviews as topic/ or focus groups/ or narration/ or qualitative research/

20. 17 OR 18 OR 19

21. adult OR young adult OR aged OR middle Aged

22. 3 AND 11 AND 16 AND 20 AND 21


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Fatigue; fatigue experience; MS; multiple sclerosis; self-management

© 2020 Joanna Briggs Institute.