The Experience of Fatigue Across Long-Term Conditions: A Qualitative Meta-Synthesis

Whitehead, Lisa; Unahi, Kirstin; Burrell, Beverley; Crowe, Marie

doi:10.1016/j.jpainsymman.2016.02.013

Cited by 42 publications

(33 citation statements)

References 63 publications

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“…Although the scientific literature provides few qualitative assessments of PEM in ME/CFS patients, qualitative descriptions of chronic fatigue have been made in other health disorders. A metasynthesis of fatigue across several long-term conditions such as cancer and stroke, not including ME/CFS, produced some commonalities in the fatigue experience (14). For instance, participants described fatigue as unpredictable in occurrence, intensity, and duration and feeling a loss of control of the body.…”

Section: Introductionmentioning

confidence: 99%

Characterization of Post–exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

et al. 2020

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Background: Myalgic encephalomyelitis/chronic fatigue syndrome is characterized by persistent and disabling fatigue, exercise intolerance, cognitive difficulty, and musculoskeletal/joint pain. Post-exertional malaise is a worsening of these symptoms after a physical or mental exertion and is considered a central feature of the illness. Scant observations in the available literature provide qualitative assessments of post-exertional malaise in patients with myalgic encephalomyelitis/chronic fatigue syndrome. To enhance our understanding, a series of outpatient focus groups were convened. Methods: Nine focus groups totaling 43 patients who reported being diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome were held between November 2016 and August 2019. Focus groups queried post-exertional malaise in daily life and participants' retrospective memory of post-exertional malaise that followed an exercise provocation with a cardiopulmonary exercise test. Data analysis followed the grounded theory method to systematically code and categorize the data to find meaningful patterns. A qualitative software package was used to move text into categories during data coding. Results: A wide range of symptoms were attributed to exertion both in daily lives and following cardiopulmonary exercise testing. While three core symptoms emerged (exhaustion, cognitive difficulties, and neuromuscular complaints), participants' descriptions were notable for their unique individual variations. Of 18 participants who responded to questions centered around symptoms following a cardiopulmonary exercise test, 17 reported that symptoms started within 24 h and peaked in severity within 72 h following the cardiopulmonary exercise test. Patients described post-exertional malaise as interfering with their ability to lead a "normal" life. Conclusion: The experience of post-exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome varies greatly between individuals and leads to a diminished quality of life. myalgic encephalomyelitis/chronic fatigue syndrome Stussman et al. Characterization of Post-exertional Malaise patients describe post-exertional malaise as all-encompassing with symptoms affecting every part of the body, difficult to predict or manage, and requiring complete bedrest to fully or partially recover. Given the extensive variability in patients, further research identifying subtypes of post-exertional malaise could lead to better targeted therapeutic options.

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Section: Introductionmentioning

confidence: 99%

Characterization of Post–exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

et al. 2020

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“…2 Although prior studies have investigated fatigue in specific illnesses (e.g., acute myocardial infarction, cancer, and fibromyalgia), few studies have compared fatigue across chronic conditions. Only one previous study by Whitehead et al 3 performed in 2016 compared the experience of fatigue across chronic conditions. Just more than half of the participants in the studies included in this review were diagnosed with cancer.…”

Section: Introductionmentioning

confidence: 99%

A Qualitative Metasynthesis of the Experience of Fatigue Across Five Chronic Conditions

Jaime-Lara

Koons

Matura

et al. 2020

Journal of Pain and Symptom Management

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Context. Fatigue is a symptom reported by patients with a variety of chronic conditions. However, it is unclear whether fatigue is similar across conditions. Better understanding its nature could provide important clues regarding the mechanisms underlying fatigue and aid in developing more effective therapeutic interventions to decrease fatigue and improve quality of life. Objectives. To better understand the nature of fatigue, we performed a qualitative metasynthesis exploring patients' experiences of fatigue across five chronic noninfectious conditions: heart failure, multiple sclerosis, rheumatoid arthritis, chronic kidney disease, and chronic obstructive pulmonary disease. Methods. We identified 34 qualitative studies written in the last 10 years describing fatigue in patients with one of the aforementioned conditions using three databases (Embase, PubMed, and CINAHL). Studies with patient quotes describing fatigue were synthesized, integrated, and interpreted. Results. Across conditions, patients consistently described fatigue as persistent overwhelming tiredness, severe lack of energy, and physical weakness that worsened over time. Four common themes emerged: running out of batteries, a bad life, associated symptoms (e.g., sleep disturbance, impaired cognition, and depression), and feeling misunderstood by others, with a fear of not being believed or being perceived negatively. Conclusion. In adults with heart failure, multiple sclerosis, rheumatoid arthritis, chronic kidney disease, and chronic obstructive pulmonary disease, we found that fatigue was characterized by severe energy depletion, which had negative impacts on patients' lives and caused associated symptoms that exacerbated fatigue. Yet, fatigue is commonly misunderstood and inadequately acknowledged.

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“…Although previous qualitative research on CCRF provided valuable insights, the increasing number of new studies made it difficult for researchers and clinicians to appreciate which insights were most useful for further research or clinical practice. Thus far, qualitative reviews have performed comparative and aggregative analyses . In order to personalise treatment for CCRF, a more interpretative approach to analyse individual studies is needed.…”

Section: Introductionmentioning

confidence: 99%

Experiencing and responding to chronic cancer‐related fatigue: A meta‐ethnography of qualitative research

et al. 2019

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Objective One of the most prevalent and disrupting symptoms experienced by cancer patients is chronic cancer‐related fatigue (CCRF). A better understanding of the chronic nature of CCRF can provide valuable insights for theory and practice. The purpose of this meta‐ethnography was to derive an overarching interpretative narrative on patients' experiences and responses to CCRF. Methods We conducted a comprehensive systematic literature search in five databases (05‐03‐2018). In addition, papers from reference lists were retrieved. Two researchers independently screened the papers for eligibility and appraised quality (CASP‐criteria). We followed the seven phases of meta‐ethnography to extract, translate, and synthesise first‐order constructs (ie, patients' views) and second‐order constructs (ie, authors' views) from the selected studies into third‐order constructs (ie, new interpretations). Results Of the 1178 collected articles, 16 articles were included. Through synthesis, a new figure of six interrelated third‐order constructs was developed: (1) embodied experience entails the dominating presence of the body; (2) (mis)recognition includes lack of recognition of CCRF by patients, relatives, and health providers; (3) small horizon describes a resultant narrowed world; (4) role change encompasses adopting other life roles; (5) loss of self refers to the impact on one's identity; and (6) regaining one's footing describes the struggle against CCRF, adaptation to CCRF and finally acceptance of a “new normal with CCRF.” Conclusion A new embodiment figure of CCRF with social (eg, (mis)recognition), spatial (eg, small horizon) and temporal dimensions (eg, regaining one's footing) was developed. This figure can help professionals to recognise CCRF, inform patients, and personalise treatment.

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The Experience of Fatigue Across Long-Term Conditions: A Qualitative Meta-Synthesis

Cited by 42 publications

References 63 publications

Characterization of Post–exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Characterization of Post–exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

A Qualitative Metasynthesis of the Experience of Fatigue Across Five Chronic Conditions

Experiencing and responding to chronic cancer‐related fatigue: A meta‐ethnography of qualitative research

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