A Qualitative Metasynthesis of the Experience of Fatigue

1320 Journal of Pain and Symptom Management Vol. 59 No. 6 June 2020

Review Article

A Qualitative Metasynthesis of the Experience of Fatigue

Across Five Chronic Conditions
Rosario B. Jaime-Lara, PhD, FNP, RN, Brittany C. Koons, PhD, RN, Lea Ann Matura, PhD, RN, FAAN,Nancy A. Hodgson, PhD, RN, FAAN, and Barbara Riegel, PhD, RN, FAANNational Institute of Nursing Research (R.B.J.-L.), NIH, Bethesda, Maryland; and School of Nursing (B.C.K., L.A.M., N.A.H., B.R.),
University of Pennsylvania, Philadelphia, Pennsylvania, USA

Abstract
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. J Pain Symptom Manage 2020;59:1320e1343. Published by Elsevier Inc. on behalf of American

Academy of Hospice and Palliative Medicine. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/

licenses/by-nc-nd/4.0/).

Key Words

Fatigue, chronic kidney disease, chronic obstructive pulmonary disease, heart failure, multiple sclerosis, rheumatoid arthritis

Key MessageThis metasynthesis explored patients’ experiences

of fatigue in heart failure, multiple sclerosis, rheuma-toid arthritis, chronic kidney disease, and chronicobstructive pulmonary disease. Fatigue was

Address correspondence to: Rosario B. Jaime-Lara, PhD, FNP,RN, Division of Intramural Research, Sensory Science andMetabolism Unit (SenSMet), Biobehavioral Branch, NINR,

Published by Elsevier Inc. on behalf of American Academy ofHospice and Palliative Medicine. This is an open access articleunder the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).

characterized by severe energy depletion, was associ-ated with other symptoms, and misunderstanding offatigue by others decreased psychosocial well-being.Evaluating and managing fatigue must become a pri-ority as it affects physical and mental health.

NIH, DHHS, 1 Cloister Court, Building 60, Room 258, Be-thesda, MD 20892, USA. E-mail: [email protected]

Accepted for publication: December 9, 2019.

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Vol. 59 No. 6 June 2020 1321Fatigue Across Five Chronic Conditions

IntroductionFatigue is a commonly reported symptom across

chronic conditions that may occur with diagnosisor as a prodrome months or years before diag-nosis.1 A common definition of fatigue is an over-whelming feeling of sustained exhaustion that isdebilitating and interferes with an individual’s abil-ity to function and perform activities.2 Typically, fa-tigue is dichotomized into acute or chronic fatigue,where chronic fatigue persists for six months orlonger.2

Although prior studies have investigated fatigue inspecific illnesses (e.g., acute myocardial infarction,cancer, and fibromyalgia), few studies have comparedfatigue across chronic conditions. Only one previousstudy by Whitehead et al.3 performed in 2016compared the experience of fatigue across chronicconditions. Just more than half of the participants inthe studies included in this review were diagnosedwith cancer. Our study builds on the review by White-head et al. by including studies published after 2016and focusing on noncancer-related fatigue. Werecently conducted a systematic review of the quantita-tive literature on fatigue to describe and compare bio-logical mediators of fatigue in five noninfectiouschronic illnesses: heart failure (HF), multiple sclerosis(MS),4 rheumatoid arthritis (RA), chronic kidney dis-ease (CKD), and chronic obstructive pulmonary dis-ease (COPD).5 It was clear from that review that thedefinition and measures of fatigue varied acrossstudies, and it was unclear whether fatigue is experi-enced in the same manner across chronic illnesses.Thus, in the present metasynthesis, we explored thequalitative experience of fatigue across these sameconditions.

Gaining insight into the experience of fatigue inmultiple chronic conditions can contribute to betterunderstanding of this symptom, aid in improving fa-tigue management, and ultimately increase qualityof life (QoL) for people with various chronic condi-tions. The World Health Organization defines QoLas a person’s perception of their position in life inthe context of the culture and value systems in whichthey live and in relation to their goals, expectations,standards, and concerns.6 Better understanding pa-tients’ experience of fatigue can help in successfullyevaluating and managing their goals, expectations,standards, or concerns to improve the lives of peopleliving with fatigue. With this goal in mind, the pur-pose of this qualitative metasynthesis was to explorethe experiences of fatigue in chronically ill adultsliving with HF, MS, RA, CKD, or COPD to expandour understanding of fatigue, with the ultimate goalof improving the evaluation and management offatigue.

MethodsWe performed a metasynthesis of qualitative

research using the qualitative metasynthesis methodsproposed by Sandelowski and Barroso.7e9 We inte-grated, synthesized, and interpreted qualitative de-scriptions of fatigue across five chronically ill patientpopulations (HF, MS, RA, CKD, and COPD).9 Thesefive conditions were chosen as they are all chronicnoninfectious conditions known to be associatedwith fatigue.

Search StrategyWorking with biomedical library specialists, three

databases (Embase, PubMed, and CINAHL) weresearched to identify qualitative studies of fatigue ineach individual chronic condition. These databaseswere used to replicate the approach we used in thequantitative review. Both electronic and manualsearching methods were used. Only articles with pri-mary data (i.e., patient quote(s)) were considered. In-clusion criteria were qualitative or mixed-methodstudies of adults (19 years of age or older) written inEnglish and published in the decade between 2008and 2018 except for Embase, where the search func-tion is limited to five years. We ended the review inter-val at 2018 to provide time for synthesis andinterpretation. This period was selected because alarge number of relevant studies was available for re-view; 2484 qualitative studies on fatigue were indexedin PubMed between 2008 and 2018 compared with835 indexed between 1998 and 2007.Exclusion criteria were editorials, letters, confer-

ence abstracts, and unpublished dissertations. In addi-tion, studies that did not provide or report at least oneillustrative quote describing patients’ experience of fa-tigue were excluded. All articles meeting inclusionand exclusion eligibility criteria were reviewed for con-tent and quality. In addition, references of each studywere reviewed to identify other relevant literature.With the help of our biomedical library specialists,we refined our search strategy until all relevant articleswere captured through the electronic search, and noadditional articles were identified in the hand search.At an early stage, we agreed on use of a reference man-ager tool, created shared documents, and developed asystem to track reasons for article exclusion. Wedecided how to manage the information and how todisplay the results. An example of a search statementand a summary of our inclusion exclusion criteria isshown in Table 1.

Analysis of FindingsWe followed the method of Sandelowski and Barro-

so10 method of integrating the analysis to facilitateidentification of data patterns and deviations.9

Table 1Search Strategy Used, With HF and PubMed Shown as an Example

Search ((narrativ* OR "Empirical Research"[Mesh] OR story OR stories OR phenomenolog* OR qualitative* OR ethnograph* OR ‘‘interview’’OR ‘‘thematic’’ OR ‘‘interpretive’’) AND (‘‘fatigue’’[Mesh] or fatigue) AND ("Heart Failure"[Mesh]OR "heart failure"[title]))

Filters: published in the last 10 years; English; adult: 19D yrsSummary of inclusion and exclusion criteria: Inclusion criteriadqualitative or mixed-method studies of adult populations written in English

and published between 2008 and 2018; exclusion criteriadeditorials, letters, conference abstracts, unpublished dissertations, and casestudies

HF ¼ heart failure.

1322 Vol. 59 No. 6 June 2020Jaime-Lara et al.

This method consists of six steps: conceiving the syn-thesis, examining the literature, appraising findings,classifying findings, synthesizing findings into meta-summaries, and synthesizing findings into ametasynthesis.

Conceiving the Synthesis, Examining the Literature, andAppraising Findings (Steps 1e3). Our goal was to bet-ter understand the nature of fatigue across fivechronic noninfectious conditions. Articles wereretrieved from the structured literature searches.Examining the literature involved careful review ofeach article, identifying methodological strengthsand flaws, and locating relevant results. Each authorled the review of studies focused on one of the fivechronic conditions (HF, MS, RA, CKD, and COPD),independently extracted data, and scored article qual-ity. Then, the entire team reviewed and discussed eacharticle during routine meetings. Any uncertaintyabout the study relevance, findings/data, and qualitywas discussed by the group.

To appraise our findings, we used the CriticalAppraisal Skills Program (CASP)11 quality criteria forqualitative research to evaluate individual articles.The CASP qualitative checklist includes 10 questionsand guided instructions to systematically assess eachstudy based on multiple criteria (e.g., validity, signifi-cance, and clarity). Each of the questions received ascore between zero and two; zero (cannot tell), one(no), and two (yes).12 Total scores range from 0 to20, with higher scores indicating better quality studies.The main purpose in quality appraisal was to explorewhether the studies contributed to our study purposeand to evaluate validity of the study results. Studieswere not excluded based on quality,13 but we discussedpoor quality studies to determine whether they influ-enced the overall results. Any uncertainty about studyquality was discussed as a group. The CASP score foreach individual study is reported in Table 2.

Classifying and Integrating Summaries Into Metasummariesand Metasyntheses (Steps 4e6). We classified the find-ings within each condition to systematically identifyshared concepts and themes. These results werethen integrated into metasummaries. Each author in-tegrated findings focused on one of the five chronic

conditions (HF, MS, RA, CKD, and COPD). Then,the entire team reviewed and discussed each of thefive metasummaries, noting similarities and differ-ences across the five chronic conditions.Our approach to synthesizing involved translating

findings of the qualitative studies into first-order, sec-ond-order (Table 3), and third-order themes.10 First-order themes examined patients’ descriptions of fa-tigue (i.e., direct patient quotes). Second-orderthemes referred to themes derived by the authors ofeach qualitative study (i.e., authors’ interpretation ofpatients’ descriptions of fatigue). Third-order themesreflected our interpretation and synthesis of all thequalitative studies. To identify first-order themes,quotes where participants described fatigue, lethargy,or reduced activity were extracted from the articles.To identify second-order themes, the authors’ para-phrases, conclusions, and observations were extractedfrom the results and discussion section of each study.The third order of themes (Table 4) involved

combining, synthesizing, and interpreting the first-order and second-order themes14 within and acrossthe five chronic conditions. At each stage of dataabstraction, we discussed the studies to achieveconsensus regarding the review and coding of data.Discrepancies were discussed by the team andresolved. Concepts and themes were identified andagreed on by all members of the team.

ResultsThe search of the three databases yielded a total of

289 articles for review (Fig. 1). After applying inclu-sion and exclusion criteria, we accepted eight articlesfor HF, seven articles for MS, seven articles for RA,seven articles for CKD, and five articles for COPDfor a total of 34 studies included in the synthesis. A to-tal of 865 participants were included across the studies(HF [n ¼ 306], MS [n ¼ 88], RA [n ¼ 148], CKD[n ¼ 185], and COPD [n ¼ 138]). Some studiesincluded numerous quotes, and some also organizedthe findings into broad themes.

Study CharacteristicsThe 34 articles included were published between

2008 and 2018. These studies were conducted in 12

Table 2Study Characteristics

Studies by Chronic Condition � Purpose Statement� Methods (Design; Sampling; Data Collection;Analysis; Theoretical Framework)

� CASP Score

� Study LocationdSetting� Sample Size (N )� Age

HFDickson et al.17 � To explore the meaning of depression and how

depressive symptoms affect self-care in an ethnicminority black population with HF

� Mixed-method concurrent nested design;purposive homogeneous sampling;semistructured interviews; thematic contentanalysis; situation-specific theory of HF self-care

� CASP score: 17

� U.S.dHF clinic and inpatient units ata large urban medical center

� N ¼ 30 (40% females, 60% males)� Mean age 59.63

Gwaltney et al.18 � To identify relevant and important concepts topatients with chronic HF and to understandbroadly the language that they use to describetheir experiences

� Design not named; secondary analysis ofinterviews from three separate studies;semistructured interview; content analysis; notheoretical framework specified

� CASP score: 10

� U.S.dsetting unclear� N ¼ 63 (40% females, 60% males)� Mean age 68.9, age range 38e90

Hagglund et al.15 � To illuminate the lived experience of fatigueamong elderly women with chronic HF

� Explorative and descriptive design; conveniencesampling; one-hour interviews; qualitative contentanalysis; no theoretical framework specified

� CASP score: 20

� Swedendhome setting� N ¼ 10 (all females)� Mean age 83, age range 73e89

Holden et al.20 � To apply a systems model to investigate patientwork performance to understand the nature andprevalence of barriers to self-care

� Mixed methods; convenience sampling;semistructured interviews; iterative analysis;patient work system model

� CASP score: 16

� U.S.dhome setting (surveys), clinicsetting (interviews)

� N ¼ 30 (43% females, 57% males)� Mean age 74, age range 65e86

Jones et al.23 � To explore the perceptions, experience, andmeaning of fatigue as a distressing symptom ofchronic HF

� Interpretive study design; purposive sampling;semistructured interviews; interpretive analysis;no theoretical framework specified

� CASP score: 15

� U.S.doutpatient cardiology andgeriatric clinics

� N ¼ 26 (31% females, 69% males)� Median age 61, age range 50e71

Jurgens et al.19 � To describe contextual factors related to symptomrecognition and response among eldershospitalized with decompensated HF

� Mixed methods; convenience sample; open-ended questions; content analysis; self-regulationmodel of illness

� CASP score: 18

� U.S.dhospital setting� N ¼ 77 (48% females, 52% males)� Mean age 75.9

Norberg et al.21 � To describe clients and occupational therapists’experiences of a home-based program focusingenergy conservation strategies for clients withchronic HF

� Single descriptive case study (qualitative andquantitative); consecutive sample; semistructuredinterviews; thematic analysis; energy conservation

� CASP score: 19

� Swedendhome setting� N ¼ 52 (40% females, 60% males)� Mean age 80, age range 56e92

Walsh et al.22 � To investigate the experiences of younger personsliving with HF

� Descriptive qualitative approach; purposivesampling; participants recruited from hospitalsand HF clinics; semistructured interviews;qualitative(descriptive) thematic analysis; notheoretical framework specified

� CASP score: 20

� U.S.dprivate hospital room or homesetting


MSAl-Sharman et al.24 � To explore the lived experiences of Jordanian

people with MS and the impact of the disease ontheir daily lives

� JordandJordan University of Science andTechnology

� N ¼ 16 (50% females, 50% males)

(Continued)


Table 2Continued

� Phenomenology; convenience sample; patientsrecruited from a research database; focus groups;content analysis; no theoretical frameworkspecified

� CASP score: 17

� Mean age 36, age range 29e57

Kayes et al.12 � To explore the barriers and facilitators toengagement in physical activity from theperspective of people with MS

� Qualitative descriptive; purposive sample;settingdface-to-face interviews in theparticipant’s home; modified grounded theory;no theoretical framework reported

� CASP score: 19

� New Zealanddhome setting� N ¼ 10 (70% females, 30% males)� Mean age 44, age range 34e53

Lohne et al.11 � To explore how persons suffering from MSexperience whether health care personnelmaintain and respect these patients’ humandignity

� Descriptive and exploratory design; conveniencesample; semistructured interviews; hermeneuticanalysis; phenomenologicaldhermeneuticapproach

� CASP score: 11

� Norwaydtwo rehabilitation institutions’patient rooms

� N ¼ 14 (57% females, 43% males)� Age range 39e66

Moriya and Kutsumi25 � To obtain descriptions of the experiences offatigue of people with MS, including experiencesrelated to their social life and interpersonalrelations

� Qualitative, exploratory, descriptive, andcontextual design; purposeful sampling;semistructured interviews; data analysis notstated; no theoretical framework reported

� CASP score: 18

� Japandsetting not given/described� N ¼ 9 (66% females, 34% males)� Mean age 42, age range 31e57

Newland et al.26 � To characterize symptoms experienced by peoplewith relapsing-remitting MS in patients’ ownwords

� Research design not stated; convenience sample;audiotaped focus groups; Krippendorff dataanalysis method; no theoretical frameworkreported

� CASP score: 17

� U.S.dmedical center familiar toparticipants


Barlow et al.27 � The perceived value and experience of thechronic disease self-management course forpeople with MS

� Qualitative study nested in a randomizedcontrolled trial; purposive sampling; telephoneinterviews; framework analysis

� Self-efficacy theory� CASP score: 10

� U.K.dtelephone� N ¼ 10 (70% females, 30% males)� Age range 30e60

Turpin et al.28 � To further our understanding of the experienceof living with MS fatigue by exploring how peoplebecame aware of and understood their MS fatigueand how they accommodate it in their daily lives

� Qualitative thematic analysis; purposive sampling;13 in-depth semistructured interviews; thematicanalysis

� CASP score: 18

� Australiadsetting not given/described� N ¼ 13 (85% females, 15% males)� Mean age 46, age range 24e67

RAConnolly et al.29 � To explore people with rheumatic diseases’

experiences of fatigue in work� A qualitative descriptive design was used withsemistructured interviews; purposive sampling;constant comparative method of data analysis; noframework specified

� CASP score: 18

� Irelanddprivate room university setting� N ¼ 18 (67% females, 33% males)� Mean age 36, age range 31e40

Feldthusen et al.30 � To describe how persons with RA of working ageexperience fatigue

� Descriptive qualitative; purposive sampling; focusgroup methodology using semistructuredinterview schedule; qualitative content analysis;no theoretical framework specified

� CASP score: 18

� Swedendhospital setting� N ¼ 25 (76% females, 24% males)� Mean age 46, age range 20e60

(Continued)


Table 2Continued

Minnock et al.31 � To explore the patient’s experiences andperceptions of fatigue after treatment with TNFi

� Descriptive, qualitative; purposive sampling;semistructured interviews with open-endedquestions; content analysis using qualitativeinductive logic; pragmatism as theoretical lens

� CASP score: 19

� Irelanddsetting not given/described� N ¼ 10 (60% females, 40% males)� Mean age 59, age range 44e75

Mortada et al.32 � To describe fatigue experience among EgyptianMuslim patients with rheumatic disease

� Prospective, monocentric, qualitative study;purposive sampling; semistructured interviews;conventional content analysis, inductivereasoning; grounded theory

� CASP score: 20

� Egyptdhospital setting� N ¼ 20 (80% females, 20% males)Mean age 40, age range 32e60

Nikolaus et al.33 � To explore the experience of fatigue in personswith RA

� Descriptive qualitative design using frameworkapproach; purposive sampling; hierarchicalinterview scheme, analysis combined inductiveand deductive elements; grounded in literature

� CASP score: 16

� The Netherlandsdhospital setting� N ¼ 31 (74% females, 26% males)� Mean age 58, age range 32e83

Repping-Wuts et al.34 � To explore the experience of fatigue from thepatient’s perspective

� Design not specified; semistructured interviews inclinic; purposive sampling; analysis in TheObserver software and consensus-based review;framework based on the literature

� CASP score: 18

� The Netherlandsdtelephone� N ¼ 29 (59% females, 41% males)� Mean age 59, age range 36e80

Thomsen et al.4 � To describe how patients with RA describe dailysedentary behavior

� Qualitative, explorative, descriptive design;purposive sampling; content analysis ofsemistructured interviews; hermeneuticalreflection

� CASP score: 17

� Denmarkdhome setting,8 office,5

rheumatology outpatient clinic2


CKDCox et al.36 � To describe the process and preliminary

qualitative development of a new symptom-basedpatient-reported outcome measure intended toassess hemodialysis treatment-related physicalsymptoms

� Qualitative study design; purposeful sampling;concept elicitation interviews/semistructuredinterviews; method of qualitative interpretivedescription

� CASP score: 17

� U.S.dfive dialysis clinics� N ¼ 50 (48% females, 52% males)� Mean age 54.6, age range 20e75

Kazemi et al.37 � Investigate the experiences of the socialinteraction of Iranian persons who are receivinghemodialysis

� Descriptive exploratory study; purposivesampling; semistructured interviews; thematicanalysis; no theoretical framework specified

� CASP score: 18

� Irandthree hemodialysis centers� N ¼ 21 (57% females, 43% males)� Mean age 42.2, age range 24e74

Monaro et al.38 � To describe the essence of the lived experience ofpatients and families in the early phase of long-term hemodialysis therapy

� Heideggerian hermeneutic phenomenologyapproach; nonprobability purposive sampling;semistructured interviews; Halling (2008)phenomenological analysis as a three stage

� CASP score: 17

� Australiaddialysis unit, in-center dialysis, ortelephone

� N ¼ 16 (63% females, 37% males)� Mean age 40.5, age range 33e84

Picariello et al.41 � To explore renal patients’ experience of fatigueacross the full spectrum of ESRD

� Qualitativedpluralist methodological approach;purposive sampling; semistructured interviews;inductive thematic analysis; critical realistapproachdcombination of realist ontology andinterpretivist epistemology

� CASP score: 18

� Englandd17 phone interviews and eightface-to-face interviews (home or privateroom at the university)

� N ¼ 25 (40% females, 60% males)� Mean age 60.84, age range 33e83

Pugh-Clarke et al.42 � To explore the patient symptom experience innon-dialysis-dependent CKD Stages 4 and 5 as the

� U.K.dsetting not described� N ¼ 18 (50% females, 50% males)

(Continued)


Table 2Continued

bases for the development of a symptomassessment instrument

� Qualitative; x sampling, semistructuredinterviews; thematic analysis; multiphasicinductive process

� CASP score: 18

� Mean age 65.08

Schipper et al.39 � Describe the experiences and needs of patientswith moderate-to-severe kidney damage

� Qualitative study; purposeful sampling; 31semistructured interviews followed by two focusgroups; thematic analysis; no theoreticalframework specified

� CASP score: 19

� The Netherlandsdsetting notgiven/described


Yngman-Uhlin et al.40 � Examine the experience of tiredness linked topoor sleep in patients on peritoneal dialysis

� Phenomenology; purposeful sample of patientson home dialysis; face-to-face interviews; thematicanalysis; phenomenological research design wasdeveloped for systematic investigation inpsychology by Giorgi (1985)

� CASP score: 16

� Swedendoutpatient visit11 or home setting3


COPDKouijzer et al.43 � To explore the patient’s perspective on the

impact of fatigue on their daily lives and ontreatment opportunities to tackle the burden offatigue

� Design not named; purposive sampling; inpatientand outpatient; in-depth, semistructured, face-to-face interviews conducted either in a privatehospital room or in the participant’s home;thematic analysis; no theoretical frameworkspecified

� CASP score: 20

� The Netherlandsdprivate hospital room(inpatient) or home setting (outpatient)

� N ¼ 20 (70% females, 30% males)� Median age 72 (inpatient), 63 (outpatient)

Paap et al.44 � To identify which domains of HRQOL are mostimportant from the COPD patient’s perspectiveand why

� Exploratory study; purposive samplingdrecruitedfrom two pulmonary clinics; semistructuredinterviews; method of data analysis not named; notheoretical framework specified

� CASP score: 19

� The Netherlandsdprivate hospital room� N ¼ 21 (38% females, 62% males)� Age range 52e84

Stridsman et al.45 � To describe people’s experience of fatigue in dailylife when living with moderate-to-very severeCOPD

� Qualitative research design; purposive samplingfrom obstructive lung disease in NorthernSweden; semistructured interviews; qualitativecontent analysis; no theoretical frameworkspecified

� CASP score: 19

� Swedendhome setting or medical facility� N ¼ 20 participants� Median age 73

Wortz et al.46 � To address gaps in the literature on self-management support by examining patients’responses to questions about goals, needs, andexpectations regarding self-management usingqualitative methods

� Design not named; sampling strategydrecruitedfrom a self-care management intervention study;in-depth interviews; inductive approach usinggrounded theory methods; the chronic caremodel

� CASP score: 19

� U.S.doutpatient setting� N ¼ 47 (47% females, 53% males)� Mean age 62.4

Shalit et al.47 � To identify factors that influence dietary intakepatterns in a stable COPD population attendingpulmonary rehabilitation programs

� Qualitative methods approach; sampling notspecifieddrecruited from outpatient/communitypulmonary rehabilitation programs;semistructured interviews; thematic analysis; notheoretical framework specified

� CASP score: 18

� Australiadsetting not given/described� N ¼ 30 (50% females, 50% males)� Age range 45e87

CASP ¼ Critical Appraisal Skills Program; HF ¼ heart failure; MS ¼ multiple sclerosis; RA ¼ rheumatoid arthritis; TNFi ¼ tumor necrosis factor inhibitor;CKD ¼ chronic kidney disease; ESRD ¼ end-stage renal disease; COPD ¼ chronic obstructive pulmonary disease; HRQOL ¼ health-related quality of life.



different countries, including the U.S. (n ¼ 9), Swe-den (n ¼ 5), The Netherlands (n ¼ 5), Australia(n ¼ 3), the U.K. (n ¼ 3), Ireland (n ¼ 2), Denmark(n ¼ 1), Iran (n ¼ 1), Jordan (n ¼ 1), New Zealand(n ¼ 1), Norway (n ¼ 1), Japan (n ¼ 1), and Egypt(n ¼ 1). Most of these studies were purely qualitativestudies (n ¼ 30), three were mixed-method studies,and one used a pluralist methodological approach.Qualitative methodologies included exploratory,descriptive, interpretive, and phenomenological ap-proaches. Sampling strategies were identified as pur-posive, convenience, and consecutive; two studies didnot name the sampling strategy. Sample sizes rangedfrom 10 to 77 participants. Study characteristics are re-ported in Table 2. Data were collected throughindividual semistructured interviews, conversationalinterviews, concept elicitation interviews, hierarchicalinterview schemes, in-depth interviews, telephone in-terviews, and focus groups. The data were analyzedwith thematic analysis, content analysis, iterative anal-ysis, interpretive methods, grounded theory methods,hermeneutic analysis, Krippendorff analysis, andframework analysis. Table 2 summarizes the character-istics of the 34 included articles.

MetasummariesThe experience of fatigue was examined in each in-

dividual condition. Each reviewer synthesized the find-ings related to the experience of fatigue in theirrespective chronically ill patient population.

Heart Failure. Eight articles met our inclusion criteriaand addressed fatigue in adults with HF. Most of thesearticles described general symptoms, but two articlesspecifically addressed fatigue.15,16 In general, fatiguewasdescribedprimarily as lethargy anda reduced abilityto engage in activity. Fatigue in HF was most commonlydescribed as a severe lack of energy15e22 (. you just don’thave the energy. you see that you should clean, but.) andfeebleness.15 Sleep was not sufficient to overcome thefatigue,15,23 and in some patients, a diurnal patternwas evident, with fatigue worse in the morning.15 Theseverity of fatigue resulted in difficulties with routinetasks and daily activities15,17e19,21e23 (I can’t sweep, mopor run the vacuum cleaner. I get totally exhausted ).18

Although fatigue affected multiple aspects of peopleliving with HF, patients reported that others did notunderstand the extent and debilitating nature of theirfatigue (It’s difficult when people of all ages look at me andlaugh and they don’t recognize that I have a health issue .it’s just, I’m a fat slob. That disturbs me. So I get depressed ),often pushing them to perform at an impossible level(The doctors want me to walk around. I just can’t do it).20e22

Symptoms of depression and breathlessness wereclosely related to fatigue.15,17,23 As one patient de-scribes, depression like fatigue deeply disrupted their

daily lives, When the blues come, I stay in bed and wait for itto pass. I don’t do anything . the pills don’t work; why takethem. sometimes it doesn’t pass..17 In addition, fatiguein HF was closely connected to breathlessness; seem-ingly easy activities like hair washing caused breathless-ness and fatigue (my entire body quite simply gives out .and I get short of breath . when I bend over like this).15

Multiple Sclerosis. Seven articles met inclusion criteriaand examined fatigue in patients with MS.4,11,12,24e28

Fatigue was described as feeling very tired andlethargic11,12,24e28 . the days are becoming a lot morelethargic, just spending more time in bed and less time up..12 Patients described how they felt fatigue thatwas similar to running out of batteries,25 feeling wipedout, and drained.26 Fatigue resulted in patients havingdifficulty with their daily activities, as evidenced bythis patient’s description: It was not very easy for me toclean my home at once without feeling fatigue . I mustdivide the work and take rest intervals in between. Evenwith rests I feel so tired.24 Others described having anattack of fatigue.28 One person’s fatigue was so debili-tating that they could not physically get up to go thebathroom, When I cannot get up to go to the bathroom, Iprepare diapers . getting up is torture.25

Participants also described feeling misunderstood,When I went to an art museum, I got tired and became un-able to walk. Because I looked so healthy, [others] didn’t quiteunderstand. I said ‘‘Could you lend me a hand?’’ But, it tookquite a bit [of time until I was understood]. I should havesaid ‘‘pain’’ rather than ‘‘fatigue’’, but I wasn’t under-stood.25 Another participant described, It’s just generalignorance, if they’re not aware of it or they haven’t heard ofthe fatigue involved . And they sort of say, ‘Oh yes, Iknow, I get so tired’ and I think, ‘How annoying. Youknow, no you don’t, YOU DON’T!28 Many also expressedfeeling misunderstood by their health care providers,admitting that they managed their fatigue withouthelp from their medical team, Even if I talk with the doc-tor, she/he tells me: ‘‘I wonder about that.’’ Lately, I don’teven mention [fatigue].25

The fatigue of MS is unpredictable, often is accom-panied by other symptoms, and profoundly affects allaspects of the patient’s life including work, home, andsocial interactions.12,24e26,28 One person said, The un-predictable fatigue, walking difficulties, and balance distur-bances are affecting my life tremendously.24 One mansaid, I was a very social man, and suddenly everythinghas changed. My social life has changed a lot.24 Othersexperienced cognitive issues with the fatigue: . thecognitive [fatigue] is just the most distressing ..26

Rheumatoid Arthritis. Seven articles containing de-scriptions of fatigue in people with RA wereincluded.4,29e34 Fatigue was described as omnipresent,uncontrollable, and overwhelming.4,31 Fatigue was


depicted as severe and prioritized as one of their mostdistressing symptoms, often as distressing or more dis-tressing than pain.4,24 Descriptions of fatigue exploredits profound multidimensional effects (e.g., encom-passing physical severity, emotional fatigue, and cogni-tive fatigue). Physical fatigue was described by apatient as I feel that my body is broken and every movementis as if I was moving a mountain.32 Another describedhow fatigue impacted their ability to socialize Everytime I’m going to go somewhere, I’d rather go to bed andsleep.30 Despite its severe impact, fatigue was notwell understood and/or largely ignored byclinicians.29,30,33

People with RA also described feeling misunder-stood and how this led to feelings of social isolationand depression.29e31,33 One participant describedhow their family and friends did not fully grasp theprofoundness of their fatigue, They can somehow under-stand [fatigue] intellectually, but you still know that theyhave not really understood what I’m talking about.35

Another described how their clinicians did not inquireabout fatigue or understand how to treat it, Nobody says‘‘what are you doing for the fatigue?’’ The health profes-sionals don’t understand how to treat it either.29

Pain and cognitive decline were among the mostcommon co-occurring symptom with fatigue in RA.Pain not only co-occurred but also exacerbated fatigue,Whenever I am in constant pain, I think that’s what makes mefeel tired.31 People with RA also associated fatigue with aloss of cognitive function, I can’t remember people’s namesor phone numbers. Like the password for my computer .and it’s just when I’m tired, it’s pure tiredness.29 Anothersymptom co-occurring with fatigue in RA was a sensoryexperience of heaviness, illustrated in these quotes:Mylegs become very heavy and I have to sit down, just doingnothing ..34 When I have fatigue, my body is wooden and Imove with difficulty.32 It feels like I am carrying two bucketsof water all the time.4 It feels like there’s porridge in my veinsinstead of blood.29

Chronic Kidney Disease. Seven articles examining fa-tigue in people with CKD met our inclusioncriteria.36e42 Fatigue was identified among the mostcommon and impactful symptoms of patients withmoderate-to-severe CKD.36e42 Fatigue was describedas a prolonged tiredness or lack of energy that severelyimpacted QoL.36,39 As one person described, [fatigue]for me is having sudden moments without having any energyand without being able to do anything ..39 Physical man-ifestations included muscle weakness (My muscles areweak. After dialysis, I feel sick and have muscle cramps, mylegs become weak .)37 and reduced mobility (there’sdishes in the sink because I didn’t have the energy to putthe dishes away yet .. If I’m folding laundry, I get really ex-hausted, so I have to stop and lay down). People with CKDalso described mental fatigue including despair, which

often triggered by their physical decline and making itdifficult for them to communicate and socialize withothers, It’s [illness] tiredness that caused by inactivitywhen your brain is muddled and your legs not working prop-erly and you’ve got cramps.42 Another patient describedtheir reduced interest in social behaviors because oftheir mental fatigue, sometimes, my friends call and Idon’t like to answer them. [Instead, I] ask my mother to tellthem I am not around. Because I am tired, weak, and sickand I have no patience for anybody.37

Another element that contributed to isolation andnegative emotions was the perception that their fa-tigue was misunderstood by both family and friends(I don’t think they really know the inside of the fatigue .I don’t think that emotionally-wise and mentally-wise theyknow how I feel ) and clinicians (The nephrologist is justlooking at you when you explain your fatigue. And the onlything he does, is telling you: ‘It doesn’t fit with your GFR:it doesn’t fit’).39 Another patient described not onlyfeeling misunderstood but also feeling ignored andjudged, People don’t realize the impact of having this dis-ease. They tend to ignore it and I think they see me as someonewho fakes it.39

Fatigue was accompanied by other symptoms,including pruritus, sleep disturbances, and cognitiveimpairments. People with CKD associated their fatiguewith sleep disturbances induced by pruritus,This itching. it’s worse at night. You’re trying to sleep with nothing else tothink about, and it just takes over.41 Cognitive impair-ments, an inability to focus, forgetfulness, and de-creases in attention span were also reported, My wifetells me I have to lay down because I don’t react as expectedand I cannot find the appropriate words, I lose myconcentration.42

Chronic Obstructive Pulmonary Disease. Five articles metinclusion criteria and explored the experience of fa-tigue in adults with COPD.43e47 Fatigue was describedas a severe chronic lack of energy43e45 (. you do nothave any spark or energy to do things) and totalexhaustion.43e45,47 Fatigue was associated with aninability to perform physical and social activities43e47

( you cannot do anything anymore).43 Overall, fatigue pro-foundly impacted both physical and mental aspects ofdaily life and contributed to a decreased QoL in pa-tients with COPD.People with COPD often experienced physical symp-

toms, including loss of appetite, sleep disturbances, andbreathlessness. As one person described, I know I’meating less. because I’m more tired. The ability to preparemeals was compromised (. you have to think ahead tohave food that can be prepared very quickly).47 People withCOPD commonly associated fatigue with sleep distur-bances. They coped with fatigue by lying down andresting,44 but no matter how much they slept, thefeeling of fatigue was always present (. fatigue is

Table 3Themes Associated With Fatigue

Authors (Yr) First-Order Themes (Participants’ Quotes) Second-Order Themes (Authors’ Interpretation)

HFDickson et al. (2013)17 When the blues come, I stay in bed and wait for it to

pass. I don’t do anything . the pills don’t work;why take them . sometimes it doesn’t pass .

Individuals described feeling overwhelmed withsadness and lacking energy that influenced theirADL

Gwaltney et al. (2012)18 I can’t sweep, mop or run the vacuum cleaner. I gettotally exhausted.

I’m not able to do a lot of things that I would like todo because I’m tired a lot.

Shortness of breath and tiredness were oftendescribed as being related to physical activities

Hagglund et al. (2008)15 It’s not like normal tiredness . everything goesnumb . it numbs my brain

You feel a little . well, bad at everything; you maywant to do this or that, but you just don’t have theenergy . you see that you should clean, but .

It’s hard to bend over.my entire body quite simplygives out . and I get short of breath . when Ibend over like this

I feel like I’m living as a half person because I don’thave energy for anything

Fatigue was experienced as loss of physical energy,leading to discrepancies between intention andcapacity. The will to reduce dependency on othersinvolved a daily struggle against fatigue

Holden et al. (2015)20 The doctors want me to walk around. I just can’t doit. And occasionally lately if I am sitting in thechair and I want to get up and do something I, Ijust don’t, just can’t get out of the chair

Quite honestly, just standing there getting the pillsout of the bottle is hard

Fatigue was characterized by constraints onfunctional, physical, and cognitive-perceptualability

Jones et al. (2012)23 I get tired. I get tired real fastI wake up in the morning, and I am not restedThey [i.e., activities] also have to be planned out andeverything. If I push the vacuum around today Ican’t wash dishes because I have to stand

The energy level again. You kind of have to not thinkabout it. If you think about it, it is kind of likehaving a time bomb in your chest

There are days like you are like a match. In themorning it is just like you want to go and you justkind of fade out really quick. I get up feeling reallygood but then you just burn out fast

Patients with HF emphasized the physical burden offatigue. They described the loss of strength andphysical changes brought by fatigue. For many,this included the need to sleep much earlier inthe day and needing to protect their time toconserve energy. Often, sleep made no differenceto their level of fatigue on waking

The emotional burden of fatigue manifested itself inpatients with HF as irritability. They talked ofputting on a front with others and thinking ofthemselves because having to communicate canalso be exhausting. Patients with HF wouldpurposely not talk to family or come across asbeing angry as a way of conserving emotionalenergy and getting people to leave them alone

Patients characterized the symptom as if fatiguewere a representation of life itself. Patientsunderstood the symptom as an inside experience,a manifestation of their HF disease, and a real-world representation of existence and uncertainyet ultimate mortality

Jurgens et al. (2009)19 It had gone on for a few months where I justcouldn’t do some of the physical things I used todo. Like, um, walk a mile . When I got theseshortness of breath attacks, I would attribute itmore to anxiety than to the heart. I was slowerthan my usual self. My feet were swollen, too, butthat’s been going on for years. This time myabdomen was swollen too

Fatigue is not a symptomI’m not tired, I’m just slowing down

Participants did not recognize or define theirphysical decline as valid symptoms

Norberg et al. (2017)21 Yes, slow down the pace, I said it’s not possible toslow down anymore, then I will sit completely still!

. things feel so different and varied despite the factthat you haven’t done anything special, and alsofor relatives to understand. And how you caninfluence yourself, how you can do that by simplemeans

Participants reported mild depression, severefatigue, and both increased and decreasedindependence in ADL. Participants foundbenefits of the program but doubted thepossibility of using it in practice

Walsh et al. (2018)22 It’s been very discouraging because I can’t do somethings for myself, like I have to ask for help andasking for help makes me feel like I’m useless

‘Can’t walk around. Wanna take them [kids] to thebeach. I’m so breathless by the time I get outthere. So, I have to hire people to do thoseactivities so they don’t lose their childhood. Youknow. And then I lose out on ..I’m sorry’

The emotional toll seemed to lead to fatigue andinsomnia issues

Fatigue led to decreased activity and social isolation

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Table 3Continued


It’s even hard for me to walk from the car to theentrance of a restaurant, let alone walk throughthe restaurant to the back of it to get to our tableor to get to the restroom. So I guess that’s part ofwhy I don’t even try to make friends because Idon’t want to deal with those things and have thatmake my depression even worse

MSAl-Sharman et al. (2018)24 It was very easy for me to clean my home at once

without feeling fatigue. However, with MS I mustdivide the work and take rest intervals in between.Even with rests I feel so tired

The unpredictable fatigue, walking difficulties, andbalance disturbances are affecting my lifetremendously

Most participants described that the fluctuatingnature of the disease and the unpredictablefatigue led to constant worrying and requiredplanning of their daily activities

Barlow et al. (2009)27 Basically, I have to pace myself. um, that I don’thave to overdo it, keep away from stress. I thinkkeeping away from stress is important. It’s just,obviously if I try to do something for too long,then I do lose strength because I just feelblooming awful. I tell you what has been a help, isthe new attitude of the MS Society magazinewhere they have sections on MS fatigue which is amajor problem because nobody understands itbecause it’s an extraordinary thing that justhappens

Relaxation, pacing, and goal setting wereparticularly valuable for managing fatigue

Kayes et al. (2011)12 For instance, you have a jar full of energy and that’syour energy for the day and you can both waste it,or whatever, and use it up. But the problem iseach day with MS that jar size varies and you canuse up all that energy that’s available on the day inone foul burst . and then, you know . like I’vedone once before . I did two or three days of alot of things with the girls in the school holidays,so we were very busy. We did two or three days noproblem and on the fourth day I was just out of it,gone, wasted. Your body just shuts you down

Using the analogy of a bottle of energy just till itsrun out, it’s just like a car. you run out of energy,that’s it. End of story. But, whether you canextend. the other thing is, with exercise you cansometimes enlarge that bottle through exercise.So you have a problem there of trying to enlargethe bottle through exercise but then not wantingto use up all the energy for the day coz you mighthave something else on the second half of the dayto use

It’s overwhelming . you don’t really care aboutanything but wanting to have a rest. You know,somebody could tell you really awful news and youjust don’t care cause you just wanna put your headdown and that’s how bad it feels sometimes .

Really heavy .. I feel as though I have got concreteblocks. That is how I feel all the time

Mainly, it’s the worry about the fatigue, if I overdo it,I get the fatigue and you know, sort of balancingthe two .. I balance my life around it, you know.We had a party Saturday night. I rested most ofSaturday afternoon, so that I could enjoy theevening

You do have to plan a little bit as you say because likeI am at the gym and so I will have to allow enoughenergy to get home, to be able to drive home, getinside, get the girls into bed. You know, there hasto be sort of enough energy before I crash in thecorner

A number of factors interact to influence thedecision to engage in physical activity behavioralong with emotional responses and fatigue

Participants described how balancing activity andfatigue often resulted in forfeiting activity in favorof other commitments

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Table 3Continued


Lohne et al. (2010)11 being inadequate, that’s one’s feeling with thisillness . because I have no control, I am soexhausted just when I walk around my house. soI am not capable of doing it . What I can nolonger do gives me continual sorrow . but I haveno energy, though I understand I must acceptthis, because I know how many . have to do that

suddenly the battery is empty. ‘It just comes anddisappears again . and some years ago . I sleptfor a long time, I slept until seven in the evening,and then I got up for an hour or so, went to bedagain and slept all night . well this lasted for halfa year or so . and I was exactly as tired when Iwoke up again .’

It’s all this waiting and the uncertainty, really, whichdrains off your energy . with MS you never knowwhat tomorrow will bring . so every morning Ihave started to test if I still can move my legs .and that’s really awful .

I have strong family resources behind me, and I ampretty strong myself, but all this drains mystrength, because I am fighting a chronic illness.

Fatigue was described as overwhelmingThe overall syntheses in this study were

comprehended as if patients’ experiences werelike living in between respect, humiliation, andpreservation of dignity. The patientparticipantsdas captured prisoners who had notyet given up the fightdalso appeared to bestrugglers and fighters

Moriya and Kutsumi (2010)25 The fatigue I have now is as if it’s stuck fast to mybody. It’s stuck to my skin and can’t be peeled off.It’s there all the time

I [look at my work schedule and] remember that Ineed to do this work at this time and then[confirm that] I’ll make this sort of movement. Ino longer try to do anything other than that. Theextent of fatigue that I feel is different comparedto when I act without thinking

You know, like a barrier perhaps. Like the feelingthat, even by challenging yourself, the challengeends up becoming negative and a source offatigue. I hate the fact that I act while alwaysworrying about it

I lose the feeling of wanting to do something.Moreover, if my body is weary, I completely losemy energy

Especially when I go out, I never show a tired face.[Others] ask me to travel with them, for example.But, I still have fatigue and so I refrain from goingbecause I know the fatigue [I will feel] when I go.I wonder, ‘Can I do this?’

I don’t show my friends the fatigue because it is toomuch trouble to explain in detail and, even if Itried, a healthy person wouldn’t understand

When I went to an art museum, I got tired andbecame unable to walk. Because I looked sohealthy, [others] didn’t quite understand. I said,‘Could you lend me a hand?’ But, it took quite abit [of time until I was understood]. I should havesaid ‘pain’ rather than ‘fatigue’, but I wasn’tunderstood

Fatigue was found to affect their lifestyle.Participants devised their way of coping withfatigue. Coping measures created other dilemmasleading to isolation

Participants described being frustrated because theirfatigue was not visible to others. Thus, they feltothers would not understand them, and theywould be called lazy

The participants also mentioned that such a lack ofcommon understanding, together with fatigue,caused the level of social interaction to decrease

Almost every participant was handling fatigueuniquely without receiving specialist help fromhealth care workers, such as physicians

Newland et al. (2012)26 When I’m tired, l can’t eat because I can go all dayand sleep . I get the salt-free crackers. I’ll get inthe bed, and I’ll muster up energy to go get that,put it in the bed with me, and this is how tired Iam. I’ll get a cracker, put it in my mouth, I’ll go tosleep, and when I wake up the cracker’s still there,and I’ll chew a little, go back to sleep, wake up,chew a little; the cracker’s been in my mouth thewhole time I’m sleeping. This is how I eat, becauseI’m just that tired

[I] cannot separate forgetting things and fatigue

Dealing with single symptoms and co-occurringsymptoms is particularly problematic for patientswith MS. Participants highlighted how symptomsmanifested and unexpectedly leads to disruptionof their daily lives and functional ability

Fatigue seemed to be related to cognitive loss, heatintolerance, and vision loss. There were newexpressions of fatigue mentioned in terms such asfeeling drained or wiped out

The combination of fatigue and cognitive lossespecially added to the frustration of theparticipants

Health care professionals did not fully appreciatethe impact of their fatigue and other symptoms

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Turpin et al. (2018)28 I had a pretty full-blown attack . it got to the pointwhere maybe I could stand up for two or threeminutes in a shower, but that was pushing it. Andthat was for about six weeks where I had thatfatigue. And then it gradually got better, but nevercompletely. I’ve always had this, where it’s affectedmy lifestyle since then

I feel guilty lying on the bed and having a rest. I justfeel guilty’ cause I just-there’s jobs that I should bedoing

I just knew that I would be pushing myself. Someweeks you can do it- and then other weeks you justcan’t- I’m learning. I haven’t been very good atthat. But I am learning. When you have a fewhospital stints, you learn

Probably it’s just general ignorance, if they’re notaware of it [fatigue] or they haven’t heard of thefatigue involved. And why would they know unlessthey’ve got somebody, maybe at home, thatcomplains of it too? And they sort of say, ‘Oh yes, Iknow, I get so tired’ and I think, ‘‘How annoying.You know, no you don’t, YOU DON’T!’’

If they understand the fatigue, and the MS thing- I’llbe like, ‘I’m just having a crap day’. They’re like,‘fine, no problem’. Whereas someone else will say,‘but why?’ and it’s like, ‘I don’t want to explain itagain’ . So, and in that case it’s like, ‘fine, I’llcome to something for a short time’

Because I think if people see me and they don’tunderstand [the MS fatigue] and I’m beingwithdrawn, they will just think I’m rude or they’llthink ‘oh she doesn’t like me’ or ‘she’s gotdepression, or they’ll think all the stuff about meor they’ll be offended

Participants reported that, because of MS fatigue,they made more mistakes, took longer tocomplete tasks, and found tasks physically and/orcognitively more difficult

Participants reported increased fatigue resultingfrom doing too much, potentially culminating inbeing bedbound for multiple days or beingadmitted to hospital

Frequently, participants commented on thedifficulty of helping others grasp the differencebetween ordinary tiredness and MS fatigue,because people generally thought in terms oftheir own experiences of tiredness. Participantstried to convey that its severity was quantitativelydifferent and was not the result of their choices,such as to stay up late. Participants mostcommonly attributed others’ lack ofunderstanding of the invisibility of fatigue. Theyalso discussed other people’s lack of awarenessand ignore regarding MS fatigue and associationsmade with other stigmatized conditions such aschronic fatigue

Participants often worried about how they wereperceived by others, especially in social situationsand with those outside their immediate circle.They feared they would appear stupid or as anuisance, be viewed as different from others orwithdrawn and rude, or be seen as the person whois always canceling

Some participants were reluctant to tell others MSfatigue was the cause of their behavior, becausethey thought they would not understand. Somefeared that others would believe they were usingMS fatigue as an excuse

Clinicians should consider these concepts whensupporting people with MS fatigue to understandthe effect of fatigue in their daily lives and usefatigue management strategies to make effectivelifestyle changes to accommodate it

RAConnolly et al. (2015)29 I might get up in the morning and I will not be

going anywhere because physically I will not beable to walkdI’m just too tired

I feel like there’s porridge in my veins instead ofblood. Everything is heavier and slowerdandyou’re constantly dragging yourself around- so Icall it porridge blood

It suddenly comes upon you. I’d be sitting at mydesk and literally nodding off. It just comes out ofthe blue

I try to remain upbeat but there are days that Iwould be down, purely because I’m just exhausted

the more mentally fatigued I get, the more mistakesI make

I can’t remember people’s names or phonenumbers. Like the password for my computer .and it’s just when I’m tired, it’s pure tiredness

They [colleagues] don’t understand the scale of thetiredness. A lot of people don’t realize- nobodyreally gets it

Nobody says ‘what are you doing for the fatigue?’The health professionals don’t understand how totreat it either

This study identified three themes: impact of fatigueon work demands; disclosure of disease andfatigue; work-based fatigue management strategies

Fatigue impacted cognition, physical abilities, andmood. Although this has been identified in otherstudies, the participants in this study alsodiscussed specific work tasks affected by fatigue

Participants discussed a lack of understanding offatigue from employers and colleagues whendisclosing their fatigue

Fatigue and pain affected productivity levels andabsenteeism

Feldthusen et al. (2013)30 It is like a tired diesel engine// . //you can get upto speed but it takes a lot more time than for aspirited petrol engine

There’s no energy left to learn, so of course thereare significant consequences if you are really,really exhausted

The analysis resulted in one theme: an intellectualand embodied understanding that sustainablephysical activity is important to handle fatigue.This included five categories describing barriersand facilitating factors for sustainable physicalactivity: mentally overcoming the fatigue to be

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Many times when you shall do stuff with friends,many times I have to call and cancel and say Icannot cope

Is it, God forbid, maybe a reduced level ofconsciousness or something that causes it then.That you are a bit lowered and therefore feel tiredand have difficulties to keep up, harder tocommit, it’s indeed scary

The thing is also to . screen your . acquaintancesand so, on people who take energy away from you

Every time I’m going to go somewhere, I’d rather goto bed and sleep

I need much more time to get engaged and I needlonger time to get enthusiastic about things

They can somehow understand [fatigue]intellectually, but you still know that they have notreally understood what I’m talking about

active, making exercise easy, reaching for balance,receiving support to be physically active anddealing with RA disease to be physically active

Participants described that physical activity wasimportant in overcoming fatigue, but this insightneeded to come from personal experience

Minnock et al. (2017)31 Before I got arthritis I did not suffer with fatigueYou know, never mind whether I’m capable of doingit or I’m not, I know I haven’t got the energy to doit

I don’t understand it, it . varies, it comes and goes.To me it’s just waves and waves of tiredness .extreme tiredness

I find it hard to complain [about fatigue] because Ifeel I should be able to cope

Depends how long it [fatigue] lasts before I woulddecide what I will say . no energy, no strength,can’t do nothing . can you do something to helpme?

There isn’t much they can do about that, they givetablets for pain but you know you can’t . [for]fatigue

Whenever I am in constant pain, I think that’s whatmakes me feel tired

Because of the joint problems . and sometimes Iwould stay up all night with the pain . mysleeping pattern was mixed up, and from that Ihad got some fatigue

The study identified four categories: experiencing adistinct, yet seldom discussed RA symptom;seeking an explanation for fatigue; being in anincapacitating state; and trying to manage

Fatigue led to lifestyle restrictions, and patients self-managed their fatigue in the absence ofprofessional care

Doctors and the health care team were excused fromattempting to help manage this challengingsymptom on the basis that nothing can beprescribed for fatigue

All patients associated fatigue with the presence ofboth acute and chronic pain, and most viewedfatigue as a feature of active disease. Thereduction in disease activity and the overallsymptom relief brought about by modern biologictherapies had contributed also to a reduction infatigue

Mortada et al. (2015)32 Fatigue just sticks me to the bedWhen I have fatigue, my body is wooden, and I movewith difficulty

Fatigue paralyzes meSometimes I feel that that I lose my concentrationwhen I have fatigue

Fatigue was described as a concept of overwhelmingphysical tiredness with consequences ondifficulties to move

Most fatigue was described as physical; however,some patients described a link with mentalfatigue/loss of cognitive functions

Nikolaus et al. (2010)33 Around quarter to 11 I start to yawn, and want to goto bed. Right, but that’s not the kind of tiredness Ifeel at 3 in the afternoon. (.) I don’t want to goto bed. Then it’s just sitting and being so tired youcan’t even put your cup down on the table

I have weeks in which I’m really tired for 3 or 4 days.And I have weeks that are fine . But it dependsof course on what you’re doing, what thecircumstances are; even the weather can have aneffect

I’m being oversensitive, becoming irritated morequickly, not being able to deal with things

Well, if you’re really tired, you’re just angry withyourself. That you’re tired again. You don’t wantto be, but you are

Undoubtedly, because you come to rest . rest is anatural phenomenon I think, which is good forhumans. So it [the fatigue] will undoubtedly havepositive aspects

They (people with RA) distinguished betweenmental and physical fatigue, fatigue with orwithout a prior reason (such as poor sleep orphysical activity), fatigue in combination with orwithout pain, with or without dizziness, and withor without the desire to go to bed and sleep

People reported that fatigue was not always thesame. Fatigue varied based on severity,unexpected frequency, or duration

Negative emotions related to fatigue included anger,depressed mood, frustration, aggressiveness,anxiety, self-pitying, and feeling misunderstood

Interviews showed interindividual andintraindividual differences in the experience andimpact of fatigue

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Table 3Continued


Repping-Wuts et al. (2008)34 To see my family I have to invite them to my homebecause visiting them at their home is tooexhausting

Frustrating, my mind is full of energy, but my bodydoesn’t have that energy, is unwilling to react . itis just tired and nothing else, totally worn out

My legs become very heavy and I have to sit down,just doing nothing

My wife tells me I have to lay down because I don’treact as expected and I cannot find theappropriate words, I lose my concentration?

I was told to take a rest during the day with twoyoung children I don’t know how to do that!

Fatigue was described as physical, exhausting andfrustrating, having consequences for roles,relationships, leisure time, with emotional aspectsrequiring everyday adaptation

On a list with 32 adjectives for fatigue, the wordsmost often used were physical, temporary,frustrating, causing anger, exhausting,aggravating, and acceptable

Fatigue was often recognized by close family andfriends, by patients becoming pale, a change intheir eyes not as bright, being less concentrated,getting irritated, and having more mobilityproblems

Half of the participants reported that fatigue as wamore bothersome than pain

Participants reported fatigue as mostlyunpredictable, with a sudden onset (no regulartime) and varying in intensity and duration

Respondents verbalized that they seldom mentionedfatigue explicitly to their professional health careproviders, assuming that it cannot be treated, andthat they must manage it alone

Thomsen et al. (2015)4 I am extremely tired. Some evenings when I returnfrom work and sit on the couch and turn on theTV I simply pass out. It is like I use all my strengthat work. All energy is gone. My movements causeme pain, so I use more efforts during the day,which you compensate for at night. That’s how Isee it

Often sit taking a break while doing householdactivities, for example changing the bed linen. Itake the linen off the bed. Then I sit on my walkerfor a while before I put the sheet and pillowcaseon. Then I take another break in the living room,sometimes a whole hour, before I put on the restof the linen and finally the bed cover. It is in steps

My body really, really hurts and I am so tired. It feelslike I am carrying two buckets of water all thetime. My arms just hang. That’s how tired I am. Itannoys me, because I do not want to be that tired,but you are tired

I try to protect myself and hide at home, because Iam so tired all the time. And I cannot motivatemyself to do anything. So actually my home base ismy own personal hell some days

Fatigue was considered a limitation that interferedwith patients’ daily activities and would cause thebody to feel heavy

Fatigue was described as not being relieved by sleepPain and fatigue were described as the most

dominating symptoms affecting patientsphysically, mentally, and socially. Prevalence ofpain and fatigue, and the unpredictability of thesymptoms, prevented the patients fromperforming their usual activities and fromplanning ahead, which caused much frustrationand increased isolation

Days with high levels of pain and fatigue wereparticularly isolating because it made it difficult toleave home, and/or patients deliberately chose tostay at home

CKDCox et al. (2017)36 I’m toast. I’m kind of OCD about my house. It has to

be clean and organized and everything, so it’sfrustrating. Right now there’s dishes in the sinkbecause I didn’t have the energy to put the dishesaway yet. But overall, I can still do everything, justat a slower pace and I have to take breaks. If I’mfolding laundry, I get really exhausted, so I have tostop and lay down. Laying down seems to solveeverything for me I can’t go to public grocerystores without a scooter because I can’t shopotherwise. Or I’ll just have my kids buy mesomething .

So I’ve been thinking about transferring on to thenight shift because I don’t like the way I feelafterward. I’ve got deeds I want to get done . if itwas at night, I come in at 4, get off by 8 or so, Iwould still have energy to stay up until about 11 or12 and then go to sleep

When I first started, I would go home really tired .most of the time they took out too much liquid .and I always told them I think my dry weight’s not

There was considerable variation in participants’experience of fatigue, but it had a significantimpact on QoL because it affected participants’ability to work, socialize with others, and engagein ADL

(Continued)


,

s

Table 3Continued


right. So they calibrated the weight for me, andnow I feel good

Kazemi et al. (2011)37 Sometimes, my friends call and I don’t like to answerthem. [Instead, I] ask my mother to tell them I amnot around. Because I am tired, weak, and sickand I have no patience for anybody

As the treatment continued, my condition becameworse . my muscles are weak . my legs becomeweak, and I can’t even stand talking to people

Fatigue was described by most of the participants asa symptom of their deteriorating health. Thetheme of fatigue included two subthemes: bodilyfatigue and mental fatigue. Each of thesesubthemes is related to long-term treatment,which resulted in the participants having littlemotivation for activity outside the everydayactivities of living

Monaro et al. (2014)38 [Dialysis] takes all day and then . I couldn’t bebothered . I don’t ring people . I just want tostay home . [but] I can’t neglect my friends .they have been very supportive . When I’m ondialysis . that’s when I’ve got the time to ring.I’ve got to plan when I see somebody.make sureit doesn’t interfere with dialysis

The dialysis drains you right out . I was worryingabout my blood pressure . I can feel it, you getheadaches .

Fatigue challenged people’s ability to sustain socialactivities

CKD treatment (hemodialysis) resulted in a negativeperception of a changed body including a feelingof the body being depleted

Picariello et al. (2018)41 It’s a strange kind of tiredness, quite unlike anythingthat I’ve had before. You can’t really describe it .It’s weird. You just sit down and, phew, your gone[fallen asleep]. It’s weird, strange

I’m so exhausted, I can’t do anything anymore, Ican’t even brush my hair, I’m absolutely useless.I’m a real burden on everyone

I feel so down and tired. You wouldn’t believe that asmall thing like your kidneys could make you feelso bad

I’m exhausted I can’t sleep at night. I keep onwaking up . three o’clock, four o’clock

This itching . it’s worse at night. You’re trying tosleep with nothing else to think about, and it justtakes over

Fatigue was described as different from other formsof previously experienced fatigue

Fatigue was described as exhaustingdbothemotionally and in its interference withindependence

Fatigue was related to sleep disturbance, andpruritus exacerbated declines in sleep quality

Participants did not report symptoms to cliniciansbecause of an inadequate knowledge ofsymptoms, fear, and guilt

Pugh-Clarke et al. (2017)42 I have no energy and it’s a bit like having a big, heavyweight on you . I feel like I’ve got a big, heavyload on me and I’m just so tired

When I have a long day at work or exercise orsomething, I know the difference because I knowthat I’ve done something to make me tired

It’s [illness] tiredness that caused by inactivity whenyour brain is muddled and your legs not workingproperly and you’ve got cramps

There is fatigue that I do associate with dialysis, andthat is when the machine goes on. suddenly, I’mexhausted

I just know that this[fatigue] is stress-related .sometimes at work I’m very stressed so with that Iautomatically know

I’ve learned to pace myself really . for examplesometimes with big finish productions, they wouldlike me to do two recording in one week . Iwould definitely say no to that now. I would onlydo it one day a week

This is getting on my nerves . It’s just the tirednessthat I don’t like . But it’s just so frustrating now,‘cause the girls want to go out sometimes, and Ican’t do it, because I just don’t have the energy todo it

There was definitely an effect of fatigue . so thatrestrained me from doing my tasks whatever Iwanted to do, so that was more depressing thananything else

I don’t think they really know the inside of thefatigue . I don’t think that emotionally-wise andmentally-wise they know how I feel

When I come home [from dialysis], nobody is going

Negative views of fatigue included both anassociation with cognitive decline and physicaltiredness

A difference was noted between illness-relatedfatiguedperceived as abnormal and excessive,disproportionate, and unrelated to activity andexercise

Patients’ causal beliefs centered around biomedicalexplanations of fatiguedmost attributed theirfatigue to illness and dialysis

Patients described fatigue would persist despiteresting and thus unpredictable

Other etiologies of fatigue described by participantsincluded the role of aging, sleep disturbances,and stress

Many participants described trying to maintainactivity by trying to pace themselves

Emotional consequences of fatigue includedfeelings of anger and frustration because ofphysical and social limitations caused by fatigue

Mixed feelings were described regarding feelingunderstood by family and friends. Some felt thattheir understanding was limited, and others feltsupported

Overall, keeping busy and active emerged as aparticularly helpful relief strategy for manyparticipants, jerk[ing] them of fatigue

(Continued)


Table 3Continued


to bother me, because they know that I’mcompletely out of everything, my body iscompletely fatigued, so they don’t trouble me atall

If I sit here it will only get worse won’t it? . They[symptoms] will get worse if you just lay aroundand vegetate

Schipper et al. (2016)39 I can’t describe it. How to describe fatigue? For me itis having sudden moments without having anyenergy and without being able to do anything. Mybattery is full when I wake up in the morning, butmy battery runs low during the day

I don’t tell my nephrologist my problems anymore.She will not take them seriously

People don’t realize the impact of having thisdisease. They tend to ignore it and I think they seeme as someone who fakes it

Fatigue was mentioned as the most problematiccomplaint among patients having moderate-to-severe CKD

People felt like they had to persuade others thattheir experience was real, not like the fatigueeveryone experiences, and not faked

Yngman-Uhlin et al. (2010)40 . I’m not sleepy, I can be tired anyway, but I can’tsleep . I feel it in my whole body, some kind ofdrowsiness

Sometimes I say I don’t want to come along becauseI’m so tired. I think I’m not such good company,and it wears me out

It [treatment] becomes a burden for the organs, anda burden needs strength, and I don’t have anyappetite, so where will I get the strength from?.I’ve become so tired

Everything is heavy in one way or another. I feel sotired, so I go to bed and sleep . well it’severything if I’m doing the dishes. I think; what.am I doing the dishes for? Ugh, I have to, then Ican go to bed

Prolonged tiredness and the descriptions of relateddisabilities with their large impact on daily life,including physical and social activities

Memories of their individual capacity before theillness brought unrealistic expectations, and thiscontributed to shortage of rest and sleep.Activities led to a feeling of being worn out, and afeeling of being lazy arose when they were resting.The experience of symptoms andpharmacological treatment gave them a mentaltiredness and an increased need to rest

COPDKouijzer et al. (2018)43 The daily chores that you cannot do properly

anymore. Unable to walk anywhere decently,without having to worry whether you will be ableto return . everything stops after 10 minutesbecause you are tired

Because of the fatigue I cannot stand by myself. Ihave no strength or energy to stop my body fromfalling down. It sneaks into your life, it goes veryslowly. You sit down more often because you are inpain and short of breath. You cannot do anythinganymore, so you become more and more tired

And yes, I feel tired right now because I went too farand continued for too long. At this moment thisfatigue and shortness of breath is not getting anybetter

I cannot wash myself. I have to recover after taking ashower . When I go to the toilet, I am totallyexhausted. Then I just go back to bed. Even eatingmakes me dead tired

When the weather is drizzly, it [the fatigue] is muchworse. Also during the winter period or when it isreally hot, I am much more tired. So when it is toohot, too wet or too cold, I cannot go outsideanymore

I do think that you slowly become isolated from yoursocial environment. You can no longer go to themarket, or visit family. I can barely go outside ormeet up with people. Total isolation

This has more to do with gloominess. You are notreally depressed but you feel down. Then you donot have any spark or energy to do things. Nomotivation

Initially, I need sympathy and tips on how to dealwith it [fatigue]

But the pulmonologist, he says very little. He never

Fatigue was described as a feeling of physical andmental exhaustion and thus an extreme burdenon the daily life of patients. Patients perceive theimpact of fatigue on their daily lives to be a keyfactor in decreasing their QoL

Fatigue had a large negative impact in people’s livesand manifested as multiple limitations

The burden of fatigue was perceived to besusceptible to change

All the participants associated their fatigue withCOPD and resulting dyspnea

Fatigue was reported to affect socialization and leadto feelings of loneliness

Participants reported that fatigue is not oftenmentioned by their pulmonologist and that whenthey try to talk about their fatigue, they feelignored. Other clinicians such as physiotherapists,psychologists, and nurses did invest time to discussfatigue and how to cope with fatigue

(Continued)


Table 3Continued


answers when you say that you are very tired. Hecompletely ignores it

Paap et al. (2014)44 Yes, you get tired more quickly. I’m always tiredWhen I’m at home and I’m tired, I really can’t bebothered with anything, the whole world may beturned upside down for all I care, all I want is tolie down

I’m always tired anyway, if I didn’t have to go to workI would be tired all the same, you actually get tiredbecause of the medicines you have to take duringthe day. One medicine has to widen the bloodvessels, the other has to narrow them again . it’sa combination of (the aforementioned)

And fatigue, sometimes I ’m exhausted and I feeldepressed and I think heck, why can ’t I do that,but there are also moments when I like it and don’t at all resent it. It’s so difficult

Patients described fatigue as highly bothersome invarious ways; a chronic lack of energy, feelingalready totally exhausted when waking up, orexperiencing feelings of weariness, and so on. Themost frequently mentioned way to cope withfatigue was to lie down and rest. Patients were notalways very clear on determinants of fatigue: itcould occur without any reason or result fromphysical activity or use of medications

Stridsman et al. (2014)45 In principle, you can say that fatigue is controllingyour life, if you are going to rest or not. It’s not memyself. You are a slave to fatigue

You can say that when you have trouble with thebreathing you lose your energy levels and afterthat you are being tired too it’s like you don’t getany oxygen you lose your arms and you getfatigued it’s that simple

It’s heavier in some way, because it’s felt in the wholebody. It’s like you’ve lost your strength in someway, both in your arms and legs, and you aregetting cold hands and feet. It’s like anotherfeeling of fatigue

. and then I give so much of myself that I feeltotally blown out

We (my wife and I) don’t talk much about it[fatigue] actually, it’s just something that is there

I feel hopelessness when I want to do things(activities), I don’t have the strength to manage it

I have to rest, to be able to start again

Fatigue seems to be an always-present feeling thatinvolves the whole human being, and whenexperienced with dyspnea, fatigue increases andbecomes more difficult to manage

Regardless of exacerbation, there was a constantdesire to sleep, and when they allowed the body torelax, the feeling of fatigue was overwhelming.They described that it did not matter how muchthey slept, the feeling of fatigue was alwayspresent, controlling their life. Sleep was describedto be a bad habit and awakened feelings of guiltbecause the participants felt that life was beingslept away. It also raised feelings of beingunsociable, sleeping instead of being with familyand friends

Other causes that participants attributed fatigue toincluded aging, medications, pain, sleepdisturbances, snoring, and weight gain. Socialinvolvement and concerns for relatives also weredescribed as a cause for fatigue

The participants described that they had to forcethemselves to plan, prioritize, and be flexible togain control of fatigue with techniques includingresting and sleeping to get more energy

Wortz et al. (2012)46 Lots of thing I like to do, but I can’t. We used todance a lot. Our main activity now is going to thegrocery store and the hospital

I used to enjoy dancing . can’t do that anymore .can’t make it through a song

Concern about loss of normal functioning wascharacterized by the loss of normal activities notnecessarily essential to survival, such asperforming recreational activities and hobbies orthe inability to complete tasks in a normal fashionor at a normal pace. This loss was often attributedto breathlessness and fatigue

Shalit et al. (2016)47 Now, I eat slower and I’m eating less. I know I’meating less at the time I’m doing all this becauseI’m more tired. And sometimes I’ll start offactually with the meal and eating it, and I justsomehow cant eat it . you know, it’s just toomuch, it won’t go down, I have not gotten theappetite and it’s somehow too exhausting. Liketrying to carry a weight that’s too heavy

So that tiredness is a factor that you have to thinkahead to have food that can be produced veryquickly, otherwise I eat more sandwiches

Fatigue and reduced activity because ofbreathlessness resulted in early satiety, especiallywhen unwell. Shortness of breath and fatigue wereidentified as limiting physical capacity as well asinfluencing nutritional intake

HF ¼ heart failure; ADL ¼ activities of daily living; MS ¼ multiple sclerosis; CKD ¼ chronic kidney disease; QoL ¼ quality of life; COPD ¼ chronic obstructivepulmonary disease.


controlling your life, if you are going to rest or not).45 PeoplewithCOPDoften associated breathlessness with fatigue.Many attributed their fatigue to their underlying dis-ease, COPD, and associated worsening fatigue withbreathlessness, dyspnea, andoxygendeprivation.43,45,47

The daily limitations caused by fatigue led to aheavy mental burden or what some participantscalled mental fatigue. Fatigue caused feelings of lone-liness,43 depression,43,44 worry,43,44,46 anxiety, anger,hopelessness, and a loss of joy in life and will to live


(You do not just quit your life because you are tired, butsometimes it crosses my mind. It hurts so much that youcannot do anything anymore . What a bad life).45 Pa-tients felt isolated because of their reduced abilityto engage in social activity.

Furthermore, their feelings of social isolation anddepression were exacerbated by feeling that their fa-tigue was misunderstood and ignored. Patientsdescribed not only feeling misunderstood but alsofeeling ignored by their doctor, the pulmonologist, hesays very little. He never answers when you say that youare very tired. He completely ignores it.

SynthesisAfter exploring fatigue as experienced by patients

with various conditions, the findings were integratedto systematically identify shared and unique conceptsand themes among the five chronically ill patient pop-ulations. One theme was running out of batteries. Acrossevery condition, patients described severe lack of en-ergy that was debilitating. Another theme was badlife. The intensity and magnitude of fatigue permeatedall aspect of patients’ lives by challenging their phys-ical and psychological well-being and leading to con-flicting perceptions of intentions (what theyneeded/wanted to accomplish) vs. capacity (whatthey were actually able to accomplish). A third themewas associated symptoms. Fatigue was often accompaniedby a variety of other symptoms, which exacerbated theprofound negative impact of fatigue. A final themewas feeling misunderstood. Health care professionalsand loved ones failed to understand the debilitatingnature of the fatigue. Patients felt that they wereviewed as malingerers, which caused them to experi-ence social isolation and depression. Table 4 summa-rizes the contribution of each study to these fourthemes.

Running Out of Batteries. Fatigue was consistentlydescribed as a persistent overwhelming feeling oftiredness, severe lethargy, or lack of energy, physicalweakness, and cognitive decline, which were often un-predictable. Many participants described feeling likethey had a limited amount of energydlike a batterythat runs out of energydthey described needing toplan and restructure their lives to conserve their en-ergy. Fatigue was described as a loss of this limited en-ergy, which severely debilitated participants living withchronic conditions.

Bad Life. Across conditions, patients reported that fa-tigue restricted their ability to engage in physical andsocial activities. The physical experience of fatiguemade it difficult to walk, complete household chores,shop, and participate in leisure and self-care activities.The discrepancy between their intent and their

decline in physical ability caused many to feel a lossof independence and left them feeling discouragedand guilty for requiring assistance. The unpredict-ability of the severity of their fatigue further contrib-uted to feelings of loss of control and self-governance.In causing a loss of physical ability and indepen-

dence, fatigue decreased people’s ability to participatein social activities, leading to feelings of social isolationand depression. Patients reported missing family cele-brations and social gatherings with friends because oftheir inability to travel or predict and consequentlyadequately prepare for fatigue. Patients describedfeeling depressed about not being able to participatein social activities because of extreme fatigue.

Associated Symptoms. Patients across all five chronicconditions reported numerous symptoms that contrib-uted to the profound negative effects of fatigue. Thephysical symptoms that co-occurred with fatigue inmore than one study and in most of the five condi-tions were low endurance, decreased mobility, andsleep disturbances. Cognitive decline, including mem-ory problems, poor concentration, and impairedcognition were also described. The most commonly re-ported psychological symptom was depression orsadness. A wide variety of other symptoms were notedin the various patient populations, but these symp-toms were unique to specific conditions (e.g., pruritusin CKD, early satiety in COPD, pain in RA).

Feeling Misunderstood. Across all five conditions, peo-ple perceived that friends, family members, healthcare professionals, and even strangers did not under-stand their fatigue. This lack of understanding nega-tively impacted their psychosocial well-being. Thedissonance between the magnitude of their experi-ence of fatigue and the lack of visible signs led manyto fear that their friends and family members wouldnot believe them and would perceive their fatigue asan excuse or laziness. As a result, some patients triedto hide their feelings from others. Patients also spokeof the difficulty they had explaining their fatigue tohealth care professionals. People experiencing fatiguedescribed that the providers could not understandtheir fatigue, especially if their self-report of fatiguewas more severe than the objective clinical indicatorsof their illness. Together, the four themes (runningout of batteries, bad life, associated symptoms, andfeeling misunderstood) captured the intensity, magni-tude, and severity of fatigue, which profoundlyimpacted QoL across the five conditions.

DiscussionIdentifying and examining similarities and differ-

ences in fatigue experienced across multiple

Table 4Summary of the Third-Order Themes by Study and Chronic Condition

Studies by Chronic Condition Running Out of Batteries Bad Life Associated Symptoms Feeling Misunderstood

HFDickson et al.17 A AGwaltney et al.18 A A AHagglund et al.15 A A A AHolden et al.20 A A AJones et al.23 A A A AJurgens et al.19 A A A ANorberg et al.21 A A A AWalsh et al.22 A A A A

MSAl-Sharman et al.24 A A A AKayes et al.12 A A ALohne et al.11 A A A AMoriya and Kutsumi25 A A A ANewland et al.26 A A A ABarlow et al.27 A A A ATurpin et al.28 A A A A

RAConnolly et al.29 A A A AFeldthusen et al.30 A A A AMinnock et al.31 A A A AMortada et al.32 A A ANikolaus et al.33 A A A ARepping-Wuts et al.34 A A A AThomsen et al.4 A A A

CKDCox et al.36 A A A AKazemi et al.37 A A A AMonaro et al.38 A APicariello et al.41 A A A APugh-Clarke et al.42 A A A ASchipper et al.39 A A A AYngman-Uhlin et al.40 A A A A

COPDKouijzer et al.43 A A A APaap et al.44 A A AStridsman et al.45 A A A AWortz et al.46 A A A AShalit et al.47 A A A

HF ¼ heart failure; MS ¼ multiple sclerosis; RA ¼ rheumatoid arthritis; CKD ¼ chronic kidney disease; COPD ¼ chronic obstructive pulmonary disease.The symbol ‘A’ denotes third-order themes included in the study.


conditions can help in better understanding the natureof fatigue to help guide the evaluation and manage-ment of fatigue. We performed a qualitative metasyn-thesis to explore the experience of fatigue in fivenoninfectious chronic conditions; HF, MS, RA, CKD,and COPD. We found themes that were shared acrossthese conditions, running out of batteries, a bad life,associated symptoms, and feeling misunderstood.Our metasynthesis highlighted that fatigue is a com-mon symptom across multiple chronic conditions andhas severe negative impacts on patients’ QoL.

Our results are consistent with prior qualitativestudies examining the experience of fatigue in individ-ual disease processes and the only prior study we foundthat compared the experience of fatigue across chronicconditions. Whitehead et al.3 described the experienceof fatigue across long-term conditions in a qualitativemetasynthesis. However, multiple studies (22 of 58)and many participants (576 of 1153) included in theirreview had cancer-related fatigue. Our results build

on their findings by focusing on noncancer-related fa-tigue. Importantly, the themes, running out of batteriesand a bad life, were consistent with the description of fa-tigue by Whitehead et al. as occurring with an intensitythat was overwhelming.Whitehead et al. also noted thatpeople with fatigue perceived that others failed to un-derstand their experience.A major difference between the study by Whitehead

et al.3 and our metasynthesis is that we found that asso-ciated symptoms accompanied and/or exacerbated fa-tigue. Whitehead et al.3 commented that fatigue wasnot typically linked with other symptoms. As the reviewby Whitehead et al. focused on cancer-related fatigueand other chronic conditions not included in ourstudy, it is possible that fatigue’s association with othersymptoms is unique to specific disease processes.Further research is needed to discern if fatigue isstrongly associated with other symptoms and whetherthis phenomenon is consistent across other chronicconditions.

Articles Assessed for Inclusion

Articles assessed for eligibility (n = 289)

HF (n = 90)COPD (n = 99)CKD (n = 23)MS (n = 32)RA (n = 45)

Reasons for Exclusion

Duplicates (n = 50)

Not meeting inclusion criteria: (n = 205)Focused on providers or caregivers, not patients (n = 8)Pediatric (n = 2)Quantitative studies (n = 89)Review articles (n = 18)Not related to the specific condition (n = 29)Not focused on symptoms (n = 7)Fatigue not a theme (n = 21)Instrument development (n = 6)Other (n = 25)

Eligible (n = 34)

HF (n = 8)COPD (n = 5)CKD (n = 7)MS (n = 7) RA (n = 7)

CASP <15: (n = 3)

MS (n = 2)

Included (n = 34)

HF (n = 8) COPD (n = 5)CKD (n = 7)MS (n = 7)RA (n = 7)

Fig. 1. Preferred Reporting Items for Systematic Reviews and Meta-Analyses flow diagram of articles assessed for inclusion.HF ¼ heart failure; COPD ¼ chronic obstructive pulmonary disease; CKD ¼ chronic kidney disease; MS ¼ multiple sclerosis;RA ¼ rheumatoid arthritis; CASP ¼ Critical Appraisal Skills Program.


We found that family, friends, health care providers,and even strangers had difficulty understanding theprofound impact of fatigue on psychosocial well-being. The responses of family and friends may beinfluenced by that of clinicians, and as Lian and Rob-son48 noted health care professionals often respond tomedically unexplained symptoms such as fatigue with

disbelief, inappropriate psychological explanations,marginalization of experiences, disrespectful treat-ment, lack of physical examination, and damaginghealth advice. Others have noted that patients areoften not even asked about fatigue by their healthcare professionals.49 Failure to acknowledge fatigueundermines patients’ experiences, contributes to


family members/friends’ misunderstanding of fatigue,and, as described by patients across these five chronicconditions, contributes to feelings of social isolationand depression.

ImplicationsThe profound impact of fatigue is universally iden-

tified across the studies included in this review. Healthcare professionals need to validate the impact of fa-tigue on patients’ QoL. Evaluating and managingfatigue must become a priority because it has signifi-cant effects on physical and mental health. Further-more, patients and their loved ones should receiveinformation that recognizes and legitimizes theimpact of fatigue. Doing so would validate patients’experience of fatigue and empower patients and fam-ilies by allowing them to prepare for and deal with po-tential challenges. Although the ultimate goal isidentification of effective treatments that limit fatigue,it is premature to propose interventions. This meta-synthesis illustrates the similarity of the descriptionsacross five chronic conditions, which could suggestthat there are common biological mechanisms of fa-tigue underlying the phenomenon across these condi-tions. Research comparing and contrasting biologicalmechanisms across these conditions is needed toexamine this possibility.

Future qualitative studies could contribute toour understanding of fatigue and thus aid indeveloping more accurate and consistent methods ofevaluating andmanaging fatigue within and across con-ditions. Identifying common elements of the fatigueexperience across conditions could suggest generictherapeutic intervention targets, whereas differencescould reveal mechanisms unique to a disease processand help identify individualized interventions. Futurestudies should also test whether treating co-occurringsymptoms influence fatigue and whether focused treat-ment of fatigue is sufficient to improve QoL.

Limitations and StrengthsOur integration and synthesis of existing studies was

dependent on the authors’ interpretations of theirqualitative data sets. The authors’ personal experi-ences guided their interpretation of the qualitativedata, and there may be themes that were not identi-fied by the authors. In addition, few of the qualitativestudies reported details about the different stages oftreatment, time since diagnosis, or comorbid condi-tions. Some studies failed to report the exact numberof men and women or the average age of participants,so we are not able to describe the sample fully. Exam-ining fatigue in other illness groups could capturemore robust and representative depictions of fatigue.Strengths of our metasynthesis include that it is oneof only two studies comparing the experience of

fatigue across chronic conditions and the only oneto focus on noncancer-related fatigue.

ConclusionFatigue is a common symptom across chronic condi-

tions that has a profound impact on patients’ QoL.The severe energy depletion described by patients,the negative and life-altering impact of fatigue, treat-ment of co-occurring symptoms, and validation ofthe experience of fatigue are important to considerwhen establishing a plan of care for patients withHF, MS, RA, CKD, and COPD. Addressing thesechallenges is an important step to improving theQoL of people experiencing fatigue while living withchronic conditions.

Disclosures and AcknowledgmentsThe authors thank Christine Bradway, PhD, CRNP,

Victoria V. Dickson, PhD, CRNP, and Sarah H. Kagan,PhD, RN, for providing guidance on qualitativeresearch and appraisal. They also acknowledge Ri-chard James and Sherry Morgan from the Universityof Pennsylvania Biomedical Library for providing assis-tance with the development of the search strategy anddatabase searches. Support provided by the NationalInstitute of Nursing Research, National Institutes ofHealth, Department of Health and Human Servicesto R. B. J.-L. who received Postdoctoral IntramuralResearch Training Award. The authors declare no con-flicts of interest.

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Documents

A Qualitative Metasynthesis of the Experience of Fatigue