Symptom experience in patients with cancer-related fatigue: A systematic review

Ke PENG,Mi ZHANG,Jie ZHANG,Dan YANG,Ling TANG

1Department of Emergency,Beijing Hospital,National Center of Gerontology;Institute of Geriatric Medicine,Chinese Academy of Medical Sciences,Beijing,China;2Acupuncture and Moxibustion Minimally Invasive Oncology Department,The Third Hospital of Beijing University of Chinese Medicine,Beijing,China;3College of Nursing,Beijing University of Traditional Chinese Medicine,Beijing,China;4Department of Nursing,Dongfang Hospital of Beijing University of Chinese Medicine,Beijing,China

ABSTRACT To understand the real experiences of patients with cancer-related fatigue and to promote quality of life,the researchers used computer searches of PubMed,EMbase,CINAHL,PsycINFO,Web of Science,and China National Knowledge Infrastructure,China Biology Medicine disc,Wanfang Data,China Science and Technology Journal Database for relevant qualitative studies from the inception to November 1,2021.The results showed that a total of 16 papers were included,and 57 outcomes were distilled into 9 categories,which were pooled into four integrated outcomes,such as somatic,psychological and social support and so on.It is concluded that patients with cancer-related fatigue are not only in the midst of multidimensional,unspeakable somatic experiences,and complex psychological experiences,they are also hindered in coping with fatigue symptom and social life.Therefore,healthcare professionals should provide health interventions and psychological support to those patients whenever possible.

Keywords: Cancer-related fatigue,meta-synthesis,patient experience,qualitative research,systematic review

INTRODUCTION

While the number of new cancer cases is increasing globally each year,the cure and survival rates of cancer patients are also increasing year by year,making it increasingly important to focus on the concomitant symptoms of cancer and improve the quality of life of patients.[1]Cancer-related fatigue (CRF),as one of the most common symptoms in cancer survivors,is experienced by approximately 50%-90% of cancer patients worldwide.[2]As defined in Oncology Clinical Practice Guidelines 2019.2 edition by the National Comprehensive Cancer Network,CRF is a distressing,persistent,subjective,related somatic,emotional,or cognitive fatigue or exhaustion associated with cancer or cancer treatment that is inconsistent with recent activity levels and can interfere with daily life.[3]In addition,CRF may affect patients personally,socially,and in their work roles and have a profoundly negative impact on overall quality of survival.[4]Recent studies on CRF have mostly used quantitative studies to explore the extent of fatigue and the effectiveness of interventions,[5]but lack hidden information on patients subjectivity,whereas qualitative studies can provide researchers with rich and insightful knowledge from patients’ perspectives and experiences,complementing quantitative studies to help healthcare professionals better understand the connotations of cancer-caused fatigue.Therefore,the aim of this study was to use meta-synthesis to provide a more comprehensive and clear description of the experience of patients with CRF and to provide a theoretical basis for healthcare professionals to develop more acceptable interventions to improve the quality of patient survival.

METHODS

Literature inclusion and exclusion criteria

The inclusion criteria were as follows: (1) the study subjects were adult patients with symptoms of cancer-caused fatigue,(2) the phenomena of interest were the real feelings and experiences of patients with cancer-caused fatigue,(3)the methods of study design included were qualitative research methods such as phenomenology,grounded theory,ethnography,narrative,and case studies,(4) the evaluation content was the real feelings of patients with CRF such as physical and mental experiences,social experiences,and coping experiences;(5) the type of study was qualitative.Exclusion criteria were as follows: (1) duplicate publications or full-text documents not available;(2) non-English and non-Chinese documents.

Search strategy

Computer searches of PubMed,EMbase,CINAHL,PsycINFO,Web of Science,China National Knowledge Infrastructure,China Biology Medicine disc,Wanfang Data,China Science and Technology Journal Database were conducted to collect the qualitative studies on the symptom experience of patients with CRF from the inception to November 1,2021.A combination of subject terms and free words was used to retrieve the synonyms as much as possible.The search terms include: (“cancer-related fatigue” OR “CRF” OR “fatigue” OR“radiotherapy-related fatigue”) AND (“qualitative research”OR “experience” OR “feelings”).

Literature screening and data extraction

Literature screening and data extraction were carried out independently by two researchers,and in case of disagreement,both parties agreed or a third researcher made the judgment.Duplicates were first screened out with the help of EndNote,then an initial screening was performed by reading the title and abstract of the literature,then a second screening was performed by reading the full text,and finally,the literature for the inclusion in this study was identified.The information extracted included: Authors,year of publication,country,study population,number of participants,study methods,study objectives,and study results.

Literature quality evaluation

Independent quality evaluation of the included studies was conducted by two researchers using the Australian JBI Center for Evidence-Based Health Care Quality Assessment Criteria for Qualitative Research.[6]Each of the 10 evaluation components was rated as “yes,” “no,” “unclear,” or “not applicable.” The quality of the study can be divided into three levels: A,B,and C.Level A is to completely meet the quality evaluation criteria of qualitative research,with a low possibility of bias;level B is to partially meet the quality evaluation criteria,with a medium possibility of bias;level C is to completely fail to meet the quality evaluation criteria,with a high possibility of bias,and finally only A and B level literature is included.A third researcher assisted in judging the evaluation results when disagreement could not be reached.

Literature synthesis methods

In this study,the results of the literature were integrated using the aggregative synthesis methods by the Joanna Briggs Institute.[6]Members of the research team will read,understand,analyze,and interpret the results of each study repeatedly by fully understanding the philosophical ideas and methodologies of each qualitative study,grouping similar results together to form new categories,and then grouping the categories into integrated results to obtain new explanations of the phenomena,making the final results more general and convincing.

RESULTS

Literature search results

A total of 1330 articles were obtained by initial search.After eliminating duplicates,exclusion by initial screening,and exclusion by reading the full text,16 were finally included[Figure 1].[7-22]Among them,5 were in Chinese and 11 in English;9 were phenomenological studies,4 were rooted in theory,and 3 did not specify the research design.

Basic characteristics and methodological quality assessment of the included studies

The characteristics of the included studies are shown in Table 1.The evaluation of methodological quality of the included studies is shown in Table 2.

Meta-synthesis results

Meta-synthesis was used to distill 57 clear results,which were grouped into nine categories and further synthesized to obtain four integrated results [Figure 2].

Integrated outcome 1: Somatic experience of CRF is characterized by severe fatigue,and both decreased appetite and sleep problems exacerbate the somatic experience of fatigue.

Figure 1: Flow chart of PRISMA literature search and screening

Category 1: CRF is characteristically severe fatigue.Unlike the fatigue experienced by the general population,the fatigue experienced by oncology patients is severe fatigue that is not related to workload and cannot be relieved by rest or sleep.For example,“I’m just exhausted and can’t do anything.”[14]Patients often present with weakness,dizziness,weakness,and limb weakness.For example,“both legs have no energy,limbs are weak.”[11]Patients often present low voice.For example,“I feel like I can’t lift my head and shoulders during chemotherapy,my voice is low and weak when I speak.”[11]Patients often present drowsiness.For example,“I feel sleepy all the time,I can’t read,and I always want to sleep.”[9]It is difficult to specify the feeling of CRF,and patients often use metaphors to express the symptoms such as “as heavy as lead,”[9]“like a clock with no energy,”[11]and “it feels like I’m running out of gas.”[12]In addition,the appearance of fatigue symptoms varied from person to person,some were experienced as a consultation symptom.For example,“I was admitted to the hospital because I felt tired before I went for a check-up.”[10]Some were experienced during treatment.For example,“the day after each chemotherapy session I just wanted to lie in bed,I didn’t want to say anything and I didn’t want to eat.”[8]Some will appear after the treatment.For example,“I feel tired when I go home after chemotherapy and always want to lie down and rest.”[9]In addition,the duration of the fatigue symptoms varied,sometimes showing a long duration.For example,“the fatigue seemed to be more cumulative and I became more and more tired as I entered the follow-up cycle.”[15]Moreover,sometimes fatigue symptoms were recurrent.For example,“after the surgery I felt weak all over and rested at home for a while,but the feeling came back during the last few days of treatment.”[10]

Category 2: Fatigue interacts with appetite and sleep experiences.Patients in a fatigued state usually experience a feeling of weakness,which on the one hand can cause a decrease in appetite.For example,“I don’t want to move or eat in bed usually,I don’t have any appetite.”[7]On the other hand,eating can increase the fatigue.For example,“When I feel tired,chewing food makes me feel more tired.”[16]This is also true for fatigue and sleep problems,such as light sleep,bed recognition,and noisy hospital environment.“I get too noisy when there are more visitors in the ward,I am used to going to bed early and waking up early,but I cannot go to bed early in the hospital,so I feel drowsy all day.”[9]Other symptoms of oncology patients appeared like that “I have to get up 3-4 times every night to go to the toilet.I have to go to the toilet 3-4 times every night,and I can’t sleep well at all”[8]which makes patients tired duringthe day and have difficulty sleeping at night.“The more you sleep,the more tired you are.”[7]

Table 1: Basic characteristics of the included studies

Integrating outcome 2: Patients with CRF experience reduced cognitive ability and more negative emotions.

Category 3: Cognitive decline in patients with CRF.Patients with carcinogenic fatigue not only suffer from severe physical discomfort,but also have problems with their psychological and cognitive functioning.Some patients suffer from memory loss.“They forget things more easily than before,and they cannot remember what they were going to do if they do not do it right away.”[9]Some patients have difficulty concentrating.For example,“they cannot concentrate on reading books or newspapers,and they are easily distracted,often thinking about other things while reading.”[9]Others have difficulty thinking,and some patients’ thinking ability will decrease.For example,“I graduated from university with a bachelor’s degree,my son is now in junior high school,I used to be able to help him always when he encountered a topic that he could not solve,but now he can’t even think about easy topics.”[10]These changes in cognitive ability will not only bring patients uncomfortable psychological experiences,but also affect their work and life.For example,“I am a high school teacher now it is really difficult to prepare a lesson to clear my mind and figure out the logic.”[11]“Now I often forget people’s names,forget the words of recent important things,and cannot find the object I just put down when I turn my eyes.”[11]

Category 4: Patients with CRF have fewer positive emotions and more negative emotions.Most patients with CRF are psychologically sensitive and fragile,and feel depressed when they feel a loss of self because they have lost someof their ability to live.For example,“Yes,it’s like something has attacked my body that won’t let me be the way I used to be,and that bothers me and really makes me sad;”[15]“when patients face treatment and I am very sensitive to the drugs,my white blood cells drop a lot and sometimes I feel weak in my legs.”[8]Patients also experience unexplained moods such as depression,loss of control,irritability,and even crankiness.For example,“One day my husband was late in bringing me food and I lost my temper with him,now that I think about it was no big deal how did I get angry.”[8]Although fatigue caused more negative emotions,there were some patients who accepted the symptoms of fatigue with normalcy.For example,“When I needed to rest,I rested,like I allowed myself to make changes because of my condition and I didn’t want that condition to control me,so I just went on with my life as usual,”[15]and “even provokes patients to fight”.“They keep trying to sleep,so.I,I.don’t,I don’t want to rely on anyone.”[21]

Table 2: Evaluation of methodological quality of included studies

Integrated outcome 3: Patients with CRF have reduced social competence internally,face economic problems and incomplete social support externally,and have a less than positive overall social experience.

Category 5: Patients with CRF have limited social competence.Under both somatic and psychological influences,some patients with carcinogenic fatigue are limited in their ability to work.For example,“What comes with that (fatigue) is a lack of concentration.I’m not able to somehow connect ideas and do some kind of integrated thing and I really panic (at work)”,[17]Some of them affect the patient’s social skills.For example,“after getting sick,I become passive and do not take the initiative to contact the outside world,people call me on their own initiative,now I don’t even go to see my father,I put off seeing my classmates and friends as long as I can,sometimes I want to see someone but I think I’d rather not,it’s not fun.”[11]CRF may also reduce the patient’s ability to communicate verbally.For example,“Exhausting fatigue.,I can’t do anything about it,I can’t even talk.I just lie down with my eyes closed.and.relieve myself,no,I can’t.do anything,I can’t talk,I can’t communicate at all.”[19]

Category 6: Patients with CRF face multiple financial problems.Cancer patients face more or less financial problems during treatment,patients with little savings.For example,“I come from a rural area in another city,and it is very expensive to see a doctor in Shanghai,the other day I checked I has spent more than 30,000 China yuan,I am very sad.”[8]Patients without medical insurance will bear more pressure.For example,“I don’t get reimbursed for my medical expenses,and I really can’t afford it if this disease comes back,”[9]while patients with some savings are also worried when faced with long-term treatment and care costs,“I’ve spent hundreds of thousands of dollars on this disease,and I have to be taken care of,I really don’t know when it will end.”[9]

Category 7: Incomplete social support for patients with CRF.Good family,social and medical relationships are very important for patients.Support from family can give patients a bottom line,and support from friends and cancer clubs can give patients hope.For example,“The members of the club come to the hospital every week to tell me about their treatment and show me some pictures of trips out,and I want to go on trips with them when my treatment is over.”[8]The proactive help and from health care professionals would be more beneficial to patients.For example,“Nurse Little D is very good,she cares about us very much and always tells us what to pay attention to at each stage of radiotherapy,which helps us a lot.”[8]Notably,some patients also reported that they were still in a state of fatigue when they had been ill for too long or after recovering from cancer,when family,friends and colleagues would ignore the patient’s fatigue.For example,“Even if I am not tired now,I tell people that I still get tired from time to time due to cancer,because if I don’t say that they tend to forget about it,or even express a lack of understanding of the patient’s tiredness.Sometime after about a year when I say I’m tired,their attitude changes,they’ve had enough,they tell me to stop complaining.”[19]

Integrating finding 4: Patients with CRF will have different experiences if they adopt different coping styles.

Figure 2: Contd...

Figure 2: Meta-synthesis results

Category 8: Positive coping styles lead to patient satisfaction.How patients with CRF will cope with fatigue is also a line of research worth exploring,with some patients actively adapting to fatigue and making it a part of their lives.“It (cancer and fatigue) happened to me,so I need to face it and work with my doctor.”[22]Some patients were motivated to conquer fatigue,e.g.“I didn’t give up,I’m a person who doesn’t give up.So I did more,I rested more.But I didn’t give up.”[21]Some patients would proactively plan their lives,e.g.“I try not to set high standards for myself and my husband.”[13]“When I went back to work I started exercising and that helped me,I mean even though I felt a bit tired,it helped me.”[14]In addition,being active in religious activities and engaging in complementary alternative therapies also makes patients feel better,e.g.“.Prayer has helped me to enter spiritually and this has relieved me,”[14]“(performing acupuncture plus herbal medicine) I find I sleep better at night and don’t doze off during the day.”[14]

Category 9: Negative coping defeats patients by fatigue.Compared to other cancer-related symptoms such as pain,diarrhea,nausea,and vomiting,fatigue is a “gentle” and chronic experience for patients,so some patients ignore fatigue symptoms and fail to get good symptom management,for example,“I think tiredness is a small thing and I usually don’t bother the doctors and nurses.”[7]Some patients do not seek help because they do not want to cause problems for others.e.g.“Actually,I am not very strong,so I should be fine.I know nurses are very busy,but if you could come and talk to us more often and guide us on ways to relieve fatigue,it might make our whole treatment process more comfortable.”[8]Some patients would choose to accept the symptoms of fatigue negatively,for example,“I can’t overcome this fatigue,I have the will but fatigue is stronger than me,I lose all interest and lie down.”[13]

DISCUSSION

Methodological quality of this study

A total of 16 papers were included in this study,of which 9 were phenomenological studies,4 were rooted in theory,and 3 did not specify methodology,and data were collected through semi-structured and unstructured interviews and focus groups.The methodological quality of the 16 included documents was evaluated using the Australian JBI Center for Evidence-Based Health Care Quality Assessment Criteria for Qualitative Research,and all 16 documents were rated B on a 10-point scale.Fifteen of these documents did not elaborate on whether their philosophical basis was consistent with their methodology;three documents did not state what methodology they used,let alone whether their methodology was consistent with the research questions,data collection methods,representativeness of the study population,methods of data analysis,and the way results were interpreted;none of the 16 documents described the researcher’s own situation in terms of cultural background and values;15 documents did not elaborate on the researcher’s influence on the study,and one literature did not state whether it met current ethical norms.The above five scores affect the overall quality of the included literature,which suggests that researchers should fully consider the philosophical basis of the study,the methodology,the ethical norms,consider the values of the researcher,the cultural context,and how they themselves may have influenced the study before writing a qualitative research paper,and strictly follow the reporting standards of qualitative research to write the paper and improve the scientific quality of qualitative research.

Meta-integrated results analysis Proactively helping patients to correctly recognize fatigue symptoms

The characteristics of CRF lead to the symptom being easily ignored by patients and health care professionals.On the one hand,cancer patients usually have multiple symptoms,[23]and CRF is different from other symptoms such as cancer pain and postchemotherapy vomiting which are severe and unbearable,but it is more like a “chronic poison” that slowly steals patients’ energy and affects their survival quality.On the other hand,there are more patients in oncology department and nurses are busy,so patients do not pay enough attention to CRF and are too embarrassed to seek help from medical and nursing staff.This requires healthcare workers to take the initiative to explain the prevalence and severity of CRF to patients during their admissions and health education in order to strengthen patients’ attention,and to invite some cancer patients who have recovered well and actively seek help to share their feelings and experiences of actively seeking support from healthcare workers to their fellow patients to enhance other cancer patients’awareness and help-seeking behaviors.[8]In addition,this study found that explaining more information to patients about fatigue symptoms could provide a more comfortable healthcare experience for patients,which is consistent with the findings of Jinet al.[24]in 2011,where patients’ CRF was positively associated with feelings of uncertainty about their illness.The reason for this may be related to the inability to predict the outcome and prognosis of the disease when patients lack knowledge about the disease itself and its associated treatment.This uncertainty about the disease increases patients’ feelings about the adverse effects of chemotherapy and reduces coping ability,thus increasing fatigue.Therefore,if patients report symptoms of fatigue to health care providers,they should explain the definition of fatigue,symptom presentation,psychological experience,interventions and self-management methods to patients as much detail as possible and with continuous attention.

Focus on patients’ psychological experience and create a social environment support system

Patients with CRF not only suffer from physical pain but also experience strong psychological stimulation.Smets’s study[25]have shown that CRF can affect patients’ memory,attention and thinking,and even cause different degrees of depression,guilt,anxiety,depression,anger and other psychological stress reactions,which may accelerate the progress of CRF if the psychological problems are not addressed.Moreover relief,targeted explanation,and enlightenment can stabilize the patient’s mood.Patients with more serious psychological problems can use psycho-educational interventions,such as psycho-exercise-sleep triple rehabilitation therapy,which is considered by modern medicine to play an active and essential role in the recovery process of cancer patients.Positive psychological interventions can bring patients with CRF a sense of hope and thus promote their physical and mental health,which also reflects the connotation of“people-centered” quality nursing service.[26]

Patients with CRF need support from the external social environment due to the decline in their own physiological and psychological functions,and family support is the main source of behavioral and emotional support for patients.[27]Understanding and appropriate help from spouse,children or parents will benefit patients’ physical and mental recovery,and this study showed that psychological and financial support from the family is the biggest bottom line for patients facing fatigue,and caregivers should help patients to reduce stress as much as possible,but moderate help in behavioral support is recommended for adult patients,which is because adult patients change from being the main caregiver in the family to the role of needing to be helped,and patients may be psychologically disconnected and uncomfortable with being dominated by others.Therefore,healthcare professionals should provide targeted health education to patients’ families,encourage them to communicate more with patients in terms of emotions and allow them to maintain some independence in terms of behavioral support.This is in line with the findings of Levkovichet al.[21]in 2019 study.It also requires that oncology oriented healthcare providers and medical school faculty and students should do their best to transform obscure expertise into concise and easy to understand science and technology to ease the resistance of patients with CRF to adapt to the external society.

Limitations of the study

The 16 literatures included in this study originated from eight different countries and regions,spanned a large period of time,and all had a methodological quality rating of B.Therefore,the results of this study do not cover the full range of experiences of patients with CRF,and in addition,the interpretation of the integrated results may be affected by the differences in socio-cultural,family’s atmosphere,temperament and personality,subjective experience,and financial ability of the study participants.

CONCLUSION

This study systematically evaluated qualitative research related to the experiences of patients with CRF through a pooled integration approach,and more comprehensively described the somatic,psychological,social,and coping experiences experienced by patients with CRF,concluding that patients with CRF are not only in the midst of multidimensional,ineffable somatic experiences,and complex psychological experiences,but are also hindered in coping with fatigue symptoms and social life.Healthcare professionals should provide health interventions and psychological support to patients whenever possible.In the future,the effectiveness,acceptability,and feasibility of different interventions for patients with CRF can be investigated using a mixed research method combining quantitative and qualitative studies to provide a theoretical basis for developing clinical practice guidelines,improving the quality of nursing professionals,and promoting the quality of patient survival.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.