Highlights
- •COPD patients perceived severe negative impact of fatigue on their daily lives.
- •Physical, emotional, cognitive and social functioning were limited due to fatigue.
- •Fatigue caused a high mental burden which challenged patient's coping resources.
- •Experienced fatigue decreased the quality of life of COPD patients.
- •Increased awareness on the importance of early fatigue management is needed.
Abstract
Background
Fatigue is a highly prevalent, challenging and understudied symptom of COPD, which influences the quality of life of patients. This study addresses the patient's perspective on the impact of fatigue on their daily lives and explores possible treatment options to tackle the burden of fatigue.
Methods
Twenty semi-structured interviews were conducted with ten patients hospitalised for a COPD exacerbation and ten outpatients with COPD. Data were transcribed verbatim and coded in an iterative (deductive and inductive) coding process.
Findings
Patients perceived severe negative impact of fatigue on their daily lives and emphasized that they were limited in physical, emotional, cognitive and social functioning. These limitations caused a high mental burden which challenged patients' coping resources and making fatigue a symptom difficult to accept. The majority of patients mentioned that they had, to some degree, lost the joy in life or in some cases, even lost the will to live. Patients reported the need for effective treatment and recommended a multidisciplinary approach and blended care, in which an online treatment to improve fatigue management is combined with face-to-face contact with a healthcare professional to increase social support.
Discussion
These findings indicate that patients perceive the impact of fatigue on their daily lives to be a key factor in decreasing their quality of life. To increase awareness of fatigue in healthcare professionals and patients and to facilitate early fatigue self-management, a pro-active approach by healthcare professionals might be the best way to realize effective tailored treatment.
Keywords
1. Introduction
Fatigue is a ubiquitous complaint among patients with chronic disease. It is experienced as a problematic and challenging symptom. People with a chronic disease rate fatigue often as one of the key factors leading to a decrease in quality of life [
[1]
]. This is not different for patients with COPD. Besides their respiratory symptoms, patients suffer from COPD-related fatigue on a daily basis [[2]
]. COPD-related fatigue has increasingly been recognized as an important area of research. Theander et al. reported that COPD patients perceived significant greater functional limitations due to fatigue on cognitive, physical and psychosocial functioning compared to a control group [[3]
]. The prevalence of the symptom is high; in a study concerning the severity of fatigue in patients with stable, moderate to severe COPD it was shown that almost half of all patients experienced abnormal fatigue: 23% mild and 24% severe fatigue [[4]
]. Fatigue even affected greater proportions of patients than either depression or anxiety [[5]
].Although this indicates that COPD-related fatigue is an important symptom that could negatively influence the quality of life of patients, knowledge about the impact of this symptom and its causes is still scarce. It remains unclear in which way fatigue affects the daily life of COPD patients and which physical, social, and emotional challenges this entails. In addition, there is a lack of knowledge about effective treatment options for COPD-related fatigue. Self-management programs are frequently used in COPD treatment and these interventions are often associated with improving the health-related quality of life [
[6]
]. However, there is little knowledge about management and treatment strategies focusing on COPD-related fatigue, nor is information available for tailoring these strategies to the needs of patients [- Zwerink M.
- Brusse-Keizer M.
- van der Valk P.D.
- Zielhuis G.A.
- Monninkhof E.M.
- van der Palen J.
- et al.
Self-management for patients with chronic obstructive pulmonary disease.
The Cochrane Library. 2014; https://doi.org/10.1002/14651858.CD002990.pub3
[7]
].Therefore, the purpose of the current study is to explore the patient's perspective on the impact of fatigue on their daily lives and on treatment opportunities to tackle the burden of fatigue. This will be achieved through in-depth interviews and exploring the experiential expertise of patients. In addition, the patient's perspective on fatigue, vitality and sleepiness will be explored to define the overlap and boundaries between these constructs to get a better understanding of COPD-related fatigue. The verbal data from the in-depth interviews will be systematically analysed to discover themes and patterns, with thematic analysis as guiding framework. Four research questions were formulated:
- 1.What is the patients' perspective on the descriptions and differences between fatigue, vitality and sleepiness?
- 2.What is the patients' perspective on the start, causes and fluctuations of fatigue?
- 3.How is the impact of fatigue on the life of COPD patients described from the patients' perspective?
- 4.What is the patients' perspective on the effectiveness of treatment options to tackle the burden of fatigue and improve vitality?
2. Methods
2.1 Participants
The recruitment of inpatients and outpatients was carried out by purposive sampling, to identify and select the most information-rich cases. On forehand we estimated that 10 inpatients and 10 outpatients were necessary to reach saturation in both groups. In case saturation was not reached numbers could be expanded until no additional topics emerged during the final phase of analysis. Patients were selected based on shared characteristics, which formed the inclusion criteria: (1) COPD patients were treated by a respiratory physician at the hospital (Medical Spectrum Twente), and (2) reported fatigue. Furthermore, inpatients were admitted to the hospital for a severe COPD exacerbation. The exclusion criteria were (1) a diagnosis of lung cancer, (2) sleep apnoea, and (3) cognitive impairments. First 11 outpatients that met the inclusion criteria (based on medical chart review) were selected. These patients were approached by telephone by the researcher (M.K.) and asked to participate. 10 patients agreed and appointments for interviews were made. After recruiting the outpatients, the inpatients were recruited. The inclusion criteria for the inpatients were checked by the respiratory physicians for all consecutive COPD patients that were admitted to the hospital for an COPD exacerbation. Again, the selected 12 patients were approached by the researcher (M.K.) and asked to participate of which 10 agreed. Reasons for non-participation were: no present fatigue symptoms (N = 2) and feeling too sick to participate (N = 1). The participants had no personal relationship with the researcher.
2.2 Data collection
Data was gathered by in-depth, semi-structured, face-to-face interviews. The interview schedule consisted of eighteen open-ended questions, with multiple optional sub questions. The questions focused on fatigue as a symptom of COPD, its impact and treatment preferences (Table 1). Written informed consent was obtained prior to the start of the interview, to make sure that patients decided consciously to participate in this study. The use of the semi-structured interview scheme ensured that the main issues were discussed. Participants were asked to elaborate on their answers and to give examples to further explore the patient's perspective. The interviews lasted on average 30 minutes and were recorded with a voice-recorder.
Table 1Interview topics.
| Topic | Example question per topic |
|---|---|
| Demographic information of patients | May I ask what your age is? |
| Descriptions of fatigue, vitality and sleepiness | If you should describe fatigue, what definition would you give? |
| Characteristics of fatigue | What do you think are the causes of your fatigue? |
| Impact of fatigue on daily life | To what extent does your fatigue affect your quality of life? |
| Coping strategies | To what extent can you accept the fatigue complaint you experience? |
| Communication about fatigue | To what extent do you talk about fatigue with others? With whom? |
| Treatment preferences | What are your needs and wishes when it comes to fatigue treatment? |
| Additional comments of respondent | … |
In total, all twenty interviews were conducted by one intensively trained psychology student (M.K.). No contact existed with the patients prior to the interviews. The interviews took place in a private environment, of which eleven interviews in a hospital setting (ten inpatients, one outpatient), and nine interviews at the participants' home. To facilitate respondents in talking openly and not feeling reserved in answering questions, no third person was present during the interviews.
2.3 Data analysis
The audio recordings were transcribed verbatim by the first author. Different versions of the coding scheme (final version see appendix) and samples of coded interview text were thoroughly and frequently discussed with the second and third author. Meaningful fragments in the transcripts were coded in qualitative data analysis and research software; ATLAS. ti 8.0, using thematic analysis [
[10]
]. First, the transcripts were read carefully to familiarize with the data and identify and code meaningful text fragments. Second, based on the suitability to answer the research questions, the different codes were sorted into a broader level of themes and all data relevant to each potential theme were collated. Third, the data were systematically reviewed to ensure that a name and definition for each theme were identified and these themes fitted with the content of the coded extracts. The following main themes were identified: (1) Descriptions and differences between fatigue, vitality, and sleepiness; (2) Characteristics of fatigue; the start, the causes, and its fluctuations; (3) The impact of fatigue on the daily life of COPD patients; (4) Treatment opportunities to tackle the burden of fatigue. Furthermore, inductive thematic analysis was employed to select subthemes by constant comparisons between interview transcripts. The transcripts were coded and compared until the saturation point, at which no new themes related to the research questions were identified in the data. The unit of analysis to which the codes were applied was often multiple phrases to contextualize the interpretation.2.4 Research ethics
The Medical Ethical Review Committee of Medical Spectrum Twente judged that the current study does not fall under the scope of the WMO (K16-58). The study was also approved by the ethical committee of the faculty BMS, University of Twente (file number 17028). Written informed consent was obtained from all respondents.
3. Results
3.1 Sample
A total of 20 patients (mean age, 68 ± 7.6 years; 40% men) participated in this study. The sample consisted of 10 inpatients and 10 outpatients. Patient characteristics are presented in Table 2 and show that 5 patients (25%) were classified as GOLD stage II, 12 patients (60%) were classified as GOLD stage III, and 3 patients (15%) were classified as GOLD stage IV.
Table 2Patient characteristics.
| Characteristic | Outpatients (n = 10) | Inpatients (n = 10) |
|---|---|---|
| Sex (M/F), N | 4/6 | 2/8 |
| Age, mean ± SD | 63 ± 6.1 | 72 ± 6.5 |
| Lung function, mean ± SD | ||
| VC, %pred, mean ± SD | 83 ± 15 | 85 ± 15 |
| FEV1, %pred, mean ± SD | 40 ± 11 | 49 ± 13 |
| GOLD (II/III/IV),N | 1/6/3 | 4/6/0 |
Note. Abbreviations; VC: Vital Capacity; FEV1: Forced Expiratory Volume in 1 s; GOLD (Global Initiative for Chronic Obstructive Lung Disease) 2007 classification.
3.2 Patient perspective on the description of fatigue, vitality and sleepiness
Descriptions of fatigue, vitality and sleepiness were given by patients to explore the connection and differences between these concepts. In general, fatigue was described as a feeling of physical and mental exhaustion and thus an extreme burden on the daily life of patients. They associated physical fatigue with a severe lack of energy and the incapability to perform physical and social activities: “The daily chores that you cannot do properly anymore. Unable to walk anywhere decently, without having to worry whether you will be able to return (…) everything stops after 10 min because you are tired.” (P7, male, 64, GOLD II). Mental fatigue was associated with worrying and symptoms of depression that increased with inactivity and it was associated with decreased motivation to undertake activities: “This has more to do with gloominess. You are not really depressed but you feel down. Then you do not have any spark or energy to do things. No motivation.” (P10, female, 64, GOLD III).
Physical vitality was described as the capability to participate in physical and social activities, having no physical limitations: “When you feel vital you can handle anything. You do not have any physical barriers and everything is going much smoother.” (P4, female, 62, GOLD III). Mental vitality was associated with feeling energetic and motivated to undertake activities: “They [people who feel mentally vital], also feel more comfortable about themselves than I do.” (P2, female, 52, GOLD IV). “That I am energetic and feel like doing things. That I do not feel down. Once you feel down you just do not feel like doing anything, regardless how fit you are.” (P10, female, 64, GOLD III).
Sleepiness was described as the feeling you get when you have had a sleepless night, heavy eyelids and no motivation to stay awake: “Fatigue is really not putting one foot in front of the other. Sleepiness is simply that you do not feel like staying awake anymore, because you want to sleep or your eyes are tangled with sleep. That is a completely different way of tiredness.” (P11, female, 65, GOLD III). Sleepiness could be resolved by getting a good night's sleep. However, their fatigue was still present when they woke up and remained with them day and night.
3.3 Perceived characteristics of fatigue
3.3.1 Start of fatigue symptoms
Regarding the start of fatigue symptoms, 15 out of 20 respondents answered with a general description of a time period and not with a clear starting point. They emphasized the process of increasing fatigue: “It sneaks into your life, it goes very slowly. You sit down more often because you are in pain and short of breath. You cannot do anything anymore, so you become more and more tired.” (P7, male, 64, GOLD II). Despite fatigue being described as gradually increasing by a majority of patients, five respondents described a triggering event (e.g., a severe COPD exacerbation causing a hospital admission, or heavy physical activity) as starting point for a sudden increase in fatigue. “Actually, the complaints started since the last time I was hospitalised. In 2015, two years ago.” (P3, female, 59, GOLD IV).
3.3.2 Fluctuations in fatigue symptoms
The burden of fatigue was perceived to be susceptible to change. Respondents pointed out that they experienced positive as well as negative fluctuations in the burden of fatigue due to weather conditions: “During the summer I did not even need medication, nothing was wrong. When the weather is nice you do not feel tired and you do not have any complaints.” (P1, male, 57, GOLD IV). “When the weather is drizzly, it [the fatigue] is much worse. Also during the winter period or when it is really hot, I am much more tired. So when it is too hot, too wet or too cold, I cannot go outside anymore.” (P5, male, 65, GOLD II). Fatigue symptoms were perceived to increase directly when pulmonary function decreased due to bad weather conditions.
Furthermore, patients perceived a decrease in fatigue due to positive changes in their mental state: “Then [when I feel happy] I can enjoy all those little things, the house, everything. Then I feel less tired and much happier.” (P13, female, 85, GOLD III).
3.3.3 Causes of fatigue symptoms
All respondents mentioned COPD, and resulting dyspnea, as the main cause of their daily fatigue: “You really get tired also because of that shortness of breath, of course.” (P6, male, 65, GOLD III). In addition, over-activity was mentioned as a cause of fatigue due to oxygen deficiency: “And yes, I feel tired right now because I went too far and continued for too long. At this moment this fatigue and shortness of breath is not getting any better. “ (P1,male, 57, GOLD IV). In contrast to overactivity, also inactivity was mentioned as a cause of fatigue due to worsening physical condition: “When I got stuck at home [due to the consequences of COPD] and could not do or undertake anything anymore. That also contributes a lot to my fatigue.” (P3, female, 59, GOLD IV). Furthermore, medication use and lack of sleep were mentioned as causes of fatigue: “It is the medication, doing too much, not sleeping properly. One body has to cope with all these things and that body is already very sick. That does not make it any easier.” (P5, male, 65, GOLD II). The majority of participants had comorbidities that were experienced as factors worsening their fatigue: “Because of my rheumatoid arthritis I have pain when I get up and when I go to bed, the pain is still there. That also worsens my fatigue.” (P4, female, 62, GOLD III).
3.4 Perceived limitations in daily life due to fatigue
The negative impact of fatigue on patient's daily lives manifests itself in several limitations. All patients mentioned household tasks to be too physically demanding: “I have been getting house help since last year. I feel really terrible about it, but I cannot manage it myself anymore.” (P11, female, 65, GOLD III). Patients were even restricted in personal hygiene. Taking a shower or walking a few steps to the toilet was already too much to ask of these patients: “I cannot wash myself. I have to recover after taking a shower (…) When I go to the toilet, I am totally exhausted. Then I just go back to bed. Even eating makes me dead tired.” (P18, female, 71, GOLD III). Physical limitations focused mainly on restrictions in walking and moving: “Because of the fatigue I cannot stand by myself. I have no strength or energy to stop my body from falling down.” (P16, male, 67, GOLD III). Furthermore, decreased physical health resulting in muscular pain can also be an indirect consequence of fatigue: “I cannot stand for too long, or sit or lie down for too long. Then it starts to hurt in my lower back or I get cramps.” (P16, male, 67, GOLD III).
Fatigue is reported to have an influence on multiple aspects of the social network of patients. They often cannot participate in social activities due to fatigue: “[Interviewer:] “To what extent has your life changed due to your fatigue complaints? [Patient:] It is more about not being able to participate. (…) Family celebrations, going into town. (…) You really want to participate very fanatically and at some point you have to drop out.” (P2, female, 52, GOLD IV). This lead to social isolation and feelings of loneliness: “I do think that you slowly become isolated from your social environment. You can no longer go to the market, or visit family. (…) I can barely go outside or meet up with people. Total isolation.” (P7, male, 64, GOLD II). “I am really a people's person and I miss that. The sicker you become, the more your social network decreases. It becomes very small.” (P13, female, 85, GOLD III).
The daily limitations due to fatigue cause a heavy mental burden. A majority of patients mentioned that they had, to some degree, lost the joy in life or in some cases, even lost the will to live: “I do not understand either why I always feel so tired. (…) You do not just quit your life because you are tired, but sometimes it crosses my mind. It hurts so much that you cannot do anything anymore. (…) What a bad life.” (P3, female, 59, GOLD IV).
3.5 Treatment preferences for fatigue in COPD
As an effective method to tackle fatigue, improving their physical condition was mentioned by multiple respondents. Motivating patients to exercise, creating rehabilitation possibilities and improving breathing technique were mentioned: “I actually just miss some possibilities for rehabilitation. (…) Exercising under supervision because you are more vulnerable. Exercising under expert guidance, focusing on your breathing. (…) That way you also slightly reduce your fatigue. By exercising more, your fatigue will decrease.” (P7, male, 64, GOLD II). However, it was also emphasized that some patients were not capable of exercising and an individual, tailored treatment plan should be developed which focuses on individual capabilities and positive thinking: “Guidance on what you can still do! Look on the bright side. Slowly getting better. That is what we need.” (P13, female, 85, GOLD III).
In addition, social support was mentioned to be important to help cope with the mental burden: “These social contacts (…) are important. (…) That you learn from each other which tips are useful and practical.” (P1, male, 57, GOLD IV). Furthermore, patients wished that healthcare professionals would listen to them and recognize the impact of fatigue and its severity. Patients needed to feel understood: “Initially, I need sympathy and tips on how to deal with it [fatigue].” (P10, female, 64, GOLD III). However, they reported that fatigue is often not even mentioned during consultations with a pulmonologist. When patients try to talk about their fatigue complaint, they often feel ignored by their healthcare professional: “But the pulmonologist, he says very little. He never answers when you say that you are very tired. He completely ignores it.” (P8, male, 74, GOLD III). In contrast to the pulmonologist, patients mentioned that physiotherapists, psychologists, and respiratory nurses did invest time to discuss fatigue and possible coping strategies: “For practical things, [visit] a physiotherapist and also a pulmonary nurse. They really know what they are doing and they have all sorts of useful tips on how to cope with it and they show sympathy.” (P10, female, 64, GOLD III).
Next to face-to-face contact, self-management of COPD was mentioned to effectively get a clear overview of their symptom frequency and history: “When you fill in [the frequency of] your fatigue symptoms, you can see the negative and positive consequences online. You can see […] whether you distribute your energy properly. You can also see for what kind of activities you need more energy. It makes it very clear.” (P11, female, GOLD III). In addition, the combination of face-to-face contact and online self-management programs was mentioned to possibly be effective in addressing fatigue during a consultation and offering a form of social support by the healthcare professional: “If you combine those quick online insights with a consultation with your physician, I think my fatigue would have been discovered much sooner.” (P1, male, 57, GOLD IV). “If you can assess the fatigue [within an online self-management program] this way, with the social support of other healthcare professionals, then this combination could be quite effective.” (P7, male, 64, GOLD II).
4. Discussion
The purpose of this study was to examine the patient's perspective on COPD-related fatigue, its impact on daily life and possible treatment opportunities to tackle the burden of fatigue. Current findings indicate that patients found the impact of fatigue on their daily functioning to be a key factor in decreasing their quality of life. Fatigue is described as being different from sleepiness in quality, quantity and intensity. COPD-related fatigue is physically and mentally far more demanding for patients than sleepiness is. It has a negative impact on patient's daily lives, on their physical functioning and on their emotional well-being. This is in line with results from a previous study [
[3]
], which stated that fatigue influences physical, cognitive, and psychological functioning. However, the current study also showed extreme limitations in social functioning, causing social isolation, feelings of loneliness and a high mental burden. Furthermore, patients mentioned losing the joy in life due to fatigue. A negative mood and especially symptoms of depression caused or reinforced demotivation to undertake activities. Multiple studies support these findings. They stated that all these limitations, including social isolation, can lead to anxiety and depression [[8]
,[9]
]. Fatigue negatively influenced multiple aspects of patient's lives, making it a multifactorial symptom which challenges patient's coping resources. It was expected to find detectable differences in the experienced fatigue between inpatients and outpatients, due to the increasing fatigue that is often experienced by inpatients when hospitalised for a COPD exacerbation [[2]
]. However, after exploring possible differences, there was no such difference found between the two groups. This could be partly due to the selection of more GOLD IV stage patients in the outpatient group, who possible experience more fatigue in daily life. Furthermore, the interview with the inpatients did not only focus on the current fatigue experiences but also on the more chronic experiences which could also explain why the fatigue experience was comparable.According to patient's views, fatigue symptoms cannot be treated with the usual COPD treatment. Awareness needs to be raised in both healthcare professionals and patients about the impact of fatigue, its severity, and it being a frequent symptom of COPD. Currently, the topic of fatigue is mostly not discussed within consultations with a pulmonologist. Patients mentioned the need to feel understood and recognized by their healthcare professionals. Therefore, professionals should take the responsibility to adopt a pro-active approach in recognizing severe fatigue symptoms. Furthermore, treatment for COPD patients should also focus on prevention whenever possible, in which patients need to be informed about fatigue being a frequent symptom of COPD at an early stage of their disease. In addition, treatment should provide patient education and self-management tools to prevent worsening of fatigue and support vitality. When patients report severe fatigue, the pulmonologist can refer patients to suitable healthcare professionals (e.g. physiotherapists, psychologists, or respiratory nurses) who can help recognize and increase patients coping resources.
The patients that were interviewed in this study were a representative sample to describe consequences for COPD treatment in secondary care. Almost all patients suffering from increasing fatigue. Therefore, the results of the current study cannot directly be generalized to COPD treatment in primary care. Furthermore, the findings of the current study should be confirmed in other countries, since COPD care is not the same in all countries.
The current COPD treatment in secondary care is mainly focused on respiratory symptoms and has to deal with several time and costs constraints. Current treatment also frequently applies self-management programs focused on respiratory symptoms that are more cost- and time effective and are associated with improving health-related quality of life of patients [
[5]
]. This creates a possibility for fatigue treatment to involve self-management programs focusing on fatigue into blended, personalized care. Development of education for health professionals to facilitate fatigue self-management in patients (including help to increase physical condition, mood, motivation, and social support) is necessary. COPD-related fatigue is a symptom that needs to be treated with a multidisciplinary approach to meet the patient's needs in tailoring and personalizing treatment on physical capabilities and psychosocial needs.5. Conclusions
COPD-related fatigue causes a severe, negative impact on the physical, emotional, cognitive and social functioning of all respondents. These limitations in daily functioning negatively influence the quality of life of patients and bring along a heavy mental burden, decreasing patients' joy in life and even, in some cases, their will to live. Patients mentioned the need for effective treatment, mainly focusing on physical rehabilitation and increasing social support. This study underlines the importance of a pro-active, multidisciplinary approach which focuses on prevention when developing effective, tailored treatment. It is recommended that awareness is increased in healthcare professionals and patients of the existing impact of fatigue on daily lives and its multifactorial nature.
Appendix A. Supplementary data
The following are the supplementary data related to this article:
- Dataprofile
- Online Appendix_code scheme
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Article info
Publication history
Published online: June 14, 2018
Accepted:
June 12,
2018
Received in revised form:
June 11,
2018
Received:
March 29,
2018
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