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Fatigue in patients with Chronic Obstructive Pulmonary Disease
Marileen Kouijzer
Master’s thesis September 15, 2017 Marileen Kouijzer (S1454196) Master: Health Psychology & Technology
Internal organization: University of Twente External organization: Medical Spectrum Twente
Internal supervisors: 1st. Dr. Christina Bode 2nd. Dr. Stans Drossaert External supervisor: Dr. Marjolein Brusse-Keizer
Faculty of Behavioural, Management and Social sciences
A qualitative study on the perspective of the COPD patient on the impact of fatigue on their daily life
Abstract
Background. Fatigue in patients with Chronic Obstructive Pulmonary Disease (COPD) is a problematic symptom. Patients experience fatigue as a key factor that negatively influences their daily lives.
Currently, no effective treatment options are available for patients with COPD to tackle the burden of fatigue. The aim of this study is to explore the impact of fatigue from a patients‟ perspective and address treatment preferences, emphasizing the use of self-management and eHealth.
Methods. Semi-structured interviews were conducted with twenty COPD patients, varying in terms of age, gender, and GOLD stage. The interview consisted of eighteen open-ended questions with sub questions about the definitions of fatigue, vitality and sleepiness, fatigue as a symptom, and its impact on the daily lives of patients. Furthermore, questions about treatment and communication preferences were asked, including self-management and eHealth possibilities. The interviews lasted up to 70 minutes, were audio-recorded, transcribed verbatim and analysed by one coder using an iterative process, which combined deductive and inductive coding.
Results. In this study, patients perceived severe impact of fatigue on their physical, psychological and social functioning. They experienced severe limitations in their daily lives. These limitations caused a high mental burden and make fatigue a challenging symptom to cope with. COPD patients mentioned the need for effective treatment. Emphasizing the importance of increasing physical function, motivation and social support. The opinion of patients on the use of self-management and eHealth to ease the
burden of fatigue differed among individuals. Multiple advantages and disadvantages were mentioned.
Overall, patients emphasized tailored treatment and blended care as effective options to tackle the burden of fatigue.
Conclusion. These findings indicate that the COPD patients in this study found the impact of fatigue on their daily functioning to be a key factor in decreasing their quality of life. This study gives insight in the limitations they experience due to fatigue and the way they cope with this burden. Awareness needs to be created in both healthcare professionals and patients about the impact of fatigue, and it being a frequent symptom of COPD. In addition, a pro-active, multidisciplinary approach is needed to develop tailored treatment which focuses on prevention of fatigue, rather than treating the severe burden of fatigue when the disease progresses.
Keywords. COPD-related fatigue; Impact fatigue; Patients’ perspective; eHealth; self-management;
Chronic Obstructive Pulmonary Disease; multidisciplinary approach
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Samenvatting
Achtergrond. Vermoeidheid bij patiënten met Chronic Obstructive Pulmonary Disease is een
problematisch symptoom. Patiënten ervaren vermoeidheid als een belangrijke factor die een negatieve invloed heeft op hun dagelijks leven. Momenteel zijn er geen effectieve behandelmethoden beschikbaar voor patiënten met COPD om de last die vermoeidheid met zich meebrengt aan te pakken. Het doel van dit onderzoek is om de impact van vermoeidheid in kaart te brengen vanuit het perspectief van de patiënt. Daarnaast wordt onderzocht wat de behandelvoorkeuren van de patiënt zijn, gefocust op het gebruik van zelfmanagement en eHealth om vermoeidheid aan te pakken.
Methode. Semi-gestructureerde interviews zijn afgenomen bij twintig COPD patiënten, die varieerden in leeftijd, geslacht en GOLD stadium. Het interview bestond uit achttien open vragen met sub vragen over de definitie van vermoeidheid, vitaliteit en slaperigheid, vermoeidheid als een symptoom van COPD en de impact die het heeft op het dagelijks leven van de patiënt. Daarnaast zijn er vragen gesteld over behandeling en communicatie voorkeuren, inclusief zelfmanagement en eHealth mogelijkheden. De interviews duurden maximaal 70 minuten, zijn opgenomen met audioapparatuur, verbatim
getranscribeerd en geanalyseerd door één onderzoeker in een iteratief proces. Inductieve codering werd gecombineerd met deductieve codering.
Resultaten. Patiënten gaven in dit onderzoek aan dat vermoeidheid impact heeft op hun fysiek, psychologisch en sociaal funcioneren. Ze voelen zich hierdoor beperkt in hun dagelijks leven. Deze beperkingen zorgen voor een grote mentale last en dat maakt dat vermoeidheid een moeilijke klacht is om mee om te gaan. COPD patiënten benoemen de behoefte aan een effectieve behandeling. Het verbeteren van de fysieke conditie, motivatie en sociale ondersteuning werd benadrukt. De mening van de patiënten over het gebruik van zelfmanagement en eHealth in een behandeling tegen vermoeidheid verschilt. Meerdere voor- en nadelen werden benoemd. Over het algemeen benadrukken patiënten een gepersonaliseerde behandeling en blended care als effectieve mogelijkheiden om vermoeidheid te kunnen verminderen.
Conclusie. Deze resultaten geven aan dat de COPD patiënten uit dit onderzoek de impact van
vermoeidheid op hun dagelijks functioneren zien als een belangrijke factor die de kwaliteit van leven aanzienlijk verminderd. Dit onderzoek biedt belangrijke informatie over de beperkingen die patiënten ervaren in hun leven en de manier waarop ze daarmee omgaan. Bewustwording moet gecreëerd worden in zorgprofessionals, maar ook in patiënten, over de impact die vermoeidheid kan hebben en het feit dat vermoeidheid een frequent symptoom van COPD is. Bovendien, is er een pro-actieve, multidisciplinaire aanpak nodig om gepersonaliseerde behandelopties te ontwikkelen die focussen op de preventie van vermoeidheid, in plaats van het behandelen van vermoeidheid in een verder gevorderd stadium.
Trefwoorden. Vermoeidheid bij COPD; Impact vermoeidheid; Patiëntperspectief; eHealth;
zelfmanagement; Chronic Obstructive Pulmonary Disease; multidisciplinaire aanpak
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Content
Introduction ... 3
Chronic Obstructive Pulmonary Disease ... 3
Fatigue in Chronic Obstructive Pulmonary Disease ... 5
Patient perspective on COPD-related fatigue ... 6
Self-management to address decreased vitality and fatigue ... 7
eHealth to address decreased vitality and fatigue ... 8
Current study ... 9
Methods ... 9
Participants... 10
Materials ... 11
Procedure ... 11
Analysis ... 12
Results ... 13
1. Definitions and differences between fatigue, decreased vitality and sleepiness... 13
2. The start, causes and fluctuations of fatigue ... 15
3. Impact of fatigue on the life of COPD patients... 18
4. Treatment options to tackle the burden of fatigue and improve vitality ... 24
Discussion ... 33
References ... 39
Appendix ... 44
Appendix A. Informatiebrief onderzoek „Van vermoeid naar vitaal!‟ ... 44
Appendix B. Informed consent ... 47
Appendix C. Medisch Ethische Toetsingscommissie (METC) ... 48
Appendix D. Interview schedule ... 49
Appendix E. Codescheme ... 53
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Introduction
Fatigue in Chronic Disease
A chronic disease can have a major impact on the physical and psychological health of patients. Chronic disease is defined as an inherently aversive, long-term condition with a relatively high degree of
uncontrollability and unpredictability (Evers, Kraaimaat, Van Lankveld, Jongen, Jacobs & Bijlsma, 2001). In 2014, 8.2 million inhabitants of the Netherlands had one or more chronic diseases. (RIVM, 2014). Living with a chronic disease has a major impact on the quality of life of patients and this deteriorates with disease severity and age (Ståhl et al., 2005; Peruzza et al., 2003).
In addition to decreased quality of life, one of the most common complaints among patients with a chronic disease is fatigue (Swain, 2000). Due to its subjective nature and differences in interpretation and assessment, fatigue is difficult to define and to characterize (Lewko, Bidgood, Jewell & Garrod, 2012). It has been medically defined as „the state, following a period of mental or bodily activity, characterized by a lessened capacity of work and reduced efficiency of accomplishment, usually
accompanied by a feeling of weariness, sleepiness or irritability‟ (Hensyl, 1989). It consists of complex interactions between behavioural, psychosocial and biological processes (Swain, 2000). Patients with a chronic disease rate fatigue often as one of the key factors leading to a decrease in quality of life (Swain, 2000). In addition, the lack of specific, evidence-based treatment options makes it a symptom that is often ignored or overlooked by healthcare professionals (Swain, 2000; Spruit, Vercoulen, Sprangers &
Wouters, 2017).
Chronic Obstructive Pulmonary Disease
Fatigue is often described by patients as a lack of energy, as is the term subjective vitality. These terms are in some cases difficult to distinguish, because of the overlapping vocabulary used in defining them.
In the current study, the term fatigue is used to describe the Chronic Obstructive Pulmonary Disease- related fatigue (COPD-RF). The term subjective vitality is used to describe a positive feeling of aliveness and of possessing personal energy (Ryan & Frederick, 1997). The patients‟ perspective on these terms can provide input for adequate healthcare and may guide treatment priorities (Van Manen et al., 2003).
Patients with COPD also suffer from fatigue. (Baltzan et al., 2011). According to the World Health Organization (2016), COPD is a progressive lung disease characterized by chronic obstruction of lung airflow that interferes with normal breathing and is not fully reversible. Physical symptoms of
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COPD mainly consist of coughing, sputum production and dyspnoea (World Health Organization, 2016). The World Health Organization (2016) predicts that in 2020, COPD is the third cause of death and rank fifth as a worldwide burden of disease (Pauwels, Buist, Calverley, Jenkins & Hurd, 2012). The primary cause of COPD is tobacco smoke and the prevalence of COPD in smokers is 10-15% (Geijer et al., 2005). The prevalence of COPD is increasing worldwide (Waatevik et al., 2013). According to the RIVM (2016), in the Netherlands, about 607.300 people have COPD.
The Global Initiative for Chronic Obstructive Lung Disease (GOLD) has constructed guidelines for the assessment and management of patients with COPD. The most important practical aspect of these guidelines was that COPD is classified by severity into four stages, which constitute the basis of
treatment recommendations. (Köhler, Fischer, Raschke & Schönhofer, 2003). However, recent developments show that the airway obstruction is no longer the only central aspect in the standard of care of COPD. This chronic disease is complex and heterogeneous, and the airflow limitation is poorly related to many other clinically relevant aspects of COPD (Agusti et al., 2013). Therefore, new
guidelines were developed. The new guidelines consider the symptoms, the symptom burden, the exacerbation risk, and the possible comorbidities. The refined assessment process according to these new guidelines is shown in figure 1 (GOLD, 2017).
Figure 1. New GOLD ABCD Assessment Tool (GOLD, 2017)
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Fatigue in Chronic Obstructive Pulmonary Disease
In the current study, the term fatigue is used to describe the Chronic Obstructive Pulmonary Disease- related fatigue (COPD-RF). This fatigue is an increasing problem for COPD patients and this becomes clear in a study of Tselebis et al. (2011). Fatigue was present in their whole research population, consisting of 139 COPD outpatients from one of the largest respiratory diseases hospitals in Greece. In addition, a study of Theander and Unosson (2004) showed that half of their research population, consisting of COPD patients, reported fatigue every day during the preceding month, compared to 13.5% in the control group without COPD. Furthermore, 52.7% of the COPD patients reported that the duration of fatigue was more than six hours a day and 44.4% reported that fatigue was the worst symptom they had. At last, patients reported significantly greater impact of fatigue on physical, cognitive and psychosocial functioning compared to the control group. The control group consisted of individuals without COPD and with the same age and gender as the patients (Theander & Unosson, 2004).
Fatigue in COPD patients remains poorly understood as a distinct symptom, separate from other psychological and physiological symptoms, which are frequently associated with COPD. These
psychological symptoms can be depression, anxiety, and emotional stress. Physiological symptoms can be an increase in severity of pulmonary impairment and reduction in exercise tolerance (Breslin et al., 1998). Fatigue may be sought in a combination of all these factors, reflecting the multidimensional nature of the symptom (Spruit, Vercoulen, Sprangers & Wouters, 2017). Additionally, COPD is associated with important chronic comorbid diseases, such as cardiovascular disease, diabetes and hypertension, which could also contribute to fatigue (Mannino, Thorn, Swensen & Holguin, 2008).
The current study focuses on COPD-related fatigue. However, fatigue is often difficult to distinguish from decreased subjective vitality. Patients who experience fatigue, also often suffer from decreased vitality due to COPD. Decreased vitality in COPD patients, also described as a lack of energy (Breslin et al., 1998), can have multiple causes. In COPD, respiratory symptoms, like dyspnoea, are associated with an increase in energy consumption and exercise limitations (Aliverti & Macklem, 2008).
This results in peripheral muscle weakness which also contributes to a decrease in subjective vitality (Breslin et al., 1998; Spruit, Gosselink, Troosters, De Paepe & Decramer, 2002). Furthermore, the exacerbations most COPD patients experience have significant negative effect on subjective vitality (Esteban, 2009). According to Wedzicha and Seemungal (2007), COPD exacerbations are triggered mainly by respiratory bacteria and viruses. In addition, it can also be triggered by cold weather or over-
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activity in COPD patients (Watz, Waschki, Meyer & Magnussen, 2009; Donaldson & Wedzicha, 2014).
In the current study, it is important to clearly describe the difference between fatigue and vitality to develop effective treatment options to tackle the burden of fatigue. It is beneficial to research the perspective of the patient on the definitions of fatigue and vitality based on their own experiences.
Patient perspective on COPD-related fatigue
In contrast to the poorly understood symptom that COPD-related fatigue is (Swain, 2000), the percentages of patients who report this symptom are significant. However, there are still no evidence- based treatment options for COPD patients to cope with this burden. To decrease fatigue in COPD patients, treatment should not only be directed towards pulmonary function (Van Manen et al., 2003).
Rather, treatment should be focussed on addressing all of the patients‟ symptoms, including
psychological aspects (Van Manen et al., 2003; Theander & Unossen, 2011). The patients‟ perspective on this burden can be of great value in developing effective treatment. The importance of healthcare professionals listening to the perspective of the patient is often overlooked. According to Jagosh, Boudreau, Steinert, MacDoland & Ingram (2011), patients explained that listening is an essential component of clinical data gathering and diagnosis. However, listening to the patients‟ perspective can also function as a healing and therapeutic agent. Lastly, focusing on the patients‟ perspective can
strengthen the patient-provider relationship. To communicate fatigue with the patient, knowledge should be increased on the impact of fatigue on the daily life of the patient, on their social life, and on their treatment preferences. Who better than the patients themselves to describe these aspects?
COPD-related fatigue has increasingly been recognised as an important area of research (Lewko, Bidgood, Jewell and Garrod, 2012). A study from Kappella et al. (2006) reported that 70% of the COPD patients that took part in their research stated that “current fatigue is different in quality and intensity than the fatigue they experienced before developing this condition”. The impact of fatigue is clear in a study from Ream and Richardson (1997), whereby COPD patients described fatigue as a feeling of
„exhaustion‟, which decreases their concentration and motivation to “get up and go”. The same study stated that fatigue increases the feeling of depression, low self-esteem and constant low mood. Fatigue is a multi-component symptom that reflects aspects of motivation, mood states, cognitions and physical ability (Lewko, Bidgood, Jewell & Garred, 2012). To conclude, it is clear that fatigue has a negative impact on patient outcomes. However, it remains unclear how fatigue exactly affects the daily life of COPD patients and what physical, social, and emotional challenges this entails. In addition, treatment
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preferences of patients should be explored to create input for effective treatments. Current research on the patients‟ perspective is needed to explore this impact, and how it can be decreased to improve quality of life and subjective vitality.
Self-management to address decreased vitality and fatigue
It is important to offer the best possible treatment available to COPD patients who suffer from fatigue (Lorig, Sobel, Ritter, Laurent & Hobbs, 2000; Effing et al., 2007). The problem is that there are no evidence-based treatments for treating fatigue of COPD patients. Furthermore, healthcare professionals do not always know how to cope with fatigue as a symptom, how to communicate it with the patient and what treatment should be offered (Swain, 2000). Self-management is of increasing importance in COPD management. According to Effing et al. (2016), the definition of a COPD self-management intervention is; “A COPD self-management intervention is structured but personalised and often multi-component, with goals of motivating, engaging, and supporting the patients to positively adapt their health
behaviour(s) and develop skills to better manage their disease. The goals of self-management in COPD are optimising and preserving physical health, reducing symptoms and functional impairments in daily life and increasing emotional well-being, social well-being and quality of life. The process of self- management requires iterative interactions between patients and healthcare professionals. These patient- centered interactions focus on identifying needs, health beliefs and enhancing intrinsic motivations. Also eliciting personalised goals, formulating appropriate strategies to achieve these goals, and evaluating and re-adjusting strategies.” This definition is based on an international expert group consensus. An
increasing number of healthcare professionals agree that patients with COPD should receive support to help them cope with their disease (Bourbeau & Van der Palen, 2009).
Additionally, self-management interventions exert positive effects in COPD patients on
respiratory-related and all-cause hospitalization. Modest improvements in health-related quality of life are also stated in research of Jonkman et al. (2016). However, fatigue is not frequently integrated within self-management interventions, because the current focus lies on exacerbations and dyspnoea as a primary activity-limiting symptom (Effing et al., 2016; Breslin, 1998). Given the high levels of fatigue in COPD patients and its relation to functional patient outcomes, the self-management of fatigue requires serious consideration (Breslin, 1998). Patients have extensive experience in managing the disease and possibly are able to verbalize the coping strategies (Fraser, Kee & Minick, 2006).
Incorporating these aspects in treatment can motivate patients to cope with their illness and change their
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health behaviour. The study of Effing et al. (2016), states that the patients‟ perspective may not fit into the professionals‟ perspective and may change during the different stages of COPD, and between individual patients. This should be taken into account when developing self-management interventions.
In conclusion, self-management interventions could be of great value to patients with COPD to improve their health-related quality of life (Zwerink et al., 2014). However, it is not clear which specific
components could be of value for different types of COPD patients (Bourbeau & Van der Palen, 2009) and in which way fatigue should be addressed by self-management. Therefore, more insight into the patients‟ perspective is needed on their treatment preferences and on which self-management
components could be most effective in tackling the burden of fatigue and increasing subjective vitality.
eHealth to address decreased vitality and fatigue
A possibility to address fatigue in self-management treatment is eHealth. It can be of great value to patients to manage their symptoms. The definition of eHealth given by Eysenbach (2001) states:
“eHealth is an emerging field in the intersection of medical informatics, public health and business, referring to health services and information delivered or enhanced through the Internet and related technologies.” Additionally, eHealth is a dynamic environment and constantly moving. It should be defined by how it is used (Eysenbach, 2001). An example of an existing eHealth programme for self- management of COPD exacerbations and an active lifestyle is called the Condition Coach (CoCo). This telehealth programme consists of a web-based exercise programme, an activity coach and a
teleconsultation module for asking questions to the patient‟s primary care physiotherapist, via a web portal. The last component is a module for the self-treatment of COPD exacerbations. Patients have to fill in an online diary, and then a decision-support system automatically forms an advice. For example, in case of worsening of the condition of the patient, the advice can be to start medication (Tabak et al., 2013). Before starting with Condition Coach, all patients had to participate in a training on how to use CoCo. Although this programme does focus on COPD patients, it is not addressing fatigue as a distinct symptom.
eHealth has the potential to improve health and deliver value in disease management, telehealth, patient safety, and decision support (Silber, 2003). Other advantages focus on blended care, as eHealth could provide an addition to face-to-face consultations and creating favourable circumstances for strengthening patient participation (Townsend, Adam, McDonald & Backman, 2013). There are also disadvantages of using eHealth. It may disturb the patient-provider relationship and it demands more
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frequent and intense participation of the patient (Townsend, Adam, McDonald & Backman, 2013), which can form a problem with patients that suffer from extreme fatigue. Additionally, all patients need to have access to internet, via a computer, tablet or smartphone.
Self-management applications using eHealth to monitor chronic conditions have shown a positive clinical effect in systematic reviews on patient management (Townsend, Adam, McDonald &
Backman, 2013). According to research from Thorndike et al. (2013), internet interventions can reduce fatigue symptoms in patients with insomnia. According to Seiler, Klaas, Tröster and Fagundes (2017), fatigue can also decrease as a consequence of eHealth interventions in cancer patients. However, there is no record yet of decreasing fatigue as a consequence of eHealth interventions in COPD patients. In the current study, COPD patients are invited to share their ideas on effective components in eHealth and self-management interventions that can decrease the burden of fatigue and increase subjective vitality.
Current study
The current study investigates the patients‟ perspective on fatigue and subjective vitality and its impact on daily life of COPD patients. Moreover, patients‟ treatment preferences to tackle the burden of fatigue are researched. The following research questions are answered in this study:
1. What is the patients’ perspective on the definitions and differences between fatigue, decreased 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, emphasizing eHealth and self-management interventions?
Methods
To answer these research questions, a qualitative study among COPD patients, both inpatients and outpatients, using semi-structured interviews was conducted. The Medical Ethical Review committee of Medical Spectrum Twente decided that the current study was not complying with the Dutch law on Medical Research on Human subjects (Appendix C - File reference number: K16-58). Meaning that there were no medical or ethical objections to perform this research.
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Participants
The recruitment of patients was carried out by purposive sampling, to identify and select the most information-rich cases. Patients were selected based on shared characteristics, which formed the inclusion criteria. These criteria were: (1) COPD patients who were under supervision of a respiratory physician at Medical Spectrum Twente (2) and suffered from fatigue. Furthermore, (3) 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. Since, lung cancer and sleep apnoea can trigger fatigue. However, this fatigue is difficult to distinguish from COPD-related fatigue. Therefore, these patients were not suitable for this study. Patients with cognitive impairments were excluded because participants needed to be capable to understand and answer all interview questions. The
pulmonary research department selected outpatients and a physician assistant selected inpatients. A total of 23 patients were approached to take part in the interview study, 20 patients agreed to participate (Table 1). Reasons for non-participation were; no present fatigue symptoms or being too sick to participate in an interview. The group consisted of 8 men and 12 women, with an average age of 67.7 years (SD 7.6). The participants had no personal relationship with the interviewer. Only the name, the education, and the position of the interviewer within the organization were known to the patients.
Table 1
Patient characteristics
Respondent number
Gender Age In-/Outpatient GOLD stage Comorbidities
1 Male 57 Outpatient GOLD 4 Tinnitus
2 Female 52 Outpatient GOLD 4 Dystrophy
3 Female 59 Outpatient GOLD 4 Sjorgen’s
syndrome
4 Female 62 Outpatient GOLD 3 Osteoporosis,
Arthritis, Fibromyalgia
5 Male 65 Outpatient GOLD 2 Cardiac
arrhythmia
6 Male 65 Outpatient GOLD 3
7 Male 64 Outpatient GOLD 3 Chronic back pain
8 Male 74 Outpatient GOLD 3 Balance disorder,
Cardiac arrhythmia
9 Male 71 Outpatient GOLD 3 Irritable Bowel
Syndrome
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10 Female 64 Outpatient GOLD 3
11 Female 65 Inpatient GOLD 3 Diabetes
12 Male 72 Inpatient GOLD 2 Cardiac
arrhythmia
13 Female 85 Inpatient GOLD 3
14 Female 64 Inpatient GOLD 2
15 Female 72 Inpatient GOLD 2 Diabetes, Cardiac
arrhythmia
16 Male 67 Inpatient GOLD 3
17 Female 77 Inpatient GOLD 3 Rheumatoid
arthritis
18 Female 71 Inpatient GOLD 3
19 Female 67 Inpatient GOLD 3
20 Female 80 Inpatient GOLD 2 Arthritis
Materials
A semi-structured interview schedule was developed (Appendix D). The schedule was checked and approved by two experts. To improve the research instrument, three pilot interviews took place before the official data collection started. The interview schedule consisted of 18 open-ended questions, with multiple sub questions. Firstly, demographic questions were asked. Followed by questions about the definitions and differences between fatigue, vitality and sleepiness, to see the patients‟ perspective on these constructs. Fatigue was discussed, the symptom, its impact, and its characteristics. Subsequently, current coping strategies of the patient on how to deal with fatigue were discussed. The interview closed with questions about current communication about fatigue, treatment preferences, and advantages and disadvantages of self-management and eHealth interventions in tackling the burden of fatigue. Patients were shown the eHealth example of CoCo (condition coach) and encouraged to name improvements of the design based on their own needs. The participants were often asked to elaborate on their answers and to give examples, to further explore their opinion on the topic. The interviews were recorded with a voice-recorder.
Procedure
In total, twenty interviews took place in a private environment, of which eleven interviews in the
GOLD 1 = Mild, GOLD 2 = Moderate, GOLD 3 = Severe, GOLD 4 = Very Severe
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hospital (ten inpatients, one outpatient), and nine interviews at the patients‟ home. Before the start of the interview, the participants had read the information letter (Appendix A), about the aim of the study and how the results would be processed. The researcher answered any questions patients had and then asked them to sign the informed consent form (Appendix B). Afterwards, the researcher clearly communicated with the patient that the interview was about to begin and that the audio recorder started. During the interviews, there were no non-participants present except the interviewer. This way, respondents could talk openly and did not have to feel reserved in answering questions. The interview went on until all questions were answered, to the point that there was no new information coming from the patient.
Participants were offered the option to get feedback on the results of the current study.
Analysis
The audio recordings were transcribed verbatim by the researcher. To guarantee anonymity of the respondents, their names and any other personal information were removed. The researcher was the only one that transcribed and coded all interviews. The data analysis was an iterative process, in which deductive- and inductive coding were combined. First, the researcher read all transcripts thoroughly to ensure familiarization with the data. The transcripts were coded using qualitative data analysis and research software; ATLAS.ti 8.0. First, based on the suitability to answer the research questions, relevant categories were deductively selected to build a preliminary organizing framework. The following main categories were created: (1) Definitions and differences between fatigue, decreased vitality, and sleepiness; (2) Characteristics of fatigue; the start, the causes, and its fluctuations; (3) The impact of fatigue on the life of COPD patients; (4) Treatment options to tackle the burden of fatigue, emphasizing eHealth, self-management, and blended care.
Furthermore, with inductive coding analysis, subdomains were selected using constant comparison between interview transcripts. Initially, the researcher coded three interviews using a
concept coding scheme. This coding scheme was adjusted after a discussing with the research team. The transcripts were coded and compared until the saturation point at which no new themes related to the research question became apparent in the data. A coding tree was developed (Appendix E), in which the code levels, codes, and remarks or discussion points were documented. The unit of analysis to which the codes were applied were often multiple phrases to give information about the context and add meaning to the coding. Subsequently, the analysed transcripts were divided into two groups to determine any differences in answers between patients with GOLD 2 and patients with GOLD 3 or 4. In both groups,
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the same coding scheme was utilized during analysis.
Results
In this section, the results of the interviews are presented. The duration of the interviews was between 14 and 70 minutes. The result section contains the following domains: (1) Definitions and differences between fatigue, decreased vitality, and sleepiness. (2) Characteristics of fatigue; the start, the causes, and its fluctuations; (3) The impact of fatigue on the life of COPD patients; (4) Treatment options to tackle the burden of fatigue, emphasizing eHealth, self-management, and blended care.
1. Definitions and differences between fatigue, decreased vitality and sleepiness based on experience of patients
To answer the first research question: “What is the patients’ perspective on the definitions and differences between fatigue, decreased vitality and sleepiness?” the patients‟ viewpoints on the definitions of fatigue, sleepiness, vitality, and on the connection between fatigue and vitality were analysed.
1.1 Physical and mental fatigue
Physical fatigue was mainly associated with limitations in physical activities. Patients frequently
mentioned the lack of energy: “Dat je de fut niet meer hebt om dingen te doen die je wilt doen. Ja, dat is het belangrijkste. Dat je geen energie hebt.” (P10, female, 64, GOLD 3). It was associated with
exertion: “Erg snel moe met inspanning” (P2, female, 52, GOLD 4), and with the excessive need for rest and sleep: “Pff, veel slapen. Uhm, als je gaat zitten dan slaap je meteen. Veel stoppen tussendoor om te rusten.” (P5, male, 65, GOLD 2). Although a majority of patients described fatigue with physical aspects, one respondent gave a definition of COPD related fatigue focused on mental fatigue.
Associating mental fatigue with worrying, that increased when he was inactive: “Mentale vermoeidheid komt iedere keer weer terug, zodra ik ga zitten begint het, het piekeren. Zolang ik in beweging blijf is er niks aan de hand. (…) Als ik me moe voel en ga zitten dan blijf ik moe.” (P5, male, 65, GOLD 2).
Multiple patients associated mental fatigue with a gloomy, depressive state that demotivates patients:
“Dat heeft meer te maken met somberheid. Dat je dan, niet echt depressief, maar ja somber. Dan heb je ook geen fut of energie om dingen te doen. Geen motivatie.” (P10, female, 64, GOLD 3). In addition, it was mentioned that physical and mental fatigue were related: “Ik denk dat het in relatie tot elkaar staat.
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Als je fysiek moe wordt, dan ben je daar ook met je hoofd mee bezig. Het is een proces van je hele lichaam. Daarna ben ik net zo goed in mijn hoofd moe als in mijn lichaam.” (P7, male, 64, GOLD 2).
1.2 Differences between fatigue, decreased vitality and sleepiness
Table 2
Patients’ associations with fatigue, vitality and sleepiness
According to patients, fatigue is associated with the incapability of engaging in physical activities. Vice versa, when asked to give a definition of physical vitality, patients gave similar answers (Table 2). For example: “Als je vitaal bent, dan kun je alles aan. Dat je geen fysieke drempels hebt en dat alles veel makkelijker gaat.” (P4, female, 62, GOLD 3). “Gewoon dat ze [vitale mensen] van alles en nog wat kunnen doen. Ramen lappen, in de tuin bezig. Voor mij is dat gewoon zo veel moeite. Vooral praktisch.”
(P2, female, 52, GOLD 4). Mental vitality was only described by patients when specifically asked for and patients found it more difficult to define. One patient tried by comparing her mental vitality to that of healthy people: “Ze [vitale mensen] zitten ook wat lekkerder in hun vel dan ik.” (P2, female, 52, GOLD 4). Other patients defined mental vitality as feeling energetic or motivated, in contrast to sad, gloomy, or depressive feelings: “Dat ik energiek ben en zin heb om dingen te doen. Dat ik ook die somberheid niet heb. Als je somber bent, al ben je nog zo fit, je hebt er gewoon geen zin in om iets te doen.” (P10, female, 64, GOLD 3). Thus, while mental fatigue is associated with a gloomy and depressive state, mental vitality is associated with opposite feelings (e.g., feeling energetic and motivated). In addition, when defining physical vitality patients mentioned having no physical limitations, opposite to defining physical fatigue, where patients mainly used physical limitations to explain this symptom.
The overall opinion on the differences between fatigue and vitality was that they were closely
Concept Associated with
Physical fatigue
Mental fatigue
- Feeling of exhaustion and extreme burden on daily life.
- Incapability of engaging in physical and social activities.
- Not being capable to improve physical condition.
- Gloomy, depressive feelings.
- Decreasing motivation to improve physical condition.
Physical vitality Mental vitality Sleepiness
- Capability to engage in physical and social activities.
- Feeling energetic and motivated.
- Feeling after a sleepless night, heavy eyelids and having no motivation to stay awake.
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connected and fatigue had a negative influence on the vitality of patients: “Als dat [vermoeidheid] er niet was geweest, dan was ik veel vitaler geweest om dingen te gaan doen.” (P3, female, 59, GOLD 4) In addition, fatigue was perceived as decreasing the ability to improve vitality by exercising, and decreasing the motivation to improve vitality: “Ik bouw daardoor ook geen conditie meer op door de inactiviteit. Dan wordt de vitaliteit steeds slechter en gaat achteruit door de vermoeidheid. Ik ben moe, beweeg niet, conditie gaat achteruit en voel me minder vitaal.” (P7, male, 64, GOLD). According to other respondents, increased vitality can help decrease feelings of fatigue: “Als je vitaler bent, dan druk je de vermoeidheid ook makkelijker weg. Dus ergens mee bezig zijn (…) en in beweging zijn.” (P5, male, 65, GOLD 2).
All patients agreed on the difference between fatigue and sleepiness. They clearly described fatigue as different from being tired, or sleepy. Sleepiness was described as the feeling you get when you have had a sleepless night, heavy eyelids and no motivation to stay awake. Sleepiness could be resolved by getting a good night‟s sleep. However, fatigue was still present when they woke up. It stayed with them day and night. Fatigue was described as a feeling of physical and mental exhaustion. A heavy feeling and extreme burden in daily life of patients. To illustrate: “Als ik slaperig ben dan denk ik nog niet van; Ik kan die dingen allemaal niet meer doen zeg maar. En als ik echt moe ben, dan kan ik niks meer. Dat is fysiek en mentaal veel zwaarder.” (P4, female, 62, GOLD 3) “Vermoeidheid is echt niet met het ene been voor het andere been uitkomen. En slaperigheid is gewoon dat je geen zin meer hebt om wakker te blijven, omdat je wilt slapen of je ogen vallen dicht. Dat is een hele andere manier van moeheid.” (P11, female, 65, GOLD 3). All associations with fatigue, decreased vitality and sleepiness, according to patients, are listed in table 2.
2. The start, causes and fluctuations of fatigue
To answer the second research question: “What is the patients’ perspective on the start, causes and fluctuations of fatigue?” the patients‟ viewpoints on these characteristics of fatigue were analysed.
2.1 Start of fatigue and its fluctuations
Regarding the start of fatigue symptoms, 15 out of 20 respondents answered with a general description of the time period: “Een hele tijd terug, sinds mijn COPD eigenlijk al. Vanaf het begin. En misschien wel langer, want toen ik gediagnosticeerd werd, toen zat ik al op GOLD 3, dus daarvoor had ik er ook al last van.” (P4, female, 62, GOLD 3). “Dat sluipt erin, het gaat heel langzaam. Je zit steeds meer omdat je pijn hebt, benauwd bent, je kan niks meer doen dus je bent steeds meer vermoeid.” (P7, male,
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64, GOLD 2). Despite fatigue being described as gradually increasing by a majority of patients, five respondents described the start of fatigue with a concrete time period: “Ik denk iets van 4 à 5 maanden geleden.” (P1, male, 57, GOLD 4). “Eigenlijk zijn die begonnen sinds de laatste keer dat ik in het ziekenhuis lag. In 2015, 2 jaar terug.” (P3, female, 59, GOLD 4). Patients who mentioned a concrete starting point of symptoms, often described a triggering event, e.g., a severe COPD exacerbation causing a hospital admission, or heavy physical activity as starting point for an increase in fatigue: “Toen in eind 2011 ging het niet meer [extreme vermoeidheid tijdens werk]. Toen zeiden ze [longarts] ook, je bent binnen een half jaar naar 4 gedonderd [GOLD 4].” (P1, male, 57, GOLD 4). “Ja, nou toen ik met de badkamer bezig was, daar twee weken aan gewerkt en na die twee weken was ik helemaal uitgeblust.
(…) Toen was het echt afgelopen.” (P12, male, 72, GOLD 2). Thus, according to these patients, fatigue symptoms increased significantly when triggered by a specific event, not by the start of their COPD.
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. The main reason they gave for an improvement in symptoms were pleasant weather conditions: “Ja als het mooi weer is dan is het wat beter, dan ga je eerder naar buiten en beweeg je ook meer.” (P8, male, 74, GOLD 3). “In de zomer had ik niet eens medicijnen nodig, niks aan de hand. Met mooi weer ben je ook niet moe en heb je ook geen klachten.” (P1, male, 57, GOLD 4). However, in constract to positive effects, the weather also caused negative fluctuations in fatigue: “Als het vochtig is, dan is het [vermoeidheid] veel erger. En in de winterperiode. Ook als het heel warm is, dan heb ik er ook meer last van. Dus of te warm of te nat of te koud, dan kan ik al niet meer naar buiten.” (P5, male, 65, GOLD 2). Fatigue symptoms were
perceived to increase directly when pulmonary function decreased due to bad weather conditions.
Furthermore, fatigue symptoms could fluctuate due to a bad night‟s rest: “Ik slaap ook vaak slecht, dus daar word je ook moe van.” (P10, female, 64, GOLD 3). Additionally, patients perceived a decrease in fatigue due to positive changes in their mental state: “Dan kan ik van die kleine dingen genieten, van het huis, van alles. Dan is de vermoeidheid minder, dan ben ik weer blijer.” (P13, female, 85, GOLD 3).
“Kijk als het met je kinderen goed gaat, dan gaat het met jezelf ook goed. Als het minder met de kinderen gaat, dan ben je zelf ook minder, meer zorgen. Dat heeft ook wel invloed hoor op de gesteldheid.” (P9, male, 71, GOLD 3).
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2.2. Causes of fatigue Table 3
Causes of fatigue according to patients
2.2.1 COPD and over-activity
All respondents mentioned COPD as the main indirect cause of their daily fatigue (Table 3). The cause of fatigue directly associated with COPD was dyspnoea: “Je wordt echt moe door die benauwdheid ook natuurlijk.” (P6, male, 65, GOLD 3). In addition, over-activity while having COPD was mentioned as a cause of fatigue by almost all patients. To illustrate: “Ik denk dat vermoeidheid hoort bij COPD. (…) Ik denk dat de oorzaak is dat je meer doet dan dat je aan kan. Ja, want als ik moe wordt, dan weet ik dat ik teveel gedaan heb.” (P4, female, 62, GOLD 3). Over-activity often causes oxygen deficiency and according to patients, this increases the heavy feeling associated with fatigue: “Ik denk bij inspanning dat de COPD wel van invloed is op het verergeren van die vermoeidheid. (…) Het ontstaat gewoon door activiteit, teveel zuurstof gebruik. Te weinig zuurstof voor je spieren en daar word je zo moe van.” (P7, male, 64, GOLD 2). However, inactivity and an incorrect breathing technique were also mentioned as causes that increased fatigue: “De inactiviteit. De slechte ademhaling. Alles wordt onregelmatig en dan kom ik op hetzelfde punt uit [erg vermoeid].” (P7, male, 64, GOLD 2). Thus, fatigue was caused by multiple factors associated with COPD, including the use of medication: “Het zijn de medicijnen, veel dingen doen, slecht slapen. Dat hele pakketje samen dat moet één lichaam aan. En dat lichaam is al heel ziek, dat maakt het niet makkelijker.” (P5, male, 65, GOLD 2).
2.2.2 Comorbidities
Besides COPD, respondents suffered from multiple comorbidities. Nine patients mentioned
comorbidities as an additional cause of fatigue. “Niet alleen de COPD, maar ook de spierziekte. (…) Dat vergt heel veel energie. (…) Dan heb ik veel pijn, slaap ik slecht en word ik moe wakker.” (P2, female, 52, GOLD 4). “De reuma misschien ook wel een beetje [oorzaak vermoeidheid].” (P17, female, Causes
COPD - Dyspnoea Over-activity
- Oxygen deficiency Inactivity
- Worsening physical condition Incorrect breathing technique Medication use
Comorbidities
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77, GOLD 3). “Die andere aandoeningen ja, ik denk dat pijn [door artrose] ook wel te maken heeft met vermoeidheid. Ik sta elke dag op met pijn en ik ga elke dag naar bed met pijn.” (P4, female, 62, GOLD 3). In addition to physical comorbidities, psychological stress also increased fatigue according to multiple patients: “Ik ben heel vroeg wakker en dan gaat gelijk mijn hoofd malen. Ik ben een beetje stress gevoelig, dus dan ga ik maar weer uit bed. Ik word nooit wakker door de COPD. Maar door het piekeren, en dan slaap ik niet meer in.” (P10, female, 64, GOLD 3). “Ik heb de laatste tijd vrij veel stress gehad, voor de opname en die stress moest ergens heen. Dus die heeft zich nou op de
vermoeidheid gefocust. (…). Maar de hele dag nadenken en piekeren, dan wordt het dus lichamelijk.
Dat is heel fout.” (P11, female, 65, GOLD 3).
Most respondents found it difficult to explain the difference between COPD and comorbidities as causes of fatigue: “Dus dan zit er wel verschil in, ja. Waarschijnlijk. Het is moeilijk om dat te kunnen onderscheiden ja, bij mij wel.” (P5, male, 65, GOLD 2).
3. Impact of fatigue on the life of COPD patients
To answer the third research question, “How is the impact of fatigue on the life of COPD patients described from the patients’ perspective?” the limitations as a cause of fatigue and the level of impact were analysed.
3.1 Limitations due to fatigue Table 4
Limitations due to fatigue
3.1.1 Fatigue limits daily activities
According to all respondents, several daily activities are no longer possible to perform due to fatigue (Table 4). All patients mentioned household tasks to be too physically demanding: “Ik kan niet stofzuigen, stoffen gaat al niet. (…) Door die vermoeidheid, om te blijven staan, dat lukt me niet meer.
Activity Limitations
Daily activity
Physical health and activity
E.g., Not capable of household tasks, personal hygiene, walking the stairs, a toilet visit.
E.g., Restrictions in walking and exercising, and having physical pain due to extreme inactivity.
Social activity E.g., Not capable of participating in social interactions with total social isolation as a consequence.
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(…) Naar de winkel lukt mij ook niet meer. En de apotheek, om medicijnen te halen. Ik dacht; jeetje, moet het?” (P1, male, 57, GOLD 4). “Ik heb sinds vorig jaar al hulp in de huishouding genomen, ik vind het vreselijk, maar ik krijg het zelf niet meer voor elkaar. De ramen lappen of de gordijnen wassen. Nou ik deed er twee dagen over.” (P11, female, 65, GOLD 3). Even small, daily tasks, such as personal hygiene, going to the bathroom or walking up the stairs are already challenging when suffering from fatigue: “Wassen kan ik niet zelf. Van douchen moet ik eerst bijkomen. (…) Als ik naar de WC heen ga, dan ben ik dood en dood moe. Dan ga ik maar weer in bed liggen en van eten word ik ook al dood moe.”
(P18, female, 71, GOLD 3). “Ik sleep me met moeite naar de wc. Dat is het. Thuis doe ik dat met een stoel, ik ga met een stoel op wieltjes naar de wc, naar de keuken.” (P15, female, 72, GOLD 2).
Due to daily limitations, motivation to engage in activities decreased drastically in some patients: “Nou, de goede voornemens worden tegengehouden door de vermoeidheid. Het is lastig te omschrijven. Je zit zo vijf uur in de stoel, terwijl je eigenlijk had moeten eten. (…) Maar aardappels schillen kost teveel energie.” (P16, male, 67, GOLD 3). “Ik heb nergens zin aan, echt niet. Door de ziekte neemt de motivatie ook af.” (P18, female, 71, GOLD 3). In contrast, multiple respondents stated that this motivation was still present. The association between daily limitations and mental states became clear: “Ik ben in mijn hoofd heel positief. Ik wil van alles en nog wat. Ik wil voetballen met mijn kleinkinderen. Maar lichamelijk [door de vermoeidheid] lukt dat gewoon niet. Ik wil geestelijk zoveel, maar dat wil gewoon niet.” (P2, female, 52, GOLD 4). “Ik wil graag zoveel dingen doen, maar dat kan niet, dat lukt me niet.” (P18, female, 71, GOLD 3).
3.1.2 Fatigue limits physical health and activity
Physical limitations, as mentioned by a majority of respondents, focused mainly on restrictions in walking and exercising: “We lopen 5 meter en ik moest stilstaan. Ik kon niet met mijn eigen dochter naar de stad lopen. En toch probeer je het, je probeert jezelf erover heen te zetten, maar het gaat niet.”
(P1, male, 57, GOLD 4). “Door de vermoeidheid kan ik niet alleen staan, ik heb geen kracht of energie om mijn lichaam tegen te houden. Ik val zo om.” (P16, male, 67, GOLD 3). Furthermore, decreased physical health can also be an indirect consequence of suffering from fatigue. Multiple respondents mentioned that they were suffering from pain: “Ja je doet niks, dus alles gaat verzuren.” (P1, male, 57, GOLD 4). “Benauwdheid en last van mijn heupen omdat ik zoveel zit en lig.” (P5, male, 65, GOLD 2).
“Zie je die trillende handen en spieren? Dat komt ook door de vermoeidheid. Ik heb gewoon geen energie. (…) Ik kan ook niet te lang staan, of te lang zitten of liggen. Dan begint het me onderin de rug
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zeer te doen of ik krijg kramp.” (P16, male, 67, GOLD 3).
3.1.3 Fatigue limits participation in social activities
Fatigue is reported to have an influence on multiple aspects of the social environment of patients. As mentioned by respondents, they often cannot participate in social activities due to fatigue: “Het is meer dat je niet mee kunt doen. (…) Familiefeestjes, even de stad in gaan. Dat zeg ik, je wilt heel fanatiek meedoen en op een gegeven moment moet je afhaken.” (P2, female, 52, GOLD 4). “Kijk, als ik alleen ben dan is het niet zo een heel groot probleem, maar vooral als mijn dochter er is of de kleinkinderen er zijn of mijn vriend is er, ja dan wil je zoveel meer. Maar dan kost alles ook zoveel moeite.” (P2, female, 52, GOLD 4). “Maar als nu mijn kleinkinderen komen, dan denk ik wel eens; nou dat mag wel wat minder. En dat is wel heel erg jammer.” (P6, male, 65, GOLD 3).
These limitations have led to social isolation and feelings of loneliness: “Ik denk wel dat je langzaam isoleert van je omgeving. Je kan niet meer naar de markt, of naar familie. Helemaal niet meer. (…) Ik kan nauwelijks meer naar buiten of met mensen afspreken. Totale isolatie.” (P7, male, 64, GOLD 2). “Ik ben echt een mensen mens en dat mis ik. Hoe zieker dat je wordt, de kring wordt steeds minder. Die wordt heel klein.” (P13, female, 85, GOLD 3). Despite their fatigue, some patients felt the need, or the pressure, to participate in social activities “Vooral voor andere mensen doorzetten, daar doe je het voor. Voor jezelf hoeft het niet meer.” (P1, male, 57, GOLD 4). “Ik kan het niet meer dragen ik moet echt gaan liggen, maar dan toch blijf je door gaan omdat je naar de omgeving je verplicht voelt.
Best een belastend iets.” (P7, male 64, GOLD 2). Another aspect of the impact of fatigue on social activities was the patients’ feeling of being misunderstood by their direct environment and even their own family when it comes to dealing with the burden of fatigue:
“Ook kan je niet aan iemand zien dat hij COPD heeft, dus je wordt niet begrepen. Net alsof je zit te zeuren, nou vreselijk! (…) Met slecht weer voel ik me heel moe. De maatschappij snapt dat niet. Aan de buitenkant kun je niks aan mij zien, de ziekte zit aan de binnenkant en ik voel me dan ook echt niet begrepen door iedereen.(…) Anderen vinden dat je overdrijft met die vermoeidheid. (…) Heel frustrerend. Bij kanker kan je zien dat iemand ziek is en andere mensen hebben medelijden, maar bij COPD niet. Mensen geloven ook niet dat ik ziek ben, als ik geen zuurstof in mijn neus heb.” (P3, female, 59, GOLD 4).
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3.2 Mental burden due to fatigue
The daily limitations due to fatigue, brought along a heavy mental burden. A majority of patients mentioned that they had, in some degree, lost the joy in life due to fatigue: “Ik merk wel dat ik steeds moeier begin te worden en ook echt dat ik denk van; Pff, laat maar het interesseert me niet meer! Mijn interesse valt weg door de vermoeidheid. (…) Niet dat ik dood wil, maar ik heb geen lust meer. Het is weg. (…) Ik ken mezelf niet meer terug.” (P1, male, 57, GOLD 4). In addition, some patients mentioned losing the will to live, due to the extreme mental burden: “Nou ik vind het leven natuurlijk niet meer leuk. Er is niks aan. Je moet je tijd uitliggen. (…) Maar ik heb het opgegeven.” (P15, female, 72, GOLD 2). “Ik snap ook niet dat ik altijd zo moe moet zijn. (…) je stapt niet zomaar uit het leven omdat je moe bent, maar soms denk ik er wel over, omdat het zoveel pijn doet dat je niks meer kunt ondernemen. (…) Bah, wat een slecht leven toch.” (P3, female, 59, GOLD 4).
In addition, the fact that patients are limited in their daily activities and social interactions was extremely confronting and frustrating for the majority of respondents: “Ik ga even in een hoekje staan en begin te vloeken. Van waarom kan ik dat nou niet? Zo frustrerend. Je wordt er constant mee
geconfronteerd. (…) Ik vind het verschrikkelijk. Het is in woorden niet uit te leggen. Gewoon
waardeloos, echt waardeloos.” (P5, male, 65, GOLD 2). Furthermore, fatigue being constantly present throughout the day was frustrating for patients: “Je bent vermoeid, je slaapt onrustig, dus je wordt ’s ochtends weer vermoeid wakker. (…) Dus ik kom nooit door die vermoeidheid heen! Dat is zo
frustrerend.” (P1, male, 57, GOLD 4). In addition, patients mentioned the fear of losing all physical capabilities and becoming dependent on others: “Maar ik ben er heel bang voor, wanneer ik helemaal niks meer kan en afhankelijk word. Het gaat de verkeerde kant op.” (P15, female, 72, GOLD 2). “Ik ben aan het piekeren en nadenken over hoe ik de dagelijkse dingen aan ga pakken, ondanks dat ik zo moe ben. (…) Vreselijk. Je wordt er bang van, dat je steeds minder kan doen. Het is eng.” (P16, male, 67, GOLD 3).
3.2 Rating of the impact fatigue has on the life of COPD patients and of their subjective vitality Patients ranked the level of impact that fatigue had on their lives on a scale from 1 to 10. Scores ranged from 3 to 10, with a median of 8 (SD 4.2). Six respondents ranked the impact of fatigue with a 9. Two patients even ranked the impact of fatigue with a 10: “Oh, dan moet ik wel een 10 geven. (…) Ook wel een dubbele 10. Ja dat is heel erg. Dat bepaald mijn hele leven.” (P13, female, 85, GOLD 3). Five patients rated the impact with a 5. One of them stated that fatigue had major impact on her physical
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abilities. However, emotionally she was very positive and had a lot of motivation: “Het weerhoudt mij er niet van om dingen te doen. Ik wil het graag allemaal nog wel, maar mijn gevoel wil meer dan dat ik aankan.” (P4, female, 62, GOLD 3). There was no difference found during analysis in severity of fatigue between male or female patients (Figure 3), or between COPD patients with GOLD 2 and patients with GOLD 3 or 4 (Figure 2). Perceived fatigue did not directly correlate with disease severity based on pulmonary function. In addition, patients with GOLD 2 mentioned the same aspects during interviews in describing the impact of fatigue as patients with GOLD 3 or 4 did.
Figure 2. Ranking by patients of the impact of fatigue on their daily lives on a scale of 1 to 10 (1 = no impact, 10 = Extreme impact on patients' lives) divided into GOLD stages
Figure 3. Ranking by patients of the impact of fatigue on their daily lives on a scale of 1 to 10 (1 = no impact, 10 = Extreme impact on patients' lives) divided into gender
0 1 2 3 4 5 6 7 8
1 2 3 4 5 6 7 8 9 10
Frequency
Rating impact fatigue
GOLD 3 / 4 GOLD 1 / 2
0 1 2 3 4 5 6 7 8
1 2 3 4 5 6 7 8 9 10
Frequency
Rating impact fatigue
Female Male
