University of Groningen Lungs under a cloud Maters, Gemma

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University of Groningen

Lungs under a cloud

Maters, Gemma

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Publication date: 2019

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Maters, G. (2019). Lungs under a cloud: Psychological aspects of COPD. Rijksuniversiteit Groningen.

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Chapter 1

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11 The purpose of this thesis is to explore psychological aspects of experiencing and handling Chronic Obstructive Pulmonary Disease (COPD), as well as options for psychological support. With our title, ‘Lungs under a cloud’ we express the interplay between COPD and psychological issues. The disease brings psychological problems about and is influenced by psychological issues negatively. In this thesis we look into perceived distress and the consequences of distress, as well as its relationship with social support. Furthermore, we investigate needs for psychosocial care and feasibility issues concerning a psychological intervention study. In particular, this thesis discusses: a) the relationship between comorbidities (including depressive symptoms) and all-cause mortality (Chapter 2), b) the relationship between psychological distress and perceptions of spousal support (Chapter 3), c) the cross-cultural use of the Hospital Anxiety and Depression Scale (HADS; a questionnaire which we intended to use in our intervention study, until we found out there were problems with it, Chapter 4), d) the screening of an endorsed need for psychosocial care (Chapter 5) and e) difficulties encountered in the implementation of a psychological intervention study (Chapter 6). Also, we developed a psychological intervention protocol, to encounter several central issues in coping with COPD (Chapter 7).

This introduction starts off with background information on COPD; symptoms, course and medical treatment options. Subsequently, a short overview of research concerning psychosocial problems in COPD patients will be presented, as well as available research concerning studies on psychological support. At the end of this introduction an overview of the chapters of this thesis will be provided.

COPD: definition, prevalence and symptoms

The official definition of COPD, according to the Global Initiative for Chronic Obstructive Lung Disease (GOLD), is “common, preventable and treatable disease that is characterized by persistent respiratory symptoms and airflow limitation that is due to airway and/or alveolar abnormalities usually caused by significant exposure to noxious particles or gases” (Global Initiative for Chronic Obstructive Lung Disease (GOLD), 2018). In plain English: pulmonary damage causes breathing problems and this damage is caused by smoking or exposure to other harmful substances. Next to tobacco smoking or environmental exposures, the so-called ‘host factors’ (such as genetic factors) seem to play a part (Global Initiative for Chronic Obstructive Lung Disease (GOLD), 2018). Although COPD is considered to have treatable characteristics (Houben-Wilke et al., 2018), it is a progressive disease. A diagnosis of COPD is typically suspected in patients with dyspnea (breathlessness), chronic cough or sputum production, with or without exposure to risk factors. To confirm the diagnosis of COPD, spirometry, a medical pulmonary test that determines the level of airflow limitation, is needed. Earlier, a fixed criterion of airflow limitation was used to diagnose COPD. Recently, the Global Lung Function Initiative (GLI) of the European Respiratory Society (ERS) introduced z-scores, based on age dependent reference values (European Respiratory Society, 2017). Four categories of airflow limitation severity are recognized, as indicated by the Global Initiative for Chronic Obstructive Lung Disease; the GOLD categories (Global Initiative for Chronic Obstructive Lung Disease (GOLD), 2018). They are ranging from GOLD category 1, indicating mild airflow limitation, to category 4, indicating very severe airflow limitation. The correlation between the GOLD category and physical symptoms or impairment is, however, weak (Han et al., 2013; Jones, 2009).

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In the Netherlands, over 350.000 people suffer from COPD (Snoeck-Stroband et al., 2015). It is estimated that worldwide 65 million people suffer from COPD; in 2015 three million people died of COPD, mostly in low and middle-income countries (WHO website). This implies that COPD is an important cause of death in many countries. COPD is frequently accompanied by other diseases (comorbidities) that may influence symptoms and the course of the disease (Anecchino et al., 2007; Chatila, Thomashow, Minai, Criner, & Make, 2008; Patel & Hurst, 2011; Schnell et al., 2012). The disease typically becomes apparent after the age of 40 (World Health Organization, 2017). In earlier decades, COPD patients usually were men. Nowadays, in western countries more and more women are diagnosed with COPD. An important reason for this change is that more women started smoking during the last decennia. Women with COPD usually experience more severe symptoms and are, on average, diagnosed at a younger age than men (Snoeck-Stroband et al., 2015). COPD patients are treated with pharmacotherapy to alleviate symptoms or treat complications. In addition, they are advised on smoking cessation, physical exercise and/or are encouraged to participate in pulmonary rehabilitation, if applicable. However, non-adherence to such advices or treatments is a well-known problem in COPD patients (Blackstock, ZuWallack, Nici, & Lareau, 2016).

The most salient symptoms of COPD are dyspnea (breathlessness), cough and sputum production (Global Initiative for Chronic Obstructive Lung Disease (GOLD), 2018). Especially dyspnea is described as a very unpleasant symptom; patients feel as if they are grasping for air or breath through a straw. Other frequently occurring symptoms are fatigue, decrease in muscular strength and/or weight loss. Symptoms may be mild up to severe, depending on factors such as the stage of the disease and also the activity level of patients. Ultimately, because of the progressive character of the disease, patients may become impaired in all of their daily life activities. For instance, walking the stairs or riding a bicycle may increase dyspnea, doing home appliances or working may become impossible, sleep interruptions may frequently occur and worsen fatigue during the day. In addition, most COPD patients experience episodes of increased symptoms from time to time (exacerbations). These exacerbations may last for days or weeks and patients may seek (urgent) medical advice or care to deal with them. Exacerbations negatively influence disease progression and should be adequately treated to minimize the impact and to prevent future exacerbations from happening. The latest GOLD revision (Global Initiative for Chronic Obstructive Lung Disease (GOLD), 2018) aims at more precisely discriminating severity of COPD by adding symptoms (low versus high) and number of exacerbations per year (0 or 1 versus 2 or more).

Psychosocial issues and options for psychological support

Due to the burdening and, ultimately, life-threatening character of the disease, COPD may induce strong emotions in patients, such as feelings of anxiety, suppressed mood, helplessness and hopelessness. Depression and anxiety disorders are frequently reported in COPD literature (Hanania et al., 2011; Kunik et al., 2005; Maurer et al., 2008) and are associated with an increase in the experienced disease burden. Some patients are afraid to suffocate or lose control. Panic attacks may occur and patients may avoid particular situations or activities, which may provoke distress or an increase in symptoms. Some COPD patients experience traumatic events, such as Chapter 1

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13 treatments or strong emotions during a hospitalization. A state of suspense has been found in COPD patients, because of the uncertainties the disease brings about. In Box 1.1 some interview-quotes are presented from two studies conducted by two psychology students, under our supervision, to illustrate how patients with COPD perceive and experience their disease (Hendriks, 2011; Mayer, 2011). A relationship was found between depression in patients with COPD and mortality in some studies, but not in all (Almagro et al., 2012; Groenewegen, Schols, & Wouters, 2003). Because most studies were performed in hospitalized patients, we investigated the association between co-morbidities (such as depressive symptoms) and mortality in patients with stable COPD.

Besides emotional problems, taking part in social activities may become difficult for patients suffering from COPD, because of the breath-related symptoms themselves, and/or because of sensitivity to allergen stimuli such as tobacco smoke. Therefore, social isolation is a risk factor in patients with COPD, who try to avoid the increase of symptoms. Concerning their social context, some COPD patients experience a lack of understanding from their acquaintances, leading to even more avoidance of social situations and/or to negative emotions. Patients involved in a relationship may experience role changes, due to their disease. Relational problems may occur in the partner relationship, sometimes worsened because of sexual problems experienced by patients or partners. On the other hand, a partner may positively influence adherence to medication or rehabilitation (Fischer et al., 2009; Rand, Nides, Cowles, Wise, & Connett, 1995). The way partner support is best provided has received little attention in COPD literature, as well as the way patients perceive partner support. Therefore, we look into spousal support in this thesis.

Based on the aforementioned emotional and relational issues patients with COPD may face, one would expect that many patients might experience a need for professional psychosocial support. However, it seems that the number of COPD patients that receive a psychological treatment are generally low. Therefore, in the literature concerning psychological aspects of COPD, screening for distress is encouraged (Garvey, 2012; Maurer et al., 2008; Obradovic et al., 2012); however, an association between distress levels and a need for psychosocial care has not yet been established in the literature concerning patients with COPD. We therefore investigated the association between a need for psychosocial care and distress (measured with two questionnaires). Cognitive behavioral therapy appears to improve psychological outcomes in patients with COPD, according to two systematic reviews on this issue (Coventry & Gellatly, 2008; Farver-Vestergaard, Jacobsen, & Zachariae, 2015). However, it should be stated that intervention studies in this field until now encounter problems, such as low inclusion numbers. Therefore, more research into psychological interventions is called for (Baraniak & Sheffield, 2011; Dowson, Kuijer, & Mulder, 2004; Farver-Vestergaard et al., 2015; Rose et al., 2002). This thesis discusses inclusion and dropout issues in an intervention study, as we experienced such issues in our randomized controlled trial.

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A female COPD patient (75 years old):

̏My pulmonary disease belongs to me. I learned a lot from it. It gave me confidence in life˝.

A male COPD patient (71 years old):

̏ I feel down increasingly. This is related to my pulmonary disease. I know for a fact that I will die of it. My body tells me too, and I usually listen to my body. The end of my life may be far away, I don´t think I will die tomorrow. Up until now, I thought I would be fine if I just wouldn´t give up. But lately, I do no longer believe this anymore. If this worsens, what will happen when they try to help me? Will it be fine, or a long-drawn-out process? But I do not long for death. If I die of this disease, I will suffocate. Either my heart snaps, or my lungs. That is not a happy thought. To fall asleep and die will not be the case, as I had hoped for. That’s hard. At difficult moments, I tend to think of death. On the other hand, sometimes a beautiful day arrives. I get my mobility scooter and drive as far as I can. I feel a bit free, but it never lasts. Then I have to go home again and the worrying starts again … and the worrying worsens˝.

A female COPD patient (53 years old):

̏And about the black mood, I think one will lose faith. Sometimes the disease makes me feel down. But I don’t want to be bothered by it every day. And about the fear, I do recognize is. But not every day. It surprises me, when I am busy with my daily activities. I tend to think: do I have to live the rest of my life with this disease? Sometimes it is just a feeling. I do not talk about the fear. I don’t know how to. I’d rather keep this to myself. Generally, I do not talk about my disease to others. Only if they start talking about it. This disease is an adventure. But I will continue and will not lose faith˝.

Box 1.1 Three patients with COPD about their disease (parts of interviews)

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15 Overview of the chapters

In this thesis we look into several of the issues described in the preceeding paragragh. In the current paragraph we introduce the research presented in this thesis.

Chapter 2. The incidence of medical and psychological comorbidities in patients with COPD is high and an association between medical co-morbidities and mortality was demonstrated in some studies, but not in all. Most studies were performed in patients who were hospitalized. Therefore, we investigated the association between co-morbidities and mortality in patients with stable COPD. Survival analyses were performed with data collected in stable COPD patients and illness parameters, including acknowledged survival predictors, were included in the analyses. Chapter 3. Because of the disabling character of the disease, patients with COPD may experience a high need for support from their spouses. However, only a few studies have looked into partner support in patients with COPD. Research in patients with other diseases showed the association between patients’ wellbeing and provided support, as perceived by patients, may be either positive or negative. The aims of our study were (1) to investigate if discrepancies between patients’ and partners’ perceptions of overprotection and protective buffering are associated with distress and (2) to evaluate if the direction of the differences between patients’ and partners’ perceptions is associated with distress.

Chapter 4. In this chapter, the cross-cultural use of the HADS is discussed. This is a widely used instrument to screen for anxiety and depression, also in COPD research. At first, we intended to use the HADS in our research on a psychological intervention. Then we found out there where four different Dutch translations of the HADS and there were problems reported in HADS literature. We decided not to use this questionnaire in our intervention study and look into the cross-cultural use of the HADS instead. Problems are reported in literature, such as discrepant optimal cut points and inconsistent factor-structures. The aim of this chapter is to examine whether these problems could be due to the translation and cross-cultural use of the HADS.

Chapter 5. In the literature until now, high levels of distress (symptoms of anxiety or depression) are reported in COPD. Screening for distress is advocated, as a means to identify patients in need for psychosocial care. However, to our knowledge, no earlier research has focused on the association between distress levels and a need for psychosocial care. Therefore, we examined the association between the screening capacities of the Hopkins Symptoms Checklist-25 (HSCL-25) and the Mental State scale of the Clinical COPD Questionnaire (CCQ). In addition, several characteristics of patients with a need for psychosocial care were investigated.

Chapter 6. In chapter 6 we present the issues we came across in our psychological intervention study. This study was prompted by a need for more high-quality research into psychological interventions in patients with COPD, in the literature. Because of the problems reported in COPD literature, we paid extra attention to approaching and motivating patients. Still, we encountered inclusion and dropout problems. Therefore, we were no able to report on the effectiveness of the psychological intervention. Instead, we report on the process and problems encountered during performing the study and make recommendations for future psychological intervention studies in COPD.

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Chapter 7. In this chapter we present our protocol for a cognitive-experiential intervention. We describe the rationale for the intervention, as well as the manual for psychologists. The cognitive- experiential intervention is targeted at learning patients to get more control over; a. the physical consequence/ symptoms of the disease, b. emotions or perceptions regarding the disease and c. the consequences of the disease regarding relationships. Cognitive and experiential techniques were chosen to realize those goals.

Chapter 8. Offers the general discussion; we reflect on our overall findings, clinical implications, methodological considerations and future research.

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17 References

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