Psychological Impact of Newly Diagnosed Lung Cancer
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The concern addressed in this dissertation is to explore the psychological impact on a newly diagnosed lung cancer patient. Patients with lung cancer normally experience variety of distress symptoms, many of which begin prior to diagnosis and continue throughout the course of the disease and the treatment, which adversely affects the functional status and quality of life (Julkunen et al, 2009). The experience of lung cancer is not limited to only the victims but may equally have wide-range impact on families' physical and emotional well-being. Therefore it is essential to critically assess the extent of this psychological impact of lung cancer on the patient.
This topic is properly examined in context of a critical literature review approach. The approach has adopted the traditional method which is considered appropriate for the purpose of this piece of work. This method involves a critique, summary and synthesis of a body of literature after which a conclusions is drawn, (Coughlan,et al. 2008). According to Crombie (1996), the purpose of writing a literature review is to convey to readers the knowledge and ideas which have been established on the chosen topic, and explore the strength and weaknesses. This helps to identify gaps and inconsistencies in the literature. Gomm et al, (2000) stated that the purpose of a review is to analyse critically a published body of knowledge through summary, classification, and comparison of prior research studies, reviews of literature, and theoretical articles. A further consideration for the literature review will not merely be a descriptive list of materials obtained, or a summary of relevant resources, but rather to provide the framework of the research investigation and summarise the literature studied in order to develop the research study (Brink and Wood, 2001).
A brief description of the anatomy and physiology of the lungs will be discussed to enhance proper understanding of the topic. Pathophysiology, aetiology and epidemiology of lung cancer will be outlined. The methodology will be described including a brief description of the models and strategies adopted in conducting the review. The review of 10 peer review papers are presented in chapters using critical appraisal tools to evaluate the strengths and limitations of the research papers. Both qualitative and quantitative primary research papers will also be used. Limitations of the literature and the process of the review will be identified.
The dissertation will be structure in the following way: Chapter 2 will explore the background information about lung cancer by examining the pathophysiology, aetiology, and epidemiology, pathogenesis, treatment and evaluation of the disease. It also considers the rationale behind the chosen topic. Chapter 3, Research Methodology, outlining the various strategies employed to gather and analyse the sources of data. Chapter 4, Psychological distress: anxiety, depression, desire for hastened death, feeling of guilt and hopelessness. Chapter 5, Discusses the impact psychological distress has on quality of life of newly diagnosed lung cancer patients. Chapter 6, Summary of findings of the literature reviewed. Chapter 7, Limitations of the literature reviewed. Chapter 8, Limitations of the whole literature reviewing process. Chapter 9, Conclusion and Recommendations, distils the key points and relates them to proper management of lung cancer. It also proposes a number of recommendations to tackle the problems identified above.
The study is to identify the psychological impact of newly diagnosed lung cancer on the patient. Lung Cancer is a disease that begins in the tissue of the lungs. To better understand lung cancer, it is vital to understand the anatomy and physiology of the lungs.
2.2 Anatomy and physiology of the lungs
The lungs are two cone-shaped structures positioned on either side of the heart. In the mediastinum. They are sponge-like organs that are part of the respiratory system. During breathing, air enters the mouth or nasal cavity and travels down the trachea. The trachea, divides into two smaller tubes: the right bronchus and the left bronchus. The right bronchus enters the right lung and the left bronchus enters the left lung. The right and left bronchus branch into bronchioles. These bronchioles end in tiny balloon-like air sacs called alveoli. The alveoli are where oxygen, carbon dioxide, and other substances are exchanged between the lungs and the blood stream. (Gould, 2006).
Pathophysiology, aetiology and epidemiology of lung cancer
Lung cancer is a term, which covers a collection of several different forms of malignant tumour arising in the lungs and in the major airways (The Royal College of Physicians, 2005). There are two major types of lung cancer, non-small cell and small cell. Non-small cell lung cancer (NSCLC) arises from epithelial cells which is the most common type of lung cancer. Small cell lung cancer begins in the nerve cells or hormone-producing cells of the lung. The term "small cell" refers to the size and shape of the cancer cells when seen under a microscope. According to (McCance and Heuther 2005) the non-small cell lung cancer (NSCLC) accounts for about 80% of all lung cancers. There are different types of NSCLC, these are:
- Squamous cell carcinoma (also called epidermoid carcinoma). This is the most common type of NSCLC. It forms in the lining of the bronchial tubes and is the most common type of lung cancer in men.
- Adenocarcinoma. This is found in the glands of the lungs that produce mucus. This is the most common type of lung cancer in women and also among people who have not smoked.
- Bronchioalveolar carcinoma. This is a rare subset of adenocarcinoma. It forms near the lungs' air sacs. Recent clinical research by Scullion and Henry (1998) has shown that this type of cancer responds more effectively to the newer targeted therapies
- Large-cell undifferentiated carcinoma. This cancer forms near the surface, or outer edges, of the lungs. It can grow rapidly.
The small cell lung cancer (SCLC) as (MacCance and Huether, 2005) puts it, accounts for about 20% of all lung cancers. Although the cells are small, they multiply quickly and form large tumors that can spread throughout the body. Smoking is almost always the cause of SCLC.
Lung cancer begins when cells in the lungs grow out of control and form a tumor. A tumor can be benign (noncancerous) or malignant (cancerous). A cancerous tumor is a collection of a large number of cancer cells that have the ability to spread to other parts of the body. A lung tumor can begin anywhere in the lungs (Muers et al, 2001).
According to Hughes and Pride (1999), once a cancerous lung tumor begins to grow, it may or may not shed cancer cells. These cells can be carried away in blood or float away in the natural fluid called lymph, which surrounds lung tissue. Lymph flows through the lymphatic vessels that drain into lymph nodes. Cancer cells metastasise when it leaves its site of origin and moves into a lymph node or to a far away part of the body through the bloodstream.
The location and size of the initial lung tumor, and whether it has spread to lymph nodes or more distant sites, determines the stage of lung cancer. The type of lung cancer and stage of the disease determine what type of treatment is needed. The staging system describes the extent of the disease at the time and therefore provides a basis for treatment and prognosis. The staging systems as described by McCances and Huether, (2006) are based on the following:
- The size of the primary tumour (T);
- The extent of regional lymph nodes (N); and
- The spread of the tumor (M).
Lung cancer is the most common form of cancer in the UK, resulting in 36,000 deaths each year (DOH, 2007). Lung cancer is the leading cause of cancer motality in the UK: In every 15 minutes, a new diagnosis is made with approximately 40,000 fresh cases every year (NICE, 2009). It remains the most frequent of all malignant diseases and the one with the poorest prognosis. 80 percent of effected people die within a year (DOH, 2007). Lung cancer continues to rise and is now very high in women as well as men (Hamer et al, 2008). Many epidemiological studies have assessed the extent and nature of problem in the UK, (Blackler et al, 2007) report that lung cancer occurs in people who smoke. This is supported by further research from the United States of America, including other comprehensive study conducted by Scullion and Henry (1998) that the risk of lung cancer is higher in persons who begin smoking early, continue for many years, and are considered heavy smokers.
However (Gould, 2006) posited that people who don't smoke can also develop lung cancer, although this is much rarer. This confirms (McCance and Huether's, 2005) statement that people who have been in prolonged or close contact with asbestos have a higher risk of lung cancer, especially if they smoke. Lung cancer is rarely diagnosed in people younger than 40 most cases occur in people over the age of 60.
2.3 Pathogenesis, Treatment and Evaluation
The treatment of lung cancer is based on the size and location of the tumor, whether the cancer has spread, and also the person's overall health. There are four basic ways to treat lung cancer: surgery, radiation therapy, chemotherapy, and targeted therapy (NICE, 2005). Treatment options differ for each individual and may depend on other factors such as age, physical condition, and other medical problems. The goal of Surgery is to remove the part of the lung where the tumor is isolated. Chemotherapy is to kill rapidly dividing cells in the body, including cancer cells using drugs. It is the main treatment for people with small cell lung cancer. In many people, chemotherapy will enable them to live for longer, with better control of symptoms. (NICE 2009) Chemotherapy may be given on its own, or before radiotherapy. Sometimes chemotherapy and radiotherapy are given at the same time; this is known as chemoradiation. Targeted therapy is a treatments designed to target cancer cells in more specific ways, usually involving the mechanisms that cause cancer cells to grow or divide (DOH, 2007). The diagnosis of lung cancer becomes a crisis in victims' life when experienced, confronting them with changes in identity, role, and social interactions and presenting them with an uncertain future (Waller and caroline, 1996).
Kemp (1999) posited, the psychosocial distress can interfere with the patient's healthcare and diminish his or her health and functioning. Many patients who face cancer diagnosis that require physical effects of treatment appear to experience emotional difficulties, including anxiety and depression. Equally, patients with untreated depression or anxiety may be less likely to take their cancer medication and maintain their health. Moreover they may withdraw from family or other social support services which may affect the treatment outcome.
The rationale for the choice of topic was based on a desire to understand the psychological impact of lung cancer on the patient. Often the physical effects of the cancer disease and treatment are focused more on the curative effort. Therefore, it is important for the health-care team to address psychological effects, that cancer patients normally encounter that can greatly affect their sense of well-being. Nursing is expected to deliver high quality care that is effective in promoting health and well being (LoBiondo-Wood and Haber, 2006). Evidence-based practice is a key strategy in the development of modern health services and crucial to the development of nursing practice (Parahoo, 1997). Evidence-based care as Brink and Wood (2001) suggest and supported by (Carnwell 1997), is the conscientious use of current best evidence in making decisions about the care of individual patients or the delivery of health services. The successful completion of the review will investigate primary research. In doing so this may act as an additional information source for healthcare professionals and as a basis for further enquiry.
3.1 Aims and research questions
Against the background of the foregoing explanation, it is desirable to identify the psychological distress associated with lung cancer and how it affects the patient.
The questions the review seeks to address/answer are
1. What are the psychological reactions of newly diagnosed lung cancer patients?
2. How do these psychological reactions affect physical and psychological wellbeing of theses patients?
3. What interventions can be used to address these psychological reactions of newly diagnosed lung cancer and manage them effectively?
3.2 Parameters for the literature search
The chosen method is a systematic literature review of both qualitative and quantitative research in the study area. A systematic literature review as defined by (Parahoo, 1997) is a summary of research that uses explicit approach to perform a thorough literature search and critical appraisal of existing body of published knowledge to identify the valid and applicable evidence. It is a means of managing very large volumes of information to identify evidence on which recommendations can be made (Holloway and Wheeler, 2002). Studies were used if they included adults (age 45 +) who have been newly diagnosed of lung cancer.
3.3 Inclusion Criteria
- This review included literature published from the year 1999 onwards
- All papers published in English Language only.
- Primary research directly related to the topic and
- Published research articles only.
3.4 Exclusion criteria
- Primary research not directly related to the topic
- Unpublished research articles
- Articles published before the year 1999
Other people were involved also, people from the specialist cancer services and the librarians whose help was invaluable in developing a search strategy and in sourcing and retrieving papers.
3.5 Literature searching strategies
The search was completed using electronic databases. These were the Cochrane Library, CINAHL, British Nursing Index, Northampton Full Text [email protected], Proquest, Medline, and PsycInfo. The Cochrane Library was searched initially to see if a similar study had been done. The other data based were then searched from 1999-2009. Medline is a nursing and medical database. It is known to be incomplete (Markinson, 2002) however (Tagney and Haines, 2009) demonstrated that a search on MEDLINE is likely to produce most of the appropriate papers because it publishes articles from a worldwide source. The hospital library service was used to find studies which were not available in full text form on the internet or locally held journals. Not all could be located; however this potentially could be a source of bias. In discussing the problems and importance of incomplete retrieval of papers, (Chalmers and Altman, 1995) argue that trials that are difficult to locate tend to be smaller and lower methodological quality than trials that are easily accessible.
The key words used to search the database were LUNG CANCER, DIAGNOSIS, DEPRESSION, CANCERS, PSYCHOLOGY, PSYCHOLOGICAL INTERVENTION, MEN, ANXIETY, ANGER, SADNESS, FEELING OF GUILT OR REGRET and PATIENTS FEELINGS. The nature of the study necessitated the use of very general terms such as lung cancer, and psychology. Sensitivity was chosen rather than specificity in the selection process and this meant that the search initially uncovered a large number of papers unrelated to the study. The result of the search was initially screened by reading the abstract online and retrieving the relevant ones using the inclusion and exclusion criteria. The studies which were retrieved were screened again to make sure they fulfil all the criteria required to be used for the review. To avoid bias, this study used methods outlined by Aveyard (2008). The methods were simplified for people who are new to or have little experience in doing a literature review. As suggested by (Cutcliffe and Ward, 2003) methods used in systematic reviews reduce the potential bias of the review.
3.6 Method of Evaluation
The literature is evaluated using Greenhalg T (1997) structure for evaluating qualitative research. (See appendix 2) This model was selected because most of the research was qualitative due to the nature of the selected topic. Anxiety and depression are difficult to measure because it's an emotional response and therefore immeasurable.
3,7 Method of Analysis
The research is analysed using a summing up approach as described by (Aveyard, 2008) which is adopted from the approaches given by Paterson et al (2001). This model was chosen because it facilitates the extraction of themes from research literature of a diverse nature. Again is suitable for people who are new to the literature review process. The themes generated are:
- Psychological distress: Anxiety, depression, feeling of hopelessness and the desire for hastened death.
- Effect of psychological distress on quality of life of people with newly diagnosed lung cancer.
3.8 Data handling method
The data was stored and subsequently analysed using data storage system described by (Cormack, 2000) this system has two commonly methods of storing data: storage in original form, and storage using computer. The printed research papers were stored in a ring binder file and a memory stick was used to store computerised data. The purpose of data storage as LoBiondo-Wood and Haber (2006) puts it has three basic related purposes: to make sure that no data are lost; to ensure that information are obtained in a way which makes it reasonably accessible; and to ensure that the researcher is able to analyse the data. A separate note book was used to store references.
3.9 Resources required and sources identified
Resources required are computers, various libraries, search engines, text books, stationary, supervisor, and librarian. Sources identified are internet and printed journals.
Psychological distress: Anxiety, depression, desire for hastened death, feeling of guilt and hopelessness.
Following exploration of the available and chosen research for this literature review, various themes have been identified. This chapter aims to discuss and explore the reviewed literature regarding the psychological distress of newly diagnosed lung cancer patients. It will discuss anxiety, depression, feeling of guilt and hopelessness which influence the disease-related factors on the desire for hastened death which have emerged from the data. Five studies (Akechi et al (2006), Turner et al, (2006), Wilson et al, (2007), (Rodin, et al 2009) and Mystakidou et al, (2008) will be examined using the methodology, discussions and analysis of the research to evaluate their findings. (See appendix 3 for research articles) In order for this to be achieved, the chapter has been divided into three 'sub-themes' these are:
- Psychological distress.
- Anxiety and depression.
- Feeling of guilt/hopelessness and the desire for hastened death.
There will be a small summary to conclude the chapter.
4.1 Psychological distress
A cancer diagnosis can be viewed as a very stressful event for patients as they must adapt to the shock and uncertainty that such a diagnosis presents Fox et al (2006). As a result of life-threatening nature of cancer, psychological distress in cancer patients has been widely studied. Previous studies have indicated that 10-40% of cancer patients suffer from psychological distress (Skarstein, 1999). Vos et al, (2008) reported that 19% of lung cancer patients experienced depression between the time of diagnosis and initial treatment and 35% of them continued to experience the same disorder 6 months after. It is therefore vital to investigate the exact predictive factors of the psychological factors experienced by newly diagnosed lung cancer patients.
The first research paper identified was conducted by Akechi et al (2006). The purpose of the study was to investigate longitudinal changes and predictive factors for psychological distress among newly diagnosed lung cancer patients. The study was conducted among 85 newly diagnosed advanced non-small cell lung cancer patients. Data were obtained in structured interview and validated self-report questionnaires. Psychological distress was evaluated using the 'Profile of Mood State (POMS) scale'. This scale was developed by McNair et al., 1977. The POMS scale according to Akechi et al (2006) is a self-rating scale measuring six emotional sates (tension-anxiety, depression-dejection, anger-hostility, vigor, fatigue, and confusion) and total mood disturbance. It was hypothesized that a lower fighting spirit and a higher helplessness/hopelessness were significant predictors of total mood disturbances. Therefore initial psychological response after lung cancer diagnosis was the most relevant predictor of subsequent psychological distress.
Their findings indicate that initial mood disturbance after the disclosure of a diagnosis of cancer (shock and uncertainty) is the most relevant predictor for subsequent psychological distress and that early intervention beginning immediately after a diagnosis is one way of preventing and/or reducing subsequent psychological distress in lung cancer patients. Initial psychological response after cancer diagnosis seems to continue the subsequent illness trajectory for at least several months, although several dimensions of psychological response, including anxiety and depression, may decrease. In their words, the overall psychological distress does not decrease naturally in the usual clinical care setting.
Their study has several methodological advantages as compared with other studies because the method used for collection and analysis of the data were clearly described in the study which confirms that the qualitative method used was appropriate for the study (Greenhalg, 2001). However it has several limitations and cautions must be used when interpreting its findings. First, it was stated in the methodology that the researchers were not able to obtain longitudinal data on approximately 40% of the potentially eligible subject at the time of the investigation (Akechi et al, 2006). This introduces the possibility of a selection bias (Crombie 1996). The absence of this longitudinal data mentioned demonstrate that individual level change over time could not be studied on 40% of the sample therefore the researchers could not obtain the longitudinal course of psychological distress of those people(Akechi et al, 2006). This indicate that the findings may be distorted by the bias, even though it seems to be very common and one of the most difficult issues that cannot be completely overcome in the studies focusing on advanced cancer patients. Secondly, of all, this study included up to 6 months follow-up after cancer diagnosis, the longitudinal course of patients' psychological status thereafter is unclear. Six months after diagnosis may not be enough long time to evaluate the longitudinal course of distress experienced by advanced lung cancer patients. For example, a recent study, examining the course of psychological distress in metastatic breast cancer patients demonstrated that distress remained constant or declined during the illness trajectory; however distress significantly increased proximal to death (Hill et al, 2002). Considering the prognosis of advanced non-small cell lung cancer patients, it seems plausible that many dimensions of psychological distress, including anxiety and depression, may increase as death approaches.
The convenience sampling method used also poses threat to the generalisation of the findings, because the study subjects consisted entirely of newly diagnosed advanced non-small cell lung cancer (NSCL) patients who visited one Thoracic Oncology Division in Japan. Since patients with other lung cancer types at other sites were not examined in the study, it remains unclear whether the results can be extrapolated to patients with other lung cancer types at other sites.
Lastly, psychological distress after cancer diagnosis was the only significant predictive factor of subsequent psychological distress after cancer diagnosis. To the best of our knowledge, very few studies have addressed the predictive factors for psychological distress in lung cancer patients while several studies have investigated predictors for subsequent psychological distress in other types of cancers (REF). Edward and Clarke (2004) demonstrated that family functioning and patients' illness characteristics were associated with anxiety and depression in newly diagnosed lung cancer patients. Consequently, because the follow-up period in this study was short and the sampling method used caution must be taken when interpreting the findings.
4.2 Anxiety and Depression
Depression refers to an emotional disturbance marked by the cardinal symptoms of persistent and pervasive low mood and the loss of interest or pleasure in normal activities (Skarstein et al, 2000). McPherson (2004) defined anxiety as a feeling of apprehension and fear characterized by physical symptoms such as palpitations sweating, and feelings of stress. Depression and anxiety disorders are thought to be common in palliative cancer care ( Strutkowski et al, 2008).
The first study identified was conducted by Turner et al, (2006). It was a prospective observational cohort study of patients undergoing palliative radiotherapy for lung cancer. The aim was to measure psychological distress and concerns before and after treatment using the 'Hospital Anxiety and Depression (HADS)' and a concern checklist. Participants were selected randomly from radiotherapy clinics in various hospitals. Data were obtained from a group of 83 elderly patients (aged 75 and above) being treated with palliative radiotherapy for lung cancer, with a comparison group of 49 younger patients (aged 65 and under).
They completed the HADS (Hospital Anxiety and Depression Scale) and a concerns checklist before and after treatment. The HADS according to Skarstein, (1999) is an instrument which rates anxiety and depression in patients with physical illness. It has two sub-scales, one assessing anxiety, and another evaluating depression. 'Anxiety and depression subscales of the HADS' were scored using a score of 0-7 = normal, 8-10 = borderline, and 11-21 = probable 'case' (i.e. likely to have the diagnosis of anxiety or depression confirmed after formal psychiatric assessment). The concerns checklist data were examined to provide median numbers of concerns identified by each patient group before and after treatment and, the changes over time were compared statistically.
They hypothesized that majority of newly diagnosed lung cancer patients experience severe level of depression and anxiety. The result of the study shows that the 60% of young group and 40% of elderly group had anxiety. And 30% of young group and 60% of the elderly group had depression. The young group consistently ranked the illness, the future relating to the illness, family and their energy level as their major concern and the elderly group also ranked family and breathlessness as their major concern. This findings suggested that people of all ages have similar concerns and level of anxiety and depression whiles receiving palliative radiotherapy for lung cancer.
A year after a similar study was conducted by Wilson et al, (2007). It examined depression and anxiety disorders in 381 patients who were receiving palliative cancer care. The study group consisted of 212 women and 169 men (age 26-93). Data was obtained through the development of a structured interview of symptoms and concerns. Depression and anxiety disorders were assessed with a modified version of the 'Primary Care Evaluation of Mental Disorders (PRIME-MD) clinician evaluation guide'. The PRIME-ED according to Fox, (2006) provides a quick screening method for a wide range of mental health disorders. The findings of the study suggested that physical symptoms (such as pain and breathlessness) as well as issues about the illness itself and its treatment were more likely to have been addressed. Anxiety and depression were the frequent individual diagnosis. But there was no association between these disorders and the time to death. However it makes it more difficult to treat their physical symptoms.
The findings from these two studies suggest that depression and anxiety disorders are common in newly diagnosed lung cancer patients. However Turner et al (2006) suggested that people of all ages have similar concerns and levels of anxiety and depression while receiving palliative radiotherapy for lung cancer. Turner et al's (2006) findings supported Wilson et al, (2007) because it also established that issues about the illness itself and its treatment outcome were the major concerns of the participants which influence anxiety and depression.
However the two studies are limited to the method used. Turner et al (2006) clearly identified the data collection method used in the methodology. Patients completed the Hospital Anxiety and Depression Scale and the Concerns Check List. The questionnaire was completed by patients during their first visit for radiotherapy using touch-screen technology to record their responses. This method has been validated against paper questionnaire (Holloway and Wheeler, 2002). Some patients also used the paper version of the questionnaire. Data obtained from these two methods were compared in the analysis. Follow up was made during the next visit of patients to their outpatient appointment. Lung cancer specialist nurses were used for the collection of follow-up data. Where this was not possible, questionnaire, along side paid envelopes were sent directly to the participants. Those who returned completed questionnaires were sent a letter of thanks. On the other hand, Wilson et al, (2007) used a diagnostic interview which was a modification of a protocol that has been developed for the rapid screening of mental disorders in primary rather than palliative care. Although it has been used in previous studies in oncology settings, admittedly there is not enough strong body of validating research to support it use (Skarskein, 2000).
Moreover Turner et al's (2006) study was conducted in the United Kingdom while Wilson et al, (2007) was conducted in Canada. This could affect the interpretation of the findings because of the existing cultural differences and healthcare systems among these two countries.
Conversely, in both papers the researchers achieved excellent sample sizes and responses (LoBiondo-Wood, 2006). Greenhalg (2001) stated that when examining studies it is important to distinguish whether the sampling strategy is appropriate for the design of the study and level of evidence provided by the design.
Turner et al, (2006) selected a sample size of 191 patients undergoing palliative radiotherapy in radiotherapy centres in various hospitals. From this, 132 were recruited into the study, 83 elderly and 49 younger patients. Wilson et al, (2007) selected an eligible sample of 381 lung cancer patients receiving palliative care in eight sites across Canada. In both studies the researchers achieved excellent sample size and response rate. The sample sizes were large enough to give an accurate picture of what is going on (Greenhalg, 2001). Crombie (2008) stated that studies which use too small sample size often fail to detect clinically important effects. Moreover both studies used random sampling to recruit participants for the studies. Despite the fact that sample heterogeneity and subject dropout may jeopardize the representatives; random sampling is frequently described as the method of sampling least likely to produce a bias (LoBiondo Wood, 2006).
Nevertheless, each study was presented in a standard format and their vital focus justified and adequately supported by literature. The targeted population and method used to collect data appeared to be appropriate for their aims and objectives. The information gathered represents true accounts and personal experiences that could be applied to psychological theory.
4.3 Grief/hopelessness and the desire for hastened death
Feeling of hopelessness is common reactions of patients as they approach to terminal illness (Rodin et al, 2009). Hopelessness is a psychological construct defined as a "system of cognitive schemas whose common denominator is negative expectations about the future" (Nakaya et al, 2008).
The study to be reviewed was conducted by Mystakidou et al, (2008) the aim of the research was to investigate whether anxiety, depression, preparatory grief and sociodemographic and clinical characteristics could be considered as predictors for feelings of hopelessness in patients diagnosed with advanced cancer treated in a palliative care unit in Athens. The second aim was to examine the relationships among hopelessness, psychological distress, preparatory grief, and sociodemographic and clinical characteristics. 94 patients completed the study. A face-to face interview was used for data collection. The instruments used for data analysis were 'Beck Hopelessness Scale (BHS)', 'Hospital Anxiety and Depression Scale (HAD)' and 'Preparatory Grief in Advanced Cancer Patients (PGAC)'.
From their research, Mystakidou et al, (2008) ascertain that grief, depression, and age serve as predictors of hopelessness. The analysis showed that there is a statistically significant relationship between patients' feelings of hopelessness, preparatory grief, anxiety, depression and the desire for hastened death.
A year after, Rodin et al (2009) examined 406 patients with metastatic gastrointestinal and lung cancer. It was a cross-sectional study focused on a model in which psychological and disease-related variables act as multiple risk factors for psychological distress in patients with metastatic cancer. They hypothesized that high disease burden; insecure attachment, low self-esteem, and younger age were risk factors for depression. Low spiritual wellbeing was a risk factor for hopelessness.
They used semi structured interviews for data collection. From their findings it was ascertain that depression and hopelessness constitute common pathways of distress, which mediate the effects of psychosocial and the disease-related factors on the desire for hastened death. Rodin et al's (2009) findings supported Mystakidou et al, (2008) because it also established that depression and hopelessness are the major determinants of the desire for hastened death. However, Mystakidou et al, (2008) also established that newly diagnosed lung cancer patients with lower self-esteem and more anxious attachment style were at greater risk for depressive symptoms. Indicating that patients who are likely to feel hopeless are more likely to suffer depressive symptoms than depressed individuals are likely to feel hopeless. These research findings point to the potential value for healthcare professionals to apply in the management of psychological problems.
Moreover Mystakidou et al's (2008) face-face interview strengthened the validity and reliability of the research. Face-to-face interviews are time consuming and labour intensive, but can be the best way of collecting high-quality data (LoBiondo-Wood, 2006). Furthermore, the Rodin et al's (2009) cross-sectional survey was advantageous. Although Crombie (2008) argued that it is prone to sample distortion bias, Bowling (2002) stated that it is rapid, inexpensive, and can provide analytical clues.
However the studies have several limitations that should be noticed. First the sample used in Mystakidou et al, (2008) studies was not stratified (Parahoo, 1997). They stated in discussion section that they were unable to specify the determinants of spiritual well-being. The absence of data on very important religious factors such as faith may be problematic. Spiritual well-being is described as being associated with better perceived health-related quality of life in both hospice patients and the chronically medically ill (Sjolander et al, 2008). The findings would have been different if the data would have included people of religious background.
Consequently there appears to be a need to increase the awareness of the correlations between faith and psychological distress in lung cancer patients.
In order that the studies were deemed to be ethically sound, informed consent needed to have been obtained from participants (MacInnes, 1999). Rodin et al (2009) stated within their paper that informed consent was obtained from all participants on selection. In Mystakidou et al, (2008) studies it was stated that the study was performed in accordance to the Helsinki Declaration adopted in 1964 and revised in 1989 (MacLinnes, 1999). The institution's ethics committee approval was also obtained. However there was no clear statement indicating that informed consent was obtained from the participants. Informed consent as (Parahoo, 1997) puts it does not give researchers the right to consult participants medical notes. For research studies which require information from medical records, either the patient or an ethics committee must give an approval. Prior consent from both studies was apparent which by today's standards is deemed ethical. Sample selection headed the implementation of the revised Data Protection Act (Department of Health 1998) and confidentiality of heath information gathered from the participants and their health records were respected (LoBiondo-Wood, 2006). This made their studies to be considered both legal and ethical. Clearly sound clinical research should be underpinned by basic ethical principles. Similarly, the benefits of the research should outweigh the potential harm or risk to the patient. Such principles are based on respect for human dignity, autonomy and truth (MacInnes, 1999).
To conclude this chapter, psychological distress of newly diagnosed lung cancer patients have been identified and explored. Although some limitations were associated with each of the studies, anxiety, depression and hopelessness predict the desire for hasten death. Akechi et al (2006) Concluded that some newly diagnosed lung cancer patients experience severe level of depression and anxiety. Family functioning and patients' illness characteristics were identified as factors that might impact on patients and families depression and anxiety. Wilson et al, (2007) and Turner et al (2006) also concluded that depression and anxiety disorders are common psychological distress of lung cancer patients. Again Mystakidou et al, (2008) and Rodin et al (2009) concluded that grief, depression and age serve as a predictor of hopelessness. Furthermore, both hopelessness and depression predicted the desire for hastened death in newly diagnosed lung cancer patients. Although there were some limitations to the studies evaluated, their findings suggest a very important issue in psychological theory. As such this could be useful for the development of interventions and guidelines for the management of the psychological distress in newly diagnosed lung cancer patients.
Quality of life of newly diagnosed lung cancer patients
This chapter will explore the effect of psychological distress on the quality of life of newly diagnosed lung cancer patients. It will discuss health related quality of life in relation to psychological distress and cancer mortality. Five studies (Faller and Bulzebruck (2002), Nakaya et al, (2007), Esbenzen et al, (2004), Rolke et al, (2008). and Bertero et al, (2008) will be examined using the discussions and analysis of the research to evaluate their findings. (See appendix 3 for research articles). Their research analysis and discussions will be examined using analysis tools to assess the reliability and validity of the research and its findings. To achieve this, 'sub-themes have been identified as follows;
- Negative psychological distress and lung cancer survival.
- The effect of psychological distress on quality of life.
A summary will then be made to conclude this chapter.
5.1 Negative psychological aspects and lung cancer survival
Negative psychological aspects, including depression, and anxiety are common among cancer patients (Mohan et al, 2005). Fox et al (2006) reported that between 8% and 44% of lung cancer patients suffer from depression. Furthermore Julkunen, (2009) suggested that negative psychological aspects affect the prognosis as well as the quality of life of lung cancer patients.
Faller and Bulzebruck (2002) conducted an observational cohort study to examine the influence of psychological variables on the outcomes of cancer. They also studied whether style of coping was predictive of survival in lung cancer. A cohort of 103 patients newly diagnosed with cancer was followed for 10 years in Germany. Their hypothesis was that depressive coping is linked with shorter survival and that active coping is linked with longer survival. The methods used for data collection are 'Karnofsky Performance Scale' and 'Freiburg Questionnaire on coping with illness'.
The results suggested that depressive coping predicts shorter survival times in cancer patients. However due to both low active coping score and the negative results of the self-reports, the findings that active coping was predictive of longer survival should be interpreted with caution. The relationship between coping and survival may be mediated by 'neuroendocrine-immunie pathways' and compliance with medical treatment. In contrast, a psychological variable merely might be a marker reflecting the patient's physical state.
Five years later, Nakaya et al, (2007) conducted a similar cohort study in Japan to investigate associations between negative psychological aspects and cancer survival. The aim was to test the hypothesis that the association between the negative psychological aspects and the risk of mortality among lung cancer patients is confounded by the poor clinical state of the patients. The study included 1178 lung cancer patients. They completed a questionnaire asked about socioeconomic variables, smoking status, clinical symptoms, and psychological aspect after diagnosis. They included tumour stage and emotional distress level. Negative psychological aspects were assessed for the subscales of helplessness/hopelessness and depression. The results of the study showed a significant linear and positive association between depression and the risk of mortality in lung cancer patients. Their data support their hypothesis that the association between helplessness/hopelessness and depression and the risk of mortality among lung cancer patients was largely confounded by the clinical state variables, including the clinical stage and severity of clinical symptoms.
Therefore possible interpretation of the increased mortality observed in cancer patients with negative psychological aspects is that the negative psychological aspects may simply reflect a poor clinical state, which by itself would be associated with an increased mortality in cancer patients. Nakaya et al,'s (2007) findings supports Faller and Bulzebruck's (2002) findings because both of them showed a significant, linear and positive association between depression and risk of mortality in lung cancer patients. They both conclude that psychological distress and cancer mortality is influenced by bio-medical factors like the symptoms of the disease and clinical stage. However, Nakaya et al (2007) suggested that the association between the score in the helplessness/hopelessness and the risk of mortality was confounded by socioeconomic variables and smoking status. Therefore it can be interpreted that smoking and socioeconomic status has great impact on coping and survival in lung cancer (Fox, 2006).
The reliability and validity of these two research and their findings is important in examining the integrity of the papers. Each of the studies was constructive in reporting their findings and presented them using tables, percentages and tests (Cutcliffe and Ward, 2003). A number of measures were also implemented to enhance both the validity and the reliability of the data obtained. Both Nakaya et al (2007) and Faller and Bulzebruck's (2002) conducted a cohort studies which was followed for 10 years. However there was no mention of a pilot study prior to the cohort study to gain an initial impression and to refine their method for the main studies (Cheek, 2000). Pilot studies therefore are not always used in qualitative inquiries as the research is developmental (Holloway and Wheeler 2002).
/To determine whether the sample strata appropriately reflect the population used for the researches and whether the stratifying variables are homogenous enough to ensure a meaningful comparison of differences among strata (Cutcliffe and Ward, 2003). In both papers the researchers achieved excellent sample sizes and response rate (LoBiondo-Wood, 2006). Nakaya et al (2007) achieved the largest sample size (1178) While Faller and Bulzebruck's (2002) used smaller sample sizes of 103. However Faller and Bulzebruck's (2002) clearly stated the criterion for the selection of the samples which clearly describes the groups of participants used for the study. A final number of 103 patients entered the study. Participants' mean age was 59 years, 83% were male and 79% was married, the highest level of education in 84% of the total participants was middle school. The lung cancer types of the participants were also explained. The criteria for the selection reflect the important differences in the population under investigation and also ensure a meaningful comparison of differences among the strata (Parahoo, 1997). Nakaya et al (2007) achieved an excellent sample size for the study; they were not explicit about the type of sampling strategy that was used in the methodology.
The relationship of the two studies findings to the strengths and validity of the tools devised to measure variables were outlined. Both researchers explained their methodology in great detail. The method identified for both studies is qualitative. They used interviews and questionnaires for data collection. Although examples of the questions used were not stated in the paper, appropriate measurement tools used were stated. Faller and Bulzebruck's (2002) used the Karnofsky performance scale while Nakaya et al (2007) used the Japanese version of the Hospital Anxiety and depression scale. Although different interview strategies and measurement tools were used for these two separate researches, they all measured the same variable.
Furthermore, both studies used observation and questionnaires to collect their data. Although most people have reported to express themselves better through the spoken word than questionnaires, questionnaires are said to be rapid and efficient method of gathering data. And also one of the easiest tool to test for reliability and validity (Parahoo, 1997). Observation on the other hand may be subject to observer bias; however it has an advantage of being the best way of recording human behaviour (Greenhalg, 2001).
Moreover the effects of possible Japanese culture on the findings of Nakaya et al (2007) studies have to be taken into consideration when interpreting the findings. Because, in Japan, a diagnosis of cancer is still often considered to be the equivalent of death sentence and the disclosure of a cancer diagnosis is not universally practice (Okuyama, et al, 2007). Although it was mentioned that the institution at which the study was conducted is exceptional in that a cancer diagnosis is usually disclosed to the patient, cultural differences in patient-physician communication and the social meaning of a cancer diagnosis may have influenced the psychosocial factors that were investigated and consequently may be associatet with the findings.
Both studies identified the advantages and limitations of their studies by examining the methodologies of these research studies. Recommendations for improving future studies in relation to the possible association between risk factors and lung cancer mortality were proposed. These indicate that their research would be of sound quality.
5.2 The effect of psychological distress on quality of life
Quality of life is a multidimensional phenomenon that can be influenced by the experience of living with lung cancer (Sarna et al, 2005). The experience of living with a potentially fatal illness such as lung cancer can have negative and positive influences on physical, psychological, social, and spiritual dimensions of daily living (Mohan, et al, 2005). In comparison with other cancer types, patients with lung cancer report the greatest amount of psychological distress (Garssen, 2004).
Esbenzen et al, (2004) conducted a study to investigate quality of life (QoL) in elderly persons newly diagnosed with cancer (65+ years) in relation to age, contact with the health-care system, ability to perform activities of daily living (ADL), hope, social network and support, and to identify which factors were associated with low quality of life. The sample consisted 101 patients (75 women and 26 men) newly diagnosed with cancer (breast, lung, gynaecological, or colorectal cancer). 'Nowotny's Hope Scale', 'Activities of Daily Living-Index (Katz ADL)' and structural 'Interview Schedule for Social Interaction (ISSI)' were used for data collection. They hypothesised that limited resources and low level of hope for an elderly person newly diagnosed with cancer were associated with higher risk for low QoL. The result of their findings suggested that the type of cancer diagnosis and perceived seriousness of it were of importance to QoL. Their results are relevant for nursing care for elderly persons newly diagnosed with cancer as the situation of elderly persons with cancer cannot be understood as simply a function of chronological age, or be perceived as an individual process with certain individual characteristics of events and situations.
Four years later a similar study was conducted by Rolke et al, (2008). The aim of the study was to assess health related quality of life (HRQL), anxiety and depression and coping abilities in an unselected population of patients with newly diagnosed primary lung cancer in southern Norway. A total of 492 consecutive patients originally diagnosed with primary lung cancer were included in the study. The European Organisation for Research and Treatment of Cancer's Quality of Life Questionnaire and the Hospital Anxiety and Depression Scale (HAD) been used for data collection. Their findings indicated that one in four patients with newly diagnosed lung cancer had scores consistent with manifest anxiety and/or depression. Patients with anxiety and depression had a lower sense of coherence score which indicate that anxiety and depression in patients increases their poor performance status. Anxious and depressed patients reported significantly more fatigue, insomnia, sore mouth, nausea, dysphagia and financial trouble than non-anxious and non-depressed patients. Patients with combined mood disorders reported worse physical, emotional, social, and cognitive function and global health related quality of life scores.
In the same year, Bertero et al, (2008) conducted a similar study to identify and describe how persons receiving a diagnosis of inoperable lung cancer experience its impact on their life situation and quality of life. 23 Swedish patients diagnosed and starting palliative treatment for inoperable lung cancer were interviewed. An interpretive phenomenological approach was used in this study, in an attempt to understand the lived experience described by the persons diagnosed with an inoperable lung cancer. In phenomenological research the question grows out of an intense interest in a specific topic and in order to gain a deeper understanding of human beings experiences, phenomenological approaches have to be used (Holloway and Wheeler, 2002). They hypothesise that uncertainty, experience of hope, thoughts of death and feeling of guilt and shame affect quality of life in newly diagnosed lung cancer patients. The findings of the study indicated that experiencing hope was an important factor influencing quality of life, the most significant experience expressed by the informants regarding hope was the possibility of cure or improvement. The findings of this study also points out the importance of improving the care of people afflicted with lung cancer, and promote support for the next of kin since they have been found to be significantly important for these patients' experiences of quality of life. Network as support identified in this study are communication (talking about the health situation and sharing feelings that arise), friends and healthcare professionals, especially nurses.
The findings from all three studies suggest that psychological distress (anxiety, depression, low level of hope, feeling shame and guilt) have a great impact on newly diagnosed lung cancer patients' quality of life. The findings is also shown in a study by Delvlin et al, (1992) which support the hypothesis that the most difficult emotion facing patients with lung cancer is the knowledge that they may have contributed to the development of the disease by smoking, therefore communicating the diagnosis of lung cancer encourages patients to ask questions and gain adequate information about their diagnosis and makes them feel reassured. Patients appreciate and highly value healthcare professionals' support for next of kin this makes them feel secured and confident.
This confirms Bertero et al, (2008) suggestion that effective communication, emotional support as well as practical support at home and during other activities reflect on the quality of life of newly diagnosed lung cancer patients.
The knowledge and understanding of these researches can be useful for the development of interventions and guidelines for managing lung cancer.
The major critical comment to these studies would be evaluating the adequacy of data-collection methods. All three studies clearly identified data collection method used. Each of the studies used interview techniques and questionnaire to conduct their research. In Rolke et al's (2008) studies, there was a low response rate to questionnaire, introducing a considerable possibility of selection bias. However there are many reasons for not answering questionnaire in this context. First because patients were unselected, some were too sick or fatigued to answer. When handling an unselected sample of patients with newly diagnosed lung cancer, a higher proportion of patients will be in advanced tumour stage compared with studies performed with selected patients. Secondly some felt too shocked to answer questionnaires shortly after being told of the diagnosis and several other patients refused to answer the questionnaire as they found the questions too personal. Fourth for those answering questionnaires by email, patients who were referred for surgery were not reached before being hospitalised for surgery. Questionnaires should according to the protocol be answered in the current condition, and not retrospectively. (Greenhalg, 2001). This could affect the validity of the response.
Considering the large sample used for the research it is believed that the response rate reported in Rolke et al's (2008) studies are high standards for an unselected sample of patients with newly diagnosed lung cancer. However, this does not reduce the possibility of selection bias.
Esbenzen et al, (2004) used purposive sampling. They selected patients from a weekly referral list to the oncology clinic. This sample selection might be biased by being restricted to patients referred to an oncology clinic for special assessment and with a purpose to treat the cancer. Therefore some groups of elderly persons with cancer were not represented in the study, for example the frailest patients. However the study provides useful information about elderly persons with cancer referred to an oncology clinic. It may be that the mere fact of being referred to hospital department in itself could possibly have a positive influence on quality of life, because it can be perceived by patients that they are in the hands of qualified professionals therefore they receive the best available treatment, which could lead to higher hope. Lastly, the small sample size (23) used in Betero et al (2008) studies did not allow for adequate testing of relationships and interactions of multiple variables, thus limiting generalizability of findings to other people.
Despite the limitations, the reliability of the results of these researches is supported by the fact that appropriate research interviews were used. Collecting data in terms of a structured interviews has strengthens the result of Bertero et al,'s (2008) studies. Structured interview is known as 'non-directive' as the interviewer does not 'direct' interviewees to topics but allows them free expression. The task of the interviewer, in this case, is to the flow of information with as little interruption as possible (Greenhalg, 2001). Bertero et al,'s (2008) interviews were conducted at a place convenient to the patients. Some interviews were conducted at the patients' homes, and some in a special room at the hospital.
The interviews varied in length between 40 and 100 minutes, they were audio-taped and transcribed verbatim. Each interview was read and re-read and data concerning the 'lived experiences' of newly diagnosed lung cancer patient was underlined. Esbenzen et al, (2004) also developed a specific questionnaire and used two oncology nurses to use face-face interview method to interview the participants in a confined room in the oncology unit. This method is time consuming (LoBiondo-Wood, 2006), but has the advantage creating a situation based on comfort and trust. It has been highlighted that this specific method is suitable for elderly persons, because more complicated and emotional questions can be asked, and misinterpretations can be checked immediately (Greenhalg, 2001). Furthermore, the phenomenological approach used by Bertero et al (2008) is described as a suitable method for data collection in their research. The emphasis on allowing or facilitating the participants to talk freely about the topic, and questions are asked in an attempt to seek clarification, illustration or further exploration (LoBiondo-Wood, 2006).
From the literature identified so far Nakaya et al (2007) concluded that psychological distress reflect a poor clinical state, which by itself would be associated with an increased mortality rate. Faller and Bulzebruck's (2002) also concluded that depressive coping predicts shorter survival while active coping predict longer survival in newly diagnosed lung cancer patients. Esbenzen et al, (2004), Rolke et al (2008) and Bertero et al, (2008) all concluded that anxiety; depression and low level of hope has a significant impact on newly diagnosed lung cancer patients. However Bertero et al, (2008) revealed that experiencing hope is an important factor when talking about quality of life. Although there were a lot of limitations which question the reliability and validity of the research papers used, the findings point out the importance of improving the care of people afflicted with lung cancer in relation to psychological problems. This knowledge and understanding will be useful for healthcare professionals when caring for newly diagnosed cancer patients.
SUMMARY OF FINDINGS
In summary, the literature reviewed explored issues of psychological distress and its impact on bio-medical and quality of life of newly diagnosed lung cancer patient. It could be considered that psychological distress is common in newly diagnosed lung cancer patients. Initial psychological distress after cancer diagnosis is the most important predictor of subsequent psychological distress and that early intervention immediately after the disclosure of a diagnosis of cancer is one way to prevent and/or reduce subsequent psychological distress in lung cancer patients. Depression, anxiety, hopelessness, grief, felling of guilt and shame influences the desire for hastened death. People of all ages have similar concerns and levels of anxiety and depression while receiving radiotherapy for lung cancer. Style of coping predicts survival in lung cancer patients. Low level of hope for an elderly person newly diagnosed with lung cancer is associated with a higher risk for low quality of life.
Depression is strongly associated with poor clinical state such as tumour stage, performance status, and severity of clinical symptoms. Thus in general, psychological distress is highly prevalent among newly diagnosed lung cancer patients: consequently, these psychological issues should not be neglected. Moreover improving the care of newly diagnosed lung cancer patients and promoting support for the next of kin, is significantly important for these patients' experiences of quality of life.
7.1 Limitations of the work reviewed including any research and ethical limitations
There are several limitations in relation to the topic and the literature that were reviewed which may explain conflicting findings. This chapter will explain these research limitations. In order to be able to explain them fully they have been grouped into sub- themes as follows:
- Research methodology
- Cultural considerations
7.2 Research methodology
All of the research studies reviewed used qualitative methods. This means that majority of their data was obtained through interviews and questionnaires. Although the method used to analyse data were mentioned in the studies, detailed information regarding the approaches was not given. For example in four of the studies (Rolke, 2008, Mystakidou, 2008, Turner, 2007, and Nakaya, 2007) the researchers used only questionnaires for data collection however they did not explain why they considered using questionnaires and not interviews or did not include interview. Moreover they did not include detailed content of the questionnaire. Again, for those studies (Wilson, et al, 2007, Bertero, et al, 2008, and Esbensen et al, 2004) which included interviews, detailed description of the questions used were not included. Therefore it was not clear whether the intent of the questions and the nature of the information sought were clear to the respondent. (Greenhalg, 2001).
In some of the studies (Esbenzen, et al, 2004, Wilson et al, 2007 and Bertero et al, 2008), the hypothesis was stated in the discussion section which makes it difficult to evaluate the strength and weaknesses of the hypothesis in the studies. In most of the studies, hypothesis is clearly written in a separate hypothesis section of the research (Greenhalg, 2001). This makes it easier to follow the research parten.
The method used in Turner et al (2006) studies is prospective observational study. In their study, observational check list was not clearly described in the study which could affect the validity and reliability of the findings. furthermore, data obtained by observational methods could be vulnerable to the bias of the observer because, people's emotions and opinions can affect their behaviour. Therefore making judgment about the adequacy of observational methods, it is important to consider how observational tools were constructed and how observers were trained (Holloway and Wheeler, 2002).
Small sample used in some studies and the use of focus groups could affect the generalisation of the findings. Bertero et al (2007) used very small sample size of 23 newly diagnosed patients. Again, Akechi et al, (2006) examined newly diagnosed patients with advanced (NSCLC) patients only to test for the cour
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