The impact of lung cancer on patients and carers

Abstract

This article aims to provide a brief review of the literature with regard to the impact of lung cancer on patients and their informal carers. Compared to other types of cancer, the distress associated with lung cancer has been found to be the most intense. Rather than focusing on symptoms in isolation recent emphasis regarding the symptom experience has been on symptoms clusters, as understanding these clusters may improve the management of ongoing and unrelieved symptoms. However, the disparities in methodology are significant barriers to producing comparable results, although recent efforts have been made to address these. Whilst research into symptoms has enormous potential for the management of symptom clusters, it needs to move away from the essentially reductionist stance which currently dominates and broaden its scope to one that acknowledges the complexity of the experience of symptom clusters from the perspective of the patient and their informal carer. Poor management of symptoms complicates patient care and potentially contributes to the heavy burden which often falls on family caregivers, especially as the disease progresses. The majority of studies focus on the experiences of primary care providers, most often the partner/spouse. Such studies have shown that spouses of patients with lung cancer exhibit significant distress and lower levels of quality of life than the general population. Research also indicates that significant others go through a transition process due to changes brought about by the diagnosis of lung cancer and struggle to endure and overcome difficulties and distress. Significant others were seen to suffer during this process of transition and experienced altered relationships. Clinicians working with patients suffering from lung cancer and their carers should intervene to enhance their quality of life from diagnosis, during the disease trajectory and during bereavement. Interventions need to be developed to support both patients and carers.

Introduction

Lung cancer was the most commonly diagnosed cancer as well as the leading cause of cancer death in males in 2008 globally. Among females, it was the fourth most commonly diagnosed cancer and the second leading cause of cancer death. Lung cancer accounts for 13% (1.6 million) of the total cases and 18% (1.4 million) of the deaths in 2008. ¹ The aim of this article is to provide a brief review of the literature with regard to the impact of lung cancer on patients and their informal carers.

Smoking accounts for 80% of the worldwide lung cancer burden in males and at least 50% of the burden in females. ^2,3 Other known risk factors for lung cancer include exposure to several occupational and environmental carcinogens such as asbestos, arsenic, radon, and polycyclic aromatic hydrocarbons. ⁴ Despite their lower prevalence of smoking (less than 4% adult smokers) ⁵ Chinese females have higher lung cancer rates than those in certain European countries such as Germany (16.4) and Italy (11.4). The relatively high burden of lung cancer in Chinese women is thought to reflect indoor air pollution from unventilated coal-fuelled stoves and from cooking fumes in China. ^{6 –8}

Lung cancer is divided into two forms: small cell lung cancer (SCLC) and non-small cell lung cancer (NSCLC). Advances in the treatment of lung cancer have resulted in a slow increase in survival rates, with a 5-year survival in Europe being 12% and significantly lower in the United Kingdom. ⁹ For the majority of lung cancer cases the average survival period from diagnosis is only 8 months. ¹⁰ Cancer stage is currently the most important prognostic indicator for survival. ¹¹ The high mortality rates associated with lung cancer reflect the fact that the majority of patients are diagnosed when their lung cancer is at a relatively advanced stage, often involving a high symptom burden. ^12,13

Patient symptomatology

Patients with lung cancer often suffer from multiple symptoms simultaneously related to both from the primary disease itself and from its treatment. ^14,15 During this period, the patient may often undergo a range of invasive and/or toxic treatments potentially including surgical intervention, chemotherapy, and radiotherapy, along with supportive and palliative care. Patients’ health inevitably declines over this period as a consequence of both the illness trajectory and the side-effects of treatment. ¹⁶

Compared to other types of cancer, the distress associated with symptoms arising from lung cancer ¹⁷ has been reported as the most intense. The symptoms of lung cancer patients are a major detriment to their quality of life (QoL). Respiratory symptoms, like dyspnoea, cough, and haemoptysis, are highly prevalent and cause profound distress at the time of diagnosis and as disease progresses. ¹⁸ Sleep disturbance among lung cancer patients has been noted but poorly studied. ¹⁹ Pain and dyspnoea affects between 63% and 88% of patients with lung cancer cared by palliative care services. ²⁰ These symptoms have profound secondary effects on patients’ emotional, social, and spiritual well-being. ^15,21,22 Levels of psychological distress have been reported to be as high as 43% for clinical depression ^23,24 and 17% for clinical anxiety, ^25,26 and 60% for overall emotional distress. ^27,28

In the palliative care setting depression, severe grief reactions, and demoralization are common types of disorders experienced by patients (and caregivers) ²⁹ However, as Strada points out while commonly recognised as separate diagnostic entities, these disorders share many symptoms, making their differentiation challenging. Accurate diagnosis is crucial because of its treatment implications. ²⁹

Furthermore, patient anxiety increases in advanced cancer, when symptom burden is high and physical function is poor. ³⁰ A recent perspective observational evaluation of 170 patients with lung cancer using an adapted palliative outcome scale questionnaire ³¹ confirmed this and further observed that specific clinical variables of dyspnoea, cough and haemoptysis, and decline in performance status were associated with increased anxiety. It was also found that as the patient’s own anxiety increased, they also perceived increased anxiety within their own social network. All of the aforementioned symptoms are likely to interfere with the patient’s ability to participate in their daily activities, ³² and unrelieved symptoms can have delirious effects on a patient’s functional status and quality of life (QoL). ³³

A small literature suggests that lung cancer patients have significantly more unmet supportive care needs than any other cancer patients. ^{34 –36} Results from a US study ³⁶ demonstrates that a large majority of patients experience unmet supportive care needs across multiple domains and having unmet supportive care needs is associated with dissatisfaction with health care providers and mood disturbance. Sanders et al. ³⁶ suggest that efforts to improve the clinical assessment of supportive care needs could improve patient satisfaction with care and QoL outcomes in patients with lung cancer.

In recent years increasing attention regarding the symptom experience has been directed to examining symptoms that occur in conjunction rather than in isolation, especially among patients with cancer, as there is a growing awareness that symptoms frequently co-occur in ‘symptom clusters.’ Understanding these clusters more effectively may improve the management of ongoing and unrelieved symptoms in patients. ³⁷ The term symptom cluster was first conceived by Dodd et al. ³⁸ A recent review ³⁹ of symptom clusters patients with lung cancer found that the number of symptoms in a cluster ranged from 2 to 11. The only cluster that was consistently identified in two studies was composed of nausea and vomiting symptoms. Respiratory clusters identified in two studies were also comparable, containing both dyspnoea and cough, among other symptoms. Methodological disparities, including differences in sample population characteristics, assessment tools, and analytical methods, were evident in the five studies reviewed. These inconsistencies result in a lack of consensus in symptom clusters in lung cancer populations, thus impeding the determination of clinically relevant findings. The authors conclude that symptom cluster exploration is promising in providing insights not only into symptom management but also into diagnosis and prognostication. However, it was also found that disparities in methodology are significant barriers to producing comparable results.

While recent efforts have been made to overcome methodological discrepancies, ^40,41 these studies reflect quantitative approaches, which are not based necessarily on theoretical constructs developed through qualitative studies of the patient experience. Hence the symptom experience within the lung cancer population is poorly understood in comparison with other forms of cancer. ^42,43 There is a relative dearth of information about patients’ symptom experiences and QoL within this population. ^{44 –46} This is due to the fact that the majority of research examining symptom experiences and patient distress has taken a quantitative cross-sectional approach. Patients’ values and priorities with regard to QoL issues may change during the disease trajectory and what is most salient and distressing for a patient may not remain consistent over time. ³⁷ Previous theoretical research examining patient symptomatology and distress has often assessed current levels of symptom frequency and symptom intensity as proxy measures of patient distress. Tishelman et al. ⁴⁷ found that the frequency and intensity of symptoms are often not reflected in the distress reported by this patient group. This may reflect the fact that patients may attach differential levels of importance to distinct dimensions of QoL; the distress patients experience in response to a particular symptom may be a consequence of the aspects of QoL it impinges upon in addition to factors such as the symptom frequency, severity, and duration. ³⁷

A recent in-depth qualitative longitudinal exploration of lung cancer patients’ symptom experiences ³⁷ examined patient symptom experiences and distress across the disease trajectory of lung cancer. This study is one of the few available longitudinal qualitative explorations of the lung cancer patient symptom experience to date. Semi-structured interviews were conducted with patients and their primary caregivers at 4 time points: at the beginning of treatment and then subsequently at 3, 6, and 12 months. Interpretative phenomenological analysis was employed in the data analysis. The findings indicate that a cluster of interacting respiratory symptoms (cough, fatigue, and breathlessness) play a central role in patients’ symptom experiences within the lung cancer population. The findings from this study also suggest that symptoms such as cough, which are underrepresented in research within this population, may play an important role in patients’ symptom experiences.

Maguire ⁴⁸ also explored the experience of symptom clusters in advanced lung cancer patients at 2 time points: on recruitment and at 5 weeks. Interpretative phenomenological analysis was also used for data analysis. The findings highlighted how the experience of symptom clusters in patients with advanced lung cancer was characterized by two super-ordinate themes: the lived experience of symptom clusters and the role of context and meaning and ‘symptom clusters and loss of sense of self.’ The super-ordinate theme of ‘the lived experience of symptom clusters and the role of context and meaning’ in the first instance illustrates that the participants in this study were experiencing symptom clusters and providing detail on the components, nature, and patterning of the symptom clusters reported, particularly the way that one or two salient symptoms were commonly highlighted from all the other symptoms experienced. This super-ordinate theme also demonstrates the core role that context and meaning play in the lived experience of symptom clusters, with many of the participants in this study framing their experiences of symptom clusters within a fear of death, stigma, and loss of sense of self.

Such studies highlight the limitations of definitions that currently underpin the study of symptom clusters in patients with cancer and the current empirical base to date, particularly the way that they do not acknowledge the core role that context and meaning play in the lived experience of this phenomenon. This lack of recognition of these core elements of the patient experience of symptom clusters poses the risk of this body of research producing data that have limited relevance to the patient and therefore clinical practice. Therefore, the study of symptom clusters in patients with cancer needs to move away from the reductionist approach which currently dominates and to broaden its scope to one that acknowledges the complexity of the experience of symptom clusters, the core role that context and meaning play in such experiences, and contributions that patient experience can make in advancing this important and emerging body of research. ⁴⁸

Despite the need for more research into symptom clusters, researchers have recommended that research into single symptoms needs to continue, ⁴⁹ particularly cough for as previously mentioned this had not received the same attention as other cancer symptoms. This means that patients’ experience of a distressing and difficult symptom is often unnoticed by health care professionals. ⁵⁰ The study by Molassiotis and colleagues ⁵⁰ was the first to explore lung cancer patients' experience of cough. This was a qualitative exploratory study that elicited the views of 26 patients with lung cancer who had current or past experience with cough. The data’s four themes highlight the complex and distressing nature of cough, including its interaction with other symptoms, such as breathlessness, fatigue, and sleep disturbance. A theme around descriptions of cough suggests typically a dry tickly cough and highlights mechanical and environmental triggers for cough. The theme around the effects of cough in daily life shows the impact of cough in socialising, the embarrassment from cough, and the psychological effects experienced by patients. The last theme focuses on strategies for coping with and managing cough, showing the perceived ineffectiveness of current antitussives and the patients’ use of a variety of approaches on an ad hoc basis to try to manage their cough. Their findings suggest that cough is a distressing symptom linked with breathlessness that has a significant impact on physical and psychological functioning as well as on social interactions and advocate that more clinical and research attention in this debilitating symptom is necessary.

The impact on carers

Poor management of symptoms complicates patient care, potentially effects QoL and hospital admissions and contributes to the heavy burden which often falls on family caregivers, as patients often rely on these informal caregivers for many daily activities, especially towards the end of life when the illness burden increases. ⁵¹ Families also contribute to maintaining the well-being of people with lung cancer through providing emotional and practical support, frequently at a significant cost to their own well-being and often with little support from health care professionals, but often feel unsupported in their role as caregivers. ⁵² Even if giving care to an ill family member is not an entirely negative experience, ⁵³ findings demonstrate that it contributes to mental and physical ill health and has consequences for social functioning. ^{53 –56}

The majority of studies focus on the experiences of primary carers, most often the partner, and the impact caregiving has on their life situation and health. Impact on significant others (family members) has been related to caregiver burden, ^{57 –59} depression, ^58,60 physical health, ⁶⁰ stress, ⁶¹ distress, ^62,63 social functioning, ⁶⁴ and QoL. ⁶⁵

A secondary analysis ⁶⁶ found that carers followed clear patterns of social, psychological, and spiritual well-being and distress that mirrored the experiences of those for whom they were caring, with some carers also experiencing deterioration in physical health that impacted their ability to care. Psychological and spiritual distress were particularly dynamic and commonly experienced. In addition to the ‘Why us?’ response this analysis revealed that witnessing suffering triggered personal reflections in carers on the meaning and purpose of life. Certain key time points in the illness tended to be particularly problematic for both carers and patients: at diagnosis, at home after initial treatment, at recurrence, and during the terminal stage. They concluded that family carers witness and share much of the illness experience of the dying patient. The multidimensional experience of distress suffered by patients with lung cancer was reflected in the suffering of their carers in the social, psychological, and spiritual domains, with psychological and spiritual distress being most pronounced. Based on these findings, the authors stress that carers may need to be supported throughout the period of illness not just in the terminal phase and during bereavement, as currently tends to be the case.

Those close to someone diagnosed with lung cancer are likely to be deeply distressed. ^66,67 They may experience difficulty in expressing or acknowledging their distress in their encounters with health professionals. ^34,68,69 The limited body of research that is available has shown that more than a third of spouses of lung cancer patients exhibit significant distress ^40,70 and lower levels of QoL than the general population. ⁷¹

Persson et al. ⁷² compared health-related QoL (HRQoL) in significant others of patients dying from lung cancer, with a general population sample. Further, they explore the course of HRQoL from diagnosis (T1), at a time point close to the patient’s death (T2), and 6 months after the patient’s death (T3). The group comparisons at T1 showed that the significant others scored significantly lower on the scales in the mental domain compared with a general population sample. These results were the same at T3, when the significant others also scored lower on most of the scales in the physical and social domains. In the longitudinal analyses, there were significant changes in four scales, and three patterns of change were identified: a decrease–increase pattern for ‘self-rated health’ and ‘positive affect’; a constant decrease pattern for ‘family functioning’; and a decrease–stable pattern for ‘satisfaction with family functioning.’ Thus, living with inoperable lung cancer in the family and then facing the death of a family member affects most of the HRQoL dimensions.

To illuminate the meanings of significant others’ experiences of their situation after a family member had been diagnosed with inoperable lung cancer, Persson and Sundin ⁶⁷ analysed narratives from 12 significant others, using a phenomenological hermeneutic approach. Findings revealed four themes: feeling dislocated in life, being in an altered relationship, being in a struggle, and feeling secure. For Persson and Sundin the significant others’ experiences indicated a transition process because of the changes brought about by the diagnosis of lung cancer and a struggle to endure and overcome difficulties and distress on the way to regaining a smooth functioning life. Furthermore, the diagnosis of lung cancer had altered the relationship towards the next of kin and meant not only feelings of increased closeness but also loss of intimacy and reciprocity. The significant others suffered in this process of transition, and health care professionals, who recognise the World Health Organization’s definition of palliative care, may consider the findings of this study useful when reflecting on their care of families.

Meeting the needs of family members is recognised as an integral component of cancer services. ⁷³ However, how best to meet these may prove challenging for health care professionals and little is known about the interventions that might prove to be effective and how to implement these into routine practice. In a recent review of caregivers’ needs, ⁵¹ it was found that despite this reliance on informal carers, they did not feature in any self-care symptom management programmes, receive little practical support and require more practically focused information.

Reporting on the main findings from a pilot study ⁷⁴ demonstrating that a combination of emotional support and information, underpinned by assessment, led to family members feeling well supported. This was found to have a significant impact on their emotional well-being. Plant et al., ⁵² describe nurses experience of providing an innovative service to support the families of people with lung cancer. Three main themes related to nature and process of delivering the intervention were identified: meeting diverse needs; differing models of delivery; and dilemma and emotion. The intervention offered family members an ongoing, reliable relationship and individual support and advice as they needed it. The exact nature of the intervention was driven by a complex interplay of patient and family member need, as well as an underlying focus of care of the nurse delivering the intervention. This is one of the few interventions specifically to support carers. Further evaluation is obviously required to determine the wider applicability and acceptability of this intervention. However, if carers are to be better supported, it is crucial that interventions are developed that acknowledge the complexities involved.

Conclusions

A diagnose of lung cancer has widespread ramifications affecting a person’s physical, emotional, social, and spiritual well-being. The literature consistently shows that changes in functional status due to the biological symptoms of lung cancer as well as the side effects of treatment affect the QoL in patients and carers. It also highlights that lung cancer patients experience multiple symptoms simultaneously. Compared to other types of cancer, the distress associated with the symptoms arising from lung cancer has been reported to be the most intense. Rather than focusing on symptoms in isolation, recent emphasis regarding the symptom experience has been on symptom clusters, as understanding these clusters may improve the management of ongoing and unrelieved symptoms. The relationship between aspects of patients’ symptom experiences can be complex and the mechanisms underpinning this association are not fully understood at present and disparities in methodology are significant barriers to producing comparable results, although recent efforts have been made to address these.

If the symptom experience is to be better understood, it is that crucial symptom cluster research broadens its scope to one that acknowledges the complexity of the symptom clusters experience. Longitudinal qualitative investigation offers a valuable method for improving our understanding of patients’ and carers’ symptom experiences of lung cancer and for identifying potential opportunities to improve the QoL of patients and carers. The complexity of the issues involved in the development of symptom distress also needs to be recognised by health care professionals in this poor prognosis group of patients. There is also a need to explore symptoms that have previously received little attention, such as cough, as this may play an important role in patients’ symptom experiences.

The burden experienced by family members supporting people with lung cancer appears to be well described. However, the majority of studies focus on the experiences of primary care providers, most often the partner and the impact caregiving has on their life situation and health. Research suggests that significant others experience a transition process because of the changes brought about by the diagnosis of lung cancer and a struggle to endure and overcome difficulties and distress. They also appear to experience altered relationships and suffering during this process of transition. There is evidence to suggest that clinicians working with patients suffering from lung cancer and their carers (and significant others) striving to achieve the best QoL, should intervene to enhance their QoL from diagnosis, during the disease trajectory and during bereavement. They also need to consider how they might support carers through any transition process. However, if carers are to be better supported, it is crucial that interventions are developed that acknowledge the complexities involved.