Exploring Experiences of Survivors and Caregivers Regarding Lung Cancer Diagnosis, Treatment, and Survivorship.

BACKGROUND: Advances in screening and treatment approaches alongside changing population demographics have the potential to influence the experience of living with lung cancer. There is potential for improved outcomes and quality of life for those diagnosed with the disease.
OBJECTIVES: This exploratory study was undertaken to gain insight regarding the current experiences of individuals diagnosed with lung cancer and their family caregivers given the evolving changes in lung cancer screening and treatment.
METHOD: A qualitative descriptive design was utilized and in-depth interviews conducted with 8 survivor and 4 family caregivers. Interviews were subjected to a conventional content analysis.
RESULTS: Participants identified challenges related to being diagnosed in a timely manner, being told the diagnosis with compassion, coping with multiple symptoms during treatment, and regaining a new normal following treatment. Dealing with late effects of treatment (ie, fatigue, shortness of breath, neuropathy) was frustrating when individuals were not aware the effects would emerge or had not had relevant self-management instructions.
CONCLUSIONS: Lung cancer survivors constitute an emerging cadre of survivors. Attention is needed to their preparation for, and coping with, the survivorship transition.

Introduction and Background

The number of individuals diagnosed with lung cancer is expected to double over the next 30 years. Currently, 28 600 individuals are diagnosed with lung cancer annually in Canada with a 5-year survival of 17% (1). However, the context of lung cancer today is complex and evolving. Advances in science and technology as well as changing population demographics have the potential to change the lung cancer experience for patients and family members.

The emergence of molecular diagnostic testing and targeted therapies offers definitive promise for reducing the growth of lung cancer (2 -4). Early identification of the disease is now possible and offers hope for cure or a lengthy period of living with controlled disease (5). Scientific advances also offer opportunities to manage symptoms and side effects effectively (6,7) and improve quality of life. Targeted therapies will change current side effect profiles and oral therapies will result in more care delivered in community settings (8). With the growing population of individuals over 65 years, a significant percentage of persons diagnosed with cancer will have an increased likelihood of existing comorbidities (eg, diabetes, cardiovascular disease, Chronic Obstructive Pulmonary Disease (COPD), arthritis, etc), adding to the complexity of treatment and coping (9 -11). Additionally, many family caregivers will be older and may be challenged to provide assistance to their relatives. These changes have implications for care delivery and support (12).

Patients with lung cancer and their family members experience significant levels of unmet supportive care needs (13 -16). Harrison et al (17) reviewed a series of 94 quantitative studies and reported unmet needs in several domains: physical (7%-89%), psychological (12%-85%), informational (6%-93%), spiritual (14%-51%), sexuality (33%-63%), and activities of daily living (1%-73%). Similarly, Lambert et al (18) reported unmet needs for caregivers of patients with lung cancer following a review of 29 studies: comprehensive cancer care (1.1%-96%), emotional/psychological (3%-93.2%), impact of activities of daily living (2.8%-79%), relationships (3%-58%), informational (2.2%-86%), and spiritual (2%-43%). The nature of the needs vary depending upon a number of factors including stage of disease, treatment modality, age, and location of residence. The changing dynamics of the lung cancer experience may also influence the nature of these unmet needs in the future.

Missel et al (19) conducted a meta-synthesis of qualitative studies exploring supportive care needs of patients with lung cancer. The following thematic insights were reported as significant across the studies: diagnosis is a shock, everyday awareness of change, one’s body is unfamiliar, social relationships are disrupted, life is now a new situation that needs to be dealt with, and there is a need for support. Rohan et al (20) also explored key issues for lung cancer survivors. Drawing from 21 in-depth interviews, 4 significant themes emerged: feeling blamed for having caused their cancer, being stigmatized as “throwaways,” surprise they are still alive (given the survival rates), and desire for increased public support. Such stigma has an influence on seeking medical help for initial concerns about symptoms (21) and lung cancer outcomes (22). Steinvall et al (23) reported the following themes related to needs of caregivers for patients with lung cancer: balancing a changed life situation, dealing with uncertainty, shifting interpersonal relationships, and dealing with false hope.

In terms of service delivery, Krishnasamy et al (24,25) identified an urgent need for approaches to improve service provision for lung cancer. Strategies were recommended to encourage early presentation to family doctors, evaluation of rapid diagnostic clinics, and development of clinical pathways to confirm diagnosis. Additionally, the need for sensitive communication surrounding the topics of diagnosis and prognosis has been emphasized (26).

Purpose

This qualitative exploration was undertaken to gain deeper insight into the nature of the lung cancer experience from the perspectives of patients/survivors and family caregivers. The evolving approaches to screening and treatment for lung cancer have the potential to influence the experiences for individuals diagnosed with the disease and their caregivers.

Methods

Design

A qualitative descriptive design was utilized for this study. The work was conducted under the auspices of the Ontario Lung Association (OLA) and underwent ethical consideration by their respective committee.

Accrual and Data Collection

Invitations to identify patients/survivors and family members who were willing to be interviewed were sent to members of the OLA Lung Cancer Advisory Committee. Individuals were eligible for participation if they lived in Ontario (area for which the funder has jurisdiction), had been diagnosed with lung cancer within the last 3 years and had the physical capacity to complete the interview, or were the family caregiver for an individual with lung cancer. The Committee members spoke to individuals and forwarded the names of those who gave permission to do so. These individuals were contacted by the research coordinator who explained the project and obtained consent to participate. Individuals underwent a semi-structured confidential interview over the telephone. The interview was conducted by the research coordinator, an individual well versed in qualitative methods.

The semi-structured interview guide was designed for the purposes of this project. Questions were crafted to illicit descriptions about the experience of being diagnosed and treated for lung cancer, the challenges patient and family members confronted, and where changes could be made to improve the experience for future patients and families. Questions were broad and open-ended to allow the individuals to discuss what was of importance to them.

Analysis

The analysis of the interview data consisted of a conventional content analysis (27) undertaken by the research coordinator. The transcripts were read to identify content areas and develop a coding framework. The data were coded according to the framework and each coded category summarized using key messages. Key messages across all coded categories were compared and meaningful similarities in content were identified. These similarities provided the essential themes regarding challenges. The themes were reported to 3 groupings of clinicians, patients, and caregivers for the purposes of checking clarity, relevance, and validation. The final rendering of the themes provide the basis for this manuscript.

Results

Eight patients with lung cancer/survivors and 4 family caregivers completed the interviews. Patients and family members were not connected. The sample reflected males (n = 3) and females (n = 9), and a range of ages (25-84 years), employment status (employed, retired), and geographic locations across the province of Ontario (ie, Toronto, Ottawa, Thunder Bay, Southern Ontario). All patients had undergone treatment in outpatient lung cancer clinics.

The findings from the interviews are reported below with reference to the timeline of the cancer journey or trajectory—from diagnosis to survivorship. A summary of the themes is presented in Table 1 (expanded table of quotations available in supplementary file). The participants described many insights reflected in other survivorship studies but also identified ones that are specific to this population.

Table 1.

Summary of Content Themes Across the Lung Cancer Continuum From Patients and Family Members.

Being diagnosed	Surviving lung cancer
Recognition of symptoms as lung cancer	Dealing with long-term effects of treatment
Timeliness of tests and receiving results	Getting back to normal
Emotional shock of the diagnosis	Living with uncertainty and fear of it coming back
How the diagnosis was communicated
Undergoing treatment	Living with advanced disease
Need for information about disease and treatment options	Dealing with symptoms
Dealing with the demands of treatment (driving every day, symptoms, and side effects)	Obtaining information about and access to services (especially for care and support at home)
Not being able to work/do usual activities	Navigating the system
Finding support services/groups	Balancing life situations/demands
Facing the stigma of having lung cancer

Being Diagnosed With Lung Cancer

The challenges related to being diagnosed with lung cancer included recognizing symptoms as indications of lung cancer, timeliness of testing and receiving test results, the emotional shock of hearing the diagnosis, and being distressed by the way the diagnosis was communicated.

Prior to hearing a definitive diagnosis, participants had undergone investigative testing and experienced issues of timeliness and heightened anxiety. All had experienced a symptom (eg, hip, shoulder, or back pain; pain in diaphragm, “a bit of a cold”; cough) but had not associated that symptom with lung cancer. A number described their symptom as “…not really typical for lung cancer” and experiencing “…a lengthy time to have the diagnosis confirmed” (eg, 6 months to a year). This included both individuals who had smoked and those who had not smoked.

Hearing the definitive diagnosis of lung cancer was an emotional experience for all concerned. Individuals reacted in their own unique ways but commonly described shock, disbelief, and fear about the future for themselves and their family. The unexpectedness of the lung cancer diagnosis heightened the emotional response for those who had never been smokers. Not only was the diagnosis a surprise, there was almost a desperation in the subsequent search to understand how this could have happened.

The way the communication about the diagnosis occurred was a concern for participants. They perceived the words used to share the diagnosis and the tone of the communication itself were very negative and added to the distress they felt. One of the “new” messages that participants thought ought to be communicated clearly at diagnosis is the changing nature of the lung cancer situation. The advent of new treatment approaches has resulted in new hope and the emergence of a “new story” about the realities of lung cancer. In the words of one man, “It is not the death sentence it once was.”

Undergoing Treatment

Participants described challenges during the treatment interval in accessing information to aid decision-making, dealing with side effects, being able to engage in usual activities, finding support services, and facing stigma.

Following the diagnosis, participants found they needed information to help them understand what was happening and make decisions about what to do. Many had little information about the disease, its treatment options, or the eventual prognosis and found they had to search for information on their own. In general, younger individuals with young families expressed worries about the future, careers, and finances, what would happen to their children, and whether they would be alive to continue supporting their families; older individuals, who were retired and established, expressed fewer of these concerns and focused more on quality of living. Those diagnosed with late stage disease which was inoperable, and those who had genetic markers and could be treated with targeted therapies, faced different clinical pathways and decisions. However, all were concerned about access to treatments, information, drugs, and supports.

Once undergoing treatment, the primary challenges were related to symptom and side effect management as well as finding appropriate supports for themselves and their family members. Dealing with multiple symptoms took a toll, with fatigue and shortness of breath the most common and troublesome side effects. In the words of one woman, “It gets so overwhelming you forget to breathe.” The symptoms made engaging in usual daily activities difficult including housework, grocery shopping, driving, and yard maintenance.

Making decisions about working was described by several participants as challenging. New treatments allow oral administration at home and better symptom management than in the past. This can make it possible to continue working. Especially for individuals who are self-employed, or those without insurance coverage, working is clearly of importance financially. For all who continued to work or returned to work, there needed to be adjustments for a period of time (ie, working fewer hours, changing job responsibilities to some degree).

Finding appropriate emotional support and information about available services in their own communities was challenging for both patients and families. The lack of professional counsellors, especially in rural settings, was a significant barrier and the availability of in-person support groups for lung cancer survivors was described as “…woefully lacking.” Online options and networking through social media were described as having potential for support in the future.

Another significant challenge for participants was facing stigma related to having lung cancer. They found stigma was evident during their interactions with health-care providers and with members of the general public. At times, they felt victim to it themselves and embraced a sense of blame for causing their cancer through smoking. In the words of one individual, “I feel a sense of guilt for having smoked all those years; even though I stopped, maybe I caused this.” For individuals who had never smoked, the judgments they felt from others was particularly troublesome for them. When they told others about their lung cancer, they were often asked immediately if they had smoked, implying they had brought the disease on themselves.

Surviving Lung Cancer

There are both physical and practical challenges for individuals living as lung cancer survivors. Getting “back to normal,” dealing with late effects and living with fear of recurrence were emphasized.

Getting back to normal was described as adjusting to how the body feels and functions, shifts in relationships with others, and engaging in usual daily activities once again. The cancer diagnosis stimulated, for some individuals, a change in attitudes about life and what is important. In the words of one individual, “It’s a life altering experience…you see life so differently now.” In turn, this can influence what an individual wants to do and how they want to live their life. For others, a main challenge was reengaging in the activities they enjoyed or needed to do for work as they were learning to live with their new bodies and how their bodies functioned. In the words of one man, “I feel I have to learn how to breathe again.”

The profile of late effects for lung cancer survivors and the resulting impact on quality of life are, in some ways, just beginning to be documented. Side effects such as numbness and tingling in hands and feet can interfere with walking, balance, and overall mobility, preventing housework, yard maintenance, and exercise. Fatigue and cognitive changes (eg, ability to learn, recall information, concentrate) are also of concern and may continue after treatment for varying periods of time. These changes contribute to some of the challenges survivors experience in returning to work or engaging in activities of daily living. Others may not understand how these changes influence the survivors as the changes are not necessarily visible.

In particular, individuals who are taking targeted therapies describe a good quality of living and a picture filled with hope. They were not experiencing significant side effects and were engaged in many activities of importance to them. In the words of one woman, “I feel very healthy and am doing what I want.” Participants described the targeted therapy experience as “a new lease on life” and reported engaging in “treasured” activities (eg, time with family, travel).

However, a significant psychological issue for the survivors is living with the uncertainty of cancer returning or, in the case of those with ongoing disease, spreading to other parts of the body. Several participants described the ebb and flow of feelings concerning recurrent disease: “It is there all the time, you know, the fear of it, but sometimes it is less intense.”

Living With Advanced Disease

Individuals facing advanced disease situations found symptom management and family support were primary concerns. Advancing disease meant deteriorating capacity for individuals and an increasing need for physical and practical support in the home. Family members were often the primary caretakers. They described the workload required to care for their family member as heavy and found balancing that workload with aspects of their own lives was a challenge for them. One woman stated: “It felt like having two full-time jobs.”

Access to palliative care expertise and support was cited as a challenge for individuals remaining at home during the last days of life. When a palliative care service or home care service was engaged, it was helpful to both patients and family caregivers. However, when this service was not available, or family members did not have information about how to access the service or navigate the health-care system, the family members felt that symptom management for patients and support for themselves was “sorely lacking.” This was a particular issue for those living in small towns or rural settings.

Discussion

This exploratory study was undertaken to gain insight into the experiences of lung cancer survivors in light of the changes in approaches to screening and treatment of the disease. The work provided a deeper understanding about the perspectives of the emerging cadre of lung cancer survivors, what is shared with other cancer survivors and what is unique to the lung cancer population.

The participants in this study reflected many of the themes that have emerged in previous studies. Clearly, there are life changes and ongoing needs for this population that are shared with other cancer survivor populations including the emotional responses to being diagnosed with a life-threatening illness, the challenge of dealing with multiple symptoms and treatment side effects, the impact of side effects on daily living, and access to information and resources (18,28 -30).

At the same time, there are also aspects that seem unique to this population: the unusually lengthy route to definitive diagnosis, finding hope in what is communicated from health-care professionals, facing the stigma and judgment from others about smoking regardless of whether one was a smoker, and being more aware of one’s lungs and finding ways to manage one’s breathing. The lengthy interval prior to diagnosis and the identified uncertainty regarding the symptoms lends credence to approaches that would encourage early presentation to family doctors and the implementation of clinical pathway use to confirm diagnosis (24,25). Over and above sensitive communication about the diagnosis and prognosis, discussion of targeted therapies for lung cancer and who is eligible demands careful and clear interactions. Clearly, there is a sense of new hope emerging for patients with lung cancer and how this is communicated is important.

Stigma of lung cancer is a concern that demands attention by clinical teams and through public education. To date, awareness of the stigma related to lung cancer on the part of health-care professionals and the challenges of resolving the resulting discrimination have not received a significant amount of investigation. Stigma is beginning to be identified as a particularly impactful challenge for patients and survivors, evident early in the process of seeking help for symptoms and being diagnosed (21).

Finally, with a growing cadre of lung cancer survivors facing challenges with late effects, it would be important to think about the use of survivorship care plans and patient education programs for self-management. If introduced early in the course of treatment, such programs can assist individuals to be prepared and cope effectively with the impact of the effects. Perhaps examples could be drawn from existing Chronic Obstructive Pulmonary Disease programs to help with the challenges of managing shortness of breath and fatigue. Additionally, online resources and support programs may be of benefit to survivors of lung cancer and their caregivers.

In general, survivors of cancer find the transition from receiving care in a cancer center to being followed by a family physician as a challenging time (31). Issues of access to information, knowing about the subsequent course of action (ie, follow-up plans, surveillance testing), and communication with various health-care providers have been cited as concerns. However, the actual transition process is a somewhat new process phase for patients with lung cancer and their family members and has not received significant attention to date. Suggestions for improving lung cancer care have emerged from stakeholder forums, unmet needs studies, and quality improvement initiatives (32). Finding solutions to improve patient with lung cancer and family experience and meet the full range of needs, especially for those living as survivors, must be a priority for action. Various interventions have been designed and implemented with a view to enhancing cancer patient experience and improving care coordination, including the use of survivorship care plans (31,33), integrated clinical pathways (34,35), and web-based applications for patient education and support (36). However, these interventions have been evaluated with varying degrees of rigor and have yet to be fully considered for lung cancer survivors.

Limitations

This study was conducted as an exploratory initiative. The sample size is small and the catchment area is within one province of Canada. Although the study has provided insights regarding an evolving area of patient experience that warrants in-depth understanding, there would be benefit in extending the investigation to a wider target group.

Implications and Concluding Remarks

This exploration of the experiences of patients and family members regarding lung cancer across the cancer trajectory reveals significant themes with implications for practice change that would need to be adapted to local circumstances:

The process of diagnosis is a challenging time for patients and family members; time to diagnosis needs to be shortened and communication about the diagnosis needs to be clear yet supportive.

Access to relevant information about lung cancer and its treatment options is important for decision-making and coping with the events of the illness experience; efforts are needed to make access to relevant information easy for patients and family members.

Early and ongoing effective symptom management is important across the illness experience, including after primary treatment is completed; individuals ought to know what to do to self-management symptoms once they are at home in their local communities.

Access to palliative care expertise and practical support in the home would assist both patient and family members; individuals need to be informed about the availability of local palliative and hospice services.

Click here for additional data file.

Supplementary_Material for Exploring Experiences of Survivors and Caregivers Regarding Lung Cancer Diagnosis, Treatment, and Survivorship by Margaret I Fitch in Journal of Patient Experience