This is the first paper to integrate smoking behavior characteristics of lung cancer patients within the context of Self-Regulation theory, and the first to describe changes in illness representations over time, among lung cancer patients who smoke. The SRMI provided a framework to help guide our understanding of the complexity of illness representation formation as it applies to lung cancer patients who smoke. The components of illness representation, identity, acute/chronic timeline, and personal and treatment control, were found to significantly change over time. Nicotine dependence was the most frequently cited reason for smoking at study entry and at 6 months.
Changes in illness representations over time have been characterized in head and neck cancer and coronary artery bypass graft surgery patients. In these patients, illness representation findings have been useful in predicting patient quality of life, psychological distress, and return to work following a medical procedure 45–47
. Changes in symptom representations as a result of psychoeducational interventions have been identified among ovarian cancer patients 25
. Illness representation information from lung cancer patients that smoke could be useful in developing specific smoking cessation interventions. Understanding the context in which a patient perceives disease and smoking behavior can translate to developing specific smoking cessation interventions that contribute to successful quitting. For instance, smokers report worse quality of life than non-smokers 48, 49
. If a lung cancer patient quits smoking at any point after the diagnosis, this may improve quality of life.
In this study, a significant increase in the identity attribute over time was consistent with a patient experiencing increased disease and treatment-related symptomatology. Lung cancer patients identified their symptoms to be related to their disease. The majority of patients in this study continued to smoke, which may also have contributed to increased symptoms. Interestingly, non-smokers at 6 months reported less symptoms of their lung cancer than smokers (although not able to be statistically compared).
A strong belief in the personal and treatment controllability of lung cancer was exhibited by patients at baseline. This is appropriate for patients who were actively undergoing lung cancer treatment or just had lung cancer surgery. Both attributes significantly decreased over time and could have been attributed to patient realization of the serious nature and poor prognosis of the disease. Unsuccessful attempts to quit smoking may also have decreased patient’s beliefs in the personal and treatment controllability of the disease. Furthermore, smokers reported lower personal and treatment controllability at 6 months than non-smokers (not able to statistically compare).
The significantly increased belief among patients over time that lung cancer was a chronic disease (timeline acute/chronic) suggested that at diagnosis, patients may not have understood the nature of living with a chronic disease, and over 6 months, patients had an increased understanding of the chronicity of their disease. Chronic disease refers to “living with a disease for lifetime” versus having a relative quick disease cure. Although not statistically compared, smokers reported a chronic disease belief that was stronger than non-smokers. Continued smoking behavior may have accentuated patients’ beliefs in the chronicity of their lung cancer. The increased trend (although not significant) of the cyclical nature of lung cancer was consistent with patients who had recently completed or were receiving chemotherapy. In general, chemotherapy treatment for lung cancer is given for 1–3 days during a 21 day cycle, and the symptoms experienced by the patient also follow the same cyclical pattern 50
The patient’s consistent, strong belief that lung cancer produced negative consequences was expected, given the known toxicity of lung cancer treatment and overall poor prognosis of the disease. Illness coherence scores (understanding of illness) were relatively stable over time, perhaps suggesting that patients could benefit from further education. The decreased trend (although not significant) of the emotional representation attribute reflected a decreased emotional response to lung cancer among patients, perhaps suggesting that at 6 months, the ‘shock’ of the cancer diagnosis had ‘worn off’ and patients were more accepting of their diagnosis and/or treatment.
Reliability estimates for acute/chronic timeline, personal control, illness coherence, and emotional representation attributes all demonstrated good reliability and comparable to other reports of internal consistency scores 34
. The cyclical timeline, treatment control and consequences internal consistency scores were lower than those previously reported 34
A sizable portion of this sample was deceased at the 6 month time point which reduced the investigators’ ability to examine illness perception among study participants. The 6 month study endpoint was chosen because it is a reasonable amount of time to have completed initial lung cancer treatment and not too long to exclude patients with advanced stage. In addition, due to fewer participants completing the study, comparison of illness perception among early and late stage lung cancer patients was unable to be completed. Illness perception may have been influenced by type of cancer treatment the patient received (i.e., chemotherapy plus radiation may cause more symptoms than a single modality of treatment). A patient’s perception of symptoms may have been influenced by treatment or disease related symptoms rather than explicating the role of tobacco use behavior.
The study included current smokers and their natural course of behavior following a lung cancer diagnosis. Never and former smokers and recent quitters may have very different smoking behavior and illness representation characteristics.
Implications for future research
Interventions to aid the lung cancer patient in coping with lung cancer treatment-related symptoms in addition to the emotional distress that living with a lung cancer diagnosis causes, all while quitting smoking, is essential. Illness representation and ‘representation of self’ may be the most interesting attributes of the SRMI to examine in future research with smoking behavior among lung cancer patients. Understanding the context in which a patient perceives disease and smoking behavior may contribute to influencing behavior change. These characteristics deserve consideration as interventions are designed. The emotional stress and treatment-related side effects that accompany therapy must be addressed as lung cancer patients attempt to stop smoking.
Further research investigating the influence of illness representations on the lung cancer patient’s decision to quit or continue to smoke is needed. In addition, interventions that are tailored to a patient’s illness representation should be developed and tested. Early stage lung cancer patients who continue to smoke after a diagnosis represent a group who may benefit substantially from these types of studies. Well controlled multisite trials that increase patient accrual should be considered.