Denial and physical outcomes in lung cancer patients, a longitudinal study
Introduction
Lung cancer is the most prevalent type of cancer worldwide and the leading cause of cancer-related death in western countries [1]. After diagnosis, lung cancer patients are confronted with symptoms, treatment choices, emotions and existential questions. They may, understandably, protect themselves against the overwhelming facts and feelings associated with this sudden change in life perspective by denying (parts of) the illness and its consequences. Current ethical and psychosocial publications emphasize the need to fully inform patients. Yet, some level of denial was found to be normal in lung cancer patients [2].
Whether denial or denial like strategies like avoidance or repression should be considered adaptive or maladaptive has often been discussed but remains uncertain [3], [4], [5]. How should an oncologist then handle denial in clinical practice? The relation of denial in cancer patients to psychological functioning was found to depend on the conceptual approach chosen [4]. The relation of denial to physical functioning in cancer patients has hardly been investigated.
Repressing chemotherapy-patients were found to report fewer physical symptoms than those who did not [6]. Among breast cancer patients undergoing adjuvant chemotherapy denial of disease impact was not related to physical outcome but behavioural-escaping patients reported more physical symptoms [7].
Whether denial is adaptive may depend on the disease phase involved. Indeed, a time related pattern has been described: denial was suggested to be adaptive in the short term and maladaptive in the long run [3], [8], [9].
Studies covering denial over time are, however, limited. A literature search retrieved 19 cross-sectional and six longitudinal studies [4]. The results from cross-sectional studies were inconclusive because of the variety of designs, samples and assessments. Longitudinal studies, in breast cancer [10], [11], [12], colorectal cancer [13], and mixed cancer patient populations [14], [15], seem to indicate that denial diminishes over time, but increases when death draws closer. In our study among lung cancer patients, however, the mean level of denial increased from shortly after diagnosis to 4 months later and remained stable thereafter [2]. These studies are generally based on average patient populations. Whether different denial patterns can be distinguished and how these patterns relate to physical function has not yet been investigated.
Studies regarding denial in lung cancer are lacking, even though lung cancer patients may have increased reasons to deny. First, they may feel responsible for the development of their disease through smoking and, consequently, feel shameful and encounter stigma. Secondly, they often suffer from dyspnea, which seriously limits functioning and may be frightening [16], [17]. Finally, given their poor prognosis, lung cancer patients have limited time to adapt to their disease.
The main objective of the present study is to investigate the relation between denial and physical outcomes in lung cancer patients. Research questions are (1) whether patterns of denial can be distinguished among these patients, (2) how these relate to socio-demographic and disease-related factors, and (3) to physical outcomes.
Section snippets
Participants
Consecutive lung cancer patients were recruited from two pulmonary diseases outpatient clinics1 in The Hague, the Netherlands. Inclusion criteria were (a) being newly diagnosed with primary lung cancer irrespective of histological type, stage or treatment, (b) age ≥18 years, (c) time since diagnosis <2 months, (d) knowledge of the Dutch language, and (e) written informed consent. Exclusion criteria were (a) serious cognitive disorder and (b) being
Patient characteristics
Of 383 newly diagnosed lung cancer patients 139 were ineligible because of death (n = 30), being too ill (n = 32), ≥8 weeks since diagnosis (n = 28), having a language problem (n = 15), moving elsewhere (n = 8) or other reasons (n = 16). Eligible and non-eligible patients did not differ in gender and age.
Of 244 eligible patients, 49 (20%) refused participation. Reasons for refusal were: “wants to calm down” (n = 8), “does not want treatment nor study participation” (n = 6), “does not want to talk about the
Patterns of denial
In this first large longitudinal study among lung cancer patients, we could identify different patterns of denial over time. Low deniers make up the largest patient group. A smaller group denies at a moderate level from the start. Both groups maintain their original level of denial with time. They display a basic level of denial, seemingly as part of their personal style of dealing with the illness and its impact. A third, small group shows a low level of denial shortly after diagnosis which
Conflicts of interest
None declared.
Acknowledgements
This research project is supported by the Dutch Cancer Society (KWF Project # AMC 2000-2328) and the Bronovo Research Fund.
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