- Email: [email protected]
Denial indeed is a process
138
Letters to the Editor / Lung Cancer 72 (2011) 136–138
Roland Eils a,b Department of Theoretical Bioinformatics, German Cancer Research Center (DKFZ), Heidelberg, Germany b Department of Bioinformatics and Functional Genomics, Institute for Pharmacy and Molecular Biotechnology, University of Heidelberg, Heidelberg, Germany a
Michael Fleischhacker Department of Oncology, Charité, Berlin, Germany Brigitte Schlegelberger Institute of Cell and Molecular Pathology, Hannover Medical School (MHH), Hannover, Germany Nils von Neuhoff ∗ Institute of Cell and Molecular Pathology, Hannover Medical School (MHH), Hannover, Germany ∗ Corresponding
author. Tel.: +49 511 532 4533; fax: +49 511 532 4521. E-mail address: [email protected] (N. von Neuhoff) 11 December 2010 20 January 2011 doi:10.1016/j.lungcan.2011.01.015
Denial indeed is a process In his second letter to the editor responding to our papers covering denial and quality of life in lung cancer patients, Salander is concerned about the validity of our results. He suggests that the instrument used, the Denial of Cancer Interview (DCI), not only measures denial but also well-being. As a result, the correlation found between denial and physical and mental well being in our sample would be of a circular nature. We do not support this assumption for two reasons. Firstly, the relevant variables were assessed in our study by different methods, denial with a semistructured interview and distress and quality of life by self-report questionnaires. Such diverging methods are in general less correlated than observations gathered with methods using the same approach [1]. Secondly, the DCI and the questionnaires were developed on a different conceptual base. For example, well-being is not reflected directly in such item as “I think about my illness continuously”. At the same time, quality of life questionnaires are thoroughly developed and extensively validated to explicitly address the aspects of life that refer to the patients’ well being. They provide a clear operationalisation of the domains experienced such as anxiety and depression as well as physical and social function by posing direct questions in these areas. This is not the case in the DCI. The association between denial and well-being found in our study can therefore be taken seriously. Salander is also concerned about the fact that we describe more stable typologies in our study. As he states, “. . .dealing with a threat to life is a process, the “awareness” of the grave facts of the situation fluctuate according to the willingness to admit what he is in fact quite aware of.” Interestingly, this is exactly what we have addressed in our longitudinal study design. Our design is based on this same point of view: denial is a process, or, as Lazarus [2]
states: “We are dealing with flux”. This is the reason why we conducted a study with four assessments in eight months: to look if such processes could be discerned for different patients and patterns could be distinguished among them. We found, for example, a pattern of denial showing a higher level of denial shortly after diagnosis and lower levels afterwards. The classification of the different types of denial at the four assessment points is not a stable typology, but based on a division of the continuous DCI scale in four segments: no denial, a low, moderate and high denial level [3]. We were not the first researchers using such quantitative rating of denial. Similarly, Hackett and Cassem [4] developed a rating scale with minimal, partial or major levels of denial among patients with cardiovascular diseases. In fact, it is because denial is a process with varying levels over time, that we looked for patterns of denial in the course of the illness. We found three different patterns: a stable low, a stable moderate and an increasing pattern of denial over time. These patterns reflect estimations of the levels of denial over time based on the application of a latent cluster model [5]. Indeed, as Salander states, people fluctuate as to their way of expressing themselves about their situation in order not to put an undue burden on their own shoulders – it is a matter of process as a part of the patient’s own “hope work”. Applying a “hope work” perspective and trying to understand how to facilitate patients’ creation of hope, is exactly the challenge we have tried to undertake. We recognize the case reports described by Salander as we encountered comparable patients in our study. The conclusion of our study that denial is part of the illness-process, confirms Salander’s clinical view with evidence based data. Within this process denial and hope can fluctuate in dynamic interdependence [6]. Conflict of interest statement None declared. References [1] Moyer A, Levine EG. Clarification of the conceptualization and measurement of denial in psychosocial oncology research. Ann Behav Med 1998;20:149–60. [2] Lazarus RS. In: Ahmed P, editor. Denial, its costs and benefits, living and dying with cancer. New York: Elsevier; 1981. [3] Vos MS, Putter H, Leurs A, Rooijmans HGM, de Haes HCJM, van Houwelingen HC. The denial of cancer interview: development and first assessment of psychometric properties in lung cancer patients. Pat Educ Counsel 2007;67:224–34. [4] Hackett TP, Cassem NH. Development of a quantitative rating scale to assess denial. J Psychosom Res 1974;18:93–100. [5] Putter H, Vos MS, de Haes JCJM, van Houwelingen JC. Joint analysis of multiple longitudinal outcomes: application of a latent cluster model. Stat Med 2008;27:6228–49. [6] Folkman S. Stress, coping, and hope. Psycho-oncology 2010;19:901–8.
Martina S. Vos ∗ Hanneke J.C.M. de Haes Bronovo Hospital, Department of Psychiatry, Bronovolaan 5, 2597AX The Hague, Netherlands ∗ Corresponding
author. Tel.: +31 703124520; fax: +31 703124929. E-mail address: [email protected] (M.S. Vos) 17 January 2011
doi:10.1016/j.lungcan.2011.01.026
Letters to the Editor / Lung Cancer 72 (2011) 136–138
Roland Eils a,b Department of Theoretical Bioinformatics, German Cancer Research Center (DKFZ), Heidelberg, Germany b Department of Bioinformatics and Functional Genomics, Institute for Pharmacy and Molecular Biotechnology, University of Heidelberg, Heidelberg, Germany a
Michael Fleischhacker Department of Oncology, Charité, Berlin, Germany Brigitte Schlegelberger Institute of Cell and Molecular Pathology, Hannover Medical School (MHH), Hannover, Germany Nils von Neuhoff ∗ Institute of Cell and Molecular Pathology, Hannover Medical School (MHH), Hannover, Germany ∗ Corresponding
author. Tel.: +49 511 532 4533; fax: +49 511 532 4521. E-mail address: [email protected] (N. von Neuhoff) 11 December 2010 20 January 2011 doi:10.1016/j.lungcan.2011.01.015
Denial indeed is a process In his second letter to the editor responding to our papers covering denial and quality of life in lung cancer patients, Salander is concerned about the validity of our results. He suggests that the instrument used, the Denial of Cancer Interview (DCI), not only measures denial but also well-being. As a result, the correlation found between denial and physical and mental well being in our sample would be of a circular nature. We do not support this assumption for two reasons. Firstly, the relevant variables were assessed in our study by different methods, denial with a semistructured interview and distress and quality of life by self-report questionnaires. Such diverging methods are in general less correlated than observations gathered with methods using the same approach [1]. Secondly, the DCI and the questionnaires were developed on a different conceptual base. For example, well-being is not reflected directly in such item as “I think about my illness continuously”. At the same time, quality of life questionnaires are thoroughly developed and extensively validated to explicitly address the aspects of life that refer to the patients’ well being. They provide a clear operationalisation of the domains experienced such as anxiety and depression as well as physical and social function by posing direct questions in these areas. This is not the case in the DCI. The association between denial and well-being found in our study can therefore be taken seriously. Salander is also concerned about the fact that we describe more stable typologies in our study. As he states, “. . .dealing with a threat to life is a process, the “awareness” of the grave facts of the situation fluctuate according to the willingness to admit what he is in fact quite aware of.” Interestingly, this is exactly what we have addressed in our longitudinal study design. Our design is based on this same point of view: denial is a process, or, as Lazarus [2]
states: “We are dealing with flux”. This is the reason why we conducted a study with four assessments in eight months: to look if such processes could be discerned for different patients and patterns could be distinguished among them. We found, for example, a pattern of denial showing a higher level of denial shortly after diagnosis and lower levels afterwards. The classification of the different types of denial at the four assessment points is not a stable typology, but based on a division of the continuous DCI scale in four segments: no denial, a low, moderate and high denial level [3]. We were not the first researchers using such quantitative rating of denial. Similarly, Hackett and Cassem [4] developed a rating scale with minimal, partial or major levels of denial among patients with cardiovascular diseases. In fact, it is because denial is a process with varying levels over time, that we looked for patterns of denial in the course of the illness. We found three different patterns: a stable low, a stable moderate and an increasing pattern of denial over time. These patterns reflect estimations of the levels of denial over time based on the application of a latent cluster model [5]. Indeed, as Salander states, people fluctuate as to their way of expressing themselves about their situation in order not to put an undue burden on their own shoulders – it is a matter of process as a part of the patient’s own “hope work”. Applying a “hope work” perspective and trying to understand how to facilitate patients’ creation of hope, is exactly the challenge we have tried to undertake. We recognize the case reports described by Salander as we encountered comparable patients in our study. The conclusion of our study that denial is part of the illness-process, confirms Salander’s clinical view with evidence based data. Within this process denial and hope can fluctuate in dynamic interdependence [6]. Conflict of interest statement None declared. References [1] Moyer A, Levine EG. Clarification of the conceptualization and measurement of denial in psychosocial oncology research. Ann Behav Med 1998;20:149–60. [2] Lazarus RS. In: Ahmed P, editor. Denial, its costs and benefits, living and dying with cancer. New York: Elsevier; 1981. [3] Vos MS, Putter H, Leurs A, Rooijmans HGM, de Haes HCJM, van Houwelingen HC. The denial of cancer interview: development and first assessment of psychometric properties in lung cancer patients. Pat Educ Counsel 2007;67:224–34. [4] Hackett TP, Cassem NH. Development of a quantitative rating scale to assess denial. J Psychosom Res 1974;18:93–100. [5] Putter H, Vos MS, de Haes JCJM, van Houwelingen JC. Joint analysis of multiple longitudinal outcomes: application of a latent cluster model. Stat Med 2008;27:6228–49. [6] Folkman S. Stress, coping, and hope. Psycho-oncology 2010;19:901–8.
Martina S. Vos ∗ Hanneke J.C.M. de Haes Bronovo Hospital, Department of Psychiatry, Bronovolaan 5, 2597AX The Hague, Netherlands ∗ Corresponding
author. Tel.: +31 703124520; fax: +31 703124929. E-mail address: [email protected] (M.S. Vos) 17 January 2011
doi:10.1016/j.lungcan.2011.01.026