Interpretation of illness in cancer survivors is associated with health-related variables and adaptive coping styles

Among the numerous ways to cope with disease, two general strategies can be distinguished: problem-solving (i.e., do something active to avoid stressful circumstances) and emotion-focused coping strategies (i.e., try to regulate the emotional consequences of stressful or potentially stressful events). Folkman and Lazarus found that both types were used to face stressful situations [1]. Carver et al. differentiated active and avoidant coping strategies, among them 'Resignation/Acceptance' (i.e., accepting the fact that the stressful event has occurred and is real) and 'Focus on and Venting of Emotions' (i.e., increased awareness of one's emotional distress, and concomitant tendency to ventilate or discharge those feelings) [2]. An active coping means to change the nature of the stressor itself or how one thinks about it. In contrast, avoidant strategies are intended to prevent a direct confrontation with stressful events, and may often result in inappropriate activities such as alcohol abuse or depressive states. These avoidance strategies were identified as psychological risk factors or marker for adverse responses to stressful life events [3].

In cancer patients, Derks et al. found that younger individuals used active coping strategies significantly more often and they perceived more internal control over the cause of their disease; in contrast, older patients used religious coping and religious control more frequently at all assessments; in both groups, avoidance coping was associated with more depressive symptoms and a worse quality of life [4].

However, the emotional responses to illness and modes of coping with illness are influenced by the personal perception (interpretation) of illness [5]. The subjective meaning of illness is influenced by intrapersonal, disease-related and environmental factors. These interpretations of illness may have an influence on preferences in decision-making and choice of coping strategies, which may change within time and course of disease. From a clinical point of view, changing negative illness interpretations and depressive or avoidance coping by means of an intervention and encouraging social support by means of patient support groups may at least improve quality of life.

Based on early descriptive work by the psychiatrist Zbigniew J. Lipowski (1924–1997), eight categories of meaning which would influence the choice of coping strategies were devised as prevalent in our culture, i.e., challenge, value, enemy, punishment, weakness, loss, relief, and strategy [6]. Degner et al. initiated a research model on decision-making [7] which implicated the 'meaning of illness' as developed by Lipowski. In their study enrolling 1,012 Canadian women with breast cancer at various points after diagnosis [7], the majority chose 'challenge' (57%) or 'value' (28%) to describe the meaning of breast cancer, whereas only a few chose 'enemy' (8%) or 'irreparable loss' (4%). At follow-up assessment 3 years later, women who ascribed a negative meaning of illness with choices such as 'enemy', 'loss,' or 'punishment' had significantly higher levels of depression and anxiety and poorer quality of life than women who indicated a more positive meaning [7]. Also in patients from Great Britain, 'challenge' was chosen most often (62%), followed by 'value' (14%) and 'enemy' (13%) [8]. In a population of 187 Swedish breast cancer patients, 'challenge' was chosen most often (33%); the few patients with disseminated cancer chose 'enemy', 'punishment', 'weakness' and 'irreparable loss' more often than patients in the earlier stages of disease [9]. In a cross-sectional study enrolling 313 patients with chronic pain conditions from Germany, both 'challenge' and the negative rating 'adverse interruption' (loss) were rated the highest, while 'punishment' was rated the lowest [10]. Also in 405 patients with renal diseases (predialysis, haemodialysis and transplant) recruited in the North of England, 'challenge' was selected by most patients (63%), with similar results in all three patients groups; those selecting 'challenge' and 'value' appeared to have a more positive outlook than other patients[11]. The authors concluded that the 8-item schema appeared to be comprehensive, but is in need of further refinement [11].

The aim of this analysis was first to investigate the meaning German cancer survivors attribute to their disease (in terms of a positive or negative interpretation), and second to analyze intercorrelations between the respective interpretations, health-related variables and adaptive coping strategies. Our hypothesis was that particularly the positive interpretations are related to better health, higher quality of life and life satisfaction, while the negative interpretations are related to more depressive states and coping strategies.

Our results enrolling cancer survivors (all female, only one male) confirmed the findings of others that 'challenge' and 'value' were rated highest by cancer patients [7‐9]. However, in our study the patients were advised to make a statement to each of the eight categories, and thus, also the negative interpretation 'interruption of life/loss' was rated high (35%) – which was rated only by 4% of the Canadian [7] and by 16% of the Swedish population [9]. A Christian denomination was associated with the 'challenge' perception, while particularly 'punishment' was rated lower in younger patients and individuals without a religious affiliation. In previous studies we have observed a positive association between spirituality/religiosity and a positive interpretation of disease in terms of reflection and change of life [19, 21, 22], which could explain the linkage between religious denomination and this positive disease interpretation.

Although the subjective interpretation of illness is influenced by intrapersonal, disease-related and environmental factors, the results of Wallberg et al. [9] and ours indicate that neither the educational level nor time from diagnosis had an impact on the disease interpretations, while age and religious denomination had an influence. In our study, particularly elderly had higher 'challenge' scores than younger patients, while in the Swedish cancer patients 'challenge' was rated less frequently by elderly. These differences can not really be explained.

It is striking that several categories defined by Lipowski are not necessarily identically with the interpretations of the patients interviewed by Wallberg et al. [9], i.e., 'strategy' was interpreted "close to challenge" or "means changes" and adaptation to new situations [9]; 'relief' was interpreted in terms of clear diagnostic and therapeutic decisions. Thus, the conceptual value of these items remains unclear.

We performed principal component analysis to clarify the factorial structure of the categories. Although the factorial structure of IIQ items shares similarities with the category grouping of Degner et al. [7] and Wallberg et al. [9] (i.e., Challenge; Enemy/Punishment/Weakness/Irreparable Loss; Value/Relief/Strategy), there were some conceptually relevant differences. Exploratory factor analysis indicated 3 main factors. Among them, two are sound from a theoretical point of view (i.e., the 'fatalistic' negative interpretations 'interruption of life/loss' and 'enemy/threat' on the one hand, and the positive interpretations 'challenge' and 'value' on the other hand). However, the main factor comprised two conceptually different topics, i.e., the guilt-associated negative interpretations 'weakness/failure' and 'punishment' on the one hand, and the strategy-associated items 'relieving break' and 'call for help' on the one hand. These strategy-associated interpretations can be both negative and positive, depending on the individual interpretation.

Although the instrument as a differential questionnaire is in need of further refinement, the 8-item schema nevertheless seems to be of value. Also Degner et al. stated the usefulness of a brief measure of meaning that can be incorporated into surveys [7]. Of relevance is the fact that the 'fatalistic' negative interpretations are inversely correlated with mental health-related quality of life and life satisfaction, and positively with an escape-avoidance strategy, depression and anxiety. The guilt-associated negative interpretations correlated best with Escape from illness, moderately with anxiety, but not with depression. Thus, among the negative meanings, one has to state differential intercorrelations with mental health-associated variables. In contrast, the positive disease interpretations correlated only with adaptive coping strategies, particularly with Reappraisal and Trust in God's Help. An association between reappraisal as a coping strategy and reliance on an external (divine) locus of disease/health control was confirmed previously, particularly for patients with cancer [19]. It reflects the aforementioned spiritual connotation of the unique view that illness can be regarded as a 'chance' to reflect and change of life. However, healthy individuals do not share the attitude that illness could be regarded as a 'chance' or 'challenge'; it is unique point of view found more often in cancer patients than in other patients with chronic diseases [19]. One may speculate that it reflects the struggle with the subliminal fear that the disease may return again, even after a putative 'effective' treatment; in the light of this constant stressful insecurity, the patients have to find strategies to adapt. One possibility to behave could be to rely on a more powerful (divine) external help (in terms of religious coping), which was found particularly in elderly and patients with cancer [4, 19, 21, 22], and to focus on active adaptive coping strategies (in terms of internal locus of disease control) – which indeed were highly utilized in patients with chronic diseases [19].

Despite a fatal diagnosis and unclear prognosis, several cancer patients nevertheless regarded their illness as a challenge, others as an interruption of life. Both interpretations are exclusive and do not correlate (r = 0.09). According to Lipowski's original thesis, the experience of illness may enhance intensity and depth of life [6]. Indeed, particularly the positive interpretations were associated with active and adaptive coping strategies to deal with the chronic disease. This is in line with Antonovsky's 'Sense of Coherence' concept [23], i.e., patients find access to resources required to meet the demands and are willing to search them out ('manageability'). This means, health is a changing continuum and patients have to adapt their strategies to changing situations. This implies that the strategies and also the interpretations of disease may change during the course of illness. In our analysis, we did not find significant differences with respect to the duration of disease (albeit this may be different in the acute phase of illness). In the Canadian [6] and also in the Swedish population [9], the stage of disease was a powerful factor. In the German cancer patients, the guilt-associated negative interpretations 'weakness' and 'punishment' were less frequently rated; particularly in patients with a relapse, the relevance of these interpretations showed some minor variances. In contrast, patients with dissemination had in trend slightly lower ratings for the interpretations 'call for help' and 'value'. As a matter of fact, patients who know that they are in a progressive state of disease will interpret their illness more negatively than positively.

Although one may argue that it is a limitation of the study that we have focused on cancer survivors rather than patients during early phases of the disease, we believe that this study nevertheless may fill a gap of knowledge how these 'late phase' patients do behave and interpret their illness.

Despite factorial limitations, the 8-item schema of the IIQ may provide a useful screening approach to identify patients at risk for reduced psychosocial functioning. Both the inverse correlations between the negative interpretations and health-related variables, and the associations between positive meanings and adaptive coping strategies may underline the need for further research and appropriate supportive care interventions. Changing negative illness interpretations and depressive or avoidance coping by means of an intervention and encouraging social support by means of patient support groups may at least improve quality of life. Further studies should focus on the clinical relevance of psycho-oncological interventions with respect to disease interpretation, decision making and quality of life.