Abstract
Every acute myeloid leukemia (AML) patient asks: why me? But from the patients’ perspective, there are no objective medical causes and no clear picture of AML. However, based on these missing medical answers, patients develop their own ideas about illness and treatment. These subjective theories of illness (STOI) are defined as the cognitive constructions ill people make regarding: (1) the nature of their disease; (2) its source; and (3) its treatment. STOI present a challenge for the physician–patient relationship. After the first interim staging, 12 patients with AML were interviewed. Case analyses were assigned to interindividual comparisons representing the predefined subject areas of STOI. Patients’ vague subjective conceptions about the personalized etiology of AML resulted not only from health literacy deficits but also from their avoiding medical information to protect themselves from negative emotions. Through STOI, patients significantly co‐determine the selection of (un‐)conscious coping strategies with consequences for physician–patient communication.
Introduction
The recognition of coping mechanisms in patients with cancer is relevant for the treating oncologist.Citation1 Furthermore, the systemic nature of hematological malignancies along with their invisibility in many cases and missing objective causes of illness presents a specific feature as opposed to solid tumors. From the patients’ perspective, there is at once a space for individual theories, speculations, and magical thinking without comprehensible data about illness situation. It must be taken into account that the patients’ preferences for treatment, the patients’ compliance, and their illness coping will be affected by their subjective concept of illness.Citation2–Citation6 Such personalizing cancer care means that every effort was made to understand the biologic, clinical, social, and economic diversity of cancer patients.Citation7 Subjective theories of illness (STOI) are defined as the cognitive constructions ill people make regarding: (1) the nature of their disease; (2) its source; and (3) its treatment.Citation8–Citation10 STOI do not automatically correspond to the objective, medical facts and do not primarily reflect the style of thinking that would be typical in a clinical oncological frame, but rather in a subjective regulative frame of human beings. They are intuitive and emotional rather than rational. For the development of STOI, the patients’ view on the locus of control plays a central role. Health locus of control describes for example a person’s individual allocation of the cause of a disease or coping with disease.
Adults with acute myeloid leukemia (AML) suffer from a malignant disease of the hematopoietic system which is curable only in a portion of cases. Moreover, the treatment course is aggravated by complications like infections or bleeding. If the intent of treatment is curative, patients undergo several cycles of intense, immunosuppressive chemotherapy with repetitive hospitalizations of several week’s duration each.Citation11,Citation12 Therefore, these patients are confronted with multiple physical, psychological, and social challenges.
Friis et al.Citation13,Citation14 demonstrate that patients with acute leukemia (AL) ascribed more importance to information about trivial (non‐medical) problems such as those affecting their daily life. The patients focused on individualized information (‘individual things that you can’t read about in any book’) like the consequences of their illness and how to deal with practical and psychosocial efforts. Koenigsmann et al.Citation15 examined the STOI of patients with AL in the initial stage of their disease immediately after diagnosis. The patient’s identity as a whole is altered by the global loss of their former references and orientation points. The experience of diagnostics and therapy is massively burdened with the fear of a potentially mortal disease which is verbalized at the occasion of visible and tangible violations of the integrity of the body. At this early point in time the patients find themselves in a state of being intrusively run‐over, which has not yet allowed to reflect the situation and to adapt emotionally or intellectually. It means a mental traumatization in the sense of an intrusion.Citation16 Schumacher et al.Citation17 confirmed the uncertainty about patient’s life perspective and the potential well‐being paradox of quality of life of AL patients (it means that objectively negative factors in one’s life have relatively little effect on subjective quality of life). Greenberg et al.Citation18 analyzed STOI as predictors of psychosocial adjustment for survivors of adult AL patients: the results indicate the strong relation between anticipatory vomiting and a greater tendency toward cancer‐related intrusive thoughts and avoidance of reminders (cave id: development of an inadequate patients’ evaluation of symptoms for the management of treatment‐determined adverse events, e.g., severe diarrhea or fever). Xuereb and DunlopCitation19 explored the interaction of survivors with the challenging experience and the meaning of hematological cancer (patients with AML, chronic myeloid leukemia, non‐Hodgkin’s lymphoma). They can show that the patients’ individual estimation of the meaning of illness (with reference to the illness character and possible causations) can be influenced by the current life at the diagnosis time. However, coping strategies can be influenced by lifelong patterns of general problem coping, e.g., action at diagnosis. Frick et al.Citation20 showed by autologous transplanted patients (multiple myeloma, non‐Hodgkin’s lymphoma, breast cancer, and testicular cancer) that causal and control attributions can improve or impair the patients’ mental adjustment; a mixture between internal and external attributions seems to be most adaptive.
Patients may relate disease‐relevant information to their own illness perspective which focuses on general aspects of their self‐concept. This is different from the definition used by oncologists, who traditionally focus on general biomedical aspects. Furthermore, there is an essential coherence between STOI and coping with illness in adult patients with hematological malignancies. Through subjective conceptualizing of the illness, the patient significantly codetermines the selection of a coping strategy. Measuring STOI and coping with illness requires very different conceptual frameworks and methods. Qualitative methods (interview‐based) are particularly suited to gain more information on intrapsychic processes as quantitative methods (questionnaire‐based), cause they are explorative and applicable for generating hypotheses. It is deemed to be proved that the degree of concordance of these two approaches on the same research subject is very low.Citation21 In addition, the choice of measuring point is of particular importance: patients’ subjective evaluation of illness situation is always to analyze in relation to objective medical treatment situation. Different forms of psychosocial adjustment develop depending on treatment situation. About 6 weeks after initial diagnosis of AML, patients in our study were beginning the second chemotherapy course. At this time they have experienced their first intensive cytotoxic treatment and possibly infectious or other complications and side effects necessitating supportive measures like blood transfusions. They have also spent 1 or 2 weeks at home before returning to the next therapy course. We guess, that to this time point the psychosocial adjustment in cognitive representations of patients is characterized through: (1) communication with medical, psychological and nursing stuff; (2) interaction with friends and family members as well as with other patients; and (3) the first interim staging per bone marrow biopsy with the first objective evaluation of treatment (complete/partial/no remission).
STOI are an amazing underrepresented topic in clinical hematology. Furthermore, there is a missing link between existing studies with hematological parameters of AML or quality of life subject to treatment courseCitation22–Citation24 and on the other hand wanting studies with subjective illness concepts or coping strategies from patients’ perspective subject to treatment course. The aim of our study is to built this missing link: the investigation of patients’ subjective experiences after first interim staging and the relationship between STOI and coping strategies in this phase of treatment.
Patients and methods
Patients
In this study a homogeneous sample with 12 patients (6 men and 6 women, mean age 58·5 years, range 21–76 years, 9/12 patients, 75% of the sample, are >50 years,) were included with AML who had previously received intensive induction chemotherapy and who were subsequently admitted to the hospital for the second cycle of chemotherapy after the first interim staging by bone marrow biopsy. Patients received an anthracycline combined either with standard‐dose cytarabine over 7 days (‘3+7 protocol’) or with intermediate doses of cytarabine.Citation12 Patient characteristics are listed in . After approval of the study by the ethics committee at our medical faculty and according to the Declaration of Helsinki, written informed consent was obtained from each patient. Only patients with sufficient knowledge of the German language were included.
Table 1. Characteristic of sample
Qualitative content analysis
We conducted semistructured interviews which were analyzed by methods of qualitative research. The core difference in comparison with quantitative research is the search for variability with the aim to display different phenomena as much as possible. In contrast to fully structured interviews this more narrative approach allows the patients to openly describe and explain their thoughts and emotions. Our behavioral interview guide, which was completely applied in all interviews, was developed per a group discussion method and then evaluated and improved per probational interviews. The middle level of structuring of behavioral interview guide facilitated simultaneously to raise a relevant topic and to give a fair amount of latitude the interviewees. Through the behavioral interview guide the participants were directed to answer each semistructuring question ‘off the top’; e.g., ‘Do you have expectations about causes of illness?’. But the interview guide was not used like a definitely standardized course schema. It was our aim to allow unexpected theme dimensions. The predetermined questions could complemented with clarifying requests; e.g., ‘Why you?’.
Relevant aspects about quality criteria were comprehensively publicized.Citation25 The length of the interviews varied according to the readiness to communicate between 25 and 72 min, corresponding to 4148 and 12679 words. The following three dimensions of interview were covered: (1) perception, comprehension and controllability of the illness situation (diagnostic, cognitive constructions patients make regarding nature/source of their disease and its treatment); (2) social and biographical determinants; and (3) patients’ own interpretation contexts (what was important so far in life, plans and goals, hopes and fears). Complete verbatim transcription was carried out according to Mergenthaler and Stinson.Citation26 Text analysis of the transcripts was performed according to the rules of qualitative content analysis and Grounded Theory.Citation27,Citation28 To allow interindividual comprehensibility, guidelines were established with regulations for coding, definition of the categories and a selection of supporting anchor examples. Using these guidelines, specific text segments were inductive assigned to categories (e.g., category ‘illness situation’ with subcategory ‘theories of illness’) and were then condensed and increasingly abstracted (paraphrasing, bundling, etc.) according to the rules of qualitative content analysis. For the purpose of this article, we concentrated exclusively on the subcategory ‘theories of illness’ in which there were inductive generated categories of patients to the formal topics nature of the disease, cause of the disease (causal attribution), controllability (of treatment) and prognosis. Inductive generated categories pictured an abstract patient perspective and were highlighted with introductory imagery. The reduced data made up the basis for interindividual comparisons. All individual evaluations were critically discussed and adopted by the team in order to meet the requirements of investigator triangulation regarding the expansion of subjective interpretations. The team was comprised by the authors of manuscript and further physicians and psychologists with experience in qualitative research.
In order to secure the quality of our data presentation and interpretation, and to allow comprehensibility to the reader, the original (total anonymized) transcripts of the interviews can be ordered via email from the corresponding author.
Results
Nature of the disease
Perception as a sinister and insidious disease: ‘like a thief at night’ [‘Wie ein Dieb in der Nacht’]
After the first interim staging per bone marrow biopsy (about 6 weeks after diagnosis), very few patients had a proper notion regarding the nature of the disease and only two patients proved to be well‐informed. The prevailing lack of medical knowledge is considerable; four patients reported to deliberately avoid dealing with specific information in order to protect themselves from negative affects and thoughts:
I only know that there are too many white globules. I do not want to know about the whole story. The more you know the more you brood. (022‐M)
The circumscription of the illness and the negation of a more profound informational need showed the patients’ intention to maintain emotional and intellectual distance to their disease. On the other side, AL was explicitly described as a threatening disease with a sinister and insidious character (due to its invisibility):
It comes like a thief at night, this one. There is nothing you can do about it. (016‐M)
The interviewees expressed that the character of leukemia may prevent an adequate awareness of the disease. AL, coming out of the blue, would required immediate action and led to a long‐lasting treatment; the entire human organism was affected, for this reason the disease was difficult to be healed:
If someone breaks his leg, that means, well, they nail it back together and than it is not so bad, right? But this blood disease sits in all, in all parts of the body, anywhere, bone marrow and from the toe up into the finger nail, and to explore all this, this is the matter. (022‐M)
Causal attribution of the disease
Uncertainty of the origin and uncontrollability: ‘It can happen to everyone.’ [‘Es kann Jeden treffen.’]
Two patients considered a precise cause of their disease, and they were convinced of this theory despite the fact that this was not confirmed by their treating physicians. One patient traced the disease back to the fact that he was exposed to a warfare agent during his work as a policeman, another patient ascribed the origin of the illness to a previous treatment of her thyroid gland with radioactive iodine. For the majority of the patients, however, the pathogenesis remained in the dark. General risk factors like irradiation or heredity were known to the respondents but these could not be identified with regard to their own history of life. In the context with the uncertainty of the origin of the disease, however, there was hardly any brooding. Purpose‐of‐life‐questions like ‘why me?’ were asked by three patients. The prevailing opinion was that the origin of the disease was absolutely uncontrollable. This uncontrollability is a part of patients’ view on health locus of control regarding cause of the disease. The majority of the responders believed that anyone can be hit by the disease and that it was impossible to influence the risk by means of protection:
Today, anybody could be hit, I guess, and there is no why me or so. Today it can be you, like a car accident, tomorrow it could be my brother and after tomorrow my father and than, my girl‐friend or so, this cannot be controlled. I think, this is according to the situation, in my case it came out of nothing, where nobody knew anything about it. (024‐M)
It appeared that the uncertainty about the origin of the disease rather facilitated the acceptance of the individual fate. It seemed like a submissive and fateful assumption.
Controllability
Avoidance of knowledge in order to protect from the experience of threat and to maintain control: ‘What you don’t know won’t hurt you.’ [‘Was ich nicht weiβ, macht mich nicht heiβ.’]
Regarding controllability of the disease, the physicians’ efforts as well as the effects of chemotherapy were considered to be of utmost importance:
Through the second chemo, if everything goes well, I believe to make it. Not myself, the doctors, the doctors, the medical team, they will make it. I need to withstand, of course. I can only, I can only bear up, stretch out my arm for the infusion. Yea, there is nothing else. (016‐M)
With respect to the effects of the medical treatment, only two patients were well‐informed, the others indicated to have no or only vague ideas. Apparently, the reason for this was not only the difficulty with medical terms but rather the intention to avoid the topic of controllability and the emotions associated with this topic:
I usually prefer to be surprised. Whatever comes along, you need to go through and then it will be good. I mean, if I can contribute to it in any way to improve it then I will most likely take this into account, but as long as I don’t know about it – what you don’t know won’t hurt you. (015‐M)
Only few patients indicated that information about therapy had decreased their fear, while the majority rather described increased fear corresponding to the amount of information. Three patients even indicated that they circumvented talks about the disease or that they allowed these only to a limited extent. Accordingly, only few patients asked about their blood counts:
The more you know the more you ponder and this does not help for anything to my opinion. So I only want to know whether I will be healthy again, whether and how often I need to come back for further treatment. that is all, the rest, I am not interested in. (022‐M)
Regarding the relationship to the treating physicians, patients described a basis of trust; however, only three patients described their confidence towards the physicians as being unquestionable. Nevertheless, all patients mentioned that they were following the physician’s advice in order to contribute to the success of therapy:
It is them who treat us, and it is them who know what is good. I cannot say it is not this, or I don’t want this, I am not going to do this. (010‐M)
Decisions about treatment should only be met by the physician. This controllability is a part of patients’ view on health locus of control regarding coping with the disease.
Living with the disease as coping mechanism: ‘Grit your teeth and get on with it.’ [‘Augen zu und durch.’]
The patients described their individual approach to the disease in a normalizing way. The individual’s own will to be healed was consistently mentioned or alluded to as the primary principle. Hence, the patients did not want to give up, they decided to face the upcoming events and withstand even painful therapeutic interventions:
Clench your teeth, and then it will go. If it helps. Then, I use to say, then you can bear much. (021‐M)
With one exception (007‐M), all patients appeared to have accepted their disease and adapted an enduring attitude towards the limitations associated with it. Since ‘pondering’ with regards to the disease was described by the patients as being an emotional burden, the majority of the interviewees tried to draw off their attention and not to think of the disease and its possible risks. Individual possibilities to actively influence the success of the treatment were being affirmed and the application of certain behavioral changes in daily life were being described with phrases like ‘you can determine your own fate’ (027–M). In this context, change of diet, physical activity and self‐driven care (‘taking care of yourself’, ‘do not exaggerate’, ‘behave reasonably’) were being mentioned. Seven patients reported going for walks which was motivating not only due to its physical component but also due to the change of the environment representing an element of freedom.
Besides these, two further coping strategies were described which were being used only by a part of patients. Four patients reported that prayers and faith to God represented an additional element of help. Two other patients described a fighting spirit as their strategy of choice:
Whatever comes up, you will make it, you fight and well, you don’t feel like stepping into the black box. No matter how shitty you look, if you look like on Honecker’s last parade, you fight. (Interviewer: ‘what means fighting?’) What means fighting, fighting means you don’t give up yourself, you don’t fall into depression. learning, learning what your disease means, learning what the doctors mean with their Latin names, well, thrombocytes, leukocytes, all these numbers, blasts, there is reading material, these blue books and so on, you must deal with that. (027‐M)
The striving for medical comprehension served to gain control. Although this approach was opposite to the otherwise observed strategy of avoidance, the goal of obtaining or maintaining control was identical. Lastly, reassurance can also be obtained by frequent conversations with other patients, medical stuff, and friends (010‐M).
Of special importance was the support by the social network and especially the family. (Interviewer: ‘was there anything that has helped you in this situation?’)
Yes, my family (cries), my family, the entire surrounding, the relatives. I was at home for three weeks, no for two weeks, well and I got so much encouragement. (022‐M)
Moreover, aspects of the hospital environment were being appreciated as influential regarding the course of the disease. A valued appraisal was expressed, e.g., for friendly ward rooms and also for a daily rhythm which helped to feel oriented. Mental stabilization was intended by and derived from a regular daily rhythm. This was aimed at the overcoming of the disease. The situation in hospital, on the other hand, was also described as being strange, not familiar and associated with feelings of being locked in.
Prognosis
The skeptical view regarding prognosis: ‘The tide can turn easily.’ [‘Das Blatt kann sich ja schnell wenden.’]
The further course was awaited by the patients with ambivalent feelings, comprising fears besides elements of hope. Fear referred predominantly to a potential relapse of the disease. The possibility of a deadly course, however, was only being verbalized by two patients. Of interest, even those among the patients who had attained a complete remission after the first course of therapy did not utter confidence. Only one female patient expressed hope towards a complete healing, the others felt relieved by the previous success; however, they also verbalized the fear of the coming of a relapse:
You do not know what comes and, and where all this is going to from here, but I assume that if it has worked out the first time that it will be healed one day. Not entirely, there will be controls. Well, the fear remains always that there might come a relapse. right? But you must live with that, and all these cancer patients live with that. (016‐M)
Regarding a preoccupation with plans for the time after finishing treatment there was no difference between those in complete remission and patients who had not reached a complete remission after the first course of chemotherapy. Two patients were unable to comment the highly relevant question on their remission status. This reflected a great uncertainty about the further course of the disease. It was may be more bearable for these patients not to know about a favorable result than gaining the knowledge of a result with potentially unfavorable consequences.
Discussion
On balance, the qualitative study exposes, when examining the coherence of the individual patients’ statements, a number of contrasts and contradictions were revealed which bear the potential for inner‐psychic conflicts. Patients’ attempt all efforts (mental, social, and medical) to be concentrated onto the overcoming of the disease. But ‘adaptation to the role as a patient’ and to the course of life in hospital was recognized as ‘normalizing patterns of coping’. Normalizing means the reintegration of well‐known everyday life and life courses. It has subjective priority in comparison with a benefit finding. After the first interim staging per bone marrow biopsy, the nature of AML was perceived by patients as threatening and frightening due to its unpredictability, invisibility, and systemic involvement. Offering detailed information about the nature of the disease, about its possible cause and about therapy did not necessarily appear to be helpful for every patient and was even rejected by some. On the other hand, several active coping mechanisms could be discerned. We also highlight the coexistence of multiple divergent emotions and tendencies in each patient.
Different forms of STOI and mental adjustment develop depending on treatment situation. So far, the present study is the first which examined the STOI of patients with AML after the interim staging as the second relevant time point of AML treatment. The basic understanding of AML is still rather vague while perception of disease is uncontrollable (immense bereavement of subjective control). It is astonishing that the achievement of a complete remission after the first cycle of chemotherapy does not appear to play a special role from the patients’ perspective. With only one exception, patients with complete remission do not estimate their prognosis more favorable than patients with only a partial remission. But the remission status plays only a role with estimation of prognosis using interim staging. This result emphasizes the relevance of studies subject to treatment course. The nature of interim staging is described with patients’ questions according to prognosis and a necessity for mental adaptation. Furthermore, it seems that for the patients, being informed about the course of the disease in a dialogue‐oriented physician‐to‐patient relationship is more important than the medical content of the information itself. This finding can fractionally be explained by a lack of general educationCitation3,Citation4 of patients (see ). Moreover, patients appear to deliberately avoid information. This behavior might serve the function to protect from negative affects and rather to maintain control.Citation10 In favor of this hypothesis is that information regarding therapy is described as frightening.
The causes of the disease are attributed by perplexity. Not‐knowing a causal attribution of AML is perceived as rather relieving since this alleviates from pondering. In relation to studies with an analogical purposeCitation15,Citation20 it is remarkable that patients conclude that their own contribution to the therapeutic process is relevant and purposeful, despite the described knowledge about the fatefulness and uncontrollability of the disease in both, its cause and its course. It remains unclear whether these activities possess an intrinsic motivation or whether they rather represent an adaptation to the medical advice. In favor of the latter assumption is the fact that the highest influence onto the course of the disease is attributed to the medical treatment. The observation that these active ways of coping are hampered by various contradictions and conflicts maybe helps to understand the extremely challenging character of this ‘second phase’ of the disease from the patients’ perspective.
With respect to the individual estimation of prognosis, it is interesting to note that patients estimate their prognosis realistic. The knowledge about the uncontrollability of the course of the disease has a frightening effect and based on the first interim staging with the first objective evaluation of treatment most patients are aware of the possibility of a relapse.
STOI as outlined above are the basis for comprehending the various aspects of coping that could be identified in the sample. Dealing with the disease is described by the patients rather uniformly in the sense of endurance, avoiding self‐reflection and – to a certain extent – taking influence upon certain aspects of their daily life. ‘Normalization is intended through acceptance of the role as a patient’. It appears by conformation to the daily routine and by the repression of the fact that the current life situation is extraordinary and artificial. Orientation can be found by routine activities on the ward. Regular communication with the clinical stuff is considered as being essential, and the patients express that a lack of this dialogue does provoke insecurity concerning the further course of the disease. Pain is denied at times and strategies of avoidance and distraction are being used. In addition, a fighting spirit and a religious orientation are ways of active coping. The realization of possibilities to take influence is pronounced. The results confirm that STOI are one of the determinants or epiphenomena of coping and mental adjustment. It has been shown that psychological resources like livelong patterns of behavior when facing challenges in life are paramount for dealing with the disease.Citation19
A grouping of patients regarding age (young versus old patients) is not possible cause nine of twelve patients are >50 years. Furthermore, an emphasis of categories is not conducted (e.g., core category, subcategory). The categories coexist side by side. They conduce to the aim of imagery of getting a comprehensive idea of AML patients’ STOI.
Other studies confirm in general the result of fading out of treatment‐relevant information and relevance of cognitive‐ and affective‐related determinants regarding patients’ preferences for an oncological therapy.Citation4,Citation13,Citation14 However, our study emphasize the role of interim staging: it is the second sensitive situation for subjective appraisals of AML patients after the first situation of diagnosis shock. Even such relevant information like the remission status is masked in conscious adaptation with illness. Such an unconscious kind of adaptation (denial) may help AML patients cope with the various stages of their illness and treatment course by allowing them time to process distressing information at a manageable rate.Citation29
In the same way, patients attributed the cause of illness as uncontrollable after interim staging. Likewise, strategies of active coping are pronounced during this unsettling clinical situation. But this seems almost not compatibly. Roesch and WeinerCitation30 found that causal attributions guide some motivated cognitions and behavior within the context of illness, and are related to specific coping strategies. Controllability of the cause of the illness was related to psychological adjustment: Individuals who made more controllable attributions reported being more well adjusted than individuals who made more uncontrollable attributions. The more controllable attribution pattern of individuals led directly to certain motivated coping cognitions and behaviors, and ultimately to more positive psychological adjustment. The latter used more avoidance coping and their expectancy for successful coping was presumed to be low.
In our opinion, the formerly named active coping strategies of fighting spirit and religious orientation are to decode as a defensive process called reaction formation. Reaction formation is a defense mechanism in which anxiety‐producing or unacceptable emotions and impulses are mastered by exaggeration of the directly opposing tendency (e.g., appraisal of cancer diagnosis with humor). Furthermore, it is evident that, contrary to the reality of hematological diseases (complicated figurative perception, uncontrollability through unknown etiology, partly prognostically unfavorable life expectancy), the two most common strategies for hematological patients (rated by patients themselves) are ‘to obtain control’ and ‘to raise hope’.Citation10 The subjective cognitions and affects could suggest a contrary mental situation or other coping efforts as subjective regulation. Fighting spirit (‘to obtain control’) and religious orientation (‘to raise hope’) are relevant regulation efforts for patients after interim staging. But the nature of both efforts is a defense process.
Whatever comes up, you will make it, you fight and well, you don’t feel like stepping into the black box. No matter how shitty you look, if you look like on Honecker’s last parade, you fight.
This regulation sounds tragic like a last fight.
When a defense mechanism is considered as an active coping strategy, it may well be adaptive in severely ill cancer patients.Citation31 For the clinical application the patients’ adaptation as a result of emotional regulation strategies must be evaluated from a functional perspective. Particularly for the treating doctors, the question about functionality of regulation is decisive. For instance, does the observed defense of emotional contents serve the patients’ adaptation or is it maladaptive behavior? A maladaptive defense often reflects in noncompliance.Citation32 The treating doctor should, in a timely manner, broach the issue of such developments, for example in case the patient ignores medically essential recommendations. In view of the high variance of reactions to diseases, the clinician should also have open conversations in which he is interested in what the patient wants to tell and, correspondingly, in which the patient actually wants to tell something. The medical conversation direction should be exercised individually and with empathy, without rigid use of general standards.Citation33 Conversation direction, oriented towards the patient’s subjective theories and emotions, requires a competence acquired through training. ‘To understand the patient and to show understanding’ proves to be important.Citation34 A doctor–patient communication adjusted to the subjective patient position can identify patients with low health literacy development and a higher demand for professional support.Citation3 The patients’ trust in the doctor, the progress of treatment, and the patients’ quality of life can also be optimized.Citation35–Citation37 Furthermore, the recognition of patients’ previous pattern of dealing with adversity will therefore be helpful and it will allow to identify patients who are in special need for psychological treatment or intervention. We commend the implementation of a fixed and validated program of standardized diagnostic as suggested by others has been helpful in this context.Citation16 In addition, we take care of patients’ subjective sensation of personal control (health locus of control) with the aim ‘to obtain control’. There is a set of patients’ own tasks for support of oncological treatment and subjective sensation of personal control: development of communication behavior to the doctors; development of treatment‐oriented health behavior (smoking, alcohol, eating habits, and physical exercise); development of treatment‐oriented knowledge about prevention of adverse events; and development of an adequate evaluation of symptoms for the management of treatment‐determined adverse events (physician: ‘What could you do, yourself, to support the treatment?’). This can be further steps into personalizing cancer care. Furthermore, more research of this kind is absolutely necessary. This study is the first which examined the STOI of patients with AML after the interim staging. Clinicians’ and researchers’ knowledge about this relevant situation during an oncological treatment course is insufficient. Generally, longitudinal studies with the purposes STOI, coping efforts or AL patients’ personal control perception are an amazing underrepresented topic in clinical hematology and psycho‐oncology.
The results must be evaluated under the following limits. Although the qualitative survey of STOI (interview‐based) are particularly suited to gain more information on intrapsychic processes as quantitative methods (questionnaire‐based), there is a lack of generalization. Subjective influences of the researcher cannot be avoided when using qualitative methods. They are reduced, however, to a minimum in our approach. Nevertheless, the qualitative approach is absolutely recommended for survey of STOI. The core difference of qualitative research in comparison with quantitative research is the search for variability with the aim to display different phenomena as much as possible. The aim of quantitative research is the search for homogeneity. As far as scientific experience goes, sometimes qualitative approach induces uncertainty regarding the proper method options: It take place between the somatic‐oriented oncology and the subject‐oriented medical psychology. But both sides find out new insights. Furthermore, we analyzed only a small sample with 12 AML patients (representative limit). Therefore, caution should be exercised when summarizing the results of this study. In addition, the homogeneity of patients’ entities in our sample is worthy of discussion. On the one hand we implement a state‐of‐the‐art condition, but on the other hand it means a selective quintessence of study results.
Having these limitations in mind, we can emphasize that coming to an arrangement with the disease, excluding questions which appear irresolvable or futile, and adapting to the lifestyle in hospital with its preformed ways of communication, means to accept the role of a patient. It leads to a certain normalization after the experience of a vital threat and is part of patients’ subjective coping efforts. Maybe this kind of normalization is the only potential way to negotiate the formerly shock after AML diagnosis.
Authorship and disclosures
MK: supervised acquisition of the data, analyzed and interpreted the data, drafted and revised the manuscript. KK: designed the study, acquired, analyzed and interpreted the data, drafted and revised the manuscript. MK: supervised acquisition of the data, interpreted the data, drafted and revised the manuscript. NK: acquired, analyzed and interpreted the data and drafted the manuscript. TF: scientific consultant on hematology/oncology, interpreted the data, drafted and revised the manuscript. JF: designed the study, supervised acquisition of the data, analyzed and interpreted the data, drafted and revised the manuscript. All authors read and approved the final manuscript. The authors reported no potential conflicts of interest.
This study was supported in part by the German José Carreras Leukemia Foundation (grant number DJCLS‐R03/22p).
References
- Nilsson ME, Maciejewski PK, Zhang B, et al.. Mental health, treatment preferences, advance care planning, location, and quality of death in advanced cancer patients with dependent children. Cancer 2009; 115: 399–409.
- Back AL, Arnold RM. Discussing prognosis: ‘How much do you want to know?’ talking to patients who do not want information or who are ambivalent. J Clin Oncol 2006; 24: 4214–417.
- Davis TC, Williams MV, Marin E, Parker RM, Glass J. Health literacy and cancer communication. CA Cancer J Clin 2002; 52: 134–149.
- Jansen SJT, Otten W, Stiggelbout AM. Review of determinants of patients’ preferences for adjuvant therapy in cancer. J Clin Oncol 2004; 22: 3181–3190.
- Bishop MM, Rodrigue JR, Wingard JR. Mismanaging the gift of life: noncompliance in the context of adult stem cell transplantation. Bone Marrow Transplant 2002; 29: 875–80.
- Epstein RM, Peters E. Beyond information: exploring patients’ preferences. JAMA 2009; 302; 195–197.
- Schilsky RL. Personalizing cancer care: American Society of Clinical Oncology Presidential Address 2009. J Clin Oncol 2009; 27, 3725–3730.
- Faller H, Lang H, Schilling S. Subjective illness theory and coping with illness by brain tumor patients. Psychother Psychosom Med Psychol 1994; 44: 207–214.
- Faller H. Subjective illness theories: determinants or epiphenomena of coping with illness? A comparison of methods in patients with bronchial cancer. Z Psychosom Med Psychoanal 1993; 39: 356–374.
- Koehler M, Koenigsmann M, Frommer J. Coping with illness and subjective theories of illness in adult patients with haematological malignancies: systematic review. Crit Rev Oncol Hematol 2009; 69: 237–257.
- Miller KB, Daoust PR. Clinical manifestations of acute myeloid leukemia. In: , Hoffman R, Benz E J, Shattil S J, (eds) Hematology, Basic principles and practice, 4th edn. Philadelphia, PA: Elsevier Inc., 2005; 1071–1091.
- Estey EH, Kantarjian HM. Therapy for acute myeloid leukemia. In: , Hoffman R, Benz E J, Shattil S J, (eds) Hematology, basic principles and practice, 4th edn. Philadelphia, PA: Elsevier Inc., 2005; 1099–1120.
- Friis LS, Elverdam B, Schmidt KG. The patient’s perspective: a qualitative study of acute myeloid leukemia patients’ need for information and their information-seeking behaviour. Support Care Cancer 2003; 11: 162–170.
- Friis LS, Elverdam B, Gjerloff-Schmidt K. Need of and desire for information by patients with acute myeloid leukemia. Ugeskr Laeger 2005; 167: 514–516.
- Koenigsmann M, Koehler K, Regner A, Franke A, Frommer J. Facing mortality: a qualitative in-depth interview study on illness perception, lay theories and coping strategies of adult patients with leukemia one week after diagnosis. Leuk Res 2006; 30: 1127–1134.
- Koenigsmann M, Koehler M, Franke A, Frommer J. Acute leukemia in adults: researching the patient’s perspective. Leukemia 2006; 20: 206–207.
- Schumacher A, Kessler T, Riedel A, Büchner T, van de Loo J. Quality of life and coping with illness in patients with acute myeloid leukemia. Psychother Psychosom Med Psychol 1996; 46: 385–390.
- Greenberg DB, Kornblith AB, Herndon JE, et al.. Quality of life for adult leukemia survivors treated on clinical trials of Cancer and Leukemia Group B during the period 1971–1988: predictors for later psychologic distress. Cancer 1997; 80: 1936–1944.
- Xuereb MC, Dunlop R. The experience of leukemia and bone marrow transplant: searching for meaning and agency. Psychooncology 2003; 12: 397–409.
- Frick E, Fegg MJ, Tyroller M, Fischer N, Bumeder I. Patients health beliefs and coping prior to autologous peripheral stem cell transplantation. Eur J Cancer Care 2007; 16: 156–163.
- Fischer-Kern M, Leithner K, Voracek M, Löffler-Stastka H, Jandl-Jager E, Springer-Kremser M. Self-report versus interview data of women’s subjective theories of illness: concordance and predictive validity in a psychosomatic-gynecological liaison service. J Psychosom Obstet Gynaecol 2004; 25: 235–245.
- van der Pol MA, Broxterman HJ, Pater JM, et al.. Function of the ABC transporters, P-glycoprotein, multidrug resistance protein and breast cancer resistance protein, in minimal residual disease in acute myeloid leukemia. Haematologica 2003; 88: 134–147.
- Schumacher A, Kessler T, Büchner T, Wewers D, van de Loo J. Quality of life in adult patients with acute myeloid leukemia receiving intensive and prolonged chemotherapy – a longitudinal study. Leukemia 1998; 12: 586–592.
- Messerer D, Engel J, Hasford J, et al.. for the German AML Intergroup. Impact of different post-remission strategies on quality of life in patients with acute myeloid leukemia. Haematologica 2008; 93: 826–833.
- Steinke I. Quality criteria in qualitative research. In: , Flick U, von Kardorff E, Steinke I, (eds) A companion to qualitative research. London: Sage, 2004; 184–190.
- Mergenthaler E, Stinson Ch. Psychotherapy transcription standards. Psychother Res 1992; 2: 125–142.
- Frommer J, Langenbach M, Streeck U. Qualitative psychotherapy research in German speaking countries. Psychother Res 2004; 14: 57–75.
- Strauss A, Corbin J. Basics of qualitative research, 2nd ed. London: Sage, 1998.
- Rabinowitz T, Peirson R. ‘Nothing is wrong, doctor’: understanding and managing denial in patients with cancer. Cancer Invest 2006; 24: 68–76.
- Roesch SC, Weiner B. A meta-analytic review of coping with illness: do causal attributions matter? J Psychosom Res 2001; 50: 205–219.
- Vos MS, de Haes JC. Denial in cancer patients, an explorative review. Psychooncology 2007; 16: 12–25.
- Kreitler S. Denial in cancer patients. Cancer Invest 1999; 17: 514–534.
- Baile WF, Buckman R, Schapira L, Parker PA. Breaking bad news: more than just guidelines. J Clin Oncol 2006; 24: 3217.
- Back AL, Arnold RM, Baile WF, Tulsky JA, Fryer-Edwards K. Approaching difficult communication tasks in oncology. CA Cancer J Clin 2005; 55: 164–177.
- Ramirez AJ, Graham J, Richards MA, Cull A, Gregory WM. Mental health of hospital consultants: the effects of stress and satisfaction at work. Lancet 1996; 347: 724–728.
- Maguire P, Pitceathly C. Key communication skills and how to acquire them. BMJ 2002; 325: 697–700.
- Gordon HS, Street RL, Sharf BF, Kelly PA, Souchek J. Racial differences in trust and lung cancer patients’ perceptions of physician communication. J Clin Oncol 2006; 24: 904–909.