Japanese Journal of Clinical Oncology Advance Access originally published online on May 30, 2006
Japanese Journal of Clinical Oncology 2006 36(5):329-332; doi:10.1093/jjco/hyl029
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© 2006 Foundation for Promotion of Cancer Research
Short Communication |
Psychological Distress Experienced by Families of Cancer Patients: Preliminary Findings from Psychiatric Consultation of a Cancer Center Hospital
1 Department of Psychiatry and Cognitive-Behavioral Medicine, Nagoya City University Graduate School of Medical Sciences, Nagoya, 2 Psychiatry Division and 3 Psycho-Oncology Division, Research Center for Innovative Oncology, National Cancer Center Hospital East, Kashiwa, Chiba, 4 Psychiatry Division, National Cancer Center Hospital, Tokyo and 5 Department of Psychiatry, Kashiwa Hospital, Jikei Medical University, Kashiwa, Chiba, Japan
For reprints and all correspondence: Yosuke Uchitomi, Psycho-Oncology Division, Research Center for Innovative Oncology, National Cancer Center Hospital East, 6-5-1 Kashiwanoha, Kashiwa 277-8577, Japan. E-mail: yuchitom{at}east.ncc.go.jp
Received January 12, 2006; accepted February 12, 2006
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Abstract |
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Objective: The purpose of the present study was to obtain preliminary findings regarding psychiatric disorders and background characteristics among Japanese family members of cancer patients.
Methods: We investigated the psychiatric diagnosis and background factors of family members of cancer patients by analyzing the consultation data of patients referred to the Psychiatry Division, National Cancer Centre Hospital East, Japan.
Results: Of a total of 1469 psychiatric consultation, 47 (3.2%) family members were referred, and 85% of them were spouses. The most common patient cancer site was the lung. Approximately one-half of the referred family encountered patients' end-of-life issues. The most common psychiatric diagnoses were adjustment disorders, followed by major depression.
Conclusions: These preliminary findings suggest that psychosocial support for family members is not fully delivered and development of a comprehensive support system for caregivers of cancer patients is an urgent issue in the clinical oncology setting in Japan.
Key Words: Cancer • family • psychiatric consultation • psychological distress
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INTRODUCTION |
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The experience of cancer is generally believed to cause considerable stress not only to the patient but also to caregivers who share the distressing illness trajectory of the patient. It is family that most commonly fills the role of primary care-provider for the patient with cancer. In fact, previous Western studies have suggested that approximately 10–30% of family members experience some form of psychiatric morbidity (1). Moreover, the need for the oncology/medical team to take care of the whole family has been increasingly appreciated (2).
On the other hand, it is well known that there are imminent cross-cultural differences regarding family functions between Western and Asian countries (3). For example, regarding decision-making such as disclosure of incurable cancer diagnosis, family opinions are accorded a larger role by Japanese patients than by those in the United States (4). These data suggest that family members under the Japanese medical system may experience different type of psychological distress and/or burden.
To the best of our knowledge, there has been no study investigating psychiatric morbidity experienced by family members of patients with cancer in Japan. Given the very limited amount and scope of research, there is an obvious need for further study on the family's experience in Japan. In particular, information should be available regarding the diagnosis of psychiatric disorders that are often experienced by family members rather than the findings of subjective self-reported psychological measures, if we are to consider the actual care, and necessity for the professional treatment, of affected families.
The purpose of the present study was to obtain preliminary findings regarding psychiatric disorders and background characteristics among family members of cancer patients by reviewing psychiatric consultation data so that we better understand the necessity and future strategy of caring for family members as well as cancer patients in Japanese oncology/medical system.
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METHODS |
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DATABASE OF PSYCHIATRIC CONSULTATION
All psychiatric consultations referred to the Psychiatry Division, National Cancer Centre Hospital East, from January 2000 (when we began to include the referred family's data into our after-mentioned database) to December 2003 were reviewed by the authors. A computerized database, custom-made for the Psychiatry Division, National Cancer Center, was used to identify family members of cancer patients who had been referred to the Psychiatry Division. The database included demographic variables such as age, sex, marital status and employment status. These data were obtained from the interviews by psychiatrists. The database also included the reason for psychiatric consultation classified under 35 different categories and psychiatric diagnoses. Psychiatric diagnoses were evaluated according to the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM-IV) (5). The reasons for psychiatric consultation were assessed by multiple choice questions based on the description of the physician's request in a patient chart and/or the psychiatrists' judgment regarding the psychiatric referral after communication with physicians and nurses. Referred patient sheets completed by psychiatrists were automatically read by a mark sheet reader and preserved in the database. In this study, referred family members of cancer patients were extracted from this database. Other data, including the relationship of the family member to the cancer patient, presence of physical disease, cancer patient characteristics (e.g. age, cancer site) and events related to cancer, were obtained from the charts.
Since this was a retrospective study using data obtained during clinical practice, informed consent and institutional review board approval were not obtained.
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RESULTS |
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A total of 1469 cases were referred to the Psychiatry Division during the study period. Of these, 47 (3.2%) were family members (Table 1). Most of the family members had been referred for a psychiatric consultation because of depression (N = 30, 63.8%), followed by anxiety/fear (N = 15, 31.9%), their own request for referral (N = 11, 23.4%), sleep disorder (N = 8, 17.0%) and psychiatric evaluation (N = 7, 14.9%). Regarding the relationship to cancer patients, 85% of family members were spouses. More than 80% of the referred family members were females. More than 20% of the family members had some physical disease. The most common patient cancer site was the lung (N = 12, 25.5%), followed by head and neck (N = 7, 14.9%). Approximately half of the referred family encountered patients' end-of-life issues. The most common psychiatric diagnoses were adjustment disorders (N = 21, 44.7%), followed by major depression (N = 17, 36.2%). Nine patients (15.1%) did not meet the criteria of any psychiatric diagnosis.
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DISCUSSION |
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The findings of the present study suggest that very few family members were provided with actual psychiatric support and/or treatment in cancer center hospitals in Japan. This is because our data reveals that only 47 family members were referred for psychiatric care during 4 years although the Psychiatry Division of the National Cancer Centre Hospital East announces family care as one of the important roles of the division. Previous Western studies demonstrated that family members are as distressed as the cancer patients themselves (6,7). In addition, a recent study, investigating psychiatric disorders by using a rigorous diagnostic interview among caregivers of advanced cancer patients, has indicated that a total of 13% of the caregivers had met criteria for a psychiatric disorder, including panic disorder, major depression and so on. One of the important limitations of the study is that it did not assess adjustment disorders, which may be a possibly prevalent psychiatric disorder among family members (8). Given the fact that family members also experience highly distressing psychological problems, Japanese hospitals that provide intensive cancer care should deal more with this hidden issue, namely family psychosocial distress.
Regarding the relationship to the cancer patient, the family member most often referred to was the spouse. While very few studies have investigated the differences in psychiatric morbidity and the psychological impact of cancer among family members (1,6), our findings suggest that it is the spouse who needs the strongest psychosocial support. This is not surprising because the spouse usually plays a key role in caring for a cancer patient, participates in and shares many difficult decision-making processes, which occasionally result in a strongly stressful situation. Concerning the cancer site of the patient, family members of patients with lung cancer were most likely to be referred. These findings can be explained by the fact that lung cancer is one of the most common and treatment-resistant cancers in Japan (9) and also one of the most distressing forms of cancer (10,11) although this may be institutional bias. Regarding the events related to cancer, end-of-life issues seem to be the most common and most stressful situation experienced by Japanese family members. Indeed, several previous studies have consistently demonstrated that the terminal phase of cancer patients is the most distressing period for family members (12–14). These findings suggest that caregivers in the families of lung cancer patients, particularly spouses, are placed at a high risk of developing psychiatric disorders especially during the terminal phase and that these family members may well be candidates for screening for psychological distress.
Regarding the diagnostic categories encountered, adjustment disorders and major depression are most common. It is interesting that these disorders are also well known as the most common psychiatric disorders among cancer patients (15,16). These findings suggest that both cancer patients and their family members share a similar type of psychological distress during the illness trajectory as one unit that is a socially integrated human group.
In Japan, treatments for medical diseases including cancer are increasingly provided on an outpatient basis, thus much of the burden of care has shifted from health care professionals to patients and their families. It has been demonstrated in the Western countries that nearly 20% of family caregivers who care for a family member with a serious illness quit work or made major alterations in their life arrangements to provide care, 31% of families lost most or all of their savings and 29% of families reported loss of their main source of income (17). Thus, there is no doubt that support for family members will become more essential and therefore development of a comprehensive support system for caregivers of cancer patients is an urgent issue in the clinical oncology setting in Japan. Thus cancer should be treated as a family problem and a family issue. Family members should be considered as ‘second order patients’ (2,18).
This retrospective study has many limitations. Selection bias and institutional bias are important limitations. For example, institution bias may be revealed by the finding that the second most common patient cancer site was the head and neck, because National Cancer Centre Hospital East admits more patients with head and neck cancer than any other hospitals in Japan. In addition, important data, such as cancer patients' bio-medical and psychosocial characteristics, history of psychiatric disorders and social support factors of the family, were not included in the analysis.
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References |
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