Advertisement

International Journal of Clinical Oncology

, Volume 16, Issue 3, pp 230–237 | Cite as

A survey of disclosure of diagnosis to patients with glioma in Japan

  • Fukuko Yamamoto
  • Naoya Hashimoto
  • Naoki Kagawa
  • Yoshiko Okita
  • Yasuyoshi Chiba
  • Noriyuki Kijima
  • Manabu Kinoshita
  • Kikuko Yoshizu
  • Yasunori Fujimoto
  • Kei Hirai
  • Toshiki Yoshimine
Original Article

Abstract

Background

There have been few studies investigating neuro-oncologists’ attitudes toward the disclosure of the diagnosis. This study aimed to determine the current status of disclosure to glioma patients in Japan and to analyze the factors associated with disclosure.

Methods

A set of questionnaires about disclosure to patients with malignant glioma was distributed by e-mail to 191 physicians participating in the 27th Annual Meeting of the Japan Society for Neuro-Oncology.

Results

The response rate was 73.8% (141/191). Of these, 44.3% disclosed the correct diagnosis to glioblastoma patients aged <60 years and 41.4% disclosed the correct diagnosis to those aged ≥70 years; for anaplastic astrocytoma patients, these proportions were 61.5 and 51.9%, respectively. Physicians working at facilities performing surgery on more than 50 cases of glioma per year, those in metropolitan areas, and those with other patient psychosocial support systems available disclosed the diagnosis and prognosis more frequently. The physicians’ gender and postgraduate period of practice did not influence disclosure. When the family opposed disclosing the diagnosis to the patient, more than half of the physicians respected the family’s wishes.

Conclusions

This survey revealed that most of the physicians told at least the malignant nature of the disease to patients with malignant glioma, but they did not always tell the exact diagnosis. Physicians tended to modify their attitudes toward disclosing a diagnosis or prognosis of glioma depending on the histopathological grading, the hospital volume of cases, the location, the availability of patient psychological support systems, and the patient’s family’s wishes.

Keywords

Diagnosis disclosure Prognosis disclosure Glioma Questionnaire survey Neurosurgeon 

Introduction

The disclosure of a diagnosis of cancer is an important and difficult problem, not only for patients but also for physicians. In the United States in the 1960s, 88% of physicians made it a rule to avoid disclosure of the diagnosis to the patient [1]. However, the disclosure of a diagnosis of cancer to the patient has been considered a matter of course in the United States, as reflected in a report by Novack et al. [2], who reported that 98% of physicians disclosed the diagnosis to the patient. In Japan, 80% of patients did not receive disclosure of a diagnosis of cancer in 1992 [3]; however, in the latter half of the 1990s, more than 70% of patients did [4, 5]. As pointed out by Novack et al. [2] and again by Horikawa et al. [4], such increases in the disclosure of cancer diagnosis can be attributed to the following factors: (1) improvement in the outcome of cancer treatment and mortality rates; (2) the acceptance and spread of the concept of informed consent; and (3) increasing respect for patients’ human rights and their right to make their own decisions.

Glioma is a representative malignant tumor affecting the central nervous system. The prognosis for malignant glioma is still poor compared to cancer in other organs [6]. Glioma can cause specific symptoms such as high-level brain dysfunction and consciousness disturbance, and the patient’s condition changes rapidly, which can be highly stressful for the patient’s family [7, 8]. Furthermore, satisfactory systems providing appropriate support to glioma patients and their families have not been established [9, 10]. For physicians dealing with patients with this difficult disease, the disclosure of the diagnosis also appears to be a highly stressful issue. According to the literature, there has been only one investigation of the position of physicians regarding disclosure of a glioma diagnosis.

Japanese neurosurgeons certified by the Japan Neurosurgical Society consistently participate in not only the diagnosis and surgical treatment of gliomas but also the attendant chemotherapy and radiotherapy. Japanese neurosurgeons play an important role in all the management aspects of glioma, including surgery, radiotherapy, chemotherapy and psychosocial problems, similar to the role of neuro-oncologists elsewhere. Under such circumstances, the present study was undertaken to investigate the current status of disclosure of glioma diagnosis to patients in Japan and to analyze the factors associated with disclosure.

Materials and methods

This cross-sectional study was performed prior to the 27th Annual Meeting of the Japan Society for Neuro-Oncology (the 27th JSNO), held in November 2009. The society is a subdivisional society of the Japanese Neurosurgical Society, and thus almost all participants are Japanese Neurosurgical Board-certified or in training programs. All physicians who registered for the 27th JSNO were asked to participate, and in October 2009 the questionnaire was sent by e-mail to the 191 physicians who consented to the study. One week later, the questionnaire was sent again by e-mail to those physicians who had not responded to the questionnaire.

The questionnaire was prepared by partially modifying the questionnaire used by Narita et al. [11], and by adding new questions. It comprised the following 5 categories: (1) physician’s characteristics, including gender, postgraduate period of practice, subspecialty, category of facility, and the number of glioma surgeries performed per year at the facility; (2) methods of disclosing the diagnosis and prognosis to adult patients with anaplastic astrocytoma (AA) and glioblastoma (GB); (3) methods of informing the patient and/or their family members of the diagnosis; (4) factors determining the decision to disclose or not disclose the diagnosis; and (5) presence/absence of support for patients and families from psychiatrists and/or clinical psychologists, and experience of receiving a seminar/lecture on disclosure and palliative care. Regarding category (2), to clarify the difference in attitudes toward older patients and relatively young patients, we posed the question separately for the case of patients aged <60 years and those aged ≥70 years, following the approach seen in Narita’s [11] report. The questionnaire was composed of 43 questions (single-item or multiple-choice method), and took about 20 min to complete.

In the statistical analysis of the data, the individual variables contained in each question were first counted. The variables for which no answer was available were excluded from the analyses. The chi-squared test was used for contingency table analysis or logistic regression analysis. For the second category (disclosure of the disease to GB patients), only cases disclosed correctly as GB were counted as “disclosed cases;” cases disclosed as another diagnosis were classified as “inexactly disclosed cases.” Moreover, pertaining to disclosure to AA patients, only cases disclosed as AA were counted as “disclosed cases.” Regarding the disclosure of the prognosis, cases were counted as “prognosis disclosed cases” if the approximate survival period or survival rate was explained using figures, or if the period for which the patient was able to work or to lead an unassisted daily life was explained using figures. Statistical significance was established at the P < 0.05 level. All statistical analyses were performed using the JMP statistical software, version 8.0.1 (SAS Institute Inc., Cary, NC, USA).

This study was approved by the ethics review board of the Osaka University Faculty of Medicine.

Results

Responses were collected from 142 of the 191 physicians. One of these 142 respondents gave no answers to the questionnaire because he/she was not engaged in clinical practice at that time. Thus, valid responses were collected from 141 physicians (73.8%). Among all of the respondents, 6 were female. The age of the respondents ranged from 28 to 75 years, with a mean of 43.2 years. Most respondents (98.6%) selected brain tumor as their subspecialty. The physicians worked at university hospitals (102 physicians), cancer centers (10 physicians), or other categories of hospital (27 physicians) (Table 1).
Table 1

Characteristics of the physicians

Characteristics

No.

%

Gender (n = 141)

 Male

135

95.7

 Female

6

4.3

Postgraduate period of practice, years (mean) (n = 139)a

18 (4–50)

Subspecialtyb

 Brain tumor

139

98.6

 Vascular

21

14.9

 Trauma

6

4.3

 Pediatric neurosurgery

13

9.2

 Functional neurosurgery

7

5.0

 Spine surgery

3

2.1

 Gamma knife

1

0.7

 Neuroendoscopy

1

0.7

Hospital (n = 140)a

 Cancer center

10

7.1

 University hospital

103

73.6

 Other hospital

27

19.3

Areac (n = 141)

 Metropolitan

50

35.5

 Nonmetropolitan

91

64.5

Number of glioma surgeries performed per year (n = 140)a

 >5

12

8.6

 5–10

17

12.1

 11–50

96

68.6

 ≥51

15

10.7

aItem sample sizes differed because of missing values

bMultiple selections were allowed

cMetropolitan areas (population more than 1 million people), non-metropolitan areas (population less than 1 million people)

Diagnosis/prognosis disclosure

The percentage of physicians who made it a rule to disclose a diagnosis of GB correctly was 44.3% for patients aged <60 years and 41.4% for patients aged ≥70 years (Table 2). For the question regarding the policy of prognosis disclosure to GB patients <60 years, 34.3% of physicians reported that they “explained the approximate survival period or survival rate using figures,” 19.6% “explained how much time the patient could have left to work or perform activities of daily living unassisted, using figures,” and 45.5% “did not explain using concrete figures.” These percentages were 29.3, 16.4, and 54.3%, respectively, for GB patients ≥70 years.
Table 2

Explanation of the diagnosis to the patient

Patient’s age

<60 years old

≥70 years old

No.

%

No.

%

Which term(s) do you use to explain the diagnosis to patients with GB? (n = 133)a

 GB

59

44.3

55

41.4

 Malignant glioma

45

33.8

36

27.1

 Malignant brain tumor

7

5.3

12

9.0

 Glioma

19

14.3

20

15.0

 Brain tumor

3

2.3

10

7.5

Which term(s) do you use to give the diagnosis to patients with AA?

(n = 135)a

 

(n = 133)a

 

 AA

83

61.5

69

51.9

 Malignant glioma

28

20.7

31

23.3

 Malignant brain tumor

5

3.7

7

5.3

 Glioma

15

11.1

17

12.8

 Brain tumor

4

3.0

9

6.8

AA anaplastic astrocytoma, GB glioblastoma

aItem sample sizes differed because of missing values

The percentage of physicians who made it a rule to disclose the diagnosis of AA correctly was 61.5% for patients <60 years and 51.9% for patients ≥70 years (Table 2). When asked about their policy for disclosing the prognosis to AA patients <60 years, 40.4% of physicians reported that they “explain the approximate survival period or survival rate using figures,” 26.7% “explained how much time the patient could have left to work or perform activities of daily living unassisted, using figures,” and 32.9% “did not explain using concrete figures.” These percentages were 33.8, 22.8, and 43.5%, respectively, for AA patients ≥70 years.

Physicians working at facilities that perform surgery on more than 50 cases of glioma per year disclosed the diagnosis of GB to patients aged ≥70 years more frequently than physicians working at facilities that performed this surgery less frequently. Physicians working in metropolitan areas disclosed the diagnosis of GB to patients aged <60 years more frequently than physicians working in nonmetropolitan areas. The percentage of physicians disclosing the diagnosis did not differ with physician’s gender or postgraduate period of practice (Table 3).
Table 3

Characteristics of physicians who give accurate diagnoses to patients

Patient’s condition

Patients with GB

Patients with AA

<60 years old

≥70 years old

<60 years old

≥70 years old

No.a

%b

P value

No.a

%b

P value

No.c

%d

P value

No.c

%d

P value

Physician’s characteristics

 Gender

  Male

55

43.3

 

51

40.2

 

79

61.2

 

65

51.2

 

  Female

4

66.7

0.260

4

66.7

0.198

4

66.7

0.790

4

66.7

0.458

 Postgraduate period of practice

 

0.752

 

0.416

 

0.635

 

0.315

 Hospital

  Cancer center

8

88.9

 

8

88.9

 

8

88.9

 

8

88.9

 

  University hospital

38

38.4

 

35

35.7

 

61

61.6

 

50

51.0

 

  Other hospital

12

50.0

0.012*

11

44.0

0.008*

14

53.9

0.174

11

44.0

0.063

 The number of glioma surgeries performed per year

  ≤50

50

42.0

 

46

38.3

 

73

60.3

 

59

49.6

 

  >50

9

69.2

0.061

9

75.0

0.014*

10

76.9

0.242

10

76.9

0.061

 Areae

  Metropolitan

28

59.6

 

25

52.1

 

33

68.8

 

28

58.3

 

  Nonmetropolitan

31

36.1

0.009*

30

35.3

0.059

50

57.5

0.197

41

48.2

0.263

AA anaplastic astrocytoma, GB glioblastoma

aNumber of physicians who give the patient the diagnosis using the term “glioblastoma”

bPercent of physicians who give the patient the diagnosis using the term “glioblastoma” for each category

cNumber of physicians who give the patient the diagnosis using the term “anaplastic astrocytoma”

dPercent of physicians who give the patient the diagnosis using the term “anaplastic astrocytoma” for each category

eMetropolitan areas (population more than 1 million people), nonmetropolitan areas (population less than 1 million people)

* P < 0.05

Regarding prognosis disclosure, physicians in metropolitan areas or those working at facilities that perform surgery on more than 50 patients per year more frequently disclosed the prognosis to patients with GB or AA than physicians in nonmetropolitan areas or those working at facilities that perform this surgery less frequently. The percentage of physicians disclosing the prognosis did not differ with facility type, physician’s gender or postgraduate period of practice (Table 4).
Table 4

Characteristics of physicians who give prognoses to patients

Patient’s condition

Patients with GB

Patients with AA

<60 years old

≥70 years old

<60 years old

≥70 years old

No.a

%b

P value

No.a

%b

P value

No.a

%b

P value

No.a

%b

P value

Physician’s characteristics

 Gender

  Male

47

40.5

 

38

32.2

 

57

47.9

 

46

39.0

 

  Female

1

25.0

0.533

1

25.0

0.762

1

16.7

0.134

1

16.7

0.272

 Postgraduate period of practice

 

0.264

 

0.292

 

0.228

 

0.537

 Hospital

  Cancer center

5

62.5

 

5

62.5

 

5

55.6

 

5

62.5

 

  University hospital

36

39.1

 

28

30.4

 

43

45.7

 

33

35.9

 

  Other hospital

6

31.6

0.320

5

23.8

0.123

9

42.9

0.812

8

34.8

0.315

 The number of glioma surgeries performed per year

  ≤50

39

36.8

 

31

28.4

 

49

43.8

 

38

33.9

 

  >50

9

69.2

0.024*

8

66.7

0.007*

9

75.0

0.039*

9

81.8

0.002*

 Areac

  Metropolitan

24

57.1

 

20

44.4

 

26

61.9

 

23

51.1

 

  Nonmetropolitan

24

30.8

0.005*

19

24.7

0.024*

32

38.6

0.013*

24

30.4

0.022*

AA anaplastic astrocytoma, GB glioblastoma

aNumber of physicians who disclosed the prognosis

bPercent of physicians who disclosed the prognosis for each category

cMetropolitan areas (population more than 1 million people), nonmetropolitan areas (population less than 1 million people)

* P < 0.05

Disclosure of the diagnosis to patients aged <60 years was performed less frequently as the histological grade of the disease increased (P = 0.005). The percentage of physicians disclosing the prognosis did not differ significantly with the patient’s age or the histological grade of the disease (P = 0.31).

Methods used to explain to patients and family members

Regarding the method used to explain to patients and family members, 32.4% of physicians adopted the policy of “giving the same explanation to the patient and their family members,” and 67.6% adopted the policy of “giving a detailed explanation only to the family members, while avoiding giving a detailed explanation to the patient.” No physician adopted either the policy of “giving a detailed explanation only to the patient, while avoiding a detailed explanation to family members” or “giving an explanation only to the patient.” When asked about the method used to explain to patients whose family members were against disclosure to the patient, 5.0, 43.2, 51.8, and 0.0% of the physicians adopted a policy of “disclosure to the patient,” “disclosure of diagnosis to the patient after persuading the family members,” “avoiding disclosure of diagnosis to the patient while giving some information,” and “providing no explanation to the patient,” respectively.

Factors determining disclosure

When asked about which aspects of the patient and family members determined whether the diagnosis was disclosed, 86.5, 80.1, and 71.6% of the physicians cited the influence of “the wish or sentiment of the family,” “the condition of the patient, including consciousness,” and the “the wish or sentiment of the patient,” respectively. The influences of the “patient’s religion” and the “patient’s gender” were cited by 12.8 and 5.7% of the physicians, respectively. In an analysis of physician-related factors that affected disclosure, the influence of “the policy of the neuro-oncologist” and the “need for treatment” were cited by 77.3 and 73.1% of the physicians, respectively (Table 5).
Table 5

Factors that influenced physicians when they were deciding whether to disclose the diagnosis

n = 141

No.

%

Patient and family factorsa

 The wish or sentiment of the family members

122

86.5

 The condition of the patient, including consciousness

113

80.1

 The wish or sentiment of the patient

101

71.6

 Patient’s age

88

62.4

 Patient’s intelligence

70

49.6

 Relationship between patient and neuro-oncologist

52

36.9

 Patient’s occupation or social standing

46

32.6

 Relationship between relatives and neuro-oncologist

45

31.9

 Main caregiver

40

28.4

 Patient’s religion

18

12.8

 Patient’s gender

8

5.7

Physician-related factorsa

 Policy of the neuro-oncologist

109

77.3

 Need for treatment

103

73.1

 Medical education of the neuro-oncologist

30

21.3

 Support from clinical psychotherapist or psycho-oncologist

28

19.9

 Policy of the hospital

17

12.1

aMultiple selections were allowed

Support systems within hospitals and availability of seminars/lectures on disclosure

Among the 141 physicians, 51.4% cited the availability of patient support systems, including psychiatrists, psychosomatic physicians, clinical psychologists, or others, while the remainder had no such support systems for patients. Physicians whose patients had access to such support systems disclosed the diagnosis to GB patients and AA patients aged ≥70 years more frequently than physicians without such patient support (Table 6). The percentage of physicians who disclosed the prognosis to patients aged ≥70 years was higher for physicians with patient support systems than for physicians without such systems (GB patients, P = 0.041; AA patients, P = 0.016). Among the 141 physicians, 65.0% had attended a seminar or lecture on disclosure, and 95.7% affirmed the need for such seminars/lectures.
Table 6

Availability of support to physicians who gave accurate diagnoses to patients

Patient’s condition

Patients with GB

Patients with AA

<60 years old

≥70 years old

<60 years old

≥70 years old

No.a

%

P value

No.a

%

P value

No.b

%

P value

No.b

%

P value

Existence of supportc

 Yes

37

52.1

 

37

53.6

 

47

66.2

 

42

60.0

 

 No

21

34.4

0.041*

17

27.0

0.002*

35

55.6

0.207

26

41.9

0.038*

AA anaplastic astrocytoma, GB glioblastoma

aNumber of physicians who give the patient the diagnosis using the term “glioblastoma”

bNumber of physicians who give the patient the diagnosis using the term “anaplastic astrocytoma”

cIncludes availability of psychiatrists, psychosomatic physicians, or clinical psychologists

* P < 0.05

Discussion

According to the previous literature, the only other survey on the disclosure of the diagnosis/prognosis to glioma patients by physicians aside from the present one was reported by Narita et al. [11]. The present survey’s subjects were surgical neuro-oncologists attending the 27th JSNO, the same as in Narita’s report. In Japan, patients with brain tumors are primarily managed by general neurosurgeons, and surgical neuro-oncologists are not always in charge of the diagnosis or treatment of patients with gliomas. For this reason, the results of the present study cannot be viewed as faithfully reflecting the current status of disclosure to glioma patients in Japan, and future analyses must survey all neurosurgeons. However, the present findings provide valuable preliminary insights into the area of glioma diagnosis disclosure, particularly in light of the almost complete lack of information regarding the disclosure of glioma diagnoses by neurosurgeons in Japan.

In this study, the percentage of physicians who made it a rule to disclose the diagnosis correctly to patients aged <60 years was 44.3% for GB patients and 61.5% for AA patients. The percentage of physicians who disclosed that the disease was malignant was 77.4–85.9%. This percentage did not differ significantly with histological grade of the disease or the patient’s age. However, when it came to disclosing the exact diagnosis, for patients aged <60 years, physicians tended to disclose the true diagnosis less frequently as the histological grade of the disease increased. As a factor determining disclosure, 80.1% of the physicians cited the patient’s condition, including consciousness, suggesting that physicians tend to modify their method of disclosure depending on the medical condition of the individual patient. The patient’s age was cited as a factor determining disclosure by 62.4% of physicians. The percentage of physicians practicing disclosure tended to decrease as the patient’s age increased, although this percentage did not differ significantly between patients aged <60 years and those ≥70 years.

The method used to explain the diagnosis to the patient and family members adopted by 70% of the physicians was to “give a detailed explanation only to family members, while avoiding a detailed explanation to the patient.” Physicians often sided with the wishes or sentiments of the family over the wishes or rights of the patient when determining disclosure. In cases where the family members of the patient were against disclosure to the patient, about half of the physicians respected the wishes of the family members. According to previous reports on cancer management in Japan, many physicians have experienced resistance from family members regarding the disclosure of the diagnosis to the patient [12], and 60% of physicians inform only the family members of the true medical findings, while giving an opportunistic explanation to the patient [13]. The symptoms of glioma advance more rapidly than the symptoms of other types of cancer [7], causing increased stress and burden on family members due to neurological symptoms such as paralysis. Thus, consideration of the patient’s family members, including full disclosure to family members, is also very important when disclosure is made, which is reflected in the results of the present study. The findings also show that physicians deem family considerations more important than those of the patient, perhaps to reduce stress on the patient.

Narita et al. [11] reported that Japanese surgical neuro-oncologists most frequently disclosed the diagnosis as “malignant glioma” to patients with GB. However, in the present study, the more accurate term “GB” was most frequently used during disclosure to patients with GB. Although our survey was conducted 2 years after the survey by Narita et al., it would appear that the method of revealing the diagnosis has changed slightly during that time.

The percentage of physicians practicing disclosure also varied depending on the presence/absence of support for patients from psychiatrists, psychosomatic physicians, and clinical psychologists. The majority of physicians seemed to consider attending a seminar or lecture on disclosure to be important. As pointed out by Narita et al. [11], there are only a few psychiatric oncologists that specialize in the diagnosis and treatment of gliomas in Japan, and certified neurosurgeons are often also in charge of the psychosocial care of glioma patients. Thus, we believe that enriching the patient support network within the framework of the healthcare system is of the utmost importance.

To date, several reports have been published on surveys of disclosure to brain tumor patients in Western countries, and these have demonstrated that 92–100% of brain tumor patients are aware of their diagnosis and 0–58% are aware of the prognosis [14, 15, 16, 17, 18, 19]. However, only Salander et al. [15] reported that the diagnosis of GB or AA was accurately disclosed; the other papers pertained to “disclosure using the term brain tumor” or “disclosure using an unspecified term” (Table 7). In the present study, 77.4–85.9% of the physicians revealed the malignant nature of the disease, and this percentage is slightly lower than that from Western countries. In the present study, the percentage of physicians disclosing a precise prognosis was 32.0–46.4%. This survey pertained to the attitudes of physicians, and did not reveal the situations for disclosure to individual patients or the extent of understanding by patients. Future surveys should also focus on the patient’s experience of diagnosis disclosure, including an assessment of the degree of the patient’s understanding.
Table 7

Studies of disclosure to brain tumor patients

References

Year

Country

Sample n (type of tumors)

Method

Patient’s awareness of diagnosis

Patient’s awareness of prognosis

Davies et al. [14]

1996

UK

75 (malignant cerebral glioma)

Interview

95% of patients understood they suffered from a brain tumor

25% of patients were fully aware of the prognosis

Salander et al. [15]

1996

Sweden

30 (16 AA, 3 GB)

Interview

100% (16 AA, 3 GB)

58% of patients knew it was fatal

Anderson et al. [16]

1999

UK

40 (16 HGG, 14 LGG, 10 meningioma)

Interview

ND

49% of patients had full and 43% had intermediate knowledge of the prognosis

Davies et al. [17]

1999

UK

60 (malignant cerebral glioma)

Retrospective from records

20–27%

10–57%

Giovagnoli et al. [18]

1999

Italy

57 (malignant brain tumor)

Questionnaire

100% (as a brain tumor)

0%

UK United Kingdom, HGG high-grade glioma, LGG low-grade glioma, AA anaplastic astrocytoma, GB glioblastoma, ND not described

According to the previous surveys on disclosure to cancer patients in Japan, the following factors increase the frequency of disclosure: (1) young age of the patient [4, 12, 20]; (2) patient management at the cancer center [21]; (3) need for surgery [20]; and (4) favorable general condition [4]. The major reason cited for disclosure to patients was “so that the patient knows the reason for the treatment,” and the major reasons for avoiding disclosure to patients were “poor understanding of the patient” and “family opposition to disclosure” [5, 22, 23]. In the present study, the factors selected by more than half of the physicians as those that determined disclosure were “need for treatment,” “the wish or sentiments of the family,” “the condition of the patient, including consciousness,” “the wish or sentiment of the patient,” and “patient’s age.” The factors selected as determining the disclosure of other cancers are similar to those selected as determining the disclosure of glioma. However, we had the impression that physicians tended to attach more importance to disclosure to family members when dealing with patients with glioma. This is probably because an explanation to family members, in addition to an explanation to the patient, is more important when dealing with glioma, which involves symptoms such as cognitive disorders and consciousness disturbances.

In the present study, 80% of the Japanese surgical neuro-oncologists questioned revealed at least the malignant nature of the disease to patients with malignant glioma. However, the percentage of physicians disclosing an accurate diagnosis was only about 40–60%. The method of disclosing the diagnosis or prognosis differed depending on the histological grade, the hospital volume of cases, the location of the facility, and the availability of patient support systems within the facility. More detailed surveys of physicians regarding the content, the timing, and method used to explain the diagnosis to patients and family members are required. This study also illustrates the need for support for the patients and families from other physicians and healthcare professionals, in addition to surgical neuro-oncologists in Japan. Thus, in the future, we should also address the issue of enriching the support programs available for cancer patients and their family members. We believe that these efforts may lead to improvements not only in clinical outcomes but also in the quality of life of the patients and families.

Notes

Acknowledgments

The authors are indebted to all those physicians who cooperated with the questionnaire survey, and to Dr. Shin-Ichi Miyatake (Department of Neurosurgery, Osaka Medical College) for allowing the questionnaire survey to be distributed to the participants at the 27th JSNO (the Japan Society for Neuro-Oncology). The authors would also like to thank Ms. Mariko Kakinoki for her secretarial assistance.

Conflict of interest

No author has any conflict of interest.

References

  1. 1.
    Oken D (1961) What to tell cancer patients. A study of medical attitudes. JAMA 175:1120–1128PubMedGoogle Scholar
  2. 2.
    Novack DH, Plumer R, Smith RL et al (1979) Changes in physicians’ attitudes toward telling the cancer patient. JAMA 241:897–900PubMedCrossRefGoogle Scholar
  3. 3.
    Uchitomi Y, Yamawaki S (1997) Truth-telling practice in cancer care in Japan. Ann N Y Acad Sci 809:290–299PubMedCrossRefGoogle Scholar
  4. 4.
    Horikawa N, Yamazaki T, Sagawa M et al (2000) Changes in disclosure of information to cancer patients in a general hospital in Japan. Gen Hosp Psychiatry 22:37–42PubMedCrossRefGoogle Scholar
  5. 5.
    Kawakami S, Arai G, Ueda K et al (2001) Physician’s attitudes towards disclosure of cancer diagnosis to elderly patients: a report from Tokyo, Japan. Arch Gerontol Geriatr 33:29–36PubMedCrossRefGoogle Scholar
  6. 6.
    Committee of Brain Tumor Registry of Japan (2009) Report of Brain Tumor Registry of Japan (1984–2000), 12th edn. Part III: result of treatments. Neurol Med Chir 49:S35–S96Google Scholar
  7. 7.
    McConigley R, Halkett G, Lobb E et al (2010) Caring for someone with high-grade glioma: a time of rapid change for caregivers. Palliat Med 24:473–479PubMedCrossRefGoogle Scholar
  8. 8.
    Edvardsson T, Ahlstrom G (2008) Being the next of kin of a person with a low-grade glioma. Psychooncology 17:584–591PubMedCrossRefGoogle Scholar
  9. 9.
    Faithfull S, Cook K, Lucas C (2005) Palliative care of patients with a primary malignant brain tumour: case review of service use and support provided. Palliat Med 19:545–550PubMedCrossRefGoogle Scholar
  10. 10.
    Janda M (2006) Supportive care needs of people with brain tumours and their carers. Support Care Cancer 14:1094–1103Google Scholar
  11. 11.
    Narita Y, Miyakita Y, Momota H et al (2009) A survey of neurosurgeons’ policies and attitudes regarding the disclosure of a diagnosis of glioma and the decision to pursue end-of-life care in glioma patients. No Shinkei Geka 37:973–981 (in Japanese)PubMedGoogle Scholar
  12. 12.
    Elwyn TS, Fetters MD, Gorenflo W et al (1998) Cancer disclosure in Japan: historical comparisons, current practices. Soc Sci Med 46:1151–1163PubMedCrossRefGoogle Scholar
  13. 13.
    Akabayashi A, Kai I, Takemura H et al (1999) Truth telling in the case of a pessimistic diagnosis in Japan. Lancet 354:1263PubMedCrossRefGoogle Scholar
  14. 14.
    Davies E, Clarke C, Hopkins A (1996) Malignant cerebral glioma. II. Perspectives of patients and relatives on the value of radiotherapy. BMJ 313:1512–1516Google Scholar
  15. 15.
    Salander P, Bergenheim T, Henriksson R (1996) The creation of protection and hope in patients with malignant brain tumours. Soc Sci Med 42:985–996PubMedCrossRefGoogle Scholar
  16. 16.
    Anderson SI, Taylor R, Whittle IR (1999) Mood disorders in patients after treatment for primary intracranial tumours. Br J Neurosurg 13:480–485PubMedGoogle Scholar
  17. 17.
    Davies E, Bannon M (1999) Opportunities for improving the quality of care in malignant cerebral glioma. J Neurol Neurosurg Psychiatry 66:693PubMedCrossRefGoogle Scholar
  18. 18.
    Giovagnoli AR (1999) Quality of life in patients with stable disease after surgery, radiotherapy, and chemotherapy for malignant brain tumour. J Neurol Neurosurg Psychiatry 67:358–363PubMedCrossRefGoogle Scholar
  19. 19.
    Davies E, Higginson IJ (2003) Communication, information and support for adults with malignant cerebral glioma: a systematic literature review. Support Care Cancer 11:21–29PubMedGoogle Scholar
  20. 20.
    Horikawa N, Yamazaki T, Sagawa M et al (1999) The disclosure of information to cancer patients and its relationship to their mental state in a consultation–liaison psychiatry setting in Japan. Gen Hosp Psychiatry 21:368–373Google Scholar
  21. 21.
    Morita S, Kobayashi M, Oba K et al (2006) Truth-telling to patients with advanced cancer: a comparison between cancer center, university hospitals, general city hospitals, and private general practitioners in Japan. Ann Cancer Res Therap 14:1–11Google Scholar
  22. 22.
    Seo M, Tamura K, Shijo H et al (2000) Telling the diagnosis to cancer patients in Japan: attitude and perception of patients, physicians and nurses. Palliat Med 14:105–110PubMedCrossRefGoogle Scholar
  23. 23.
    Elwyn TS, Fetters MD, Sasaki H et al (2002) Responsibility and cancer disclosure in Japan. Soc Sci Med 54:281–293PubMedCrossRefGoogle Scholar

Copyright information

© Japan Society of Clinical Oncology 2010

Authors and Affiliations

  • Fukuko Yamamoto
    • 1
  • Naoya Hashimoto
    • 1
  • Naoki Kagawa
    • 1
  • Yoshiko Okita
    • 1
    • 2
  • Yasuyoshi Chiba
    • 1
  • Noriyuki Kijima
    • 1
  • Manabu Kinoshita
    • 1
  • Kikuko Yoshizu
    • 3
  • Yasunori Fujimoto
    • 1
  • Kei Hirai
    • 4
  • Toshiki Yoshimine
    • 1
  1. 1.Department of NeurosurgeryOsaka University Graduate School of MedicineSuitaJapan
  2. 2.Department of NeurosurgeryNational Cancer Center HospitalTokyoJapan
  3. 3.Social Service DepartmentOsaka-University HospitalSuitaJapan
  4. 4.Communication Design CenterOsaka University School of Human SciencesToyonakaJapan

Personalised recommendations