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Japanese Journal of Clinical Oncology Advance Access published online on August 29, 2008
Japanese Journal of Clinical Oncology, doi:10.1093/jjco/hyn088
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© The Author (2008). Published by Oxford University Press. All rights reserved

Patient-Perceived Barriers to the Psychological Care of Japanese Patients with Lung Cancer{dagger}

Chiharu Endo1,2, Tatsuo Akechi1, Toru Okuyama1,2, Takashi Seto3, Masashi Kato2, Nobuhiko Seki3, Kenji Eguchi4, Takashi Hosaka2 and Toshiaki A. Furukawa1

1 Department of Psychiatry and Cognitive-Behavioral Medicine, Nagoya City University Graduate School of Medical Sciences, Nagoya
2 Course of Specialized Clinical Care, Psychiatry, Tokai University School of Medicine, Isehara, Kanagawa
3 Course of Internal Medicine, Medical Oncology, Tokai University School of Medicine, Isehara, Kanagawa
4 Oncology Center, Tokai University School of Medicine, Isehara, Kanagawa, Japan

For reprints and all correspondence: Tatsuo Akechi, Department of Psychiatry and Cognitive-Behavioral Medicine, Nagoya City University Graduate School of Medical Sciences, Mizuho-cho, Mizuho-ku, Nagoya 467-8601, Japan. E-mail: takechi{at}med.nagoya-cu.ac.jp

Received March 11, 2008; accepted July 30, 2008


   Abstract
TOP
 Abstract
INTRODUCTION
 PATIENTS AND METHODS
 RESULTS
 DISCUSSION
 Funding
 References
 
Objective: Although cancer patients frequently experience psychological distress, few cancer patients with psychological distress receive appropriate psychological care. The purpose of this study was to investigate the type and frequency of barriers to receive psychological care in patients with lung cancer.

Methods: Randomly selected ambulatory patients with lung cancer participated in the study. A self-administered questionnaire developed for this study was used to assess patient-perceived barriers toward psychological care provided in a medical context. Factor analysis indicated that this scale mapped four domains; emotional communication with their physicians, psychiatric consultation, psychotropic medication and counseling. The patients' demographic factors and levels of past and current psychological distress were also assessed to reveal potential factors associated with patient-perceived barriers to psychological care.

Results: Complete data were available from 100 patients. The mean (SD) age of the patients was 65.4 (9.8) years; more than 80% were male, and 77% suffered from advanced stage lung cancer. Lack of correct information and/or misunderstanding of treatments was found to be a major barrier for all four treatment options in common. Negative opinions toward the use of psychotropics were more frequent than those toward counseling. Patients with severe psychological distress were significantly more likely to report a reluctance to undergo psychiatric consultation than those without psychological distress.

Conclusions: Lung cancer patients commonly experienced concerns to utilize psychological care. Encouragement from physicians to discuss emotional aspects and the provision of sufficient information regarding psychological care may be useful to alleviate such concerns. Medical staffs should also be aware that severe psychological distress may itself be related to a reluctance to undergo psychiatric consultation.

Key Words: cancer • barrier • psychosocial treatment • communication • quality-of-life


   INTRODUCTION
TOP
 Abstract
 INTRODUCTION
PATIENTS AND METHODS
 RESULTS
 DISCUSSION
 Funding
 References
 
As a result of the life-threatening nature of cancer, cancer patients frequently experience psychological distress. Previous studies have indicated that ~10–40% of cancer patients suffer from psychological distress, including anxiety and depression. Moreover, psychological distress not only produces serious suffering, but also worsens quality-of-life, reduces adherence with anti-cancer treatment, can lead to suicide, is a psychological burden on the family and prolongs hospitalization (1).

Since effective management strategies for lessening a patient's psychological distress, including psychotherapy and pharmacotherapy (2), are widely available, cancer patients should be provided adequate psychological treatment. Nevertheless, many cancer patients with psychological distress do not receive appropriate psychosocial care (3).

Health-care barriers, the stigmatization of mentally ill people and the social context of psychiatric treatment have been enumerated as possible reasons, why cancer patients do not seek appropriate mental treatment (4–7). We previously found that cancer patients had more difficulty than the lay public in recognizing depression in a vignette, and that tendency to favor non-standard depression treatments such as physical activity than standard treatment was common in both cancer patients and the lay public (8).

Despite the dire need for further systematic research to facilitate effective strategies for delivering appropriate psychological care to cancer patients, few studies have been performed to clarify barriers to receiving psychosocial care in a medical context. Here, we investigated the type and frequency of barriers to receiving psychological care in patients with lung cancer.


   PATIENTS AND METHODS
TOP
 Abstract
 INTRODUCTION
 PATIENTS AND METHODS
RESULTS
 DISCUSSION
 Funding
 References
 
Subjects
Patients with lung cancer were randomly recruited at the outpatient clinic of the Respiratory Medicine Division of the Tokai University Hospital, Japan, between May 2004 and March 2005. The eligibility criteria were (i) an age of 18 years or older, (ii) patient knowledge of the cancer diagnosis, (iii) sufficient physical condition to complete the questionnaires and participate in the study and (iv) no severe mental or cognitive disorders that would prevent the completion of the questionnaires.

Procedure
The study protocol was reviewed and approved by the Institutional Review Board and the Ethics Committee of the Tokai University Hospital, Japan. This study was conducted in accordance with the Helsinki Declaration. Written informed consent was obtained from each subject before enrollment into this study.

After the consent was obtained, the participants were asked to complete several self-reported questionnaires to evaluate patient-perceived barriers to psychological care and associated clinical factors described below.

Instruments
Patient-Perceived Barriers to Psychological Care Questionnaire
We developed a 28-item ad hoc questionnaire to assess patient-perceived barriers to receiving psychological care in a medical context for the use in the current study because no appropriate instrument was available to evaluate the barriers of cancer patients to receiving psychosocial treatment. First, we developed a tentative 25-item questionnaire by conducting systematical review of existing studies that investigated psychiatric disorders, especially depression, and the associated barriers to patient care. Then, we conducted in-depth interviews with 10 cancer patients to evaluate and discuss the appropriateness of the questionnaire. As a result, 11 items were added to the questionnaire, and 36-item Patient-perceived Barriers to Psychological Care Questionnaire (BPCQ) was developed. Each item was rated using a five-point Likert scale [1 (do not agree at all) to 5 (agree very much)]. Higher scores indicated stronger patient-perceived barriers. Subsequently, we conducted a factor analysis to investigate the factor validity of the questionnaire. The number of factors was determined to be four using a scree plot. The results of a principal component factor analysis are shown in Table 1. Items that did not have a factor loading above 0.4 for any of the factors were deleted from the model. The four domains of patient-perceived barriers were as follows: (i) emotional communication with physicians (eight items; possible score ranging from 8 to 40), (ii) psychiatric consultation (nine items; possible score ranging from 9 to 45), (iii) use of psychotropic medicine (six items; possible score ranging from 6 to 35) and (iv) counseling (five items; possible score ranging from 5 to 25). The stress and RSQ values obtained in a multi-dimensional scaling analysis were 0.18 and 0.83, respectively. The Pearson's correlation coefficients among the subscales of the BPCQ were calculated to examine the construct validity of the BPCQ. The correlation coefficients between the counseling subscale and the psychiatric consultation subscale and between the counseling subscale and the psychotropic medicine subscale were greater than 0.40. The Cronbach's Alpha coefficients for each of the four domains indicated a good reliability (0.77 for emotional communication with physicians, 0.85 for psychiatric consultation, 0.86 for use of psychotropic medicine and 0.83 for counseling). These results confirmed the validity of this scale.


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  		Table 1. Factor loading matrix using principal component analysis with promax rotation (N = 100)

 
We previously conceptualized concerns about emotional disclosure to their physicians among cancer patients focusing on items regarding emotional communication with physicians in the current BPCQ dataset, and reported elsewhere (9). In the current study, we attempted to re-examine this issue in the context of whole psychological care provided in a medical setting. Since the purpose and the concepts were quite different, we took different statistical approach, and therefore, dealt with independent study from the previous published study.

To investigate factors associated with patient-perceived barriers to receiving care for psychological distress, the following factors were also evaluated.

Hospital Anxiety and Depression Scale
The Hospital Anxiety and Depression Scale (HADS) has been developed for the evaluation of anxiety and depression in medically ill patients and does not contain any questions regarding physical symptoms (10). The self-reported questionnaire consists of 14 items, and subjects are asked to rate how they felt during the previous week using a 4-point Likert scale. The HADS consists of an anxiety and depression subscale (0–21 points each), and the total score can range from 0 to 42. Higher scores indicate more severe depression and anxiety. The Japanese version of the HADS has been validated in a cancer population (11).

Major and Minor Depressive Episodes After Cancer Diagnosis
Whether a patient had experienced major or minor depressive episodes since receiving his or her cancer diagnosis was evaluated using the Structured Clinical Interview for DSM-IV Axis I Disorders (SCID) section (12). A diagnosis of major depression was made when a patient had exhibited five (or more) of the following symptoms during the same 2-week period and when the symptoms represented a change from previous functioning; at least one of the symptoms was required to be either a depressed mood or a loss of interest or pleasure in nearly all activities: (i) depressed mood, (ii) loss of interest or pleasure, (iii) significant weight loss or a decrease or increase in appetite, (iv) insomnia or hypersomnia, (v) psychomotor agitation or retardation, (vi) fatigue or loss of energy, (vii) feelings of worthlessness or excessive or inappropriate guilt, (viii) diminished ability to think or concentrate or indecisiveness, (ix) recurrent thoughts of death, recurrent suicidal ideation or attempted suicide. A diagnosis of minor depression was made when a patient had (i) or (ii) and a total of four or less of the aforementioned symptoms.

The SCID was conducted by the primary researcher (C.E.). The agreement between the primary researcher and a trained psychiatrist (T.O.) was sufficient. The kappa coefficients were 0.91 for major depression and 0.78 for minor depression.

Demographic and Medical Information
Demographic factors such as the patients' age, sex, education level, employment status, marital status and household size were obtained in a structured interview. The patients' medical charts were accessed to obtain medical information, including the date of cancer diagnosis, clinical stage, performance status (as defined by the Eastern Cooperative Oncology Group criteria) and past and current cancer treatments (operation for cancer, chemotherapy, radiotherapy and others).

Statistical Analysis
An unpaired t-test and Pearson's correlation analyses were conducted to investigate the association between bio-medical and psychosocial factors and patient-perceived barriers in the four domains, as appropriate. To identify the final associated factors, variables having a P value of less than 0.05 in the univariate analyses were entered into a multiple regression model. A P value of less than 0.05 was adopted as the significance level for all of the statistical analyses, and all the reported P values were two-tailed. All statistical procedures were performed using the SPSS statistical software program for Windows (version 12.0, SPSS Inc., Chicago, IL, USA).


   RESULTS
TOP
 Abstract
 INTRODUCTION
 PATIENTS AND METHODS
 RESULTS
DISCUSSION
 Funding
 References
 
Patient Characteristics
Among 119 lung cancer patients recruited, 15 were ineligible (physically too ill, 5; cognitive disturbance, 5; other reasons, 5), and four patients refused to participate. Finally, 100 patients participated in the study (Table 2). The mean (SD) age of these patients was 65.4 (9.8) years; >80% were male, 79% were married and 70% had received more than 9 years of education. Seventy-seven percent of the patients suffered from advanced lung cancer, and >90% had ECOG (the Eastern Cooperative Oncology Group's Scale) performance status of 0 or 1. Twenty-four percent of the patients had experienced major and/or minor depression after receiving their cancer diagnoses.


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  		Table 2. Demographic and disease-related patient characteristics (N = 100)

 
Frequency of Patient-Perceived Barriers to Psychological Care
The percentages of the patients, who endorsed each item on the BPCQ, are shown in Table 3. Each barrier was considered to be present when each item was rated as three or more on each Likert scale.


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  		Table 3. Frequency of patient-perceived barriers to psychological care (N = 100)

 
Among the items included in patient-perceived barriers to emotional communication with physicians subscale, ‘Emotional burden cannot be relieved by medication.’ was the most frequent (71%). The second most common barrier was ‘No attending physician has asked me about my emotional distress' (55%). On the other hand, only 18% of the cancer patients agreed that ‘The attending physicians are not interested in their patients' emotional distress'.

Regarding the patient-perceived barriers to psychiatric consultation items, ‘I wonder if I really need to visit the psychiatric clinic’ was the most common (47%). Forty-four percent of the cancer patients agreed with ‘I feel hesitant about visiting the psychiatric clinic because I am not sure what the clinic can actually do for me’. Only 11% of the cancer patients indicated that ‘My pride will be wounded if I have to visit the psychiatric clinic’ and ‘My family is discouraging me from visiting the psychiatric clinic’.

Four of the six items in patient-perceived barriers to the use of psychotropic medicine subscale were endorsed by >50% of the subjects. These items were as follows: ‘I wonder if I really need to use medicines that act on the mind’ (56%); ‘I feel concerned about the possibility of dependence and addiction if I have to take medicine that acts on the mind’ (54%); ‘I don't want to use any medicines that act on the mind because they are not a component of my primary treatment’ (50%) and ‘I feel concerned about the side effects of medicines that act on the mind’ (50%).

With regard to the ‘Patient-perceived barriers to counseling’, the item ‘In general, I do not like to speak about my emotions’ was the most common (32%). Only 18% of the patients indicated that ‘I am shy of speaking about my emotions during mental therapy (counseling)’ and 17% of them agreed with ‘I feel concerned about the side effects of mental therapy (counseling)’.

Univariate Analysis
The results of the Pearson's correlations between the HADS total score and the four factors of the BPCQ are shown in Table 4. No significant associations were found between the four domains of the barriers and the possible factors, except for a significant negative correlation between the HADS total score and barriers to psychiatric consultation.


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  		Table 4. Factors associated with barriers to receiving psychosocial care (N = 100)

 
Correlations between the four factors of the BPCQ and the patient characteristics data are also shown in Table 4. Among these, only one significant association and the patient-perceived barriers to emotional communication with physicians were significantly more likely among male cancer patients.

Thus, a multiple regression analysis was not conducted.


   DISCUSSION
TOP
 Abstract
 INTRODUCTION
 PATIENTS AND METHODS
 RESULTS
 DISCUSSION
Funding
 References
 
To the best of our knowledge, this is the first study to clarify the actual types and frequencies of patient-perceived barriers to psychological care provided in a medical context among cancer patients.

Cancer patients often feel various constraints to emotional communication with their physicians, although emotional disclosure by the patients themselves is a primary source of information for assessing the degree of psychological distress in the patients. These results were consistent with previous findings that patients are unlikely to bother their physicians (13). A previous study reported that educating patients with regard to the importance of using a simple pain assessment instrument to report the pain to their physician was useful for enhancing communication regarding pain between patients and physicians (14). Similarly, interventions using simple materials to express emotional distress may be useful to overcome this type of barrier. The inability of patients to communicate their psychological distress with physicians may be one of the other important barriers. One possible strategy to overcome this barrier may be for oncologists to ask simple routine questions regarding the patient's emotional status. At any rate, physicians should offer their patients opportunities to talk about their patients' psychological distress as part of their regular clinical practice.

A stigma against psychiatry has been repeatedly recognized in primary care, oncology and other medical settings (15,16). However, our results indicated that a lack of information regarding psychiatric services was a more frequent concern than stigma-related barriers. The provision of appropriate information regarding psychological distress or other psychiatric disorders commonly experienced by cancer patients and the available psychiatric treatments may be useful to mitigate patient-perceived barriers to psychosocial treatment.

Patient-perceived barriers to taking psychotropics included a lack of recognition regarding drug efficacy and concerns about dependence/addiction or adverse events. And barriers to pharmacotherapy were more prominent than those observed for other domains. As several papers have indicated that the provision of correct information on drugs can improve stigmas arising from a misunderstanding of pharmacotherapy (17–19), such interventions may be useful to resolve these barriers.

Patients reported barriers to counseling less frequently than those to pharmacotherapy, as consistent with the results of previous (4,20). The most frequently reported concern was a lack of knowledge regarding the indications for counseling. Recently, the importance of providing individualized care that meets the specific preferences or needs of each patient has been recognized (21,22). Provision and access to counseling services must be important when taking cancer patients' preference in the psychological care into account.

We found that the cancer patients with severe psychological distress were more reluctant to undergo psychiatric referral. In fact, Shimizu et al. (3) reported that only 28% of cancer inpatients with depression, as identified by nurses using screening instruments, actually accepted psychiatric referral. This hesitation might arise from pessimistic thinking influenced by the depressive mood.

We identified a gender difference in reporting hesitation to emotional communication with physicians. According to previous studies, men are less likely to seek out emotional support from the medical staff than women (23), and women are more comfortable discussing their emotions than men (24). Since gender differences can influence communication between patients and physicians, physicians should pay attention to these differences.

The present study has several limitations. First, as we did not confirm the reproducibility of the BPCQ, the reliability of the BPCQ may be limited. Second, this was a single-institution study that only included Japanese patients with lung cancer. Thus, appropriate attention to these limitations must be given before generalizing the present findings to other populations.

Despite the limitations of this study, the current findings suggested that patient-perceived barriers to psychosocial treatment among cancer patients may be associated with a lack of correct information and/or misunderstanding. Better communication between patients and physicians may be one possible solution to overcoming these barriers. Further investigation of patient-perceived barriers to psychological care among patients with cancers other than lung cancer is expected to yield additional valuable information.


   Funding
TOP
 Abstract
 INTRODUCTION
 PATIENTS AND METHODS
 RESULTS
 DISCUSSION
 Funding
References
 
This work was supported in part by Grants-in-Aid for Cancer Research and the Second-term Comprehensive 10-Year Strategy for Cancer Control from the Ministry of Health, Labor and Welfare and a Grant-in-Aid for Young Scientists (B) from the Japanese Ministry of Education, Culture, Sports, Science and Technology, Japan.

Conflict of interest statement

None declared.


   Footnotes
 
{dagger} A portion of this study's results has been published in the following article: Okuyama T, Endo C, Seto T, Kato M, Seki N, Akechi T, Furukawa TA, Eguchi K, Hosaka T. Cancer patients' reluctance to disclose their emotional distress to their physicians: a study of Japanese patients with lung cancer. Psychooncology 2008;17:460–5. Back


   References
TOP
 Abstract
 INTRODUCTION
 PATIENTS AND METHODS
 RESULTS
 DISCUSSION
 Funding
 References
 
1 Akechi T, Okuyama T, Akizuki N, Azuma H, Sagawa R, Furukawa TA, et al. Course of psychological distress and its predictors in advanced non-small cell lung cancer patients. Psychooncology (2006) 15:463–73.[CrossRef][Medline]

2 Aapro M, Cull A. Depression in breast cancer patients: the need for treatment. Ann Oncol (1999) 10:627–36.[Free Full Text]

3 Shimizu K, Akechi T, Okamura M, Oba A, Fujimori M, Akizuki N, et al. Usefulness of the nurse-assisted screening and psychiatric referral program. Cancer (2005) 103:1949–56.[CrossRef][Web of Science][Medline]

4 Britten N. Psychiatry, stigma, and resistance. Psychiatrists need to concentrate on understanding, not simply compliance. Br Med J (1998) 317:963–4.[Free Full Text]

5 Lloyd-Williams M, Friedman T, Rudd N. A survey of antidepressant prescribing in the terminally ill. Palliat Med (1999) 13:243–8.[Abstract/Free Full Text]

6 McDaniel JS, Musselman DL, Porter MR, Reed DA, Nemeroff CB. Depression in patients with cancer. Diagnosis, biology, and treatment. Arch Gen Psychiatry (1995) 52:89–99.[Abstract/Free Full Text]

7 Passik SD, Dugan W, McDonald MV, Rosenfeld B, Theobald DE, Edgerton S. Oncologists’ recognition of depression in their patients with cancer. J Clin Oncol (1998) 16:1594–600.[Abstract/Free Full Text]

8 Okuyama T, Nakane Y, Endo C, Seto T, Kato M, Seki N, et al. Mental health literacy in Japanese cancer patients: ability to recognize depression and preferences of treatments-comparison with Japanese lay public. Psychooncology (2006) 16:834–42.

9 Okuyama T, Endo C, Seto T, Kato M, Seki N, Akechi T, et al. Cancer patients' reluctance to disclose their emotional distress to their physicians: a study of Japanese patients with lung cancer. Psychooncology (2008) 17:460–5.[CrossRef][Medline]

10 Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand (1983) 67:361–70.[Web of Science][Medline]

11 Kugaya A, Akechi T, Okuyama T, Okamura H, Uchitomi Y. Screening for psychological distress in Japanese cancer patients. Jpn J Clin Oncol (1998) 28:333–8.[Abstract/Free Full Text]

12 First MB, Spitzer RL, Gibbon M, Williams JBM. Structured Clinical Interview for DSM-IV (SCID). (1997) American Psychiatric Press.

13 Leydon GM, Boulton M, Moynihan C, Jones A, Mossman J, Boudioni M, et al. Cancer patients' information needs and information seeking behaviour: in depth interview study. Br Med J (2000) 320:909–13.[Abstract/Free Full Text]

14 Ward SE, Hernandez L. Patient-related barriers to management of cancer pain in Puerto Rico. Pain (1994) 58:233–8.[CrossRef][Web of Science][Medline]

15 Holland JC. History of psycho-oncology: overcoming attitudinal and conceptual barriers. Psychosom Med (2002) 64:206–21.[Abstract/Free Full Text]

16 Angermeyer MC, Dietrich S. Public beliefs about and attitudes towards people with mental illness: a review of population studies. Acta Psychiatr Scand (2006) 113:163–79.[CrossRef][Web of Science][Medline]

17 Britten N. Psychiatry, stigma, and resistance Psychiatrists need to concentrate on understanding, not simply compliance. Br Med J (1998) 317:963–4.[Free Full Text]

18 Sartorius N. Stigma: what can psychiatrists do about it? Lancet (1998) 352:1058–9.[CrossRef][Web of Science][Medline]

19 Frank E. Enhancing patient outcomes: treatment adherence. J Clin Psychiatry (1997) 58(Suppl_1):11–4.

20 van Schaik DJ, Klijn AF, van Hout HP, van Marwijk HW, Beekman AT, de Haan M, et al. Patients' preferences in the treatment of depressive disorder in primary care. Gen Hosp Psychiatry (2004) 26:184–9.[CrossRef][Web of Science][Medline]

21 Sanson-Fisher R, Girgis A, Boyes A, Bonevski B, Burton L, Cook P. The unmet supportive care needs of patients with cancer. Supportive Care Review Group. Cancer (2000) 88:226–37.[CrossRef][Web of Science][Medline]

22 Cossich T, Schofield P, McLachlan SA. Validation of the cancer needs questionnaire (CNQ) short-form version in an ambulatory cancer setting. Qual Life Res (2004) 13:1225–33.[CrossRef][Web of Science][Medline]

23 Clarke SA, Booth L, Velikova G, Hewison J. Social support: gender differences in cancer patients in the United Kingdom. Cancer Nurs (2006) 29:66–72.[Web of Science][Medline]

24 Kring AM, Smith DA, Neale JM. Individual differences in dispositional expressiveness: development and validation of the Emotional Expressivity Scale. J Pers Soc Psychol (1994) 66:934–49.[CrossRef][Web of Science][Medline]


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