Psycho-Oncology Psycho-Oncology 23: 1300–1306 (2014) Published online 12 May 2014 in Wiley Online Library (wileyonlinelibrary.com). DOI: 10.1002/pon.3565
Family caregivers’ awareness of illness and attitude toward disclosure during chemotherapy for advanced cancer Soyeun Kim1, Youngjin Ko1, Sinyoung Kwon2, Dong-Yeop Shin3, Cheol Hyeon Kim4, Sung Hyun Yang3, Seong-Jin Cho5 and Im Il Na3* 1
Department of Family Medicine, Korea Cancer Center Hospital, Korea Institute of Radiological and Medical Sciences, Seoul, Korea Hospice Center, Korea Cancer Center Hospital, Korea Institute of Radiological and Medical Sciences, Seoul, Korea 3 Division of Hematology/Oncology, Department of Internal Medicine, Korea Cancer Center Hospital, Korea Institute of Radiological and Medical Sciences, Seoul, Korea 4 Division of Pulmonology, Department of Internal Medicine, Korea Cancer Center Hospital, Korea Institute of Radiological and Medical Sciences, Seoul, Korea 5 Department of Psychiatry, Korea Cancer Center Hospital, Korea Institute of Radiological and Medical Sciences, Seoul, Korea 2
*Correspondence to: Division of Hematology/ Oncology, Department of Internal Medicine, Korea Cancer Center Hospital, 75 Nowon-ro, Nowon-gu, Seoul 139-706, Korea. E-mail: [email protected]
Received: 3 February 2014 Revised: 8 April 2014 Accepted: 8 April 2014
Abstract Objective: We investigated family caregivers’ awareness of disease status and attitude toward disclosure of disease progression compared with those of cancer patients and explored the potential association between family caregivers’ attitudes and patients’ quality of life (QOL). Methods: We carried out a survey using self-administered questionnaires answered by pairs of family caregivers and patients diagnosed with advanced cancer (n = 136 pairs). To assess patients’ QOL, we used the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire. Results: More than half of family caregivers (54%) did not have full knowledge of patients’ advanced stage and goal of therapy. Positive attitudes toward disclosure were less common in family caregivers than in patients (59.4% and 85.4%, respectively; p < 0.01). The family caregivers’ positive attitudes toward disclosure were inversely associated with patients’ low functional scores (emotion [p = 0.04] and cognition [p = 0.02]) and high symptom scores (nausea and vomiting, pain, and insomnia; p < 0.05). However, in most QOL scales, patients’ attitudes were not significantly associated with functioning and symptom scores. Conclusions: A large portion of family caregivers may not know the patients’ exact status. This study also suggests that the family caregivers’ attitudes may differ from patients’ and may be associated with patients’ QOL. Copyright © 2014 John Wiley & Sons, Ltd.
Introduction In patients with advanced cancer, chemotherapy is usually delivered for survival benefit. However, the effect of chemotherapy remains limited as reported survival benefit is usually measured in months. Furthermore, patients undergoing palliative chemotherapy often suffer from toxic side effects. Despite the limited role of chemotherapy in the advanced stage, high prevalence of misunderstanding the goal of treatment and disease prognosis was reported in advance cancer patients [1]. Advanced cancer patients with inappropriate understanding of their illness are likely to choose aggressive care at end of life (EOL) [2–4]. A previous study showed that approximately 32–69% of patients have inappropriate understanding of the effectiveness of palliative chemotherapy [5]. Korean investigators also reported inaccurate awareness of incurable disease in approximately 50% of patients undergoing palliative chemotherapy [6,7]. In the terminal status of disease, high prevalence of positive attitude toward disclosure of their illness has been
Copyright © 2014 John Wiley & Sons, Ltd.
reported from patients, contrary to low prevalence of accurate awareness of patients in the early course of cancer treatment in advanced cancer [7]. To improve accurate awareness of incurable disease, one approach is to discuss the topic throughout the course of the disease [8,9]. Previous studies suggest the feasibility of early involvement of palliative care attempting to include education about the goal of treatment and understanding of the illness [5]. However, in the real world, many patients receive palliative care consultation late in the course of their disease [10,11]. In Asian countries such as China and Korea, whose cultures differ from those of Western countries, the family has been at the center of the medical decision model [12–16]. In a family-centered model, most family caregivers would be expected to have full awareness of patients’ incurable illness [17]. However, even in Western study, a significant number of family caregivers are not informed of the incurable illness, indicating relatively low prevalence of awareness in family caregivers [18]. In contrast to the abundance of studies on family caregivers’ attitudes toward disclosure
Family caregivers’ awareness and attitude toward disclosure for cancer
of incurable disease to patients [14,15,19,20], there is little research on their own awareness of incurable disease status while advanced cancer patients received palliative chemotherapy. In the family-centered model, the attitude of family caregivers could be a barrier to communication between patients and physicians. Previous Korean studies of family caregivers’ attitudes have suggested that family caregivers do not want the patient to be informed of the exact status of his or her disease and sometimes do not even want the patient be informed that malignant disease has been diagnosed [21]. This attitude toward truth telling concerning illness is more common in family caregivers than in patients [15]. Family caregivers may take on an attitude to avoid patients from becoming emotionally distressed or losing quality of life (QOL), which is not yet realized [15]. However, it is unknown whether current QOL of patients may be associated with family caregivers’ attitudes or not. It is important when discussing a palliative chemotherapy plan that the physician understands both family caregivers’ and patients’ awareness status about the incurable nature of the illness and their attitudes toward disclosure. We undertook the current study to investigate the awareness and attitude of family caregivers compared with those of patients receiving palliative chemotherapy. A potential association of family caregivers’ attitudes with patients’ QOL was also explored.
Participants and methods Study population The study was conducted at the Korea Cancer Center Hospital in Seoul, South Korea, between February 2011 and December 2012. Patients diagnosed with an advanced stage of cancer and their family caregivers were enrolled. ‘Advanced stage’ was defined as the stage during which the goal of chemotherapy was to prolong life or relieve symptoms. Family caregivers and patients were eligible for participation if the patients planned to undergo palliative chemotherapy for histologically confirmed metastatic or recurrent cancer and if their Eastern Cooperative Oncology Group performance status was not greater than 2. In this study, a primary caregiver was defined as a person who consistently takes the responsibility for the health or safety of patient. Primary caregiver was assigned by the patients among their family members. Participants were enrolled if they were capable of completing a questionnaire without assistance. If they understood the purpose of the study, we procured informed consent. Family caregivers and patients were ineligible for the study if they were diagnosed with hematologic malignancies and were not well enough to complete a questionnaire or if they were unable to understand the purpose of the study. Patients without caregivers were excluded. In most cases, the questionnaires were administered in an inpatient Copyright © 2014 John Wiley & Sons, Ltd.
1301
setting, and primary caregivers were spouses or other family members. All data were self-reported by participants.
Questionnaires and preparation Socio-demographic data including age, sex, educational level, employment status, and responsibility for medical expenses were obtained from questionnaires, and clinical data were obtained from a hospital data repository. The clinical data included in this study were primary cancer site, presence of metastases and recurrence, and Eastern Cooperative Oncology Group performance status. To assess awareness of patients’ illness and goals of therapy, we inquired of family caregivers and patients the following question: ‘What is the goal of patients’ present therapy?’ Responses of ‘for prolonging the survival period or symptom management’ were coded as ‘accurate awareness’, and responses of ‘to cure’ or ‘I don’t know’ as ‘inaccurate awareness’. Participants’ expectation of disease progression was assessed using the following question: ‘How do you expect the patient’s disease to progress after one year?’ Responses of ‘it remain the same or be worse’ were coded as ‘realistic expectation’, whereas responses of ‘it will be better or completely cured’, or any of the other answers, were coded as ‘unrealistic expectation’. To assess attitude toward disclosure of patients’ poor progression, we asked participants the following question: ‘Is it necessary for the patient to be informed when the disease would be progressed to be refractory to any treatment?’ We also inquired about advanced planning for EOL using the following question: ‘Would it be helpful for patients to discuss with a physician their EOL plan before their disease worsens?’ We coded responses of ‘desirable/helpful’ as ‘positive attitude’ and responses of ‘unhelpful’ or ‘I don’t know’ as ‘non-positive attitudes’. The response rates of questions about awareness of patients’ illness, expectation of disease progression, and attitude toward disclosure are not concordant with each question, resulting in missing data for 6% of responses on awareness of patients’ illness, 2% on expectation of disease progression, and 11% on attitude toward disclosure. We used the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) to assess patients’ QOL. A high score on the functional scale represents a high or healthy level of functioning, and a high score for global health status/QOL scale represents a high level of QOL. However, a high score on the symptom scale or item represents a high level of symptomatology or problems.
Statistical analysis The baseline demographics of participants (both family caregivers and patients) are described using frequency counts and percentages or median values. We used the Psycho-Oncology 23: 1300–1306 (2014) DOI: 10.1002/pon
S. Kim et al.
1302
Wilcoxon signed-rank test to evaluate whether family caregivers’ responses differed from those of patients. The association of participants’ awareness or attitude toward disclosure with the EORTC QLQ-C30 results was analyzed using a linear regression model. In order to control of type 1 error in the analysis of functional scales and symptom scales/items, the Benjamini–Hochberg procedure (q = 0.2) was used [22]. Differences were considered significant at p < 0.05. All statistical tests were performed using the statistical software package STATA, version 10 (StataCorp, College Station, TX, USA).
Approval This study received approval from the Korea Cancer Center Hospital’s institutional review board.
Results In total, 136 family caregiver/patient pairs participated in our study. The median age of family caregivers was 52 years. About 62.1% of family caregivers were spouses. Table 1 shows participants’ basal characteristics. Patients’ primary tumor sites were lung (38.2%), stomach (16.2%), colon and rectum (9.6%), and breast (8.8%).
Discrepancies between patients and family caregivers about awareness and attitude We analyzed the data on the awareness of advanced stage status and prognosis. The results are summarized in Table 2. Notably, less than half of family caregivers (45%) had accurate awareness of the patients’ illness. In addition, neither family caregivers nor patients (88.8% and 91.8%, respectively; p = 0.51) had a realistic expectation that the disease would be worse after 1 year. The proportion of family caregivers with realistic expectations did not statistically differ from that of patients. When we analyzed the difference in prevalence of attitudes toward disclosure of progressed illness between participants (Table 2), family caregivers less likely than patients had positive attitude toward disclosure (59.4% and 85.4%, respectively; p < 0.01). Despite a higher prevalence of inaccurate awareness (54.6% of family caregivers and 68.7% of patients), the majority of patients (85.4%) had a positive attitude toward disclosure of disease progression. In addition, most family caregivers and patients wanted to discuss EOL with the physician in advance (92.4% and 83.6%, respectively). When we analyzed the association between sociodemographic variables (age, sex, educational level, family income, religion, medical expenses per month, and primary cancer site) and participants’ awareness of illness and attitude toward disclosure, statistical significance was not observed (data not shown). Copyright © 2014 John Wiley & Sons, Ltd.
Table 1. Baseline characteristics Family caregivers
Patients N (%)
Characteristics Age (years) 52 (42, 60) Sex (male) 30 (23.6) Educational level High school or less 105 (78.4) College or over 29 (21.6) Family income Low 30 (22.4) Middle 103 (76.9) High 1 (0.7) Responsibility for medical expenses Patients 48 (36.9) Caregivers 69 (53.1) Others 13 (10.0) Medical expenses per month (Korean won)
Family caregivers’ awareness of illness and attitude toward disclosure during chemotherapy for advanced cancer Soyeun Kim1, Youngjin Ko1, Sinyoung Kwon2, Dong-Yeop Shin3, Cheol Hyeon Kim4, Sung Hyun Yang3, Seong-Jin Cho5 and Im Il Na3* 1
Department of Family Medicine, Korea Cancer Center Hospital, Korea Institute of Radiological and Medical Sciences, Seoul, Korea Hospice Center, Korea Cancer Center Hospital, Korea Institute of Radiological and Medical Sciences, Seoul, Korea 3 Division of Hematology/Oncology, Department of Internal Medicine, Korea Cancer Center Hospital, Korea Institute of Radiological and Medical Sciences, Seoul, Korea 4 Division of Pulmonology, Department of Internal Medicine, Korea Cancer Center Hospital, Korea Institute of Radiological and Medical Sciences, Seoul, Korea 5 Department of Psychiatry, Korea Cancer Center Hospital, Korea Institute of Radiological and Medical Sciences, Seoul, Korea 2
*Correspondence to: Division of Hematology/ Oncology, Department of Internal Medicine, Korea Cancer Center Hospital, 75 Nowon-ro, Nowon-gu, Seoul 139-706, Korea. E-mail: [email protected]
Received: 3 February 2014 Revised: 8 April 2014 Accepted: 8 April 2014
Abstract Objective: We investigated family caregivers’ awareness of disease status and attitude toward disclosure of disease progression compared with those of cancer patients and explored the potential association between family caregivers’ attitudes and patients’ quality of life (QOL). Methods: We carried out a survey using self-administered questionnaires answered by pairs of family caregivers and patients diagnosed with advanced cancer (n = 136 pairs). To assess patients’ QOL, we used the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire. Results: More than half of family caregivers (54%) did not have full knowledge of patients’ advanced stage and goal of therapy. Positive attitudes toward disclosure were less common in family caregivers than in patients (59.4% and 85.4%, respectively; p < 0.01). The family caregivers’ positive attitudes toward disclosure were inversely associated with patients’ low functional scores (emotion [p = 0.04] and cognition [p = 0.02]) and high symptom scores (nausea and vomiting, pain, and insomnia; p < 0.05). However, in most QOL scales, patients’ attitudes were not significantly associated with functioning and symptom scores. Conclusions: A large portion of family caregivers may not know the patients’ exact status. This study also suggests that the family caregivers’ attitudes may differ from patients’ and may be associated with patients’ QOL. Copyright © 2014 John Wiley & Sons, Ltd.
Introduction In patients with advanced cancer, chemotherapy is usually delivered for survival benefit. However, the effect of chemotherapy remains limited as reported survival benefit is usually measured in months. Furthermore, patients undergoing palliative chemotherapy often suffer from toxic side effects. Despite the limited role of chemotherapy in the advanced stage, high prevalence of misunderstanding the goal of treatment and disease prognosis was reported in advance cancer patients [1]. Advanced cancer patients with inappropriate understanding of their illness are likely to choose aggressive care at end of life (EOL) [2–4]. A previous study showed that approximately 32–69% of patients have inappropriate understanding of the effectiveness of palliative chemotherapy [5]. Korean investigators also reported inaccurate awareness of incurable disease in approximately 50% of patients undergoing palliative chemotherapy [6,7]. In the terminal status of disease, high prevalence of positive attitude toward disclosure of their illness has been
Copyright © 2014 John Wiley & Sons, Ltd.
reported from patients, contrary to low prevalence of accurate awareness of patients in the early course of cancer treatment in advanced cancer [7]. To improve accurate awareness of incurable disease, one approach is to discuss the topic throughout the course of the disease [8,9]. Previous studies suggest the feasibility of early involvement of palliative care attempting to include education about the goal of treatment and understanding of the illness [5]. However, in the real world, many patients receive palliative care consultation late in the course of their disease [10,11]. In Asian countries such as China and Korea, whose cultures differ from those of Western countries, the family has been at the center of the medical decision model [12–16]. In a family-centered model, most family caregivers would be expected to have full awareness of patients’ incurable illness [17]. However, even in Western study, a significant number of family caregivers are not informed of the incurable illness, indicating relatively low prevalence of awareness in family caregivers [18]. In contrast to the abundance of studies on family caregivers’ attitudes toward disclosure
Family caregivers’ awareness and attitude toward disclosure for cancer
of incurable disease to patients [14,15,19,20], there is little research on their own awareness of incurable disease status while advanced cancer patients received palliative chemotherapy. In the family-centered model, the attitude of family caregivers could be a barrier to communication between patients and physicians. Previous Korean studies of family caregivers’ attitudes have suggested that family caregivers do not want the patient to be informed of the exact status of his or her disease and sometimes do not even want the patient be informed that malignant disease has been diagnosed [21]. This attitude toward truth telling concerning illness is more common in family caregivers than in patients [15]. Family caregivers may take on an attitude to avoid patients from becoming emotionally distressed or losing quality of life (QOL), which is not yet realized [15]. However, it is unknown whether current QOL of patients may be associated with family caregivers’ attitudes or not. It is important when discussing a palliative chemotherapy plan that the physician understands both family caregivers’ and patients’ awareness status about the incurable nature of the illness and their attitudes toward disclosure. We undertook the current study to investigate the awareness and attitude of family caregivers compared with those of patients receiving palliative chemotherapy. A potential association of family caregivers’ attitudes with patients’ QOL was also explored.
Participants and methods Study population The study was conducted at the Korea Cancer Center Hospital in Seoul, South Korea, between February 2011 and December 2012. Patients diagnosed with an advanced stage of cancer and their family caregivers were enrolled. ‘Advanced stage’ was defined as the stage during which the goal of chemotherapy was to prolong life or relieve symptoms. Family caregivers and patients were eligible for participation if the patients planned to undergo palliative chemotherapy for histologically confirmed metastatic or recurrent cancer and if their Eastern Cooperative Oncology Group performance status was not greater than 2. In this study, a primary caregiver was defined as a person who consistently takes the responsibility for the health or safety of patient. Primary caregiver was assigned by the patients among their family members. Participants were enrolled if they were capable of completing a questionnaire without assistance. If they understood the purpose of the study, we procured informed consent. Family caregivers and patients were ineligible for the study if they were diagnosed with hematologic malignancies and were not well enough to complete a questionnaire or if they were unable to understand the purpose of the study. Patients without caregivers were excluded. In most cases, the questionnaires were administered in an inpatient Copyright © 2014 John Wiley & Sons, Ltd.
1301
setting, and primary caregivers were spouses or other family members. All data were self-reported by participants.
Questionnaires and preparation Socio-demographic data including age, sex, educational level, employment status, and responsibility for medical expenses were obtained from questionnaires, and clinical data were obtained from a hospital data repository. The clinical data included in this study were primary cancer site, presence of metastases and recurrence, and Eastern Cooperative Oncology Group performance status. To assess awareness of patients’ illness and goals of therapy, we inquired of family caregivers and patients the following question: ‘What is the goal of patients’ present therapy?’ Responses of ‘for prolonging the survival period or symptom management’ were coded as ‘accurate awareness’, and responses of ‘to cure’ or ‘I don’t know’ as ‘inaccurate awareness’. Participants’ expectation of disease progression was assessed using the following question: ‘How do you expect the patient’s disease to progress after one year?’ Responses of ‘it remain the same or be worse’ were coded as ‘realistic expectation’, whereas responses of ‘it will be better or completely cured’, or any of the other answers, were coded as ‘unrealistic expectation’. To assess attitude toward disclosure of patients’ poor progression, we asked participants the following question: ‘Is it necessary for the patient to be informed when the disease would be progressed to be refractory to any treatment?’ We also inquired about advanced planning for EOL using the following question: ‘Would it be helpful for patients to discuss with a physician their EOL plan before their disease worsens?’ We coded responses of ‘desirable/helpful’ as ‘positive attitude’ and responses of ‘unhelpful’ or ‘I don’t know’ as ‘non-positive attitudes’. The response rates of questions about awareness of patients’ illness, expectation of disease progression, and attitude toward disclosure are not concordant with each question, resulting in missing data for 6% of responses on awareness of patients’ illness, 2% on expectation of disease progression, and 11% on attitude toward disclosure. We used the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) to assess patients’ QOL. A high score on the functional scale represents a high or healthy level of functioning, and a high score for global health status/QOL scale represents a high level of QOL. However, a high score on the symptom scale or item represents a high level of symptomatology or problems.
Statistical analysis The baseline demographics of participants (both family caregivers and patients) are described using frequency counts and percentages or median values. We used the Psycho-Oncology 23: 1300–1306 (2014) DOI: 10.1002/pon
S. Kim et al.
1302
Wilcoxon signed-rank test to evaluate whether family caregivers’ responses differed from those of patients. The association of participants’ awareness or attitude toward disclosure with the EORTC QLQ-C30 results was analyzed using a linear regression model. In order to control of type 1 error in the analysis of functional scales and symptom scales/items, the Benjamini–Hochberg procedure (q = 0.2) was used [22]. Differences were considered significant at p < 0.05. All statistical tests were performed using the statistical software package STATA, version 10 (StataCorp, College Station, TX, USA).
Approval This study received approval from the Korea Cancer Center Hospital’s institutional review board.
Results In total, 136 family caregiver/patient pairs participated in our study. The median age of family caregivers was 52 years. About 62.1% of family caregivers were spouses. Table 1 shows participants’ basal characteristics. Patients’ primary tumor sites were lung (38.2%), stomach (16.2%), colon and rectum (9.6%), and breast (8.8%).
Discrepancies between patients and family caregivers about awareness and attitude We analyzed the data on the awareness of advanced stage status and prognosis. The results are summarized in Table 2. Notably, less than half of family caregivers (45%) had accurate awareness of the patients’ illness. In addition, neither family caregivers nor patients (88.8% and 91.8%, respectively; p = 0.51) had a realistic expectation that the disease would be worse after 1 year. The proportion of family caregivers with realistic expectations did not statistically differ from that of patients. When we analyzed the difference in prevalence of attitudes toward disclosure of progressed illness between participants (Table 2), family caregivers less likely than patients had positive attitude toward disclosure (59.4% and 85.4%, respectively; p < 0.01). Despite a higher prevalence of inaccurate awareness (54.6% of family caregivers and 68.7% of patients), the majority of patients (85.4%) had a positive attitude toward disclosure of disease progression. In addition, most family caregivers and patients wanted to discuss EOL with the physician in advance (92.4% and 83.6%, respectively). When we analyzed the association between sociodemographic variables (age, sex, educational level, family income, religion, medical expenses per month, and primary cancer site) and participants’ awareness of illness and attitude toward disclosure, statistical significance was not observed (data not shown). Copyright © 2014 John Wiley & Sons, Ltd.
Table 1. Baseline characteristics Family caregivers
Patients N (%)
Characteristics Age (years) 52 (42, 60) Sex (male) 30 (23.6) Educational level High school or less 105 (78.4) College or over 29 (21.6) Family income Low 30 (22.4) Middle 103 (76.9) High 1 (0.7) Responsibility for medical expenses Patients 48 (36.9) Caregivers 69 (53.1) Others 13 (10.0) Medical expenses per month (Korean won)
