Evaluate a Qualitative Study

ORIGINAL ARTICLE

Impact of family caregivers’ awareness of the prognosis on their quality of life/depression and those of patients with advanced cancer: a prospective cohort study

EunKyo Kang1,2 & Bhumsuk Keam3 & Na-Ri Lee4 & Jung Hun Kang5 & Yu Jung Kim6 & Hyun-Jeong Shim7 & Kyung Hae Jung8 & Su-Jin Koh9 & Hyewon Ryu10 & Jihye Lee11 & Jiyeon Choo11 & Shin Hye Yoo3 & Young Ho Yun1,11

Received: 12 December 2019 /Accepted: 20 April 2020 # Springer-Verlag GmbH Germany, part of Springer Nature 2020

Abstract Purpose A caregiver’s prognostic awareness can affect clinical decisions for the patient. The purpose of this study was to examine the impact of family caregivers’ prognostic awareness on the quality of life (QOL) and emotional state of both patients with advanced cancer and their caregivers. Methods This prospective cohort study was conducted from December of 2016 to January of 2018. A total of 159 patients with advanced cancer and an equal number of caregivers participated. The investigation tools used include the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-C15-Palliative, the McGill Quality of Life Questionnaire, and the Patient Health Questionnaire-9, and evaluation was performed at baseline, 3 months, and 6 months. Covariance analysis with a general linear modeling was used to compare changes in quality of life scores according to the caregivers’ awareness of the prognosis. Results Mean patient overall QOL score increased in the group of caregivers who were aware of prognosis and decreased in the caregivers who were not aware of the prognosis (p = 0.018). The changes over time in the patients’ QOL scores associated with symptoms improved with caregiver awareness (pain, p = 0.017; dyspnea, p = 0.048; appetite loss, p = 0.045). The percentage of depressed patients was smaller after 3 months in the group with caregivers aware of the prognosis (baseline to 3 months p = 0.028). Caregivers who did not understand their patients’ prognosis exhibited better existential well-being (p = 0.036), and the incidence of depression was lower in this group at 3 months (p = 0.024). Conclusion Caregivers’ prognostic awareness may improve the quality of life and mood in patients with advanced cancer; however, this awareness may harm the quality of life and mood of the caregivers. These results may aid in developing in- depth interventions regarding prognosis for both patients and their caregivers.

Keywords Advanced cancer patients . Caregiver’s awareness . Depression . Prognostic awareness . Quality of life

* Young Ho Yun [email protected]; [email protected]

1 Department of Family Medicine, Seoul National University Hospital, Seoul, South Korea

2 Institute for Public Health and Medical Service, Seoul National University Hospital, Seoul, South Korea

3 Department of Internal Medicine, Seoul National University Hospital, Seoul, South Korea

4 Department of Internal Medicine, Chonbuk National University Medical School, Jeonju, South Korea

5 Department of Internal Medicine, Gyeongsang University Hospital, Jinju, South Korea

6 Department of Internal Medicine, Seoul National University Bundang Hospital, Seoul National University College of Medicine, Seongnam, South Korea

7 Department of Internal Medicine, Chonnam National University Medical School, Gwangju, South Korea

8 Department of Oncology, Asan Medical Center, University of Ulsan College of Medicine, Seoul, South Korea

9 Department of Hematology and Oncology, Ulsan University Hospital, Ulsan University College of Medicine, Ulsan, South Korea

10 Internal Medicine, Chungnam National University College of Medicine, Chungnam, South Korea

11 Department of Medical Informatics, Seoul National University College of Medicine, 103 Daehak-ro, Jongno-gu, Seoul, South Korea

https://doi.org/10.1007/s00520-020-05489-8

/ Published online: 6 May 2020

Supportive Care in Cancer (2021) 29:397–407

Introduction

As the life expectancy of patients with advanced cancer in- creases [1, 2], the role of caregivers who provide comprehen- sive support is becoming more important. Family caregivers deal with the complications of long-term management of can- cer treatment [3], which can impact the quality of life of the patients as well as those who care for them. Supporting cancer patients is associated with considerable physical, mental, and financial burdens for the caregiver [4, 5].

The role of caregivers in treatment decisions and the long- term care of the patient are becoming increasingly important [6]. Studies indicate that caregivers of cancer patients with poor prognosis desire more prognostic information and feel that dis- closure of information about incurable cancer is very important [7, 8]. Caregivers aware of a patient’s incurable illness might want to prevent the patient from learning about their prognosis [9]. In addition, the patient’s caregiver may participate in the discussions between the patient and their physician, or assist the patient with accepting a poor prognosis [10, 11]. Patients and caregivers may differ in their treatment preferences and deci- sions about end-of-life care, which may be influenced by the awareness that the cancer is incurable [12, 13]. Furthermore, according to previous studies, the caregiver’s perception of an incurable disease may affect the intimacy between patient and caregiver, leading to distress [14]. Because of these findings, disclosure of the prognosis to caregivers remains controversial.

Studies have found that patients with advanced cancer who are aware of their prognosis are more likely to experience decreased quality of life and increased depression [15–18], which are both associated with poor survival [17]. On the other hand, research suggests that disclosing prognosis to pa- tients reduced their stress and promoted psychological and emotional well-being [19–21]. Few studies are investigating the impact of caregivers’ awareness of prognosis on their quality of life, however, or how this awareness affects patient quality of life [18].

Considering the important role of the family in managing cancer long-term, it is important to investigate the effect of the caregivers’ awareness of prognosis on the quality of life and emotional state of patients. Additionally, a family member’s cancer diagnosis may lead to depression and impaired quality of life for caregivers [22, 23]. It is also important to understand the impact of caregivers’ prognostic awareness on their qual- ity of life and emotional state.

The purpose of this study was to investigate the effect of caregivers’ prognostic awareness on their quality of life/ emotional state and the QOL of the patients. Considering the impact of prognostic awareness on the quality of life and emo- tional state of caregivers and patients [10, 24, 25], the results of this study may help identify the effects of caregivers’ lack of prognostic awareness on both the caregivers and patients with incurable cancer.

Material and methods

Study design

This prospective Korean nationwide cohort study was con- ducted across three periods between December 17, 2016, and August 17, 2018. Patients and their caregivers who were (1) diagnosed with advanced cancer and (2) aged ≥ 19 years were eligible for inclusion in this study. Physicians evaluated the patients’ understanding of the purpose of the study and enrolled only those with insight into their disease. The physi- cian enrolled patients only if they had advanced cancer and if their life expectancy was determined to be less than 1 year. All patients and caregivers understood the purpose and methods of the study and provided informed consent to participate, and the institutional review boards of all 21 participating hospitals approved the protocol. This trial is registered with ClinicalTrials.gov (NCT03222258).

Data collection

The patients’ primary cancer site, Eastern Cooperative Oncology Group (ECOG) performance status, and therapeutic status were collected through a medical record review. The therapeutic status was classified as follows: (1) receiving stan- dard chemotherapy, (2) at an intermittent stage of standard che- motherapy, (3) receiving additional chemotherapy following standard chemotherapy, and (4) at the stage of any chemother- apy yet expected to survive more than 6 months but for less than 1 year. Demographic data and information regarding awareness of prognosis, quality of life, and emotional status were obtained through patient interviews. For data uniformity, research nurses conducted face-to-face patient interviews. The questionnaires required approximately 20 min to complete. The patients and their caregivers were followed up at 3 months and 6 months through direct meetings with the research assistants in the inpatient facility or outpatient clinic. If the patient or care- giver was lost to follow-up (Fig. 1), we checked with the phy- sician regarding the patient’s survival. In Korea, patients’ sur- vival or death data are managed by both the National Health Insurance Service and the National Statistical Office, so physi- cians can verify patient survival. If the patient was alive but not contacted, they were classified as “unable to contact.”

Measurements

The demographic information included age, sex, educational status, marital status, religion, and place of residence. The patients’ and caregivers’ awareness of the prognosis was assessed through self-administered questionnaires at baseline. The patients and their caregivers were asked the following question: “Do you think your illness (or the patient’s illness) will be cured?” They responded by selecting one of the

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following options: (1) my (or the patient’s) cancer will be cured, (2) my (or the patient’s) cancer might be cured if the treatments are effective, (3) my (or the patient’s) cancer cannot be cured, but treatment inhibits cancer progression and ex- tends survival, (4) my (or the patient’s) cancer cannot be cured, and cancer treatment is no longer effective, or (5) I do not know [26]. Awareness of the prognosis was defined as “present” for response options 3 and 4 and “absent” for re- sponse options 1, 2, and 5.

Quality of life was measured using two indices: the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-C15-Palliative (EORTC QLQ-C15-PAL) [27] and the McGill Quality of Life (MQOL) questionnaire [28]. We assessed patients with both the EORTC QLQ-C15-PAL and MQOL questionnaires and assessed the caregivers with the MQOL questionnaire only. The EORTC QLQ-C15-PAL is a questionnaire that in- cludes only 15 of the 30 items in the EORTC QLQ-C30 ques- tionnaire for palliative care. The EORTC QLQ-C15-PAL as- sesses physical and emotional functioning, overall quality of life, and seven symptoms related to quality of life (i.e., fatigue, nausea/vomiting, dyspnea, pain, insomnia, appetite loss, and constipation). High scores related to functioning and overall quality of life indicate a better quality of life. High symptom scores indicate increased severity of symptoms.

The MQOL is a multidimensional questionnaire that as- sesses quality of life. In this study, we measured the quality of life associated with two aspects of existential well-being and social support. High scores in the MQOL questionnaire

represent a higher quality of life. Cronbach’s alpha coefficients of the EORTC QLQ-C15-PAL for multi-item scales ranged from 0.67 (pain) to 0.85 (emotional functioning) [29]. In this study, the Cronbach’s alpha coefficients of the EORTC QLQ- C15-PAL for multi-item scales ranged from 0.84 to 0.87. The Korean version of the MQOL questionnaire presented a moderate-to-high internal consistency (Cronbach’s alpha, 0.62–0.90) and a good concurrent validity [30]. The Cronbach’s alpha coefficients of the MQOL questionnaire ranged from 0.73 to 0.84 (patients) and 0.67 to 0.80 (caregivers) in this study.

The emotional state of patients and caregivers was assessed through the Patient Health Questionnaire-9 (PHQ-9) [31]. Consistent with the Diagnostic and Statistical Manual of Mental Disorders (5th Edition), the PHQ-9 is a self- reporting questionnaire for the diagnosis of depression [32]. Participants with a PHQ-9 score of ≥ 10 were diagnosed with depression. The Korean version of the PHQ-9 questionnaire showed a high internal consistency (Cronbach’s alpha was 0.852) [33]. In this study, the prevalence of depression was presented as the percentage of depressed participants. The Cronbach’s alpha coefficients of the PHQ-9 questionnaire were 0.90 (patients) and 0.91 (caregivers).

Statistical analyses

The items in the MQOL questionnaire were scored using a scale from 0 to 10. According to the EORTC scoring manual, the items in the EORTC questionnaire were scored using a

Fig. 1 The flow of participants through each stage of the study

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linear scale from 0 to 100 [27]. The primary outcome of this study was a change in patients’ quality of life according to the caregivers’ prognostic awareness. Covariance analysis with general linear modeling was used to compare changes in qual- ity of life scores between the groups. To analyze how caregiv- er awareness affects a patient’s quality of life and depression, a multivariate general linear model (GLM) was fit using an unstructured covariance matrix for the outcome variables (i.e., quality of life × time points) with role (i.e., patient/care- giver) as the within-subjects factor and type of tumor, baseline score, and patients’ ECOG performance as the covariates. The baseline score and ECOG performance status were adjusted. Changes from baseline to 3 months and changes over time were measured (as the difference in time effect [awareness × time] considering the correlation of repeated observa- tions for each participant). In the EORTC questionnaire, one item was missing from the questionnaire of two pa- tients at baseline, and the missing items were handled as recommended in the scoring manual. A multiple imputed data set was produced—excluding patients who expired— via a multiple imputation method. This study used regres- sion methods and propensity scores for imputation. Imputed values were used for covariance analysis. We used the STATA version 14.2 (STATA, College Station, TX) software for all statistical analyses. We considered a two-sided P value < 0.05 as significant.

Results

Study participants

The demographic characteristics of the participants are shown in Table 1. Of the 159 caregivers who responded, 101 (63.5%) were aware of the patients’ prognosis and 58 (36.5%) were unaware. The majority of the caregivers were female, whereas the majority of the patients were male. The mean age of the patients was higher than that of the caregivers; however, the age difference between the aware and unaware groups was not statistically significant. Both the patients and the caregivers had an average level of education (below a high school graduate). More caregivers than patients were employed. Notably, there was no signif- icant difference between the two groups in educational sta- tus, occupation, religion, or marital status. According to the awareness of patient caregivers, there was no signifi- cant difference in monthly income and area of residence. Lung cancer was the most common primary cancer report- ed in both groups. In terms of ECOG performance status, ECOG 1 was the most commonly reported grade (48.3%) in the aware group. However, in the unaware group, ECOG 3 was the most commonly observed grade (49.5%). The

difference between the groups in ECOG status was signif- icant (p = 0.004).

Changes in the quality of life of patients over time (EORTC QLQ-C15-PAL)

There was no statistically significant difference in the change of quality of life scores related to physical and emotional functioning between the aware and unaware caregiver groups (Fig. 2). However, the mean overall quality of life score for patients increased from 50.5 to 58.3 in the group with care- givers who were aware of the prognosis, whereas it decreased from 55.4 to 53.7 in the group of caregivers with no aware- ness. There was a significant difference between the groups over time (p = 0.018). There were significant differences be- tween the groups in changes over time in the quality of life scores related to symptoms. Regarding pain, the mean score decreased from 32.6 to 24.5 in the aware group, whereas it increased from 26.9 to 32.9 in the unaware group (from base- line to 3 months p = 0.035, changes over time p = 0.017). For dyspnea, the score decreased from 25.8 to 15.4 in the aware- ness group and the unaware group showed limited change (from 28.1 to 28.0) (changes over time p = 0.048). The mean score related to appetite loss decreased in the aware group from 45.7 to 36.8, whereas the mean score reported in the unaware group increased from 34.8 to 39.6 (from baseline to 3 months p = 0.033, over time p = 0.045).

Changes in the quality of life of patients and caregivers over time (MQOL)

Between baseline and 6 months, the patients’ existential well- being mean score significantly increased in the group with no awareness, whereas it significantly decreased in the group with awareness (changes over time p = 0.031; Fig. 3a). The changes in the mean MQOL existential well-being scores were inversely correlated with a caregiver’s prognostic aware- ness compared with the EORTC QLQ-C15-PAL score. We performed further analyses in four groups, including patient awareness (Appendix, Fig. 5). The results revealed that QOL significantly decreased when both the caregiver and patient were aware of the prognosis, compared with their QOL when both the caregiver and patient remained unaware of the prog- nosis (over time p = 0.048). The difference in the social sup- port scores between the two groups was not significant. Caregivers who were unaware of the patients’ prognosis had better quality of life scores over time, in terms of existential well-being, as compared with caregivers who were aware of the illness (over time p = 0.036; Fig. 3c). Regarding social support, the scores of both groups decreased over time, but there was no significant difference between the groups.

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Changes in the proportion of depressed patients and caregivers

The proportion of depressed patients in the aware patient group decreased from 42.9 to 24.1% after 3 months, and the mean score was 37.4% after 6 months. The proportion of depressed patients in the unaware patient group decreased from 33.4 to 28.5% (at 3 months) and 31.7% (at 6 months). The difference between the two groups was significant from baseline to 3 months (p = 0.028; Fig. 4a). In the aware care- giver group, the proportion of depressed caregivers increased from 19.6 (baseline) to 56.6% (3 months) and 70.1% (6 months). In the unaware caregiver group, the proportion of depressed caregivers increased from 32.7 (baseline) to 45.5% (3 months) and 61.9% (6 months). The changes over time demonstrated significant differences between the two

caregiver groups (from baseline to 3 months p = 0.003, over time p = 0.024; Fig. 4b).

Discussion

The results of this study indicate that caregivers’ prognostic awareness is associated with improvements in patient quality of life, and when caregivers are not aware of the prognosis, there is an associated decrease or lack of significant change in pa- tients’ quality of life. However, the quality of life of caregivers tended to decrease with increased awareness of their patients’ incurable disease. In the aware caregiver group, the patients’ depression improved, but the caregivers’ depression worsened.

Previous research has shown that caregivers’ positive atti- tudes about disclosure of disease prognosis were inversely

Table 1 Sociodemographic characteristics of the participantsa

Caregivers Patients

Characteristic Without prognostic awareness (N = 58)

With prognostic awareness (N = 101)

Without prognostic awareness (N = 58)

With prognostic awareness (N = 101)

N (%)

Sex Male 12 (20.7) 35 (34.6) 42 (72.4) 61 (60.4)

Female 46 (79.3) 66 (65.4) 16 (27.6) 40 (39.6)

Age (years) Mean (SD) 54.4 (12.5) 51.3 (14.2) 59.9 (11.0) 63.7 (9.9)

Educational status ≤ High school 44 (75.9) 60 (60.0) 46 (79.3) 81 (80.2) College or

higher 14 (24.1) 40 (40.0) 12 (20.7) 20 (19.8)

Job status Employed 35 (60.3) 73 (73.0) 10 (17.2) 8 (7.9)

Unemployed 23 (39.7) 27 (27.0) 48 (82.8) 93 (92.1)

Religion Yes 17 (29.3) 39 (39.0) 39 (67.2) 58 (57.4)

No 41 (70.7) 61 (61.0) 19 (32.8) 43 (42.6)

Marital status Not married 8 (13.8) 15 (15.0) 8 (13.8) 17 (16.8)

Married 50 (86.2) 85 (85.0) 50 (86.2) 84 (83.2)

Monthly income (USD)

< 2000 30 (53.6) 45 (45.5) 32 (58.2) 64 (64.6)

2000–3999 20 (35.7) 25 (25.2) 16 (29.1) 17 (17.2)

≥ 4000 6 (10.7) 29 (29.3) 7 (12.7) 18 (18.2) Residence Rural/suburban 40 (69.0) 70 (70.0) 14 (24.1) 25 (24.8)

Urban 18 (31.0) 30 (30.0) 44 (75.9) 76 (75.2)

Primary cancer site Breast 13 (22.4) 8 (8.0)

Colon 3 (5.2) 13 (13.0)

Stomach 7 (12.1) 21 (21.0)

Pancreato-biliary 8 (13.8) 17 (17.0)

Blood 2 (3.5) 8 (8.0)

Lung 25 (43.1) 33 (33.0)

ECOG status 0 8 (13.8) 2 (2.0)

1 28 (48.3) 37 (36.6)

2 4 (6.9) 7 (6.9)

3 18 (31.0) 50 (49.5)

4 0 (0.0) 5 (5.0)

a In some factors, there may be a missing value due to nonresponse of respondents

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a Physical Functioning b Emotional Functioning

c Overall quality of life d Fatigue

e Nausea/Vomiting f Pain

g Dyspnea h Insomnia

i Appetite loss j Constipation

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associated with low quality of life scores in their patients [34]. However, that cross-sectional study did not examine the care- givers’ actual awareness of the prognosis. In this study, the quality of life scores improved in patients whose caregivers were aware of their prognosis. Moreover, the prevalence of depression tended to decrease in the short term in patients whose caregivers were aware of the prognosis.

Although previous studies examined the effect of patient awareness on the quality of life and depression of patients and caregivers [35, 36], no studies have yet investigated the effect of caregivers’ prognostic awareness on quality of life and depression among patients and caregivers. Previous studies have shown that the caregiver’s perception of prognosis was associated with patient symptoms and quality of life [37],

hospital readmission [38], and survival [39–41]. In addition, caregiver depression or poor health status affected the self- reported quality of patient care [42]. Although the mean MQOL score of patients was inversely correlated with the awareness of caregivers and the EORTC QLQ-C15-PAL score was not, in the analysis that included patient perception, patient awareness may have influenced quality of life (Appendix, Fig. 5). Based on these results, physicians should disclose information about the illness and actively communi- cate with the families of those patients with advanced cancer.

Caregivers may be more vulnerable to depression or anxi- ety than patients [43]. The negative impact of the burden as- sociated with caregiving on caregivers’ physical and psycho- logical health and quality of life has been well recognized [44, 45]. Many caregivers want sufficient information on their pa- tient’s illness; however, the effects of this knowledge have not been adequately investigated [43, 46, 47]. In this study, in- creased caregiver prognostic awareness was associated with decreased emotional state and quality of life scores for the caregivers. These findings highlight the need to investigate the negative effects of prognostic awareness of incurable

a Existential Well-being (Patients) b Social support (Patients)

c Existential Well-being (Family caregivers) d Social support (Family caregivers)

Fig. 3 Least square means of quality of life (McGill Quality of Life Questionnaire; the McGill Quality of Life Questionnaire (MQOL) uses existential well-being, and social support) according to family caregiver’s awareness, at all three time points. a, b Patient’s quality of life. c, d

Family caregiver’s quality of life (adjusting for the baseline score and ECOG status). All of the response categories are based on numerical scales from 0 to 10, with verbal anchors at the beginning and end of the scales

�Fig. 2 Least square means of quality of life (EORTC QLQ-C15-PAL; the items of the EORTC questionnaire were scored using a scale from 0 to 100) according to family caregiver’s awareness of the prognosis at base- line, 3 months, and 6 months (adjusting for the baseline score and ECOG status). a Physical functioning. b Emotional functioning. c Overall quality of life. d Fatigue. e Nausea/vomiting. f Pain.g Dyspnea. h Insomnia. i Appetite loss. j Constipation

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illness on the caregiver’s emotional state and quality of life. Tailored interventions should be developed based on this ev- idence. Caregivers’ awareness may have a positive impact on patients’ quality of life and emotional state. Therefore, disclo- sure of the prognosis to caregivers through appropriate inter- ventions is important for both caregivers and patients.

The methodological advantages of this study are its pro- spective design and nationwide cohort. However, this study exclusively recruited patients from hospitals in Korea. Therefore, our findings may not be generalizable to diverse populations in different geographical areas. Using validated questionnaires, we were able to avoid information bias. However, selection bias in the individuals who participated in the study is possible. However, since there are similar sociodemographic and clinical characteristics among those who participated in the study and those who did not, a strong selection bias seems unlikely. Another potential limitation of this study is its relatively short follow-up period (6 months). Further studies are warranted to assess the long-term effects associated with caregivers’ awareness. High follow-up loss rates could also be a limitation of this study. We performed multiple imputations during data analysis (17 participant’s da- ta at 3-month follow-up analysis and 34 participant’s data at 6- month follow-up analysis). As this study was conducted on advanced cancer patients, the follow-up loss rate was high. Although we made many efforts to follow-up with patients and caregivers, many subjects experienced various end-of- life difficulties, resulting in follow-up losses that may bias the results.

In conclusion, the results of this prospective cohort study involving patients with advanced cancer and their caretakers indicate that caregivers’ prognostic awareness was linked to improved patient quality of life. At the same time, the quality of life of the caregivers aware of the prognosis decreased. In

addition, caregivers’ prognostic awareness was associated with improved rates of depression in the patients, but it was also associated with a deterioration in the caregivers’ emotion- al state. These results may help predict the impact of prognos- tic disclosure and develop effective interventions regarding incurable illnesses for both patients and their caregivers.

Author contributions All authors contributed to the study conception and design. Material preparation and data acquisition were performed by Bhumsuk Keam, Na-Ri Lee, Jung Hun Kang, Yu Jung Kim, Hyun- Jeong Shim, Kyung Hae Jung, Su-Jin Koh, Hyewon Ryu, Jihye Lee, Jiyeon Choo, Shin Hye Yoo, and Young Ho Yun. Statistical analysis was performed by EunKyo Kang and Young Ho Yun. Interpretation of data and analysis were done by EunKyo Kang, Young Ho Yun, Jihye Lee, and Jiyeon Choo. The first draft of the manuscript was written by EunKyo Kang and Young Ho Yun. All authors critically revised the manuscript. All authors read and approved the final version for publication.

Funding information This work was supported by a grant from the Korea Health Technology R&D Project through the Korea Health Industry Development Institute (KHIDI), funded by the Ministry of Health and Welfare, Republic of Korea (grant number: HC15C1391). The funders had no role in the design and conduct of the study; collection, manage- ment, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Compliance with ethical standards

Conflict of interest The authors declare that they have no conflict of interest.

Ethical approval All procedures executed in this study were performed in accordance with the ethical standards of the institutional and/or nation- al research committee and with the 1964 Declaration of Helsinki and its later amendments or comparable ethical standards. The written informed consent forms and the study were approved by the institutional review board at each hospital (IRB No. 1602-142-745). Informed consent was obtained from all participants in this study.

a Depression (Patients) b Depression (Family caregivers)

Fig. 4 Proportions of depressed patients (the Patient Health Questionnaire (PHQ-9) is used to measure the severity of depression) or family caregivers based on family caregiver’s prognostic awareness, at all three time points

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Appendix

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Fig. 5 Least square means of patients’ existential well-being (McGill Quality of Life Questionnaire) based on family caregivers’ and patients’ aware- ness of the prognosis, at all three time points

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